When is Enough Enough?

[Assurbanipal]

I put this in as a poll, but am hoping for a lot of discussion too.  Basically I'm frustrated (and, to be honest, a little scared) about how things are going and am debating whether to demand a new regimen.

(Note, for those that have changed HAART regimens multiple times please answer the poll for the most recent change.)

Here's the backstory

 -- On HAART almost three years, Kaletra and Truvada.
 
    First side effect was mild diarrhea and an increase in cholesterol / triglycerides.. With a statin, diet and adding 25-35 miles a week on the stair machine got that under control. 

    Then came osteoporosis and a broken wrist.  No guarantee that osteoporosis was due to HAART, but VERY likely.  According to the endocrinologist bone loss is continuing.  So I tried one of those bone drugs (fosamax) and my blood pressure almost doubled. going to levels I did not realize were even theoretically possible. 

    Stopped the fosamax, but as a once a week pill it sticks around for a while.  Stopped the exercise routine too for a month and a half and just slowly started back.  My blood pressure is still 30 points higher (systolic and diastolic) than it was.  And without the exercise routine the latest labs to come back show cholesterol and triglycerides levels higher than ever (and a viral load blip).

    I guess I could just keep adding pill after pill, a new statin, maybe a triglyceride drug too, another bone drug and then a antihypertensive to control the high blood pressure it gives me, and then maybe another pill for whatever side effects come from these pills...   

    And maybe that is the answer.  If my current HAART combo were the only one available I would just accept it, but there are so many different HAART drug classes that it feels like it would make sense to make a switch and see if I could get rid of some of the side effects and the pills that manage them (and cause more side effects).



So ... I'd love for you all to get comfortable, put your feet up and talk about:
What would you do?  If you initiated a change, what motivated you to make a change and how did you talk to your doctor(s) about it?  Should I just suck it up and add a few more pills? (Sooner or later I'm not going to be able to down them with Scotch I suspect). 

Sorry this is half a rant, but ...

Thanks
Assurbanipal

[Peter Staley]

The suspect drug here would be the Viread in your Truvada, which has been associated with bone loss.  However, I've rarely heard of someone getting osteoporosis from Viread in just 3 years. 

Then again, our understanding of this Viread side effect is still in its infancy, so no one can rule this out as the cause.  But as you make your decisions, keep in mind that it's just as likely that you had pre-existing osteoporosis before you started this regimen.  Unless you had a baseline bone density test done, you won't be able to rule this possibility out.

If you do decide to avoid the Viread, swapping the Truvada with Combivir might be the way to go (I would have said Epzicom, but with your blood pressure so high, I'm not so sure -- worth discussing with your doc).

[Dachshund]

I've made two major changes to my HAART regimen over the years. Both were made by me after consultation with my ID doc. Both changes were made because of (for me) intolerable side effects. I dropped Sustiva for Kaletra because Sustiva made me feel psychotic. I dropped Kaletra for Prezista because of the shitty side effects. I did give both the old college try (a year or more) before listening acutely to what my body was telling me. My doc would have never made a change without my insistence or input. Thankfully, I've had options and a doc willing to listen and work with me.

I can't give you advice on your particular situation other than to discuss it openly and honestly with your doctor.

[David_CA]

I've been on Atripla for a bit over two years.  The only 'medical' side effect I've experienced concerns vitamin D / calcium.  I guess it's a very early 'stage' of osteoporosis.  My Dr. suggested 2-600mg calcium with vitamin D's a day.  I've been taking those for about 6 months, and my most recent labs two weeks ago showed my numbers in the range of where they should be.  I hope you get your med issues straightened out soon.

David

[minismom]

In the first 18mths after diagnosis, Mim was on 10 different meds.  Her changes were due to resistence and inability to lower her load to u/d.  Last year, her Susteva was changed to Viramune at my request due to continued lipid issues and her lipoatrophy.  After a short time, she had a reaction to her Viramune and was taken off.  It was never replaced and Susteva was never re-instated.

 I have been fighting tooth and nail to get her off of Zerit, due to the neuro-toxic effects and Mim's resistent to it,  and her PID flat out refuses.  Why?  I have no idea.  I can tell you that she (doc) doesn't attribute ANY of Mim's co-morbid conditions to side-effects of her meds.  A point that is constantly argued.

In light of her recent increase of neuro-issues, I'm concerned that Mim's long-enjoyed u/d load (nearly 7 yrs) may have come to an end.

Mum

[AlanBama]

It's certainly not unreasonable for you to discuss a change in HAART with your physician, because of the quality of life issues (major side effects) that you are dealing with.    Now, how he or she may feel about a change is something that seems to vary widely among I.D. docs....some are quite open to the possibility of changing due to side effects, others don't want to switch you unless is it ABSOLUTELY necessary....or at least, that has been my experience over the past 22 yrs.

Good luck, and let us know what happens.

Alan 

[Assurbanipal]

Thank you for your replies.  They were all very helpful. 

I started to respond a couple of times before, but ... don't know if it is brain fog or the emotional reaction from having people who understand exactly where you've been ... Some days it is all I can do to read here; I just can't string two sentences together.

Alan, my ID doc is the type you and Mum describe.  When she wrote the referral for the endocrinologist she said half-jokingly "Now you tell him his job is to find some way to fix things so we don't need to change your medications."  It may be that I will need to get a second opinion or change doctors, but if that is what needs to happen there are other ID docs within an hours drive.

David it's great that your doctor is monitoring your calcium and vitamin D - I'm on those now as well, but still losing bone mineral density according to the NTx tests my endocrinologist did. 

Thanks Dachshund for sharing why you changed -- that was precisely the sort of personal insight I was looking for.  I've given this combo a little over 2 and a half years and am thinking that the side effects are magnifying each other.   Its helpful to hear why you switched and how you went through it with your doctor.

Peter thanks for the Combivir suggestion.  I had fingered the Viread and perhaps the Kaletra as well.  You are right that without a baseline DEXA I can't really know whether the osteoporosis is caused by the drugs or the HIV-- but since my viral load is now controlled and I'm still losing bone mineral density it seems likely that the drugs have at least some role. And given how much bone density I've already lost (well into osteporosis of the spine and borderline osteporosis vs. osteopoenia at the hip) it seems prudent to not risk additional loss and see if there is some way to reverse some of it.  Of course  the Kaletra is almost certainly the source of the lipid problem.  So I've been thinking that perhaps I should agitate for a move to Isentress as well -- it seems to be measuring up well against Kaletra in the lipids category at least.  That way if I need to be on some bone medicine that requires an antihyertensive at least I may be able to lose the statin.

It's only been a little over 2 and a half years; the intensity of feeling rescued by these meds is still there.  But the more I read, the more it sounds like the chance of any one side effect is almost random with the modern drugs.  If so, I guess I'm ready to roll the dice again.

Thanks