family death, gf urgently referred to breast clinic
Except for the BP... ??? Do you have another pill now ?
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.
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
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.
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
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?
She asked if i took my meds, said yes
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!
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.
"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). "
but don't like the news about Dolutegravir and do worry where it may all lead
CD4s are largely meaningless. But still....NEVER...!?!?
Awesome CD4 numbers. I’m envious :)
You recovered from a very advanced case too?
Vincent’s hospital have a very efficient Id dept.. rarely more than 30+ min wait.
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
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?
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!
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
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.
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 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 ::)
i know this is common in some of the less fortunate locations of the worldlike 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. :(
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.
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!
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 ?
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
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.
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 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
stop jerking off for todaystop taking your bp WHILE your doing it ;)
stop taking your bp WHILE your doing it ;)
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 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)
rashes?! ugh. is it itchy? everything makes me itchy. ::)
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.
Hi Jim how often do you get your vaccination?
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 .
Visited the clinic this week.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.
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!
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.
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.
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
sugary went okay today.glad to hear the surgery went well. Wishing you speedy healing!
. . .
ill be notified within the next 4 days and vaccinated within the next 10. :) Happy days.
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.
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?
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)
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)
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
Regarding the testosterone, all joking aside, keep an eye on it and to get the treatment you might need to end up doing something like you suggested when needed, it's what I have heard from others trying to get treatment here.
I guess 2 liters of Coke a day just isn't always enough hydration. But before you think too badly of me, I have returned to my gym and I'm going 5 days a week again; so at half a bottle of water a day, I am drinking nearly 3 bottles of water a week now.
I am a glutton for Coke Zero & drink about 3/4 of a 2 litre bottle most evenings which is my only bad habit really. I sip a lot of black tea at my desk through out the day so I get plenty of water that way. Then in the gym & I'm 5 days a week too, I demolish a lot of water there.when i was 21, I totally gave up sweet tea. (I know. I know. blasphemy for a boy in the Carolinas; but I lost a lot of my Southern cred when I moved to the North (Ohio) and lived with my Yankee partners for 2.5 decades.) I've been drinking at least 2 liters of Coke everyday since though. (unless a restaurant has the P-word (P@psi), then a glass of tea is great). For those who are counting, that's 38 yrs of Coca-Cola. mmmmm
when i was 21, I totally gave up sweet tea. (I know. I know. blasphemy for a boy in the Carolinas; but I lost a lot of my Southern cred when I moved to the North (Ohio) and lived with my Yankee partners for 2.5 decades.) I've been drinking at least 2 liters of Coke everyday since though. (unless a restaurant has the P-word (P@psi), then a glass of tea is great). For those who are counting, that's 38 yrs of Coca-Cola. mmmmm
Before leaving Ohio, my doctor (the one who had helped keep me alive AND deal with the death of my 2 Yankees :'( :'( ) had a discussion about my 2 bad habits: caffeine and nicotine. I told him I was entitled to at least ONE bad habit (I mean, I DID survive AIDS twice, I deserve to have one bad habit) and he had a choice: I could either stop smoking or stop drinking Coke. Although, I'm always quick to bum a cigarette from friends at parties, it wasn't the Coke I gave up 12 yrs ago. LOL
Ok, I'm off to the gym early today since the doctor appt. is when we (my husband and I) usually hit up the gym. I'll try to drink more water so my blood flows better (at what is probably the 525th or something blood draw since 1992), but I'm not going to enjoy drinking it. :P
That reminds me I will be seeing the vampires on Thursday, that is unless it gets covid cancelled due to the pressure the health service is under.
