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Author Topic: vampires  (Read 7638 times)

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Offline Jim Allen

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vampires
« 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



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Offline CaveyUK

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Re: vampires
« Reply #1 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!
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Offline Jim Allen

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Re: vampires
« Reply #2 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

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Offline Wade

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Re: vampires
« Reply #3 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
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Offline Jim Allen

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Re: vampires
« Reply #4 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

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Offline leatherman

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Re: vampires
« Reply #5 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.
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Offline DANIELtakashi

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Re: vampires
« Reply #6 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.
« Last Edit: May 12, 2017, 04:13:00 pm by DANIELtakashi »
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Offline Ptrk3

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Re: vampires
« Reply #7 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.
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Offline Jim Allen

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Re: vampires
« Reply #8 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 
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Offline Tonny2

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Re: vampires
« Reply #9 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

Offline Jim Allen

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Re: vampires
« Reply #10 on: May 13, 2017, 11:33:04 am »
Thanks  ;) Sure things will be fine with you next week, keep us posted.
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Offline paintedroom

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Re: vampires
« Reply #11 on: May 13, 2017, 11:41:59 am »
971 ? feckin savage..that`s hollywood sign scale.
Dx`d mid July 2016
8/8/2016 - CD4 50     VL 50,000
5/9/2016 -  CD4 150
13/9/2016  VL  undetectable.
March `17 - CD4 193   VL undetectable.
March  `18 CD4 214    VL undetectable
March 2019 CD4 325  VL UD
Genvoya

Offline Jim Allen

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Re: vampires
« Reply #12 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
« Last Edit: May 14, 2017, 06:56:07 am by JimDublin »
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Offline CaveyUK

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Re: vampires
« Reply #13 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 :)
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Offline Jim Allen

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Re: vampires
« Reply #14 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
« Last Edit: May 14, 2017, 12:34:50 pm by JimDublin »
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Offline Jim Allen

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Re: vampires
« Reply #15 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
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Offline CaveyUK

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Re: vampires
« Reply #16 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!
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Offline Jim Allen

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Re: vampires
« Reply #17 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
« Last Edit: May 14, 2017, 01:47:39 pm by JimDublin »
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Offline CaveyUK

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Re: vampires
« Reply #18 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.
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Offline OneTampa

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Re: vampires
« Reply #19 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.
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Offline Jim Allen

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Re: vampires
« Reply #20 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




 







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Offline Wade

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Re: vampires
« Reply #21 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  :)
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Offline Jim Allen

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Re: vampires
« Reply #22 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
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Offline Jim Allen

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Re: vampires
« Reply #23 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
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Offline daveR

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Re: vampires
« Reply #24 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

Offline LeftyBowler300

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Re: vampires
« Reply #25 on: October 22, 2017, 12:59:59 pm »
You guys and your high CD4's  ::)

Donate plz  ;D
Apr 1, 2017 DX - CD4 8 , VL 820,000
OI's: Disseminated Histoplasmosis, Thrush, PCP
Apr 17, 2017 started Genvoya, Bactrim, Sporanox, Azitrhomycin
Jun 9, 2017 - CD4 42 (3%) , VL 100
Jul 17, 2017 - CD4 57 (4%) , VL 53
Sep 16, 2017 - CD4 57 (4%) , VL 130 - Ugh... wtf
Oct 20, 2017 - CD4 63 (5%) , VL 100
Dec 1, 2017 - CD4 56 (3%) , VL <20
Mar 15, 2018 - CD4 73 (5%) , VL <20
Nov 5, 2018 - CD4 104 (7%), UD
Jan 26, 2019 diagnosed with HIV-associated DLBCL with 6cm mass near liver and abdominal fatty tissue involvement
Jan 27, 2019 started R-EPOCH 6 day cycle every 21 days.
Challenge Accepted.

Offline Jim Allen

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Re: vampires
« Reply #26 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 
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Offline Jim Allen

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Re: vampires
« Reply #27 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
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Offline Loa111

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Re: vampires
« Reply #28 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.

Offline CaveyUK

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Re: vampires
« Reply #29 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...!?!?

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Offline Tonny2

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Re: vampires
« Reply #30 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

Offline leatherman

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Re: vampires
« Reply #31 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)
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Offline Jim Allen

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Re: vampires
« Reply #32 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
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Offline Jim Allen

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Re: vampires
« Reply #33 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.
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Offline Jim Allen

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Re: vampires
« Reply #34 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
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Offline Tonny2

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Re: vampires
« Reply #35 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

Offline MadDog125

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Re: vampires
« Reply #36 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?
DX 28DEC17, cd4 112, VC 63000
13FEB18, cd4 215, VC 156
14MAY18, cd4 260, VC 31
23AUG18, cd4 298, VC 61
03OCT18, cd4 300, VC 35
21NOV18, cd4 259, VC <20
18JAN19, cd4 284, VC 24
17APR19, cd4 157, VC <20
24MAY19, cd4 340, VC <20

