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Main Forums => Living With HIV => Topic started by: Jim Allen on May 12, 2017, 04:55:05 am

Title: vampires
Post by: Jim Allen on May 12, 2017, 04:55:05 am
Just donated to the vampires this morning and now waiting for my prescription to be filled.

CD4 971, UD  - wash rinse repeat in 6 months

Blood pressure 150/90  ??? caused by eating crap, answering "Am I" posters and no exercise.

In other words as with most things, nothing to do with HIV
Solution eat less crap ... No, I'm not going to exercise screw that.

Jim



Title: Re: vampires
Post by: CaveyUK on May 12, 2017, 05:04:25 am
Brilliant numbers Jim. I know you don't obsess over them like many do, but still - stoked for you.

I have the same eating crap and not exercising issues. I had planned to re-start my gym going this week but have had a week of hell (family death, gf urgently referred to breast clinic and finally broke my hand doing something insanely stupid) which has ground all best laid plans to a halt!
Title: Re: vampires
Post by: Jim Allen on May 12, 2017, 05:15:19 am
Indeed, I waited 6 months to find out my numbers, new doc mentioned it otherwise I would not have even asked or found out  ;D

Yeah, diet is a problem, and I know you like me have the curse of working in the office.
You know how it is, coffee, sweet drinks, cakes, food at the desk, food on the go, Friday pub grub and sitting in a chair all day.

Lol. Got to start doing something about it.

Quote
family death, gf urgently referred to breast clinic

My Condolences and I hope you gf is okay and its just a scare over nothing.
Take it easy.

Jim

Title: Re: vampires
Post by: Wade on May 12, 2017, 07:30:25 am
Great numbers Jim !

Except for the BP... ???  Do you have another pill now ?


PS... Cavey , you have indeed had a shitty week...my condolences as well
Title: Re: vampires
Post by: Jim Allen on May 12, 2017, 11:17:28 am
Except for the BP... ???  Do you have another pill now ?

Nah - its was a crap result last time as well but slightly less though 140/100 now 150/90
Ill see in 6 months if the BP is down or not and measure it from home a few times.

 I don't like the hospital and it means driving to Dublin so after an hours road rage to get to the hospital my guess it this + a poor diet puts the BP up,  So better diet and less rage should reduce it for the next visit I hope  ;D

Title: Re: vampires
Post by: leatherman on May 12, 2017, 12:54:09 pm
great news Jim!  ;D


exercise may not be all it's cracked up to be. LOL I've been going to the gym for an hour every day, 5 days a week, for 2.5 months. And what did I get for it? my cd4s dropped from 400 to 362 and now down to 319.  ::)

I do have to admit after staying in the low 300s for so many years, I was a little suspicious  8) of the 3 counts just above 400 that I've had in the last two years.  ;D

my BP is always up when I go to the doctor. LOL I used to get care here in a small city in South Carolina; but I switched about a year ago to a doctor up in North Carolina. (with all that ryan white quality improvement training I've gotten and all the work I've done with the Part A, B, and C quality committees, I knew I wasn't getting quality care and it was time to find a new doctor) unfortunately, it means I have to drive an hour to see the doctor - a long drive up the highway and through to the far side of Charlotte. it's posted as 55 mph going through CLT; but if you drive under 70 you're sure to be run over by a semi, or slammed into the center median by someone trying to get around your slow-ass driving. LOL Needless to say with the tunes jamming and the pedal to medal through heavy highway traffic, everything about me is elevated by the time I pull into the parking lot.
Title: Re: vampires
Post by: DANIELtakashi on May 12, 2017, 03:53:30 pm
Hi, Jim.

Great number.  I envy you.  Mine is always under 400.
Diet is a problem for me.  Junk food is everywhere - coffee, diet Coke, fast food...
I drink too much coffee everyday.

Exercise - l walk a lot, especially on weekends.
Plus l do this Tina Turner dance when nobody is watching  :D :o
https://youtu.be/hzQnPz6TpGc

Thank you for being a great moderator.
Title: Re: vampires
Post by: Ptrk3 on May 12, 2017, 04:08:14 pm
Glad to read that you are doing very well with controlling and suppressing the HIV, Jim.  Your CD4 count is outstanding!

Yes, it's good to keep an eye on the blood pressure. In the States, 150/90 would be consider Stage 1 hypertension (if that was your consistent blood-pressure reading), so not crazy high.  Your doctor will keep a close eye on things.
Title: Re: vampires
Post by: Jim Allen on May 12, 2017, 04:33:18 pm
LOL Needless to say with the tunes jamming and the pedal to medal through heavy highway traffic, everything about me is elevated by the time I pull into the parking lot.

 ;D - Yeah sounds familiar alright

Exercise - l walk a lot, especially on weekends.
Plus l do this Tina Turner dance when nobody is watching  :D :o
https://youtu.be/hzQnPz6TpGc

Tina Turner - Personally I don't have the legs for it  ;)

Yes, it's good to keep an eye on the blood pressure. In the States, 150/90 would be consider Stage 1 hypertension (if that was your consistent blood-pressure reading), so not crazy high.  Your doctor will keep a close eye on things.

Yeah, they said similar - well part of me thinks it could be worse and it is what it is. Yeah back in October, slightly healthier diet and hopefully things will be better :-)

Jim 
Title: Re: vampires
Post by: Tonny2 on May 12, 2017, 08:38:32 pm


      OJO       HELLO JIM...WOW!!!, I DIDN'T KNOW YOU HAD THOSE KIND OF NUMBERS. CONGRATULATIONS...NEXT TUESDAY IS MY TURN TO VISIT "DRACULA" AND MY ID DOCTOR, WISH ME LUCK...CUT DOWN ON THE SALT...YOU ARE A YOUNG MAN, AND YOU HAVE TO TAKE CARE OF YOURSELF, YOU HAVE TWO LITTLE ANGELS WHO NEED YOU AROUND...HUGS                                                                OJO
Title: Re: vampires
Post by: Jim Allen on May 13, 2017, 11:33:04 am
Thanks  ;) Sure things will be fine with you next week, keep us posted.
Title: Re: vampires
Post by: paintedroom on May 13, 2017, 11:41:59 am
971 ? feckin savage..that`s hollywood sign scale.
Title: Re: vampires
Post by: Jim Allen on May 14, 2017, 06:53:51 am
 ;)

Thanks, everything was grand except for the BP, thankfully.

I've only ever missed 6 dozes of meds so not too bad on the adherence side, not that the CD4's care but it keeps the VL down.

The side conversation from the HIV specialist stuck with my brain a bit this time round. She asked if i took my meds, said yes and that she talked about how there was recently an increase of people (stable, and no abuse patients) at the hospital who swear blind during the visit they are UD and still taking the meds and than the clinc having to have them called back early as the labs show VL's in the 1000's if not 10.000's and it turns out they missed more meds than admitting or could recall on the first visit  :(

I could give her a solution or insights other than suggesting stressing adherence it to patients on visits or making them bring the bottles of meds in for a count (how nanny state would that be).

Maybe its the 1 pill a day combo's that is part of the problem? As its 1 pill a day perhaps as people don't have to think about it often, they simply forget and miss it. ? I don't know.

Jim
Title: Re: vampires
Post by: CaveyUK on May 14, 2017, 09:02:17 am
Or she could of course have been exaggerating to make a point, especially for whatever reason they thought you may have been under-egging the number of doses you missed....

Seeing patients with VL's spiking into the 10,000's means either resistance and drug/combo failure or someone who has simply stopped taking their meds.

As a point of illustration - Until very recently, when the first case was found, there hadn't been a single case of anyone prescribed Dolutegravir as first line treatment who had become resistant to the drug. Now thats just one drug in a combo and It's not impossible that they have seen a sudden up-tick but I'd say it's unlikely to be down to the odd missed dose and resistance, and more because for whatever reason people are stopping their meds completely (if it's true at all). And in the days of once-a-day treatment, that is crazy if true IMO.

Given she had tied it to a point of adherence, my money is on exaggeration :)
Title: Re: vampires
Post by: Jim Allen on May 14, 2017, 12:27:46 pm
I don't know.
Why target me? 6 dozes missed since i started this stretch of treatment 4 years ago. always UD.

Quote
Seeing patients with VL's spiking into the 10,000's means either resistance and drug/combo failure or someone who has simply stopped taking their meds.

We did not get into the resistance part, this was indeed simply on people not taking meds, so adherence concerns. She was more talking about patients in general and asking what I thought, what i have heard and seen kinda way.