I could either stop smoking or stop drinking Coke. Although, I'm always quick to bum a cigarette from friends at parties, it wasn't the Coke I gave up 12 yrs ago. LOL
lol. I barely manage a litre of coke a month.wimp ;D
Good luck with the appointment.6 vials from me, 7 from my hubby; pneumovax for me, shingle-vax for the hubby
COVID questionnaireso tired of all of those; but .... what are you going to do? I got so used to filling out the forms over the last 2 yrs every week when I went to visit my Nana in the nursing home that I can answer these in my sleep. I've had my booster AND I'm such a homebody that social distancing is just how I roll. ;)
Have to admit I do miss smokingthat's why I never hesitate to get a few cigarettes whenever I'm around the few friends left who still smoke. I only quit because I was really poor at the time, and my doctor was threatening me about my Coke intake. LOL
wimp ;D
6 vials from me, 7 from my hubby; pneumovax for me, shingle-vax for the hubby
his arm hurts and mine doesn't. :P we might have all our results by Fri.
had a student doc sitting in today. All of my HIV docs, in OH and here in the Carolinas, have always been part of training newbies so I'm gone through lots of students. It was kinda funny this time. In the past, the first 20 yrs of me living with HIV, these students were usually amazed that I was so sick, yet still alive, and with an amazingly good attitude. However this student, like the last few, got to see me wondering why my cd4 counts have gotten so high and wishing they were back lower. LOL What can I say? After living so long with low cd4s, these last 5 yrs as my cd4s counts have slowly been rising has been very weird. My husband (we share our 2 appointment times in one joint visit with the doctor) took some glee ragging on my about how anytime my cd4s are over 500 (it's been 4 times in the last 3 yrs now), that I am determined that the test results were simply wrong. But what's the alternative explanation? That as I'm getting older, I'm getting healthier?!? :o ::) :D
so tired of all of those; but .... what are you going to do? I got so used to filling out the forms over the last 2 yrs every week when I went to visit my Nana in the nursing home that I can answer these in my sleep. I've had my booster AND I'm such a homebody that social distancing is just how I roll. ;)
that's why I never hesitate to get a few cigarettes whenever I'm around the few friends left who still smoke. I only quit because I was really poor at the time, and my doctor was threatening me about my Coke intake. LOL
Had one looking at my ass for no reason two years agohmmm. as a gay man, I need to tell you that there was a reason. ;) 8) Quite frankly, asses are the only reason I tolerate watching when my husband has college football (the American kind of football) on the tv. :P
hmmm. as a gay man, I need to tell you that there was a reason. ;) 8) Quite frankly, asses are the only reason I tolerate watching when my husband has college football (the American kind of football) on the tv. :P
So how did your blood draw go today?
Were also isolating for the moment.ugh. I hate the unvaccinated. This might have been nipped in the bud last year; but now that it has mutated, I think we're going to be stuck with some version of covid, and some type of booster shot, during every winter season from now on.
Correct me if I'm wrong : when using Testosteron supplements for a year or longer, your body will stop making Testosteron on it's own. So you'll go from making "17" to "Zero", and you'll be depending forever on the supplements.
Thread with caution.
I also went to the vampires.......wow! it's good hear things are going so well for you these days!
Good luck with the tests. I just did mine again, situation normal with the viral load and CD 4 count. Creatinine still slightly out of range despite the switch to Triumeq. All becoming rather routine now after nearly 6 years of being positive.
Dave
Hi there!!…I met with Dracula last Tuesday, VL 490 I hope it’s one more blip in my 15 years of UD with the same treatment. I think it’s my third one, if indeed it’s a blip…to be continue
Ps. Every time that I go with Dracula, I take a picture of my arm with a needle, but I don’t know how to upload the photo so I owe it to you
Thanks.
Creatinine being slightly off... Presume that after the switch it did improve somewhat though?
The creatinine did drop to normal in a test done 6 weeks after the switch but is now back up to 1.24, where it was when I was on Complera. No protein in the urine so the Dr is not to concerned and it is far from kidney failure levels. I did point out to her that in 2012 before I was positive I had seen a level of 1.31, and nobody said a word about it. On some medical sites they class 1.3 a normal. She said there is nothing in Triumeq that would affect the kidneys so we will just check it again in 6 months.
