How is your CD4 doing?

[nick2046]

Hello, i'm relatively new here so i ask dumb questions sometimes or topics that has been discussed before.  I did scan the  forum briefly...

What concerns me is:
In reality, how would you expect your CD4 increases over time?  What i understand is, it goes up very slowly, it might even has a lower reading  depending on your mood or morning/afternoon.  I see some ppl here gets a rapid rise after medication... 

...which brings up my next question: how do you decide if the drugs are 'right' for you?  I'm on the same drugs (combinvir & sustiva) >4 years, my CD4  rises from 1x to 240.  I think the drugs are not ''not working' but surely there's a better choice now?

I also feel my GP  knows little about my drugs (she told me i need to switch from Combinvir to Trizivir 'cos combinvir gives Lipodystrophy as a side effect in long term... but surely Trizivir is no better (AZT)?  And she reassured me there'll be 'less' drug involved (that i only take trizivir once daily)!?  Hello? comBIvir vs TRIzivir?  And  it's the same dosage as combivir anyway.  That old fat witch also ordered a blood test to see if i'll get a rxn from Trizivir.  She could have waited until the next routine blood test... my hand was all blue&blk 'cos my veins were always hidding.

Why the unnecssary stress & pain?

So, would you switch to another GP if you don't like the current one?  Actually, how often would you change your drugs?  I see it happens a lot here... perhaps  there wouldn't be an issue  if there was no change.

Final thing: from your blood test each time, which specfic test do you keep a record?  I only memorize my CD4 & I go home & draw a wee graph... it's like to see how much savings i have in a bank acct.

[wellington]

Anything above 200, as far as CD4, is definitely a good thing. I was around 45 when diagnosed earlier this year, and have passed the 200 mark on my way to numbers beyond. As long as I can avoid OIs, I don't really care how high the number goes. It seems to vary widely, and regularly, for the folks that chime in here. The other significant number with respect to CD4 is viral load (VL). If your Vl is not reaching an undetectable level and staying near that level, then is the time to begin to question the effectiveness of your drugs and consider a change.

Think of your doctor as a knowledgeable assistant. You're the one in charge of your body and so if you think a drug test is meritted, go for it. If not, and you're educated with as much info as you can, make an informed decision to wait until your next blood draw or a time when you will not be mentally or physically stressed. There's little need to stress or worry when you are in control. These considerations are all part of one's bigger picture, I feel.

Before you swicth to another GP, consider that it might be better to live with the devil you know that one you don't. Have you tried to express to your doctor the concerns you raise here? Write 'em down if you think you'll forget the subtleties when you're face to face. If your doctor can't enter into an intelligent conversation about managing your care, it might be time to consider another opinion, or another's care. This is especially true if you feel your current doctor is not as familiar as you would expect - as you say in regard to drugs.

I always ask for copies of all blood work. Then I don't have to remember any numbers recited during my visits and I can watch trends as my knowledge of my care changes - and it has significantly since diagnosis.

As to the specifics of drugs to consider and their side effects, others here will likely be able to provide better advice than could I.

Hope this helps.

[Blixer]

Nick, I've only been diagnosed 8 months and on meds since April.  I think you posed some very good questions.  I believe the bottom line is that you have to have a trust in the doctor that is treating your HIV.  My personal opinion is that I want the very best.  And if something doesnt' seem right then maybe it's time to get another opinion.  I was very quick to seek out a second opinion when I was having some problems with meds.  Things have stabilized now and I actually see both doctors.  One is an ID specialist and the other is more of a general practitioner but is very well educated in HIV and current trends.

Overall it sounds like your CD4 has responded in an amazing manner from where you started.  I started at 520 and I'm not a lot above that after 3 months on meds (I don't count the first 50 days because I was on and off).  But my CD4% has rebounded in a very good manner from about 12% to almost 24%.  And like Wellington said, the VL being undetectable is important.  I guess my thought is that if what you are on is working and there are no singificant side effects, why change?  Myabe for easier dosing (once a day) but that might not even be a significant reason to consider changing.  And as far as Lipodystrophy is concerned I've been told it isn't nearly the issue that it was several years ago with higher doses of AZT.

Like you, I've wondered about changing.  I know my combo is working right now, but I also know that Videx EC seems to have a higher virologic failire rate than some other drugs.  So part of me thinks, "why not change to something like Atripla" and only have one pill a day rather than my 3 now... and not worry about the potential of Videx failure.  But for now I'll stick where I am.

