POZ Community Forums
Main Forums => Pre-HAART Long-Term Survivors => Topic started by: Calison on May 30, 2013, 12:25:58 pm
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My First post here. Greetings to all.
I started taking AZT in 1989. CD4 was 64 in 1989.
I have switched HIV drugs over the years in trials, and when FDA approved new drug therapies, to try to elevate CD4 which has remained static all these years around 200 and to also perhaps tolerate side effects better. The Viral load has always been "undetectable" as reported for the tests available at the time. The CD4's wont increase much
None of the newer better drugs has ever been able to increase My CD4 beyond 350 and the labs range between 130 to 200 for the most part. For all these years.
Nutrition has been a valuable tool for me as well as exercise and Positive Attitude in my health care and life in general.
Supplements, Acupuncture, Massage, Chiropractic and support from family and friends have been available and enjoyed.
The CD4 just wont gain much increase. I have read a few articles about Thymus Gland Fatigue in LTS' on line and discussed it with The Doctor.
I switched to Complera a few years ago and the viral load is undetectable still... However, CD4 Consistently remains at 300 or below.
My Question is; Are there any other LTS who have adopted Complera as therapy even though GILEAD suggests it only be used by Treatment Naive?
I Tolerate Complera well and with past drug changes having little effect on my CD4 counts I don't expect, and so far it has not shown,any improvement on CD4 however Viral Load remains Undetectable.
Have any other LTS who are not "Treatment Naive" adopted Complera for therapy? I am looking at other drug therapies in case of the need to switch. I have tested no resistance to any of the HIV drugs so the world is my Oyster(so to speak) I can use any HIV combo I might choose without worry of any built up resistance. Yes I consider myself Lucky! Ha! I am also Grateful.
Thank You in advance for any kind consideration here.
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G'day,
i'm on Complera (marketed in Australia as Eviplera) and Raltegravir. Previously I'd been on a five drug combination. I got a modest increase in CD4s after the first 3 months going from 100 to 130 CD4s.
The only drawback I found with taking it, is that it must be taken with a substantial meal to get optimum uptake of the drugs. Other than that it's a nice pill, no side effects for me.
good luck.
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G,Day and thank you for your reply.
Yes the full meal for absorption seems quite important. Best Wishes to You for a healthy appetite.
Low CD4's after years of HIV treatments must not be that uncommon for LTS and since I tolerate Complera and Viral Load is undetectable I shall remain using it as my therapy for near future.
All the Best to You.
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Hey Calison,
First, welcome to the forums?
Regarding Complera, I know several people who take it and are doing very well with it. None of them were treatment-naive when starting it.
Unfortunately, yours is not an unusual situation. I have known quite a number of people who manage to get the virus under control, undetectable, but whose CD4s never rebound to robust levels.
This normally occurs when someone either started treatment with a very low CD4, as you said you did, or are co-infected with another chronic illness, such as Hep C.
I don't have any advice for you, but wanted to let you know you weren't alone with this issue.
HUGS,
Mark
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Thank You Mark
That is comforting to hear that I am not alone in the CD4 issue. That was indeed part of my question however I may not have stated that in my post. You are astute to have picked up on this.
The latest Doctor at the Clinic I attend made much about his desire to elevate my CD4's and has suggested more drugs. To learn this is a common issue with other LTS helps me greatly in my peace of mind.
I notice in local support groups here many are not LTS and indeed issues are quite different at times. This Forum has given me some great comfort.
I thank you also for insight that other LTS are using Complera with decent results. I am very interested in Maintaining easier therapy after all these years of Multi Pharma Digestion.
Big Hugs to You Mark :)
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Hi
Just for sake of comparison, I WAS treatment naive ( diagnosed HIV+ in 1989) when I started COMPLERA in April. My first blod draw will be in July,so we'll compare rise in CD4. Mine was 350 when I started COMPLERA.
My Doc said "I'll bet you'll be over 500 by July." hmmmmmmm?
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Hi
Just for sake of comparison, I WAS treatment naive ( diagnosed HIV+ in 1989) when I started COMPLERA in April. My first blod draw will be in July,so we'll compare rise in CD4. Mine was 350 when I started COMPLERA.
My Doc said "I'll bet you'll be over 500 by July." hmmmmmmm?
Best
Best wishes Bear! My latest lab report(yesterday) CD4 up 30 points from 3 months ago when I was quite ill with respritory illness. I wish You all the Best with Complera. I am doing good with it.
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Best
Best wishes Bear! My latest lab report(yesterday) CD4 up 30 points from 3 months ago when I was quite ill with respiratory illness. I wish You all the Best with Complera. I am doing good with it.
UPDATE and general greetings to all,
At least 30 years Poz here.