Date VL per mL CD4 Count CD4 % CD8 Count CD8 % CD4:CE8 Ratio
04/07/22 Undetectable (< 40) 271 24.80% 671 61.60% 40.39%
10/28/21 Undetectable (< 40) 356 23.11% 924 60.03% 38.53%
06/02/21 Undetectable (< 40) 311 16.13% 1402 72.79% 22.18%
04/12/21 211 258 10.07% 2011 78.45% 12.83%
03/16/21 1,500,000 60 8.67% 496 71.21% 12.10%
Got shingles vaccine #2, and, man, my arm is sore as hell this evening.
Good results and the % seems stable.
The shingles vaccine is not a thing here. Had Shingles though and best avoided if possible. Hope the arm feels better soon.
EDIT: Stand corrected, they did bring it out here in the end, but it's not routinely given.
The creatinine did drop to normal in a test done 6 weeks after the switch but is now back up to 1.24, where it was when I was on Complera. No protein in the urine so the Dr is not to concerned and it is far from kidney failure levels. I did point out to her that in 2012 before I was positive I had seen a level of 1.31, and nobody said a word about it. On some medical sites they class 1.3 a normal. She said there is nothing in Triumeq that would affect the kidneys so we will just check it again in 6 months.
My concern now is the 3cm gallstone they found during a routine US. It's asymptomatic and Doc suggests a "vigilant wait and see" approach rather than rushing to a surgery. I'm not sure though, although having a surgery would be very complicate for many different reasons. I'm weighing my options.
First time I see a number in the VL field instead of "UD" since a few months after starting meds. Doc explained the lab at Thai Red Cross just changed their sensitivity threshold from <40 copies to <20 as UD definition. So, either I had similar numbers before and they weren't detected or 27 is a blip. He suggested checking again at the next 6 months blood test.
:) If I had a VL of 27 my HIV would be considered fully suppressed and I would be happy if it was a blip or permanently kept at that level.
I've entered my 5th year as HIV+a couple of months ago and visited the vampires at the beginning of April.: CD4 784, %37, VL 27
First time I see a number in the VL field instead of "UD" since a few months after starting meds. Doc explained the lab at Thai Red Cross just changed their sensitivity threshold from <40 copies to <20 as UD definition. So, either I had similar numbers before and they weren't detected or 27 is a blip. He suggested checking again at the next 6 months blood test.
This time I got Cratinine at 1.22 and it had been on an increasing path for the last 4 years (used to be around 1). No other signs of kidney issues (urine test is normal). I used to be on Complera until about 1.5 years ago when I switched to Dovato (both generic). Doc said this means meds shouldn't be the cause, he also says Dovato (DTG+Lamivudine) shouldn't affect kidneys. He suggested checking again Creatinine in 3 months and see.
My concern now is the 3cm gallstone they found during a routine US. It's asymptomatic and Doc suggests a "vigilant wait and see" approach rather than rushing to a surgery. I'm not sure though, although having a surgery would be very complicate for many different reasons. I'm weighing my options.
Had my first follow up visit a couple days ago. Results are in.
CD4: 83
CD4%: 4.9%
VL: 120
Much better than expected considering I was at 500,000vl and <20 cd4 exactly a month ago. Don't know what my % was but now I'll keep track of that. Let's goo!
it works for me & I'm still UDAlthough I am not a doctor, I have lived with HIV for 38 yrs, and know that >=95% adherence has been proven to be the goal for successful treatment. Being off an hour or so occasionally (not skipping a dose but just taking it slightly earlier or later in the day) is nothing at all to worry about.
same routine daily as I think there is less chance of forgetting the medstotally agree with the routine part. i take a few meds first thing in the morning (blood pressure, acyclovir, and the HIV med tivicay), I take the rest (HIV med prezcobix, since it's a med to be taken with food, and another acyclovir) at dinner . Dinner is "usually" the same time over 300 time year, but if the other 65 times end up at 4p or 8p, that's when I take them. While it's not a 7a/6p set routine, it is a routine within a few hours either way.
I'm in tomorrow too, been about 4 months for me. Just the routine blood work too & a meds top up. They're very good with helping with any other heath niggles which may or may not be related to hiv & I've a couple of minor ones to run by them.