Offline Archimexican

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Re: vampires
« Reply #37 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 :)

Offline Jim Allen

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Re: vampires
« Reply #38 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
« Last Edit: September 07, 2018, 03:01:21 pm by JimDublin »
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Offline MarkintheDark

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Re: vampires
« Reply #39 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?]
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Offline MadDog125

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Re: vampires
« Reply #40 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. 
DX 28DEC17, cd4 112, VC 63000
13FEB18, cd4 215, VC 156
14MAY18, cd4 260, VC 31
23AUG18, cd4 298, VC 61
03OCT18, cd4 300, VC 35
21NOV18, cd4 259, VC <20
18JAN19, cd4 284, VC 24
17APR19, cd4 157, VC <20
24MAY19, cd4 340, VC <20

Offline Jim Allen

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Re: vampires
« Reply #41 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.

 
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Offline Loa111

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Re: vampires
« Reply #42 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

Offline CaveyUK

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Re: vampires
« Reply #43 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 :)
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Offline paulT

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Re: vampires
« Reply #44 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!

Offline Jim Allen

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Re: vampires
« Reply #45 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?
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Offline Jim Allen

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Re: vampires
« Reply #46 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.
« Last Edit: September 15, 2018, 02:24:32 pm by JimDublin »
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Offline paulT

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Re: vampires
« Reply #47 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.

Offline Jim Allen

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Re: vampires
« Reply #48 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. ;)
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Offline Jim Allen

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Re: vampires
« Reply #49 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


« Last Edit: March 08, 2019, 06:14:03 am by JimDublin »
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Offline Jim Allen

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Re: vampires
« Reply #50 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
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Offline beanstalk

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Re: vampires
« Reply #51 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 ::)

Offline fabio

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Re: vampires
« Reply #52 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.

Offline Jim Allen

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Re: vampires
« Reply #53 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 ?

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Offline leatherman

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Re: vampires
« Reply #54 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.  :(
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Offline Jim Allen

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Re: vampires
« Reply #55 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  :)
« Last Edit: March 13, 2019, 07:00:01 am by JimDublin »
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Offline leatherman

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Re: vampires
« Reply #56 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
leatherman (aka mIkIE)


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Offline beanstalk

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Re: vampires
« Reply #57 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/).

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.

Offline fabio

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Re: vampires
« Reply #58 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.

Offline Jim Allen

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Re: vampires
« Reply #59 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/).

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.

 
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Offline Jim Allen

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Re: vampires
« Reply #60 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
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Offline leatherman

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Re: vampires
« Reply #61 on: March 15, 2019, 10:10:09 am »
stop jerking off for today
stop taking your bp WHILE your doing it ;)
leatherman (aka mIkIE)


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Tivicay/Prezcobix

Offline Jim Allen

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Re: vampires
« Reply #62 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
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Offline fabio

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Re: vampires
« Reply #63 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.

Offline Jim Allen

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Re: vampires
« Reply #64 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
« Last Edit: March 19, 2019, 04:08:08 pm by JimDublin »
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Offline Jim Allen

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Re: vampires
« Reply #65 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
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Offline Jim Allen

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Re: vampires
« Reply #66 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
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Offline leatherman

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Re: vampires
« Reply #67 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  ::) ::)
leatherman (aka mIkIE)


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Tivicay/Prezcobix

Offline Jim Allen

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Re: vampires
« Reply #68 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
« Last Edit: August 13, 2019, 10:29:22 am by Jim Allen »
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Offline Jim Allen

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Re: vampires
« Reply #69 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
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Offline wardp

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Re: vampires
« Reply #70 on: August 13, 2019, 12:53:43 pm »
Hi Jim how often do you get your vaccination?
Diagnosed 20,July 2017. Cd4 289, 21% vld .3,462 Started atripla 4 Aug 2017 5oct 2017 cd4 384 21%, vl ud less than 20. Switch to complera 4 Nov 2017 switched to stribild 15 the Nov. Switched to truvada efavirence 200mgx2 14 Dec 2017, 2 Feb 2018, us cd4  466, 25%  CD 8 ,595, 32%..1 may 2018
switched  to instgra truvada.7th june switched to truvada  nevirapine stavudine. .21 june switched to truvada nevirapine. X 2 a day...9 aug 2018 ud. 2n Nov 2018 CD 4. 455..22.70% 13th Nov switched  to lamivir and nevirapine  due to kidney issues...jan 10,2019 UD..may 13 2019 ud  cd4 482 28%

Offline leatherman

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Re: vampires
« Reply #71 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.  ::)
leatherman (aka mIkIE)


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Offline Jim Allen

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Re: vampires
« Reply #72 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.  Below example



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
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Offline Jim Allen

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Re: vampires
« Reply #73 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.
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