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Blixer
Legend

Reged: 01/10/06
Posts: 599
Loc: Missouri
Decisions, decisions....
      #189944 - 05/06/06 09:45 AM

Hello everyone! I've kind of been out of the loop and out of sorts the past couple of weeks with my meds issues. And now I've got decisions to make. Up to this point I had researched everything out and I knew what I wanted to do in terms of meds. Now that I've had this extreme leg pain and had to go off the meds I'm just kind of really at loose ends. The pain has lessened in the past 8 days that I've been off of meds, but it still causes me a lot of issues in the night. I've only had one night in the past 3 weeks that I haven' t had problems. And then there was the rash. It started just about the time I stopped meds but is now on my ankles, top of my feet, heels, knees, elbows, wrists, and back of hands. At least it doesn't itch or hurt.

So now to the decisions... I met with my doctor yesterday and he wants to wait till the pain is gone before restarting meds. He does beleive that the pain was caused by the meds although this is a very very unusual side effect. The doctor was going to change me to Viramune but my CD4 count is too high for that. So his suggestion is to rechallenge with the same meds that I've had trouble with. He thinks the problem is the sustiva. (I'm not sure if my other med is Epzicom or Truvada because I'm in the study). His reason for doing this is to keep me in the same class of meds and not open up the third class so early in my treatment. I'm just not sure of several things... first, if sustiva was the problem is there any likelihood that going back on it would have different effects. second, if I'm on Epzicom I know the chance for a bad reaction on restart is much greater than at first. so that is a concern. Third I guess is the fear that if I've had problems so early, am I going to have problems with everything. Just so many unknowns and for the first time I really don't have a clue as to which way to go.

So any insights or thoughts from my friends here would be appreciated. I've been pretty up beat about things until now.

Thanks!

--------------------
David
Sustiva, Epivir, Videx EC


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Bear60
Legend

Reged: 12/21/05
Posts: 1390
Re: Decisions, decisions.... new
      #189949 - 05/06/06 10:50 AM

Hi David
It's nice to see your post and hear how you are doing. I wish I could advise you about meds but that is not my expertise. I do, however, have a lot of experience in "living with HIV positive guys" and I hope you continue to take care of yourself and be careful with what drugs you take.
Hang in there honey!!!!!!

--------------------
6 ft tall poz bear in Philadelphia

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AIDS2HIV
Unregistered

Post deleted by Becky new
      #189955 - 05/06/06 11:51 AM



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Blixer
Legend

Reged: 01/10/06
Posts: 599
Loc: Missouri
Re: Decisions, decisions.... new
      #189971 - 05/06/06 01:45 PM

I agree that my well being and safety are number one. I don't think the doctor is trying to force me to stay in the study. I think he is truly trying to weigh out what is best. His first decision was to switch me to Viramune... he suspects the Sustiva is the culpret based on his professional judgment. But, my cd4 count is too high to start Viramune.... So I'll wait and see what Monday brings when I go back in. And I'll wait and see if the leg pain starts to fade quickly now. I sure hope it does.



--------------------
David
Sustiva, Epivir, Videx EC


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goofyme
Fanatic

Reged: 03/15/06
Posts: 56
Loc: nyc
Re: Decisions, decisions.... new
      #189995 - 05/06/06 03:10 PM

Hi David,

Glad that you are back in the loop somewhat. Hope you are feeling better.

Hope you and your doc can figue out what is going on soon.

be well and healthy,

goofyme

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samS
Newbie

Reged: 04/06/06
Posts: 7
Loc: New York, NY
Re: Decisions, decisions.... new
      #190026 - 05/07/06 02:37 AM

Have you thought about replacing Sustiva with Rescriptor?
I had a very virulent allergic reaction to Sustiva; however,
Rescriptor has been effective at keeping me undetectable
with no apparent adverse reaction. Additionally, at my doctor's advice, I take Rescriptor 600 mg BID instead of the recommended 400 mg TID dosing.