If you want to look at this for a logical reason it has been busier for them at the clinc, as last 4 years back to back the number of cases in Ireland has gone up and with that newer people starting treatment, so it could just her perception.  Could be the 1 pill a day thing is part of it.

Not that it bothers me i suppose, I mean people not taking their meds and having high VL's is up to them. Stupid but up to themselves, not new issue always been people like that.

Quote
As a point of illustration - Until very recently, when the first case was found, there hadn't been a single case of anyone prescribed Dolutegravir as first line treatment who had become resistant to the drug

But stopping treatment does not necessarily equal automatic resistance of course to any drug, we did not get into resistance, just adherence however it does seem Dolutegravir is particularly tough cookie. ;)

Jim
Title: Re: vampires
Post by: Jim Allen on May 14, 2017, 12:40:57 pm
I'll have to ask her if she is taking the stats.
Issue across drug lines, population groups, age etc

Jim
Title: Re: vampires
Post by: CaveyUK on May 14, 2017, 01:10:23 pm
I don't know.
Why target me? 6 dozes missed since i started this stretch of treatment 4 years ago. always UD.


Dunno. Sometimes I find these specialists can say cooky things occasionally. There may have been a local instruction to really drive home the importance of adherence to everyone, or perhaps you mentioned the 'six times' thing - meaning from start of treatment - and for a second she thought you meant six times recently so drove into her anecdote?

Or maybe she though you just looked the 'sort' and needed to be scared straight before you run off the rails :)

I know the UK rate of adherence is really good, in general. Not sure about Ireland - I suppose the religious thing over there may generate stigma which impacts adherence a bit more? Would be interesting to ask for the stats - especially as you can explain that you help run one of the worlds most prominent international discussion groups on the subject!
Title: Re: vampires
Post by: Jim Allen on May 14, 2017, 01:35:05 pm
Dunno. Sometimes I find these specialists can say cooky things occasionally. There may have been a local instruction to really drive home the importance of adherence to everyone, or perhaps you mentioned the 'six times' thing - meaning from start of treatment - and for a second she thought you meant six times recently so drove into her anecdote?

Just to clarify I did not mention the 6 times to her, I mentioned that here on the forum only.
They tend to stick to the program with me unless they want someone thing :) 
Quote
She asked if i took my meds, said yes

Quote
I know the UK rate of adherence is really good, in general. Not sure about Ireland - I suppose the religious thing over there may generate stigma which impacts adherence a bit more? Would be interesting to ask for the stats - especially as you can explain that you help run one of the worlds most prominent international discussion groups on the subject!

Yeah last time i read on the UK specific it was in 2015 (ill have to dig it out) and it had 10%+ non adherence at the time, not sure if that has changed - I think for the UK the real question is, will the number be increasing? The NHS move to switching patients to older drugs over the next years, sometimes meaning a larger pill burden will this increase any non-adherence?  - Only time will tell.

But yes could be a number of local reasons/factors I mean if you look at that report the other day on "Adherence to Antiretroviral Therapy and Virologic Failure A Meta-Analysis"  https://forums.poz.com/index.php?topic=66234.0

I am sure there are differences between nations and local influences such as culture that plays a part.

Jim
Title: Re: vampires
Post by: CaveyUK on May 14, 2017, 02:12:13 pm
last time i read on the UK specific it was in 2015 (ill have to dig it out) and it had 10%+ non adherence at the time, not sure if that has changed

A bit higher since then I think...The 2016 article here http://www.aidsmap.com/Promising-trends-continue-in-UK-diagnosis-and-treatment-rates/page/3089185/ cites :

"Last year, 96% of people who accessed HIV care was on treatment. This is a significant rise from 90% in 2014 and is likely to reflect the change in UK treatment guidelines last year to recommend treatment for all on diagnosis. Of those, 94% were virally suppressed (89% of all in care). "

Quote
- I think for the UK the real question is, will the number be increasing? The NHS move to switching patients to older drugs over the next years, sometimes meaning a larger pill burden will this increase any non-adherence?  - Only time will tell.

I'm not sure the NHS are 'switching to older drugs' per se. At least not yet. There is the anomaly of the proposed switch of everyone on Dolutegravir to Raltegravir which is a bit perplexing, but would at least be in the same (fairly modern) class of drug. They are also looking to start first-line treatment with Efavirenz which is cheaper but not ideal and is counter to the UK guidelines, but other drugs can be prescribed if there is a need to on a patient by patient basis. The big change with the NHS appears to be the switch to generics where available, which will indeed increase the pill burden for many as you say, but I'm not convinced that having to take 2 or 3 pills rather than one will make that much difference if it is still once-per-day. Annoying yes, and it takes away the illusion of taking just one drug, but would it stop someone adherent now on 1 pill to miss doses? I'm not sure - I guess we will find out.

The depressing thing with the NHS approach is that after years of pushing ahead with the latest and greatest medical advances, it's the first sign of cost being king and a wind-back in drug availability of the latest advances. Perhaps the normalisation of HIV and the news that it can be so well controlled is a key driver in all this. I agree with the use of generics personally, but don't like the news about Dolutegravir and do worry where it may all lead. Especially if the good UK adherence % does end up being compromised as a result.
Title: Re: vampires
Post by: OneTampa on May 14, 2017, 04:14:20 pm
I have 99% adherence. Just had comprehensive lab work done. Will get results in about 2 weeks.

Should be interesting given that I am on a few more generics given my health plan pharmacy switch this year.
Title: Re: vampires
Post by: Jim Allen on May 14, 2017, 04:33:40 pm
"Last year, 96% of people who accessed HIV care was on treatment. This is a significant rise from 90% in 2014 and is likely to reflect the change in UK treatment guidelines last year to recommend treatment for all on diagnosis. Of those, 94% were virally suppressed (89% of all in care). "

Being UD on measurement or the measurement of the total on treatment, is not quite the same as adherence rate. Viral suppression under those on treatment in 2014 was about 87%. So only a 2% increase in 4 years.  The adherence of 95% under the total on treatment i suspect will have changed little, that's good in a way 90% ish adhering to 95%+ is okay. 100% would never be reached, that's just the human factor of course. :)

Yeah, generics meds makes sense, that part of it i get however not if it means increased pill burden or not advancing treatment options. Let me put it like this how long will the freeze on newer meds be?

I know the changes to 1 pill a day was "promoted" in a lot in clinics as easier management. In any case we will see the impact of the change in a few years from now or not i suppose, time will tell.

Quote
but don't like the news about Dolutegravir and do worry where it may all lead

Indeed, and part of me does wonder if in time, they will change their minds on this move once more feedback from clinics and specialists has been voiced back.

Another time will tell item.

Jim




 







Title: Re: vampires
Post by: Wade on May 25, 2017, 09:46:43 am
Have to admit I've miss a few dosses here and there, i visited the vampire last week and all is well . Still UD and CD4s are in mid 500s...all is well.

I have never fretted over missing a dose, and it is not a habit...life happens sometimes  :)
Title: Re: vampires
Post by: Jim Allen on October 20, 2017, 06:36:36 am
6 months later, Just donated to the vampires this morning and now waiting for my prescription to be filled.

CD4 640, UD  ... Lost 300 CD4's I blamed the recession hahaha. ;D

No drama, wash rinse repeat in 6 months
Title: Re: vampires
Post by: Jim Allen on October 21, 2017, 08:25:39 am
Finally at my laptop today so updating this.

Nothing much, usually condom and safer sex speach. Kindey and liver results excellent, they have been improving ever since I stopped drinking and smoking.

The only other thing was hepatitis b vaccine. New doctor in the clinic brought it up that it's not taken 3x3 and no luck. Anyhow despite being important I'm not in the mood for a 4th round of 3 jabs, so we decided to leave it.

Otherwise all good.

Jim
Title: Re: vampires
Post by: daveR on October 21, 2017, 08:52:28 am
Hi Jim

I have had 3 attempts at the hep B vaccination and it has not worked for me yet. The doctor said it does fail to take in some people, even the latest version of it. This was before I tested positive and my ID Dr doesn't seem bothered about it now. I decided to just leave it.

Dave
Title: Re: vampires
Post by: LeftyBowler300 on October 22, 2017, 12:59:59 pm
You guys and your high CD4's  ::)

Donate plz  ;D
Title: Re: vampires
Post by: Jim Allen on October 22, 2017, 03:40:57 pm
Lol.

Ill send them to you, on the way. :) Word of warning mine tend to be lazy bunch of bastards, just feed them pizza and sugar when you expect work from them.