They're always doing research at my clinic. I got a call last week & then a package arrived with a little plastic tub. They're asking everyone to take a dump at home & bring in a sample for a study on hiv and gut bacteria. I know they are well used to things like this, but I feel a bit embarrassed at handing it in tomorrow! lol :-[
Thanks Jim. I managed to hand the sample in embarrassment free :) actually the staff were fun about it as I mentioned I felt a bit awkward handing it over.
Vampires visit went well today. Still UD. CD4 is down a bit 280 ish but I know that fluctuates as per often discussed on this forum. In fact the CD4 being a bit lower it does not bother me at all, as long as I'm UD, and all I can do anyway is take my daily pills.
Docs running a few extra test for my niggles, including the prostrate blood test which I am very happy to be getting. I've been peeing a lot recently, like a weak bladder, so they asked for a urine sample too to check for any infections. Might just be from me drinking more liquid than I remember, but good to get this checked.
I've had trouble sleeping recently, like waking up after an hours sleep & troubling getting back to sleep. I asked for sleeping pills, got a no for that request but they gave me a Melatonin script instead which is fair enough.
Also since it's been a year since the checked my cholesterol, they'll check that again & are putting me on the list for some sort of a 10 year heart check. Not sure what that is, but good to check anyway.
They at least 15 vials of blood today too, I think re all the extra tests, & also some extra of the research study they're doing currently.
Had a bit of a close call today too!!! >:( I'm very private & extremely confidential about my poz status. I was sitting awaiting my blood draw, when I looked up & saw a guy I know walking in to hand medical implements to the nurse! I know he works in the lab. I don't think he noticed me, & I ducked my face behind the curtain & he was literally 2 feet on opposite side of curtain. I was praying the nurses, who I all know, would not turn around & speak to me whilst he was there. It would have been rather awkward for me & it would not take a genius to figure out what health condition I have sitting in the ID clinic on this particular day of the week, especially when one is staff there. Who knows, he might be checking my labs for all I know & seeing my name on the computer. He went after a minute or two. It's just I could really do without this chap (or anyone else for that matter) knowing my status, as I see him around a lot where I live, we know several people in common & we have a casual chat always.
All in all a good vampire visit. Happy to get a few extra tests done. Now let's see does this Melatonin help me sleep tonight? ;)
Hope the Melatonin helped you fall asleep last night.
Ended up missing my appointment this morning :( Caelan's school bus was 25 mins late and after that, my morning fell apart.
The only good news was my free travel card was approved so I can travel on the bus/train for free soon.
Sorry to hear you'd a messy morning Jim & missed your appointment, that's a headache for sure, as we all know the ID clinic takes up a lot of the day just going there & waiting etc.
I think the Melatonin helped a bit last night, not perfect, but better than nothing. The Pharmacist told me it can take several days of consistently taking it for the full effect to work, so fingers crossed.
We'll at least you can go travelling now with your free bus pass! ;)
We'll at least you can go travelling now with your free bus pass! ;)
Sorry to hear you'd a messy morning Jim & missed your appointment, that's a headache for sure, as we all know the ID clinic takes up a lot of the day just going there & waiting etc.
Glad to hear the Melatonin helped a bit. How are you getting on now its been a few nights?
Hmmm.
At the clinic today. So CD4 890 @38% and VL below 50
Happy days although will have some comments on the clinic visit later.
All labs are fine. However, a repeat MRI had been booked regarding my neuropathy as they want to double-check they didn't miss anything
I notice too where I go, there's always new doctors doing the appointment, & then if I've a question on anything, the boss sticks his head in to say hello and give me an answer (which I'm most grateful for). I'm guessing this rotation of doctors are training up to be ID consultants?
Is there a long wait over at James ID clinic for your usual appointment?
That's a great CD4 level Jim, obviously it strengthened over your years on treatment. Curious as to what was your lowest CD4 level ever?
How is insomnia going? Any further improvements?
The Melatonin seems to be helping a bit, it certainly makes sleepy. I'm working on cutting down night time liquid consumption to minimise getting up for pee's in the middle of the night. Think I'd just one pee last night about 230am. Bad habit of drinking 7up or Coke Zero in late evenings/night & peeing does not help insomina.