Again, as Wellington mentioned you are the one in charge of your body.  Be as knowledgeable as you can about things and don't be afraid to question what any doctor may prescribe or order if you are either uncomfortable with it, just don't know, or are outright concerned.

I wish you continued progress toward more and more of those CD4s.

[J.R.E.]

Hello Nick,

Welcome to the forums, I had been reading some of your other posts. The first thing to understand is, that we are all going to respond differently to the meds, and we will respond at a differant pace.

I was diagnosed positive in 1985, and began medication in October of 2003. I should have started medication, at least 18 months sooner. ( but thats another story.)

When I started on medication, My t-cells were at 16, my viral load was at 500,000. I had gone through a 30 pound weight drop over a ten month period, prior to starting on meds. I had a severs case of esophageal thrush, going down deep within my throat, which later gave me a bacterial infection, that had spread to my lungs, and caused pneumonia. I was hospitalised for 23 hours, with an IV drip, and given anti-biotics on top of that. Fatigue was a terrible issue with me.

I thought it was going to take forever to get my t-cells back up. I post my results at the bottom of my post, so people can see what my results have been, since starting on meds. As you can see, it had taken quite a while, to get to where I am at now, with a couple blips in between. My t-cells have also bounced around slightly.


I would think, that one would know if the meds are working, by maintaining a < 50 viral load, which is what I am always hoping for.When that is not possible, then tests need to be done to determine, which drugs may not be doing their job. Overall I feel pretty well, considering what I have been through, and also considering the fact that this is my 21st year of living with HIV.


I am not familiar with some of the supplements that you are taking( that you mentioned on the other thread. Many of us take a variety of vitamins and supplements. It depends on works for us.

Myself.....

I take a one a day Centrim Vitamin.

I take Omega 3 Fish oil, ( to help to keep the cholesterol down

I am experimenting again with 200mcg of selenium daily

I take occasional sub-lingual B-12

I take Acetyl-L - Carnitine and Alpha- lipoic acid( combined in one pill, once a day) (650 mgs)


I also take Co Q 10 ---150 mgs a day.


I vary my vitamin and supplement intake every 3 months, but always stay with the multi vitamin. There have been things that I have tried through the years, that I would not try now,because of the medications.


I am big into yogurt products. I eat fish at least twice a week. I still eat meat !! i try to make it lean though. We don't need excessive fats in out diet. My weight when I started on medication was at 140 pounds. I am now holding very stable at about 171 pounds. I weigh myself weekly, on the same scale, at the same time of the day. I write those results on the calendaer. I've been doing that for about 5 years now. I also keep a journal, Of what vitamins/ supplements I am on, and see what kind of results those have on my blood test every 3 months.


I eat a lot of fiber. Fresh fruits and Vegetables. I don't like my vegetables Cooked to hell ! it just cooks all the nutrients out of them. I avoid almost all packacked junk foods. There no good for you. I like green tea, and I drink Pomegranate juice daily. I mix one ounce of that with unsweetened apple juice.


I was Trizivir briefly ( for a month) back in 2004. I did not like it. It was the AZT component that was messing me up.

Have you considered possibly seeing a nutritionist !! one that experienced in HIV. perhaps you can get some good advice there also.


As far as doctors. I have the same doctor. I believe my doctor is knowledgeable. I wish at times I didn't feel like I was rushed out of his office. I realize he has other patients, but that is really my only complain. Sometimes I feel as though I am on an assembly line....


You have to feel comfortable with your doctor. If you are not, then perhaps you will have to find another one that you are comfortable with, and have that connection with !! What is your current viral load ?



Take care of yourself-----Ray

[J.R.E.]

Hello Nick,


Do you get copies of your blood work. Next time, ask for a copy of your blood test results. You are entitled to those results. That way, if you have questions as to those results, you can ask them here. How have your percentages been running. Percntage is a more accurate way of measurement.



Take Care-----Ray

[nick2046]

Thanks for replying with your experience & knowledge.  It's very touching to know there are ppl willing to help; in real life, ppl can be so cold!

Wellington-san, you said your CD4 was 45 to begin with, did you not get any complications?  I 1st got Toxoplasmosis then in the following year had crytospodium.  I went into a moderate coma for 2 weeks on the night i walked into the hospital.

You also said, ' ...be better to live with the devil you know that one you don't copies of all blood work'; either way, i now live in hell, surrounded with devils dancing around me.

Blixer-san, fortunately my VL has been always been <50, which is a relief.