Jim 
Title: Re: vampires
Post by: Jim Allen on September 07, 2018, 06:40:44 am
Just back from latest donation  ;D

3 hour wait
10 mins bloods
4 mins consultation

CD4's 800
VL suppressed.
Kidneys , fine
LDL, fine

Neuropathy, agreed to increase "pregablin" dosage. I've been increasingly in discomfort over the past 3 months or so but nothing to panic about.

Was asked about switching Doc " would you like or have you thought about it?" Me "No thank you, ill let you know when" Doc " okay, just know its not an issue to switch if you want"

Another 6 months of "Truimeg" script & 6 months in stock already. ;)

Jim
Title: Re: vampires
Post by: Loa111 on September 07, 2018, 09:03:33 am
Awesome CD4 numbers. Iím envious  :)
You recovered from a very advanced case too?

Vincentís hospital have a very efficient Id dept.. rarely more than 30+ min wait.
Title: Re: vampires
Post by: CaveyUK on September 07, 2018, 09:18:21 am
Great numbers Jim.

My last CD4 test was done over a year ago now (July 2017 - was 552). At my latest visit, my doc said she was waiting another six months until January and then she will do one, but assuming I am still UD or don't have some terrible illness, her plan is to never ever ever do one again after that!

In some ways I'm not that bothered. The anxiety around if they go up or down, or how much they go up, can sometimes be a bit all consuming around the time of the tests, despite the knowledge that once you are UD and they are out of the danger zone, CD4s are largely meaningless. But still....NEVER...!?!?

Title: Re: vampires
Post by: Tonny2 on September 07, 2018, 10:34:19 am


      ojo.     CONGRATULATIONS JIM, I'm sorry about your pain, I know what it is to live with all the hubs if pains there are in one condition, do I make sebse!?. If someone wants to know about the diferent kind of pains there are, ask someone who is living with neuropathic pain.. I gave up taking pain medications for my neuropathic pain, I guess, I've learned to live with it as I did learn to live with "Pancho" (hiv), my most faithful partner, always there, he doesn't care how much I hurt him, he never goes away..."Pancho" and I, congratulate you for those 800 soldier's, keep up the good work, in general.. hugs.           ojo
Title: Re: vampires
Post by: leatherman on September 07, 2018, 10:35:28 am
CD4s are largely meaningless. But still....NEVER...!?!?

the current US guidelines are:
After 2 years of ART, VL consistently suppressed and CD4 consistently 300-500:
Time between viral load test can extend to every 6 months for patients with consistent viral suppression for >=2 years.
With the cd4 test done every 12 months

After 2 years of ART, VL consistently suppressed and CD4 consistently >500 cells/mm3:
the CD4 test is Optional


https://aidsinfo.nih.gov/guidelines/html/1/adult-and-adolescent-arv-guidelines/458/plasma-hiv-1-rna--viral-load--and-cd4-count-monitoring
"Table 4. Recommendations on the Indications and Frequency of Viral Load and CD4 Count Monitoring"
http://hiv.ucsf.edu/docs/hiv_monitoring_guideline.pdf
"Table. Summary of HIV-specific routine laboratory monitoring" (pg 5)
Title: Re: vampires
Post by: Jim Allen on September 07, 2018, 11:28:45 am

Thanks Tony, appreciate the thoughts.

I've tried lots of pain meds over years it was all temporary, for neuropathic pain like you hint towards learning to live with it is part of getting on.  That said I've had a really good run of near pain free since July 2016 on
 Pregabalin so hopefully the dosage adjustment will get me back to a comfortable pain level.

Hugs jim
Title: Re: vampires
Post by: Jim Allen on September 07, 2018, 11:35:36 am
Optional, sure i can imagine that bejond the 2 years there will be times a doc will still like to run a CD4 count, like post switching meds or during more severe illness etc, however stable patient its a rather pointless number to run.

Take mine drops 300 and than bounces back up the next time, its like a yoyo and indicates nothing much.
Title: Re: vampires
Post by: Jim Allen on September 07, 2018, 11:58:47 am
Awesome CD4 numbers. Iím envious  :)
You recovered from a very advanced case too?

Vincentís hospital have a very efficient Id dept.. rarely more than 30+ min wait.

St'Vincent hospital ... Posh area on the south side.   ;)
I'm at the Mater Hospital, only because I dislike St james's  so much. Lol

Yeah, I was pretty sick when I started treatment, that said a lot of people here were far worse than me, and they are doing equally fine if not even better.

Large part is being adherent to the meds,  treating any underlying things that have been allowed to crop up, particularly in the first year and, giving your body time to heal.

After that initial stage asides from remaining adherence to treatment its, I think mainly just about having a positive mindset about life and oneself. Its not easy for everyone but look that is what works for me at least  :)

The CD4 counts are rather irrelevant once you are stable and UD, its not a measurement of health as the gents more or less pointed out.

Jim
Title: Re: vampires
Post by: Tonny2 on September 07, 2018, 01:01:49 pm

Thanks Tony, appreciate the thoughts.

I've tried lots of pain meds over years it was all temporary, for neuropathic pain like you hint towards learning to live with it is part of getting on.  That said I've had a really good run of near pain free since July 2016 on
 Pregabalin so hopefully the dosage adjustment will get me back to a comfortable pain level.

Hugs jim


    ojo.   Hi asain Jim...I like you, tried all kind of meds to treat neuropathic pain, and I also had some relief I even had to mix it with Vicodin. The only medication that helped me for a while was nortriptyline combined with Vicodin. I have been living with pain since 1997. I tried the pregabalin, I do not like it because, as you know, you feet and legs are numb, and with this medication I don't feel my legs at all, making my walking uncomfortable and and unsafe... I'm glad that you are finding relief with this medication, good for you... I admire your dedication to these forums and the wisdom them of the words you offer to all of us...more hugs.                        ojo
Title: Re: vampires
Post by: MadDog125 on September 07, 2018, 01:35:52 pm
Guys I'm a total law breaker.  I'm gay and I never go to a gym.  I sorta make up for it with a physical job.  As for diet pretty good but I have been known to take my meds with monster😊  Quick question when did you go from every three months to six?  Was it time or blood numbers based?
Title: Re: vampires
Post by: Archimexican on September 07, 2018, 02:05:32 pm
Wow, I didnít know you were very sick before treatment. Congratulations on your numbers and thank you for the support and all the work you do :)
Title: Re: vampires
Post by: Jim Allen on September 07, 2018, 02:55:38 pm
Guys I'm a total law breaker.  I'm gay and I never go to a gym.  I sorta make up for it with a physical job.  As for diet pretty good but I have been known to take my meds with monster😊  Quick question when did you go from every three months to six?  Was it time or blood numbers based?

I work in an office and eat fast food & MacDonald, never worked out in my life. That said I like girls.

Anyhow moving from 3 to 6 months took I while for me, took me some time to go from 1 month to 3 months.

I suspect average is after having stable results they tend to move to 6 months after finishing the first year of treatment. It will vary per patient and per clinic.

I was a very bad patient  ;D

Edit. I was on a 6 weeks clinc visits, not monthly before going to 3 months
Title: Re: vampires
Post by: MarkintheDark on September 07, 2018, 04:43:41 pm
Oh, y'all are a bunch of amateurs. :D I feed the vampires 3-4 tubes/month in the study and I....*klunk*

[why am I on the floor?]
Title: Re: vampires
Post by: MadDog125 on September 07, 2018, 06:02:40 pm
I have to say I feel guilty hearing some of the waits and such you guys have experianced.  I go in about a week ahead of my appointments with my I'd Doc.  I've never waited more than ten minutes.  Chase Brexton is a series of clinics in the mid atlantic US.  They have been very good to me to date. 

Sorry to hear about the chronic pain.  I wish there were a more permanent fix.  Good news is medical science is advancing like crazy anymore. 
Title: Re: vampires
Post by: Jim Allen on September 10, 2018, 06:41:12 pm
10 mins, wow.

Its not all bad waiting 3-4 hours a visit I am sure sounds quite a luxury compared to others, also gives me time to read the newspaper and do a bit of people watching.

 
Title: Re: vampires
Post by: Loa111 on September 11, 2018, 04:19:39 am
Where I go, there's always registrars training up in the ID field. When I see a new one, they tend to take the case from the beginning again, which can be a bit frustrating with the questions, but then I realised that they also give me a really good physical examination each time. So it thought...hmmmm....this is like getting a free medical check up every month, nothing a bad thing at all! Often the head ID doc will come in & give me a quick look too. Being an advanced case has its advantages!