Cokejust like Beetlejuice, "Coke" has been uttered 3 times, so here I am. ;D
ouch!
Not the flu shot (those never bother me) but that damned covid booster. The first shot never bothered me; but each subsequent booster has left my arm hurting more and more the day afterwards and a little more.
Vampires yesterday (19th).
CD4 379 17.9%
VL < 20
CBC/Metabolic looked good
The only “meh” was an LDL of 116. I guess Ben & Jerry has to go :'(
from the clinic so I always make a bit of an occasion out of a visitback in 93, when the AIDS was killing me and the meds sucked, I started the practice of treating myself after every doctor/lab visit. Back in those days, my treat was always a bag of candy (I LOVE candy and go through phases of what I like the best at any given time) and a computer magazine. OMG! I just realized that I'm talking about a time when people barely even knew there was an internet. (All Hail AOL and their floppy discs!).
I started the practice of treating myself after every doctor/lab visit.
and a computer magazine.
I haven't touched a computer magazine in years. (do they even still print magazines?) These days, the treat is a great reminder that I'm alive and life is good!
now I have another little black mark against me for being a non-compliant patient.
Congratulations you made the shitlisthell yeah! ;D
]We're cool with the newer PA (he's younger but well-trained and knowledgeable. my volunteer work included working with him at the clinic with peer support and Ryan White stuff a few years ago when he was new to the practice.) but that left us with all sorts of paperwork to cover "switching" to a newer physician. ugh.
anywho, meds got delivered yesterday, an appt is set up for the 10th, and I'll put on a smiling face for the new PA and his vampire friends. :)
Viral load - Fully suppressed.
Lipid profile - All within normal range
CD4 - 728
All other labs - Normal range
In short, they said I am fat, and that's okay I just wish they would say it straight out.;D ;D ;D ;D
hanging in there with everything else??
A week and a half till I have numbers. I won't give my blood till next wed. ;)
You know, right there is something that's gotten much better (at least here in the States) over the years. Used to, they took your blood and 2 or 3 weeks later you called your doctor to get the results. When you went into their office next, you may have even gotten a printout. Nothing fancy, just green and white continuous-feed paper printed in some tiny, smudge-able dot-matrix font. The doctor themselves probably wouldn't even address your results until at your next appointment in 2-3months.
Nowadays, by the next day after the blood draw, results start pouring in to the online portal...with doctor's notes even! The difference in technology and medicial practice in 3 decades has been amazing.
Sounds efficient.and that's electronic medical records, a part of Affordable Care Act, under President Obama, that I helped advocate for. :)
about the "Pee test" :
Two simple tests can help determine your kidney function:
Urine test called ACR (Albumin to Creatinine Ratio): ACR stands for “albumin-to-creatinine ratio.” It tests your urine for albumin, a type of protein. ...
Blood test to estimate your GFR (glomerular filtration rate).
Six months prescription and an MRI of my spin scheduled for 2024
The only comment was the 5 kg weight gain since last time and to eat less, better and move more. In short, they said I am fat, and that's okay I just wish they would say it straight out.
Viral load - Fully suppressed.
Lipid profile - All within normal range
CD4 - 728
All other labs - Normal range
Stickers and leads everywhereomg. i hate that sooo much. I have a fairly hairy chest. (it just doesn't look hairy over my pecs because that's all turned white. It's like my hair color is bleeding out of me from my head down as I age. LOL) Nurses and techs have frequently apologized as they put on the leads on me for how it's going to feel ripping them (and my hair) off later.
Nurses and techs have frequently apologized as they put on the leads on me for how it's going to feel ripping them (and my hair) off later.OMG! It's like I'm prescient or something. ;D A month after my last post at my more recent visit to the doc, I found out the appointment was also my yearly physical - with EKG sticky pads included for fun. ;D :o ;D It's so much easier when I only have to take out my nipple rings for MRIs or Xrays. LOL
Oh, I forgot to mention that she mentioned "prostate exam." I said sure if she can fit that into the 3 min meeting, otherwise it will have to be a GP visit at some stage.