Latest Lab report received 04 June 2013 = CD4 165 and HIV-1 RNA not detected.
Using Complera as only HIV drug treatment and 20MG Lisinopril for HBP. I consume various supplements and vitamins and a very varied decent diet including many vegan choices.
Most everything else is manageable without Using other pharmaceuticals by my choice.
I used to consume a long list of prescribed drugs, including my own grown organic medical marijuana, for over 23 years that I no longer wish to consume as multi side effects had a cumulative effect that I no longer desire from each and every one of these prescribed drugs. I no longer can stomach them.
Every single doctor I have seen since 1989 has suggested the use of cannabis and now there are studies that show it is effective agent as antiviral! But it too had side effects for me.
I cope with this smaller drug regime fairly well and swim,walk ,and manage daily basic care for myself on my own . It is better this way, for now, with out all the other pharmaceuticals and using diet and supplements instead of Pharmacy.This is my personal choice and I do not suggest this for anyone else.
What the future holds is unknown, however today I am happy and my accelerated learning continues.
I have a small 10 pound dog who is 11 years old and has been my responsibility and Joy since he was 8 weeks old. We both mourn the loss of his Female Mate who passed so quickly in my arms on 30 September 2012 at 3:30 PM of heart failure. She had been my Joy and responsibility since she was also 8 weeks old, but I met her soon after she was born and saw her often and established a immense bond before I took her to my home from her mother and litter mates. She is the most amazing dog I have ever Known and I mourn her loss from our lives often. I have enjoyed so many animals my entire life having a small farm as a boy. I love truly love all beasts... being in the presence of some wild or domestic animal is my heaven for lack of a better term.
I have lost many friends, not all from HIV as I have an affinity for people much older than myself for all my life. So Human loss is a familiar game since my first memories.The spirit of these companions envelope my awareness almost every day and those are very good days.
My Mother might be in the beginning stages of Dementia and lives just down the street from me in her own home. I am learning much about this dementia and have great hopes that she will remain safe with the help of my siblings and extended family. I have a sense of great changes coming our way.
Life is good for now and I have always seemed to thrive on changes in life." As one door closes another shall open" has certainly made sense for me... However the fatigue I feel of late has me less enthusiastic about change, but I know I shall make it through ,any change, if I am able to take my own time in doing so. Patience is a lesson I am still learning but have come through that certain window of it by now. Best Wishes to all out there making life for whatever purpose you find. Hope to learn about you all as your posts are published. Best wishes to all, Calison.
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Hi Calison,
My friend had a steady, low CD4 count for several years. He recently switched to Complera and his CD4 count almost doubled while his viral load remained undetectable. There's one thing to be careful about. Tenofavir, in Complera, causes permanent kidney damage in 5% of the people who take it. Your serum creatinine level, an indication of kidney function, should be checked Every time you have lab work done. Best wishes. Hugs from Provincetown, Deibster
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Hi -- Late on this thread but very interesting. I too was diagnosed in 1989 with CD4s at 330 and on AZT soon after. Very treatment experienced, and wasn't able to maintain an undetectable VL until the latest regimen that I started 4-5 years ago. I've had peaks and valleys (75) in my CD4s, with the peaks usually happening early on in a new therapy. Rarely spiking over 500 or 600, usually in the 300s where I am now -- back to where I started. So is it worth my while to still strive to increase and maintain a higher CD4?
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I am happy to report that in 6 months my CD4 count went to 560 and my viral load to undetable. But....we'll see. I intend to switch off it due to gastric problems. I have acid reflux and am not happy with Complera because it will not allow me to take pantoprazole. I will be switching to Stribild.
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Hey Joel, good to hear about your CD4s and UD VL.
Have you ever been tested for H.pylori? it's a very common gastric bug and is a leading cause of ulcers and acid reflux. Unfortunately, it seems a lot of doctors aren't aware of it and so never test for it.
The treatment for H.pylori is rather intensive, consisting of at least two antibiotics taken for three weeks. However, when this little bug is cleared from your system, you should be able to dump the acid reflux treatment. As far as I am aware, the antibiotics used to treat it do not interact with any hiv meds.
I urge you to get tested for H.pylori. There are several ways of testing for it, but please be aware that the breath test is unreliable; it often gives false negative results. At the very least testing will rule it out as a possible cause but if it turns out to be the problem,
testing and treating will be well worth it.
I hope this may be the answer to your problem. I know of at least one person who was absolutely miserable with this bug (acid reflux and general nausea) and her doctor was blaming it on her calcium supplements. I urged her to get tested, she tested positive, and within a month was feeling her old self and able to keep taking her calcium supplements.
Yes, I know what forum I'm posting in, but I thought this was important. ;)
Good luck Joel!
Ann
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Thanks Ann