I actually dreaded going to the clinic the first few times, as i saw it as a place of terrible bad news for me, so now I try to enjoy the visit, get a coffee, do a bit of people watching too, nothing like a busy hospital for people watching, bit of variety to my normal schedule, try to flirt with the stern middle aged nurse LOL.  ;D
Title: Re: vampires
Post by: CaveyUK on September 11, 2018, 04:21:17 am
I never have a wait, or 5-10 mins at the most. I'm grateful to be honest, as I usually just want it done and get out of there :)
Title: Re: vampires
Post by: paulT on September 15, 2018, 01:27:53 pm
Amazing numbers Jim! It's just a great reassurance to all of us here that the treatment really works and with time CD4 will improve!
Title: Re: vampires
Post by: Jim Allen on September 15, 2018, 02:11:59 pm
Amazing numbers Jim! It's just a great reassurance to all of us here that the treatment really works and with time CD4 will improve!

Thanks Paul.

How's the sleeping going for you? Did you managed to get some rest post heatwave?
Title: Re: vampires
Post by: Jim Allen on September 15, 2018, 02:21:38 pm
    ojo.   Hi asain Jim...I like you, tried all kind of meds to treat neuropathic pain, and I also had some relief I even had to mix it with Vicodin. The only medication that helped me for a while was nortriptyline combined with Vicodin. I have been living with pain since 1997. I tried the pregabalin, I do not like it because, as you know, you feet and legs are numb, and with this medication I don't feel my legs at all, making my walking uncomfortable and and unsafe... I'm glad that you are finding relief with this medication, good for you... I admire your dedication to these forums and the wisdom them of the words you offer to all of us...more hugs.                        ojo


Hi Tony,
Yeah its true that pregabalin at least for me does leave an additional numbness to the limbs, it does sort 80% of day to day pain in my experience, the additional numbness "dead leg" feeling is particularly for me the right leg witch is the one effected by the nurve damage.

Sorry to hear nothing has really worked for you, I understand the pain and its certainly not an easy thing to live with.
Title: Re: vampires
Post by: paulT on September 17, 2018, 02:35:42 pm
Thanks Paul.

How's the sleeping going for you? Did you managed to get some rest post heatwave?


Sleeping much better, thanks! It was most probably hot weather!
My recent results UD and CD4 308 (after 11 weeks up from 238). Not sure if I should celebrate tbh. Was hoping for a bigger jump but hey you're such an inspiration so hopefully it will get better.
Title: Re: vampires
Post by: Jim Allen on September 17, 2018, 07:01:13 pm

Sleeping much better, thanks! It was most probably hot weather!
My recent results UD and CD4 308 (after 11 weeks up from 238). Not sure if I should celebrate tbh. Was hoping for a bigger jump but hey you're such an inspiration so hopefully it will get better.

Glad to hear the sleeping is much better, being sleep deprived is the horrible.
Great on the UD, and don't worry about the CD4's they could well be far more efficient than mine, and its not a measurement of overall health. ;)
Title: Re: vampires
Post by: Jim Allen on March 08, 2019, 04:56:02 am
Just back from latest donation  ;D

3 hour wait
10 mins bloods
4 mins consultation

CD4's 800
VL suppressed.
Kidneys , fine
LDL, fine

Just attended the vampires this morning.

First 10min:

CD4 848, 40%
VL suppressed. (Not detected, on lab report)
Kidneys , fine
LDL, fine
All other bloods fine.

Blood pressure 168/90  ::) I explained that my legs is fucking killing me at the moment hence it's up, due to pain need to see GP again regarding pain management adjustments for the neuropathy

Was due renew Prevnar vaccination (pneumococcal) however they are out of stock, agreed to do this in 6 months time.

Offered free STI screening, last one was 2'5 years ago (I know I'm bad) so that took 5 mins total

Just waiting now for 6 more months worth of Truimeg at the hospital pharmacy

Jim


Title: Re: vampires
Post by: Jim Allen on March 11, 2019, 06:48:34 am
So follow up with the GP this morning, BP 100/165 & 100/145.

Because whenever I visit them i keep having higer BP readings then they like over the past 2 years on Friday they will fit me with a 24 hour monitor to have a correct measurement of what's going on.

Told the GP I'm happy to do it, sure why not, but I'm pretty confident it's fine

Jim
Title: Re: vampires
Post by: beanstalk on March 12, 2019, 05:32:59 pm
Just waiting now for 6 more months worth of Truimeg at the hospital pharmacy


I wish my hospital would give us the 6 bottles. Whenever I try to take more than one the farmacists just start saying they are low on stock blablabla (even tho I have the prescription for the 6 months). I'm thinking of when I actually have to go abroad for work to just tell them that if they do not give me the bottles I'm going anyway and it's not my problem if they get a pandemic when I come back with a raging sexual appetite ::)
Title: Re: vampires
Post by: fabio on March 13, 2019, 01:39:38 am
For one moment I thought it was a "cult" of vampires 👿.
Nice numbers. I gave blood to the vamps a week ago,but they didn't tell me my results cuz they take 2 days to look at them. In general they told me I'm a good boy for taking meds and that it's showing.
Title: Re: vampires
Post by: Jim Allen on March 13, 2019, 03:26:04 am

I wish my hospital would give us the 6 bottles. Whenever I try to take more than one the farmacists just start saying they are low on stock blablabla (even tho I have the prescription for the 6 months). I'm thinking of when I actually have to go abroad for work to just tell them that if they do not give me the bottles I'm going anyway and it's not my problem if they get a pandemic when I come back with a raging sexual appetite ::)

Being limited to a monthly supply and having to come back each time hmmm that sucks, i know this is common in some of the less fortunate locations of the world but, i did not know that its a problem in Lisbon.

Is it like this everywhere in Portugal? Perhaps something to start making noise about though the ASO?
Though I agree its worth telling them you need to travel for work and hence require your prescription to be filled.

BTW How are you doing ?

Title: Re: vampires
Post by: leatherman on March 13, 2019, 06:25:53 am
i know this is common in some of the less fortunate locations of the world
like America where people who receive drug assistance from the Ryan White ADAP (aids drugs assistance program) and many others on private insurance who can only get 1 fill per month.  :(
Title: Re: vampires
Post by: Jim Allen on March 13, 2019, 06:47:45 am
If I'm blunt it's one of the places that jumped to mind. As an outsider like a lot of things about the US, but how health care is managed would not be one of them

I know within the EU it varies as well, last time I had meds in The Netherlands is was 6 months script, but collect 3 months max at a time as example, being limited to a monthly supply like the Lisbon within the Europe feels pretty limiting.

Although in Ireland there is no postal service for meds (would fucking love it) and the only pharmacy that carries HIV meds for treatment are located in the major hospitals,  prehaps that factors into larger allowances

For one moment I thought it was a "cult" of vampires 👿.
Nice numbers. I gave blood to the vamps a week ago,but they didn't tell me my results cuz they take 2 days to look at them. In general they told me I'm a good boy for taking meds and that it's showing.

Not sure if I would call the heatlh service a "cult" but this did make me laugh  :)
Title: Re: vampires
Post by: leatherman on March 13, 2019, 01:09:19 pm
Although in Ireland there is no postal service for meds (would fucking love it)
when I first starting using this doctor across the state line, the pharmacy would mail my meds to me every month. Except for the times I was up in town at some health dpt quality management meeting or a client meeting at my clinic, and then I would pick up in person. But the pharmacy got busted (and sadly had to pay a fine) for not having the right licenses to mail medications across the state line. Somehow 30 miles apart in the same nation is a big deal.  ::) It's been a year and a half that I've been waiting, but finally, as a great birthday present to me, they got things worked out and have mailed my meds to arrive tomorrow!

I saw the vampires not long ago. I think this was my 415th blood draw in all these years. My doctor is all atwitter because my cd4s dropped when they've been finally climbing towards 500. But I lol-ed at him when he wanted more blood for a do-over test. I lived with a 250 average for nearly 2 decades so I'm pretty sure that's around my normal and the 465 was the abnormality. LOL
Title: Re: vampires
Post by: beanstalk on March 13, 2019, 05:12:08 pm
Being limited to a monthly supply and having to come back each time hmmm that sucks, i know this is common in some of the less fortunate locations of the world but, i did not know that its a problem in Lisbon.

Is it like this everywhere in Portugal? Perhaps something to start making noise about though the ASO?
Though I agree its worth telling them you need to travel for work and hence require your prescription to be filled.