I always thought lipodystrophy was sth like tax or death which can't be avoided.  I've just found out it was a side-effect commonly associated with AZT which I'm on.  Knowing that, i could suggest sth other than  Trizivir which the GP suggested.

I can never be friend with that woman.  She was the one who broke my life... well she broke the news to me which turned my life inside out.  Besides, i have this issue trusting ppl.  I trusted that French bf of mine, he knew, his family knew, none said a word.  He died of it, I'm sure he was the one 'cos he was the only one; & we were in a LTR.  Trust?  I can't afford it. 

Besides, i get nervous & I could never sleep the week before my appt.  The clinic has GUM CLINIC written above the door.  I feel like everyone was judging me, I could even 'read' minds,'oh look @ that stupid boy with poisonous blood: didn't use a condom; well he got what he deserve!'.  The nurses actually said that, minus the poison blood bit.  My current bf overheard & told me.  Blood test is stressful too, my veins normally all disappear...

Ray-san, thanks for sharing the list of supplements.  Actually i saw the nutritionist last time; it was a waste of her time & mine.  My sister is a  nutritionist & I studied 4 years in a pharmacy school so i think i know what/not to eat, & I eat healthy.  There's no way I'm gonna give up meat or my 'real milk'.  You know, in ancient China, a King was judged depending if his ppl was well fed/happy with their food.  I love food & will never give up what i enjoy most.  I guess i got my genes from my grandma; she suffered a lot in the war, with nth to eat.  This is the only thing i enjoy now, with good music... it's not like i could go to a concert alone any more (my wheelchair is always in the way).  How i wanted to see Madonna live!  I missed it last time 'cos of school...

I used to enjoy typing/communicating with my friends on-line, i typed >130wpm, as fast as my thoughts; now i could only type as fast as my mum (<20wpm)!

Oh Ray-san, you say you read some of my other posts... i tend to repeat myself, always moaning & can be extremely -ve; so don't follow it too closely, in case you rub off some of my negativities.   

Oh, i'm actually uneasy with your posting the testing figures... nth wrong with it but i feel somehow we're controlled by those numbers.  I dare to face the truth...  isn't it strange, when you were a child, you feared the dark; when you become an adult, you fear the light!  Perhaps it's just me.

[wellington]

When my CD count was confirmed at 45, I was in pretty rough shape. I had a tickling cough that had plagued me for about 9 months - no I wasn't pregnant - and it just kept getting worse and worse. Eventually, I had trouble preparing meals and taking care of myself. Getting up to go to the washroom or to bed was also a struggle. In May 2006, I found myself in intensive care for several days and I was in dire straits. At that time, I had lost almost 30 pounds and was extremely weak. Meds had started about a month before that, but the cause of the coughing had yet to be diagnosed. it was, as one might expect, PCP.

After being dischagred, or rather leaving on my own steam because I just needed to be home, I began to get slowly better. Now, some 3 months later, I have a great tan - thanks to the great summer weather - have put back on all my lost weight, and aside from my visits here, think of myself as luckily healthy. I have vowed to stay on top of my care from now on and not neglect appropriate treatment - insisting where necessary.

When I said better to live with the devil you know, I was trying to emphasize the importance of the working relationship with your medical team. Invest the time and take control of your health. Educate yourself. If you then find that your support team is not able to give you the care or treatment you require, look further afield. Don't jump before you have new arrangements in place, however!

I know it's tough sometimes to see the positive when health flags and life's little evnts tend to burden. I'm not always the most positive person, either. However, since being diagnosed, I have re-invented myself, so to speak, and I plan to live every day to the fullest. It's working well, so far!

[DanielMark]

So, would you switch to another GP if you don't like the current one?  Actually, how often would you change your drugs?  I see it happens a lot here... perhaps  there wouldn't be an issue  if there was no change

Hi Nick,

I'm late to the party as usual (don't hang out here much).

YES definitely change GPs if you don't have faith and trust in your current one. Mine is okay for general things, but I rely solely on my HIV specialist for anything HIV related.

I was diagnosed this month in 1988. I lasted years and years on no meds, but eventually the big V got me.

In 2002, my viral load was more than 500 000. Not sure what my CD4 count was. At first I was put on Kaletra and Combivir and also Septra. But after my CD4s got above 300 I was taken off that one.

Last check (in June) my CD4 count had gone from around 360 to over 1100. Go figger.

To be honest with you, I don't fixate on the numbers, but rather how I'm doing in general. I live in Canada and we don't use the % system. Good thing for me since maths were never my strong point. LOL

Daniel

[emeraldize]

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