I’ve had a few of them last way less than 3 mins 🤣
She insisted on testing me for STDs including the oral throat swap for gonorrhea. I was like “still haven’t had any sexual contact per usual”
She insisted on testing me for STDs including the oral throat swap for gonorrhea.it's a Ryan White requirement.
“still haven’t had any sexual contact per usual”hmmm. ;D ;D my "per usual" is usually:
it's a Ryan White requirement.
Providers who deal with HIV patients eventually have to deal with Ryan White aid for those patients. That aid comes with requirements of course. In fulfilling those requirements, providers often end up just counting and treating every patient (insurance, medi-care -caid, RW, etc) under those requirements.
It doesn't take long but it's just not something they can fit in the limited time I grant them as it is. Although if they stopped asking stupid questions it might fit.
(https://media.tenor.com/TEYxuRgQSRwAAAAM/friends-ross.gif)
I would be running STI testing as well...I have the same thoughts whenever some in the "do I have HIV" section claims to only have had a massage and nothing else or that they are virgins or monogamous ;D
Had my 4 monthly Vampires ID Clinic visit mid last week.
Indeed, it has become very routine and normal these days, which is a good thing.
Undetectable.
Good news in that for the first time since my DX over 5 years ago, my CD4 has hit an amazing 414. That's the highest ever so far. Docs do say it is better if over 500, so maybe I'll hit that at some point in the future.
I was unwell in August, spent a week in bed, I suspect it was Covid but I didn't test. Anyway, doc give me a bit of an extra check, listened to my lungs breathing etc. Doc will have a good look at my blood tests to see if all is normal.
Doc also did a Heart Risk Assessment, which classed me as low risk. The ID Doc heading up our clinic, I think is interested in how HIV may effect the Cardiac system as one ages.
After all that, I got my annual Flu Jab. Delighted to get that out of the way on this clinic visit.
Then got my meds from the clinic pharmacist. Gave me 5 months supply of pills so thinking I might now be on a 5 month appointment rota which is fine by me.
Had my 4 monthly Vampires ID Clinic visit mid last week.
Indeed, it has become very routine and normal these days, which is a good thing.
Undetectable.
Good news in that for the first time since my DX over 5 years ago, my CD4 has hit an amazing 414. That's the highest ever so far. Docs do say it is better if over 500, so maybe I'll hit that at some point in the future.
I was unwell in August, spent a week in bed, I suspect it was Covid but I didn't test. Anyway, doc give me a bit of an extra check, listened to my lungs breathing etc. Doc will have a good look at my blood tests to see if all is normal.
Doc also did a Heart Risk Assessment, which classed me as low risk. The ID Doc heading up our clinic, I think is interested in how HIV may effect the Cardiac system as one ages.
After all that, I got my annual Flu Jab. Delighted to get that out of the way on this clinic visit.
Then got my meds from the clinic pharmacist. Gave me 5 months supply of pills so thinking I might now be on a 5 month appointment rota which is fine by me.
Just had my latest 6 monthly check up. CD4's doing great, 860+. Kidneys doing what they normally do, slightly out of range. The viral load though is still hanging in there. Not much, 180 this time but for 6 years I was undetectable, that was whilst taking Complera. Since the switch to Triumeq I have had three detectable readings, 21,just over 200 and now 180, all in a row. I know that is still classed as being under control but after the first 6 years I kind of find it disappointing, especially as I always assumed Triumeq was a superior regime compared to Complera and was happy to switch when given the choice. I did ask about reverting to Complera but my Dr is not happy for me to take TDF in case my kidneys get worse.
Not sure what approach to take, insist on going back or just hang in there with a low viral load and see what happens.
Dave
I know that is still classed as being under control but after the first 6 years I kind of find it disappointing, especially as I always assumed Triumeq was a superior regime
I did ask about reverting to Complera but my Dr is not happy for me to take TDF in case my kidneys get worse.
Went for my Vampires visit yesterday. It is every 4 months now.
All normal, still UD. My CD4 is 427, and it was over 400 at my previous visit which was last October. Pleased to hear this, that my Cd4 is trending upwards the last few months, as I had a very low CD4 for years after an advanced dx.