BTW How are you doing ?

It doesn't happen in all the hospitals, I heard Hospital Egas Moniz for example is giving more than a month. I'm in a more central hospital (Curry Cabral) and they probably have much more demand. By the way, there's a lot of talk in the news right now about some Trivicay that disappeared (stolen) from our storages (https://observador.pt/2019/03/12/desapareceram-mais-de-60-unidades-de-medicamento-usado-no-tratamento-do-vih/ (https://observador.pt/2019/03/12/desapareceram-mais-de-60-unidades-de-medicamento-usado-no-tratamento-do-vih/)).

I'm doing OK. I got an infection of Campylobacter Fetus from something I ate at a restaurant (which is very strange since I don't even eat meat, I'm blaming undercooked eggs), spent some time at the hospital (fever, anemia, pain...) but the antibiotics worked wonders. My biggest problem right now is the red face that doesn't go away... I had my appointment with the autoimmune disease doctor in february, got blood drawn (again, a lot), but it seems there is too much demand for the doctors so I have to wait until the very last day of may. Someone told me about this ointment called Mirvaso that seems to work for people with lupus but I don't seem to be able to get it without a prescription. So here I am, waiting with a forever burning face, looking like a pikachu. Both my first HIV appointment after UD and the SLE one will be at the same time so I'll make a post by then. Next time I'll bring the pill bottle situation to the HIV doctor.
Title: Re: vampires
Post by: fabio on March 14, 2019, 05:42:41 am
Here in Greece we only get meds in the big state hospitals once every month. Thankfully they can send them on express mail and they arrive the next day,as I and probably other people,live in islands and can't access immediate meds from the hospital.
I do have to go with the ferry though every 3 or 4 months for my appointments,which I think it's better,Because nobody really knows me there and I feel more comfortable waiting on the "hall of shame" lol.
Title: Re: vampires
Post by: Jim Allen on March 15, 2019, 09:53:10 am
when I first starting using this doctor across the state line, the pharmacy would mail my meds to me every month. Except for the times I was up in town at some health dpt quality management meeting or a client meeting at my clinic, and then I would pick up in person. But the pharmacy got busted (and sadly had to pay a fine) for not having the right licenses to mail medications across the state line. Somehow 30 miles apart in the same nation is a big deal.  ::) It's been a year and a half that I've been waiting, but finally, as a great birthday present to me, they got things worked out and have mailed my meds to arrive tomorrow!

I saw the vampires not long ago. I think this was my 415th blood draw in all these years. My doctor is all atwitter because my cd4s dropped when they've been finally climbing towards 500. But I lol-ed at him when he wanted more blood for a do-over test. I lived with a 250 average for nearly 2 decades so I'm pretty sure that's around my normal and the 465 was the abnormality. LOL

Glad to hear the mail service is back up and running for you. I would love that hear but they don't even have the meds outside of the hospital pharmacy yet mainly sue to knowledge issues with pharmacy's here and insurance i was once told.

Well once you do hit the 500 ill bake you a cake  ;)

It doesn't happen in all the hospitals, I heard Hospital Egas Moniz for example is giving more than a month. I'm in a more central hospital (Curry Cabral) and they probably have much more demand. By the way, there's a lot of talk in the news right now about some Trivicay that disappeared (stolen) from our storages (https://observador.pt/2019/03/12/desapareceram-mais-de-60-unidades-de-medicamento-usado-no-tratamento-do-vih/ (https://observador.pt/2019/03/12/desapareceram-mais-de-60-unidades-de-medicamento-usado-no-tratamento-do-vih/)).

I'm doing OK. I got an infection of Campylobacter Fetus from something I ate at a restaurant (which is very strange since I don't even eat meat, I'm blaming undercooked eggs), spent some time at the hospital (fever, anemia, pain...) but the antibiotics worked wonders. My biggest problem right now is the red face that doesn't go away... I had my appointment with the autoimmune disease doctor in february, got blood drawn (again, a lot), but it seems there is too much demand for the doctors so I have to wait until the very last day of may. Someone told me about this ointment called Mirvaso that seems to work for people with lupus but I don't seem to be able to get it without a prescription. So here I am, waiting with a forever burning face, looking like a pikachu. Both my first HIV appointment after UD and the SLE one will be at the same time so I'll make a post by then. Next time I'll bring the pill bottle situation to the HIV doctor.

 >:( stealing tivicay that sucks.  I could think of much more cool drugs to steal that would have a bigger market  ;D

Sorry to hear about the rough time and the infection, yeah under cooked eggs cab be nasty although I love it when the yoke still has some softness

As for the face sounds painful and waiting till May to get results even more so, has nothing OTC helped reduce the issue?

Hope you feel better soon.

Here in Greece we only get meds in the big state hospitals once every month. Thankfully they can send them on express mail and they arrive the next day,as I and probably other people,live in islands and can't access immediate meds from the hospital.
I do have to go with the ferry though every 3 or 4 months for my appointments,which I think it's better,Because nobody really knows me there and I feel more comfortable waiting on the "hall of shame" lol.

So Greece (no offence) can get it shit together and Ireland can't   >:( Typical.

 
Title: Re: vampires
Post by: Jim Allen on March 15, 2019, 09:55:13 am
So follow up with the GP this morning, BP 100/165 & 100/145.

Because whenever I visit them i keep having higer BP readings then they like over the past 2 years on Friday they will fit me with a 24 hour monitor to have a correct measurement of what's going on.

Told the GP I'm happy to do it, sure why not, but I'm pretty confident it's fine

Jim

Well got it fitted, and its pumping away every 15 mins of so, checked it once to look 161/108 .. I've decided to not look at it and to stop jerking off for today ;D
Title: Re: vampires
Post by: leatherman on March 15, 2019, 10:10:09 am
stop jerking off for today
stop taking your bp WHILE your doing it ;)
Title: Re: vampires
Post by: Jim Allen on March 15, 2019, 10:12:50 am
stop taking your bp WHILE your doing it ;)

lol. See the thing is the Nurse said don't take it off and do what you normally do and she would call if the readings get too high

Ohhh ... I just had a thought now  ;D I will not share it
Title: Re: vampires
Post by: fabio on March 15, 2019, 02:35:43 pm
Oh they don't have their shit together hahaa,but at least they do on us and cancer patients. Plus I'm in a university hospital,they invest a lot in these hospitals and the army hospitals,so the services are good.
However all other hospitals are quite shite......
Also we are quite a small country and shipping a box of meds next day is the easiest thing ever. All because the saints of the wards secretaries.
Title: Re: vampires
Post by: Jim Allen on March 19, 2019, 11:22:40 am
So got the results of the 24 hours BP thingy
Averages:

143/83 - Daytime
132/71 - Nighttime

Edit: it's better results than I expected

Not too high but they want me to come in on Thursday to chat and go over the results.  From what i gather talking to the nurse they are more concern that it was not dropping (lowering) more during the night.

Jim
Title: Re: vampires
Post by: Jim Allen on March 21, 2019, 06:18:25 am
So met with the doctor this morning.

Long story short day and night my blood pressure is off with spikes even at night off the charts. ( 210/x)

This combined with family history and my own medical  past they would start me on blood pressure meds today but they are reaching out to my HIV doc fist to sync up and to check what treatment options are best  :( I had to listen to the no salt, eat healthier speech as well of course.

Oh well not happy about it but it's not the end of the world, in fact without living with HIV I would not have known about this issue so in way I am Lucky I can do something about it earlier rather than later 😉

Best Jim
Title: Re: vampires
Post by: Jim Allen on March 21, 2019, 12:39:07 pm
So met with the doctor this morning.

Long story short day and night my blood pressure is off with spikes even at night off the charts. ( 210/x)

This combined with family history and my own medical  past they would start me on blood pressure meds today but they are reaching out to my HIV doc fist to sync up and to check what treatment options are best  :( I had to listen to the no salt, eat healthier speech as well of course.

Oh well not happy about it but it's not the end of the world, in fact without living with HIV I would not have known about this issue so in way I am Lucky I can do something about it earlier rather than later 😉

Best Jim

So they gave me "Perindopril" to take for the blood pressure, sure it will be grand

Jim
Title: Re: vampires
Post by: leatherman on March 21, 2019, 02:50:56 pm
my hubby and I are taking lisinopril. While he had the mild "it feels like you have to clear your throat" coughing side effect at first, it didn't have the ED issues of some of the other meds he tried first. I've had no issues with it....except I had to have the doctor cut the dosage. It was getting so that every time I stood up I almost passed out. So I went from hardly any hypertension to hypotension  ::) ::)
Title: Re: vampires
Post by: Jim Allen on August 13, 2019, 10:20:21 am
So I changed Blood pressure meds.  It was giving me a dry cough not to mention I think it was messing up my sleep & giving me a feeling my heart was racing (It was not, just a mental thing).

