Stopping Truvada because of osteoporosis

[ChefDD]

Good news    is my viral load has been under 48 for over a year and CD4 count is 541! I am on a super max salvage regime as my ID calls it: Issentress, Intellence,Prezista & Norvir, and Truvada. My virus is what I call a "mutant ninja virus" because several drugs are ineffective at stopping the virus. Bad news I have osteoporosis in my hips (-2.6 in each) and osteopenia in lumbar spine. Tenofivir is a suspect in the lower bone loss problem many are facing. Length of time on Viread was several years.  I want to stop the Truvada but ID stays he is against it because of my mutant ninja virus. What do you all think? I am on Fosamax and take calcium every day with vitamin d. Blood and urine tests showed that I was not shedding calcium or vitamin d. I don't smoke and I exercise everyday. Yes, I am a member of the Senior Varsity Class: Over 50 and diagnosed in 1986. Should I force the issue? I am going to a new ID for a second opinion.
Cheff DD

[veritas]

ChefDD,

Tuff question to answer. I am on truvada,prezista/norvir,isentress with the same viread issue. (osteopenia in hip) I have increased my vit D and resistance exercise so I am waiting for another Dexa scan to see if that helps. My virus is heavily mutanized also.
I would wait for your second opinion and ask how dangerous it would be to eliminate the truvada. With salvage regemins, it's usually better to hit the virus at all locations (protease, integrase, reverse transcriptase etc). Get all the info you can before making a move. Let us know what you decide.

Good luck,
v

[Assurbanipal]

Well, I traded out Truvada for Epzicom because of osteoporosis. 

But it was a tough sell to the ID doc, and if there hadn't been some persistent low level viremia we might still be arguing...

[Miss Philicia]

I have all of the same problems with multi-resistance, etc.  I've not encountered osteo issues (yet) though I've been on viread/truvada ever since viread was FDA approved late 01/early 02.  I'd have to dig up my last resistance test, but I'm quite sure that at least at the time it was my last best option in the NRTI class so I'm not sure what I'd switch to (also had Ziagen hypersensitivity reaction a decade ago), and I must assume that ChefDD may be in a similar situation in that regard.  Obviously if you are having osteo issues then you need to switch off of it.

ChefDD, I'm just curious what you're route was in discovering the osteo issues -- were you having any repeated fractures or did you test low with Vit D/calcium, or did you just skip right to having a dexa scan?

[Hellraiser]

Just a question for you two...

By running out of treatment options was it just a slow progression over time that the virus mutated and the meds were unable to control it any longer, a lack of adherence, or did it come out of the box with some nasty resistances?

Just curious.

[Miss Philicia]

Just a question for you two...

By running out of treatment options was it just a slow progression over time that the virus mutated and the meds were unable to control it any longer, a lack of adherence, or did it come out of the box with some nasty resistances?

Just curious.

For those of us on treatment pre-HAART it was an issue of mono and/or dual-therapy, not adherence.  Also keep in mind that at that time there was no viral load testing or even geno/pheno testing, so if your cd4 and % were going in the wrong direction for a duration they'd switch you around to other meds.  Also, even when the first PI came out (saquinavir) the formulation was weak/poorly absorbed, and by the time Roche figured this out and reformulated it the next year many of us developed resistance to the entire PI class.

I get this question a lot on here via PMs as I think a lot of new people don't realize what treatment was like pre-1996 or so.  This is why there has been so much focus this past decade in developing second generation medications targeted at resistance profiles (prezista, etc.)

[ChefDD]

     Miss Philica and I are very similar. I started AZT in January of 1989! I was able to tolerate the 2 pills every four hours for about 4 or 5 years. When drugs started to develop I and my dr added a few more. The mulit resistance developed gradually until 2000. My viral load went up to 100,000. I tried ziagen, sustiva, and the worst one was viramune. I got hepatoxicity from viramune. The other meds gave me severe rash and vomiting. From 2000 to 2008 , we found a less toxic cocktail of drugs but I always ran a low but detectable viral load. 2008 saw a jump up to 400 for about 6 months. We did a geno and the virus to be multi resisitant. I have been on Viread the longest of the group. The past 15 months of no viral load is the longest I have experienced since test began for the virus.
     How did I find out about the bone density problem? Last year I had a horible stiff neck. Checked out a local chiropracter who did a spine x-ray. He suggested further testing. Next came and new rounds of blood work and a 24 hour urine catch ! Dexa scan came after all the results were negative. Fortunately I had one done back in 2006. I have lost a total of 17  % of the bone density since 2006. Going for the second opinion will give me a better insight. I am collecting recent research on the tenofovir bone density problem and will take it to the visit.
     Adherence has not been a problem because I got use to 2 pills every four hours back in 1989 to 1994. More pills is just more pills. Thanks for all the advice. I pill post after my visit. My guess is since I have never been this long with no viral load it will beea difficult sell to stop the Truvada.
     Hey Miss P maybe were twins?
Take care everyone
ChefDD

     

[ChefDD]

Slow progression for me over 22 years on meds. The lowest Cd4 count was 250 back in 1991. I remember the visit because after coming home the Soviet Union tried it last take over of Gorbachnev.
How is your numbers and meds doing if you are taking any Hellraiser?