Cholesterol is 4.19 on the scale we use here in Ireland. They tell me this is normal, and if it goes over 5, then further measures may be required. No updates on yesterday on giving Statins to me as a preemptive measure as some of us discussed on here recently re fairly recent research. They took an extra blood vial to test current cholesterol levels which is good.
I've been peeing a bit weird lately, going more at night, and sometimes after a pee having to go back 5 minutes later to pee a bit more, so ID doc said he will send me for an ultrasound to check all is ok there. Probably will take months & months to get this appointment as waiting lists are very long in this country.
They asked if I'd consent to giving extra blood vials for some research they are doing. This is not uncommon at my ID clinic as it is in a teaching hospital so they are often asking us to consent to research studies. So I said sure, no problem, happy to help.
Got topped up with meds for another 4 months, & back in mid-June for next ID appointment.
All in all a good ID visit, and as always I made it an enjoyable day by getting in a big breakfast in the cafe near the clinic just before my midday appointment.
Went for my Vampires visit yesterday. It is every 4 months now.
All normal, still UD. My CD4 is 427, and it was over 400 at my previous visit which was last October. Pleased to hear this, that my Cd4 is trending upwards the last few months, as I had a very low CD4 for years after an advanced dx.
Cholesterol is 4.19 on the scale we use here in Ireland. They tell me this is normal, and if it goes over 5, then further measures may be required. No updates on yesterday on giving Statins to me as a preemptive measure as some of us discussed on here recently re fairly recent research. They took an extra blood vial to test current cholesterol levels which is good.
I've been peeing a bit weird lately, going more at night, and sometimes after a pee having to go back 5 minutes later to pee a bit more, so ID doc said he will send me for an ultrasound to check all is ok there. Probably will take months & months to get this appointment as waiting lists are very long in this country.
They asked if I'd consent to giving extra blood vials for some research they are doing. This is not uncommon at my ID clinic as it is in a teaching hospital so they are often asking us to consent to research studies. So I said sure, no problem, happy to help.
Got topped up with meds for another 4 months, & back in mid-June for next ID appointment.
All in all a good ID visit, and as always I made it an enjoyable day by getting in a big breakfast in the cafe near the clinic just before my midday appointment.
Just got the results of my six monthly check up. happy to say that after the last 3 blood test showed small viral load blips I am now back to undetectable. CD4 count 899 at 44% so very happy with those figures.
I have slackened off on my fitness routine having now turned 61 and unfortunately it shows, back to being pre-diabetic, just, and cholesterol at 258 mg on a scale that says anything over 200 is bad. I explained to the doctor that 30 years ago the number was similar but she still politely told me to start working out again. Starting Monday.
The conversation then turned to my meds, currently taking a two pill version of Triumeq.
She suggested dropping the Abacavir due to possible heart complications, I have read about that on here, so I would have been on a two pill version of Dovato. I wasn't to keen on that and she wasn't fully sold on it as she wants me to be undetectable for another test before I go down to two drugs. Again I have read on here about a slightly increased failure rate on two drug regimes, the doctor was also aware of this, so as my Kidney function was now good she opted for Kocitaf, DTG, TAF and FTC. Keeps me on three drugs, one exactly the same and two the same family of drugs I take now so I went along with that one. I realise TAF is associated with possible cholesterol issues so have already started the diet change and will hit the gym as planned. Kocitaf has the additional advantage of being cheaper also. A win win for me.
All in all I am feeling great and hopefully will continue to do so.
All the best
Dave
ojo. Hello there!… good numbers! .how about your cholesterol, you said your attorney 61 has your doctor suggested any cholesterol lower medication?. I think that my cholesterol is around same as yours even though I’m taking a statin med and my doctor doesn’t seem to be concerned. I’m sorry about your pre-diabetic X. To tell you the truth and know anything about diabetes… keep up the good work and please keep us posted and again congratulations for those envidable bloodwork results…hugs
St James's Hospital?It’s Vincent’s I go. I ended up at Vincent’s, as I went to A&E there nearly 6 years ago for violent coughing & got admitted, found out I’d pneumonia, then eventually got the poz news, so it became my ID clinic by default. It’s the only clinic I’ve ever attended. I like it there, know all the staff for years now & get really good help there.