Switched to Olmesartan 10 days ago and the coughing is gone and, sleep pattern back to normal & no more racing heart feeling.

Jim
Title: Re: vampires
Post by: Jim Allen on August 13, 2019, 10:28:04 am
P.s

Next check up with the vampires is the 23rd of Aug, List of things to do include this round

- Discussing pain management (Need to up my meds)
- Pneumococcal vaccine
- Run thyroid panel (GP is concerned. i'm not)

In addition still on the waiting list to have a biopsy of the "rashes" the GP is panicking about at this stage, although i'm hoping the ID Consultant might have an idea just by looking given his extensive experience   

Jim
Title: Re: vampires
Post by: wardp on August 13, 2019, 12:53:43 pm
Hi Jim how often do you get your vaccination?
Title: Re: vampires
Post by: leatherman on August 13, 2019, 01:33:25 pm
So I changed Blood pressure meds.
i kind of changed mine too :) I stopped taking it at all. :D BP has been fine and I don't almost pass out just by standing up (which was making yard work at the new house this spring quite an adventure)

i also had to quit the gabapentin for the PN in my feet. It just made me too fuzzy and doped up. I've lived all these years with my feet feeling like I'm walking on hot sand (thanks zerit  >:( ), so I guess I'll just keep visualizing beaches.

rashes?! ugh. is it itchy? everything makes me itchy.  ::)
Title: Re: vampires
Post by: Jim Allen on August 13, 2019, 02:51:51 pm
Quote
rashes?! ugh. is it itchy? everything makes me itchy.  ::)

Nah just ugly and freaking the GP out a bit ... I'm not as concerned, as stressing about it will not change it. 

Quote
kind of changed mine too :) I stopped taking it at all. :D BP has been fine and I don't almost pass out just by standing up (which was making yard work at the new house this spring quite an adventure)

"Changed" aha, dropped more like it. Well glad the BP is still fine though, do you monitor it at home? Glad you are feeling better though

Quote
i also had to quit the gabapentin for the PN in my feet. It just made me too fuzzy and doped up.

Yeah I hear that a lot from people taking Gabapentin. I'm on pregabalin so slightly different but in the same ballpark, not had too many issues myself although it makes my leg feel totally alien at times like it's not part of my body, it's preferable for me personally to deal with that instead of waking up screaming in pain during the night
Title: Re: vampires
Post by: Jim Allen on August 14, 2019, 11:57:07 am
Hi Jim how often do you get your vaccination?

Meningococcal is every 5 years booster (could be shorter time-frame though I don't really recall)  and Pneumococcal they want to do again due to my health. Last two times they were out of stock when i was finally in the chair waiting the labs so fingers crossed this time.

The other is just the flu vaccine yearly, I tried the Heb B vaccine, 2 x the 3 times 1 shot and both attempts failed.
Title: Re: vampires
Post by: Jim Allen on August 23, 2019, 05:25:17 am
So ...

Hair loss;
Doc confirmed my assessment of "alopecia areata " of course not HIV related but sure another little issue why not.

Night sweats & coughing
I think it was the Ace inhibitor, GP agreed and so does the Doc, but getting additional bloods & chest x-ray to rule out TB. If I was wrong I'll be called back within a week

Rash on neck
I'm on a 2-year waiting list for biopsy  :o >:(
Although the Doc took a photo and will talk to a dermatologist. He is not sure what it is but said he should be able to skip the wait and get me seen within a month

HIV

VL - Suppressed
CD4 - 1140 and @42%

All other labs within the normal range.

Comments were " Your HIV is suppressed that's the main point as far as HIV goes, now as for anything else that pops up in life deal with it as it happens"   

;D





Title: Re: vampires
Post by: Jim Allen on November 09, 2019, 04:42:44 am
Just as an update.
Few months after switching to Olmesartan and all is well, happy days. BP is good and side effects from the Ace inhibitor are all gone, still, hair issues but whining about that serves no purpose and there are better things to worry about, also perhaps I am just about old enough not to care.

On the rash, no panic, know what is needed and got the waiting list shorted from 18 months to an appointment in Feb & April after having a word with my HIV consultant  ;) So all good.
Title: Re: vampires
Post by: Jim Allen on February 07, 2020, 04:49:58 am
Was visiting the vampires today

VL - ND (not detected)
CD4 - 670 was 1140 in Aug ..  who cares.

Also, STI screening all okay.

Shorter than normal return, back to 3 monthly appointments instead of 6 months to monitor my health closer.
Title: Re: vampires
Post by: fabio on February 07, 2020, 05:56:41 am
Those are really nice stats! I feel,by saying that,that we are Pokemon or something haha.
I have an appointment with the vamps at 26 of this month. Gonna ask about my whole "work in healthcare" opportunities too.
Also I want to note that I'm very happy everyone is doing great in their labs!
Title: Re: vampires
Post by: Jim Allen on February 07, 2020, 11:51:35 am
Yes, cholesterol, liver, etc etc etc were all within normal range as well, nice to have stable enough results

Well hopefully you get the information you need on the 26th.

Title: Re: vampires
Post by: Loa111 on February 07, 2020, 12:01:00 pm
Are they offering STI checks at your clinic along with the routine hiv work? They asked me my last appointment at Vincentís if I wanted an STI check too as itís a new thing theyíre offering.
I said sure but then they forgot to do it lol.
Title: Re: vampires
Post by: Jim Allen on February 07, 2020, 12:33:08 pm
Hiya,

Yeah, they offer it along with the routine bloodwork. 

The doc asked me if I had had any causal sex, told her the chance would be a fine thing, but, I'm too tired for that carry-on.

Jim
Title: Re: vampires
Post by: Jim Allen on April 08, 2021, 12:50:33 pm
Visited the clinic this week.

VL - ND (not detected)
CD4 - 610
Liver, kidneys, cholesterol etc all perfect.  :)

Blood pressure was high (152/80 and 151/80) but I ran out of blood pressure meds for a month so no surprise. I will be back in 4 months time for HIV and asked them to test for diabetes.

Tomorrow I have sugary to remove a cyst in my face. Should be grand and it should leave a minor scare less than an inch. (2.5 cm)
Title: Re: vampires
Post by: fabio on April 08, 2021, 01:17:23 pm
That's great, I haven't had the chance to do anything whatsoever,since my hospital is full of cases and the check ups are closed for now. All hospitals here are flooded and can't do much about it. I will have to wait though,I cant do much either .
Title: Re: vampires
Post by: Jim Allen on April 08, 2021, 01:39:25 pm
That's great, I haven't had the chance to do anything whatsoever,since my hospital is full of cases and the check ups are closed for now. All hospitals here are flooded and can't do much about it. I will have to wait though,I cant do much either .

Yeah, heard the same here for a lot of people. 
 
I've just been lucky in timing this last 12 months. I got sick, was on priority lists or had things planned when there were quiet moments in the Covid pandemic. 8 hospital visits, of this, had 3 for minor surgeries, 1 emergency stay and the rest was check-ups etc.

Nearly forgot I also entered that flu shot study and that had a follow-up visit as well.
Title: Re: vampires
Post by: leatherman on April 08, 2021, 02:52:51 pm
Visited the clinic this week.

Tomorrow I have sugary to remove a cyst in my face.
we saw our doc on monday. the doc, my hubby and myself have all had birthdays since we were last at the clinic, so now we're all old.  ;D I hate that my doctor is a couple years older than me. It makes me worry just how long it'll be before we have to get a new doctor.

I was very happy to see that my cd4 was back below 500.  ;D Over the last year and a little while, my cd4s climbed above 500 (680, 791, 600) which was completely out of the ordinary. I had been pretty surprised after 27 years of meds to see my cd4s creeping into the 400 range a couple years ago; but >500 seemed like incorrect lab results. Certainly the 791 wasn't right.  ::) So I was glad to see my cd4s go back to 465, even though that seems a tad high for the normal 350-400 I've had for the previous 10 years.

Within the last few months, I have a small cyst appear at the corner of my left eye. My doctor is sending me to an ophthalmologist next week to get it removed.

congrats on your numbers and good luck with the surgery!
Title: Re: vampires
Post by: Jim Allen on April 08, 2021, 04:02:47 pm
Quote
we saw our doc on monday. the doc, my hubby and myself have all had birthdays since we were last at the clinic, so now we're all old.  ;D I hate that my doctor is a couple years older than me. It makes me worry just how long it'll be before we have to get a new doctor.

:o Shit, I never thought about that. My doc has at least 20/25 years on me, so it can't be that long before he retires.

Belated happy birthday though.

Quote
I was very happy to see that my cd4 was back below 500.  ;D Over the last year and a little while, my cd4s climbed above 500 (680, 791, 600) which was completely out of the ordinary. I had been pretty surprised after 27 years of meds to see my cd4s creeping into the 400 range a couple years ago; but >500 seemed like incorrect lab results. Certainly the 791 wasn't right.  ::) So I was glad to see my cd4s go back to 465, even though that seems a tad high for the normal 350-400 I've had for the previous 10 years.

Congrats on the 465.

Kinda understand the feeling, when mine was rocking the 900 to 1100+ I suspected something was wrong, turned out I was right so I'm glad the last two times to see mine back at the 600's as that would be normal for me.

Quote
Within the last few months, I have a small cyst appear at the corner of my left eye. My doctor is sending me to an ophthalmologist next week to get it removed.

congrats on your numbers and good luck with the surgery!

Thanks and sorry to hear about the cyst, hope everything goes well with removing it. I was offered to leave mine alone as its deeper in but I opted to cut it out, no way I want to leave it and risk a repeat of what happened last year when my face got infected.






Title: Re: vampires
Post by: leatherman on April 08, 2021, 07:39:17 pm
Thanks and sorry to hear about the cyst, hope everything goes well with removing it. I was offered to leave mine alone as its deeper in but I opted to cut it out, no way I want to leave it and risk a repeat of what happened last year when my face got infected.
I had a little bump in the middle of my back some years back. It probably started as a pimple long ago and seemed of little consequence. But then it got a little larger and I decided to have it looked at. Had a little surgery and it turned out to be the size of a pecan....even though it was barely a bump from the outside. Now 3 yrs later I still have a small divot in the center of my back that has never filled in.

Yes, you live and you learn. One serious health issue can sure teach you to never let that happen again. LOL pcp pneumonia? bactrim for a decade, no problems. LOL Infection in your face? get rid of the cyst NOW. LOL
Title: Re: vampires
Post by: TGun on April 09, 2021, 09:02:26 am
just food for thought Jim,, as a long time health care provider myself, i can assure you the skill set on most people actually doing your blood pressure on a MD visit here in the USA is marginal at best.  If they used the manual machine where they are required to use a stethescope, they may be somewhat inaccurate numbers TBH.  the round number or 150/90 is the first red flag.  Also if the BP cuff is slightly too small for the circumference of your arm it will also give you a higher reading than accurate.  I wouldn't worry unless you've had multiple visits with similar numbers.
Title: Re: vampires
Post by: Jim Allen on April 09, 2021, 10:01:52 pm
just food for thought Jim,, as a long time health care provider myself, i can assure you the skill set on most people actually doing your blood pressure on a MD visit here in the USA is marginal at best.  If they used the manual machine where they are required to use a stethescope, they may be somewhat inaccurate numbers TBH.  the round number or 150/90 is the first red flag.  Also if the BP cuff is slightly too small for the circumference of your arm it will also give you a higher reading than accurate.  I wouldn't worry unless you've had multiple visits with similar numbers.

Thanks. No, it's not the old stethoscope it's what I call "All in one trolly" that nurses are attached to. Anyhow, my own fault for stopping the meds, at home I was getting 151/91 but as I restarted my olmesartan it should start to level off again within 2 weeks.

Title: Re: vampires
Post by: Jim Allen on April 09, 2021, 10:10:21 pm
Yes, you live and you learn. One serious health issue can sure teach you to never let that happen again. LOL pcp pneumonia? bactrim for a decade, no problems. LOL Infection in your face? get rid of the cyst NOW. LOL

Yeah.

Well, sugary went okay today. 40 mins, 5 external stitches, she used mini forceps to open up the site and to clear out all the shit. So not too bad, and this time I could have anaesthetics so I did not feel a thing.  ;) Sore and a bruised and swollen face/nose of course but it will be fine.

GP next week to remove stitches and they confirmed I should get my vaccine within the next 10 days.

Here the guidelines changed so I had thought I was moved to group 7 that is vaccinated just ahead of the general 18+ age group but the hospital confined my vaccine slot has been ordered as I'm in the "Extreme vulnerable group" so group 4 and ill be notified within the next 4 days and vaccinated within the next 10.  :) Happy days.


Title: Re: vampires
Post by: leatherman on April 10, 2021, 10:22:27 am
sugary went okay today.
. . .
ill be notified within the next 4 days and vaccinated within the next 10.  :) Happy days.
glad to hear the surgery went well. Wishing you speedy healing!

glad to hear the vaccine is coming your way. Thursday was 2 weeks after our second shot and we celebrated by going out to the Mexican restaurant in our tiny town - the first sit down dining we've done in 15 months. The food was as good as always but only half the customers came in masked (the other half didn't! but of course we're living with the deplorables here in South Carolina). And the margaritas were terrible. They tasted more  like lime-aid with only one shot of tequila. I'm cooking at home tonight and making my own pitcher of margaritas - with extra tequila to make up for last night.
Title: Re: vampires
Post by: leatherman on April 16, 2021, 07:02:02 am
sorry to hear about the cyst, hope everything goes well with removing it.
well, that was easy-peasy . . . until the numbing agent wore out on the way home (had to drive about 50 miles to go to a doctor in my neighboring state).Then it hurt! :o :o :o  but not as much as that damned needle for the numbing agent. I figured anything that close to the eye might be sensitive (the cyst was right where my upper and lower eyelids meet, on the outside edge) but that shot was one of the most painful things I've ever experienced. Thank goodness it was over in 30 seconds...but what a long 30 seconds it was.

The doctor was very friendly (we talked about how to contact her city water dpt to get a bill adjustment after filling up her pool), and she did a great job. She made a tiny incision and didn't even have to put in a single stitch. Like the cyst on my back, this one turned out to be much larger below the skin than was first noticed. So she did have to "dig around" some to get it all without enlarging the incision. In the end, it was the size of one of my blood pressure medication pills! The area did hurt all evening though and was quite red and swollen. But it's a million times better today. No pain, a little red, and healing already.

how are you doing with your surgery? It shouldn't be too many more days till you can get un-stitched  ;D , right?
Title: Re: vampires
Post by: fabio on April 17, 2021, 08:18:16 pm
Get well soon,good thing you got rid of it.
Still haven't gone to the vampires yet since outpatient is closed due to covid. But it's ok.
By the way, I just realised I'm a future vampire going through initiation ,lol 🤭😂.
Title: Re: vampires
Post by: Jim Allen on April 23, 2021, 04:53:43 am
well, that was easy-peasy . . . until the numbing agent wore out on the way home (had to drive about 50 miles to go to a doctor in my neighboring state).Then it hurt! :o :o :o  but not as much as that damned needle for the numbing agent. I figured anything that close to the eye might be sensitive (the cyst was right where my upper and lower eyelids meet, on the outside edge) but that shot was one of the most painful things I've ever experienced. Thank goodness it was over in 30 seconds...but what a long 30 seconds it was.

Same here.

The injections in the side of my nose could have brought tears to my eyes. Had injections plenty of times but I can't even describe the pain this caused.

The Doc said the worst apparently is having to have injections in the top of your ear, don't know if it's true or not but ill have to think twice about ever having anything done to my ears now.

The doctor was very friendly (we talked about how to contact her city water dpt to get a bill adjustment after filling up her pool), and she did a great job. She made a tiny incision and didn't even have to put in a single stitch. Like the cyst on my back, this one turned out to be much larger below the skin than was first noticed. So she did have to "dig around" some to get it all without enlarging the incision. In the end, it was the size of one of my blood pressure medication pills! The area did hurt all evening though and was quite red and swollen. But it's a million times better today. No pain, a little red, and healing already.

how are you doing with your surgery? It shouldn't be too many more days till you can get un-stitched  ;D , right?

Glad to hear it went well without the need for stitches and the cyst is gone.  :)

I'm grand thanks. I had the 5 stitches removed last Friday.  My face was very bruised, and of course, it got infected despite best efforts, I half expected that but a round of antibiotics took care of it.