It’s Vincent’s I go. I ended up at Vincent’s, as I went to A&E there nearly 6 years ago for violent coughing & got admitted, found out I’d pneumonia, then eventually got the poz news, so it became my ID clinic by default. It’s the only clinic I’ve ever attended. I like it there, know all the staff for years now & get really good help there.
Holistic ethos for us poz patients & always happy to check out other health issues that may affect us.
I love this thread! Only because it always gets a bump the week before I go to the doctor and get my blood work done. This is a great reminder. Thank you all for having labs around the same time I do and posting about them. LOL
when my next appointment is.Larry and I go Thurs after lunch. yipee.
ojo. Hi Jim, what medication you are taking and what are you options?. I wish I had options but it is what it is. Fortunately my treatment is still working since January 2007.… Hugs.
ojo. ojo. Thanks for replying, Jim, I wonder what your choices are because of TAF is in most of the country mbnations of drugs. in my case I’m allergic to Abacavir and tenofovir… good luck
It's great to be living in a time where we have so many choices. I would have hated to be positive in the early days. Take these 20+ pills a day, suffer the side effects or die. No options there.
I had a similar discussion with my Dr that you plan to have on my last visit. She started it by wanting to drop ABC due to possible cardiovascular issues occurring. Wanted me to switch to Dovoto, I wasn't happy with just two drugs. Opted for Kocitaf, no good for you as it contains TAF. One relatively small pill.
I wasn't keen on RPV containing regimes due to the food requirements. I travel and work over seas and like a regular time I can stick to. Didn't want to possibly miss a dose because I was not in a position to eat and then forget I hadn't taken the pill. Although I did manage over five years on Compilers with out issue.
I am sure you will find the ideal solution.
Dave
You can't tolerate the TAF component of Biktarvy ?
DTG + RPV + 3TCthat's not a bad choice. It's similar to regimens Larry and I are taking.
I must be fortunate, as I've never noticed a single thing. It's always been like taking a vitamin pill. I feel nothing, no reactions, life goes on.
I had no idea that there are such complexities to taking hiv meds.really since the advent of Atripla around 2005-2006, HIV treatment has radically changed for the good. It's not just that we got a pill a day regimens; but a lot of the "kinks" (ie negative side effects) of HIV treatment were finally getting worked out and more effective meds were developed.
Quickest clinic visit ever :) Less than 3 mins and I did 90% of the talking.
I'm not willing to take Dovato end of story, my risks are low so six more months of Triumeq. This gives them time to consider the options I provided.
Glad to hear it went well Jim. :)
I noticed from your past Vampire posts, your ID visits seem quick & to the point. The Mater I think you said? Curious if the quickness is down to you keeping it that way or is it more the clinic ethos with an unwillingness to get involved in other issues?
Where I go at Vincents, they take a holistic ethos, & usually are very interested in exploring other health issues which may crop up & might do an examination, or run an extra blood test etc. I always will bring up any extra genuine issues (aside from stupid stuff like getting the cold etc) & ID Doc is willing to explore it, then great! Maybe because I've a family GP who I suspect does not fully get the Hiv thing & anytime I went to her since my dx, bounced me back to the ID clinic.
Interested to learn what other treatment options might be presented to you over the next 6 months. Keep us posted.
Interested to learn what other treatment options might be presented to you over the next 6 months. Keep us posted.:)
The Mater Hospital is excellent and they do offer holistic care, additional health screenings, vaccinations etc & if I needed anything at all they would be happy to help. When admitted to hospital for unrelated matters they would still come down and visit me daily and have helped speed up waiting times and treatment for other issues.
In the past they would probe into everything that happened since my last visit and provide additional care or treatment. However, I don't need or want that. So I keep them focused, after 5 mins I start tapping my watch.
ojo. Congratulations Jim, grey numbers. I’m glad that your visit to the clinic was Quick. I like the 42%.… Ha