The funny thing was all the GP's I know were busy here so ended up travelling to a walk-in clinic provided by the insurance company in South Dublin (40 min drive). Got chatting to the Doctor who's from South Africa. He told me I'm the first patient in Ireland to openly admit I'm living with HIV, so we got chatting about stigma and issues.

Anyhow, I am glad the cyst is gone and ill live with the scare on my face.
Title: Re: vampires
Post by: Jim Allen on July 29, 2021, 04:43:42 am
Visited the clinic this morning.

VL UD & CD4 41% @614

Liver enzymes okay, kidneys okay, and checked for diabetes & STI's.
Title: Re: vampires
Post by: PozChilean on August 05, 2021, 11:41:06 am
This week it was my turn; thanks for keeping warm my spot at the clinic @Jim.

VL UD, CD4 637 29,4%
Vitamin D 68.8 (I've been supplementing for a while now)
Title: Re: vampires
Post by: Jim Allen on August 08, 2021, 02:28:56 am
This week it was my turn; thanks for keeping warm my spot at the clinic @Jim.

VL UD, CD4 637 29,4%
Vitamin D 68.8 (I've been supplementing for a while now)

 :) Great lab results, hope you are feeling good as well.
Title: Re: vampires
Post by: Loa111 on September 02, 2021, 09:30:54 am
Had my 4 monthly vampire visit yesterday. It's so routine now, 3 1/2 years since my DX, that I forgot to ask how my CD4 level is!  :)

What I did find out, is the ID Clinic take a holistic health view to us HIV patients, which pleasantly surprised me. Since I turn 50 this year, I told the doctor that I'm missing a bit of "zap" from my energy * feel a bit of a drag in myself since Dx, and wondered about my testosterone levels. No problem she said, we'll check your testosterone levels off your bloods. Interesting to see if the Testo is a bit off, can I influence a prescription of Testo gel at my next appointment which will be Dec or Jan.

Even offer me a zoom session with the psychologist who works with the hiv side of the ID clinic as I mentioned I never reveal my status, and have no one to talk to about my poz situation (except you guys on here  :) ) I did not realise that service was available too. So all good.

Also found out my cholesterol is 4.8 which is ok (not 6.8 which I misheard at my last appt).

Got the final shot of the HPV vaccine too.

Dr. even offered a urine STI test. Then got my meds refilled for next few months.

Overall a very nice Vampire visit. All good, nothing to report.

Probably will be called back for the Flu shot in later October at the clinic.

Title: Re: vampires
Post by: Bucklandbury on October 28, 2021, 04:56:26 pm
Well, I got my new results today. I went in to see the PCP about the onoing neuropathy, but the ID wanted bloodwork in advance of my visit with her in early December, so how could I resist a two-for-one special?  ;D

Looks better than June 2, so I won't complain. I assume I am still undetectable, but I don't see those results (yet). Interestingly, they ran a syphilis exam on me as well. It came back negative too, but I haven't had sex since last November, so I could have saved them the money... They had already tested me back in March too.

My CD8 levels came way down since June 2 (~1,400 back then), so that is the best take-away (I think). Plus the rise from 311 to 356 CD4s. I am glad to have hit above 350 within a year of treatment beginning.

My PCP wants me to try generic Cymbalta for the neuropathy. I told her I would give it a whirl. I took my first capsule today. I read the pharmacy info. sheets and will be on the lookout for black, tarry stools and vomit that looks like coffee grounds. (I kid you not.)

My PCP mentioned my having written about the possibility of switching from Biktarvy to another ARV. I don't think she or the ID are much keen on it, so I guess I will stay put.

==

(https://i.postimg.cc/phftqYnK/screencapture-2021-10-28-16-53-45.png) (https://postimg.cc/phftqYnK)

(https://i.postimg.cc/LggQxmWw/screencapture-2021-10-28-16-58-09.png) (https://postimg.cc/LggQxmWw)
Title: Re: vampires
Post by: Jim Allen on October 28, 2021, 05:38:18 pm
Glad your labs are looking good, no experience with Duloxetine but hopefully it helps.

It's funny you mentioned syphilis, I found out recently that on my past three labs the doc included syphilis, waste of time in my case.
Title: Re: vampires
Post by: Bucklandbury on October 29, 2021, 08:44:31 am
I had one follow up on results that came in overnight. I don't like some of these results, but my doctor hasn't called me, so I may just be this way. I will try not to worry. Meh.

(https://i.postimg.cc/QVbbbPTJ/screencapture-2021-10-29-08-40-04.png) (https://postimg.cc/QVbbbPTJ)

Title: Re: vampires
Post by: CircularNatural on November 01, 2021, 03:11:46 pm
Visited the clinic this week.

VL - ND (not detected)
CD4 - 610
Liver, kidneys, cholesterol etc all perfect.  :)

Blood pressure was high (152/80 and 151/80) but I ran out of blood pressure meds for a month so no surprise. I will be back in 4 months time for HIV and asked them to test for diabetes.

Tomorrow I have sugary to remove a cyst in my face. Should be grand and it should leave a minor scare less than an inch. (2.5 cm)

Hey there Jim, how have you been with your BP lately? I read this thread diagonally since I can see some of the posts are old now!

I thought of mentioning, in my humble opinion, that this is a very important topic since as we all know, nowadays HIV is a manageable chronic disease and most of us are told by our ID that our immune systems will most likely remain healthy thanks to HAART.

In my case, I'm on my 2nd month of HAART after a recent diagnosis, waiting to complete 3 months before my first blood check after starting with Dolutegravir + Lamivudine (I only had a blood check up when diagnosed and before HAART).

In my last consultation (last Friday), my ID told me that in my following visit (around 27th of November) he'll run full blood tests again + CD4 and VL to check if I'm already undetectable (hopefully!).

Going back to BP, it's really important for everyone to know that our primary concern should be to avoid cardiovascular and metabolic diseases, which are currently the first cause of morbidity and mortality for our population (and the general population).

High blood pressure is considered a "silent disease", it won't give symptomps until it's already giving your problems. Affected organs are mostly the arteries, heart, brain and kidneys. Even though we all know that avoiding salt and getting excercise are the natural way of avoiding high BP, this is not always possible.
If BP is not treated, the body begins a process called "Vascular remodelling", where the arteries, the heart, kidney and other end organs begin to dysfunctionally adapt to it by inflammation and fibrosis processes that in the long-term, produce more problems than solutions.

More about this can be read here:
https://www.ahajournals.org/doi/10.1161/hy09t1.096249 (https://www.ahajournals.org/doi/10.1161/hy09t1.096249)
https://www.nature.com/articles/jhh201436 (https://www.nature.com/articles/jhh201436)

It is also known that ACE inhibitors (such as enalapril and the like) and ARBs (such as valsartan and the like) are known to stop this negative, long-term process of "vascular and myocardial remodelling":
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5192558/ (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5192558/)

This is much like HAART for HIV, we know that by treating it, one can expect to control the disease.
The same applies for high BP and eventually avoiding/treating metabolic syndrome/diabetes, which also produce inflammation/aging/disease in the body if left untreated.

Hope this helps anybody who has received a high BP diagnosis and is unsure on whether to add or not yet another pill to their box.

Stay healthy!

Kind regards

Title: Re: vampires
Post by: Jim Allen on November 04, 2021, 02:22:50 pm
My BP is fine again, thanks for asking.

The meds I take are not the ace inhibitor though as I developed the ace inhibitor cough. It was like coughing up my lung.

Title: Re: vampires
Post by: CircularNatural on November 05, 2021, 04:11:29 pm
Good to hear.

Yeah, that's a very usual side effect, which results in most people being changed to ARBs (valsartan, losartan and the like). These have the same cardioprotective benefits on the long-run.

Keep healthy!

Best regards
Title: Re: vampires
Post by: Loa111 on November 16, 2021, 12:16:06 pm
A quick Vampire visit this morning for my Flu Shot & to gave blood samples for a study they are doing on Covid-19 vaccines & HIV+ folk.

I feel like crap all afternoon, tired, low energy, stiff muscles and "blah" feeling, which I always experience the evening after the flu shot.

Found out my CD4 is 319 from last visit there, that's ok, nothing I can do about that anyway, & more importantly UD still.

Got a testosterone blood test done recently too, which is 17.5 (just over 500 on the USA testo measurement), the max score is 35 & lowest 9 (I think). I'll be 50 soon, so  it is about average I am told. I wouldn't mind getting a Testo Gel or something, but unfortunately Ireland is a bit behind when it comes to TRT for aging men. I might fake ED next docs visit, whinge & moan & see can I get any lol  ;D