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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Re: Decisions, decisions.... new
      #190044 - 05/07/06 09:34 AM

David I got your messages on my phone last night.. Call me today Sunday and lets talk and see where your head is at today... I can understand your frustration, your worry and every concern you have been going through. Me and William are praying for you each and every day... William sends is love as I walked out the door this morning to head off for work. Everyone is praying for you! I personally think since you have bounced so many questions off so many "Super Expert Docs" who are pretty much saying the same things is to trust in what they are doing for you. Even Ben was in agreement as to what your reactions were pointing or not pointing to. They WILL find the right set of meds for you WITHOUT blowing a class of drugs for you as well. They know what is at stake and I dont feel this is some sort of headgame treatment they are doing either. In the end, it is your decision as to how next to proceed and non of us are going to tell you what is right and what is wrong. All I want to be sure of is our precious David is being taken care of and that his quality of life returns..

Love Always,


Eric

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Blixer
Legend

Reged: 01/10/06
Posts: 599
Loc: Missouri
Re: Decisions, decisions.... new
      #190062 - 05/07/06 11:06 AM

Thanks for the encouragement Donnie and Eric. In my mind I know I'm doing the right thing and I really do think I know what decision I need to make.



--------------------
David
Sustiva, Epivir, Videx EC


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Blixer
Legend

Reged: 01/10/06
Posts: 599
Loc: Missouri
Weekend update new
      #190063 - 05/07/06 11:08 AM

The study protocol that I'm on says that "You may not learn what drugs you hav ebeen on until after the study is over unles syou have a serious side effect and need to change treatments. If you do not lower your viral load or if you have severe side effects from these drugs, you can change anti-HIV drugs." So I take it that it is possible to change drugs and potentially unblind and still stay in the study. And at least in my mind what I've experienced here is a serious side effect. Maybe even a dangerous one. I'm not making the study the end all of things, but I do support the concept of studies such as this. And actually, my reaction to the drugs could provide some additional valuable information. Part of the study is looking at the tolerability of the combos. In my case, whatever I'm on is not tolerable for me. If they can change the drugs and I can still be in the study, then I'd like to do that. I think the 4 possible combinations in the study are 4 of the best first line combos out there.

The night time pain has not subsided yet. It seems to be worse with inactivity. I keep thinking that it will begin to go away. Of course, I have almost no day time pain so that is a big improvement. I must not forget that. I'm planning on waiting till the pain goes away before deciding to do anything. and the rash hasn't gotten any worse. It doesnt' itch or hurt except on the feet where it is irritated by my socks and shoes. I may have to go back to being barefoot.

I'm counting on everything going back to normal when I get whatever it is out of my system or when whatever damage was done gets healed. I've heard that it can take a month for the pain from meds to go away. I'm at day 9 now. I just get impatient sometimes.

On Friday the doctor did mention three options... 1--going back on the same drugs as a rechallenge, 2--changing sustiva to Viramune (can't do that because cd4 is too high), 3--unblind the study and change all meds. Right now I'd vote for option 3. And I'm thinking that almost 3 weeks of pretty severe pain would justify unblinding and making sure we don't get back in the same situation. but that's me....


--------------------
David
Sustiva, Epivir, Videx EC


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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Re: Weekend update new
      #190064 - 05/07/06 11:18 AM

David I choose option 3 and then make decisions! This is so fucked up when you can find out what your on and make a change based off of the knowledge of what drugs you are on. DAH! I dont understand why they have not unblinded the fucking thing already! I just dont!

Love and Unblind!

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goofyme
Fanatic

Reged: 03/15/06
Posts: 56
Loc: nyc
Re: Weekend update new
      #190065 - 05/07/06 11:22 AM

Hi David,

I agree with you that option 3 would be the one the try. At least for now. Don't know if you have done any labs while on the study, but that may tell if it is good for the hiv or not. However, the side effects that it had on you are not acceptable.

So yeah, I would go for option 3 at this time. There are a few class of meds out there already, not to mention the new ones. I am sure there are ones that you will have few or no side effects at all. Take the meds with the fewer possible.

I hope you are feeling better with each day.

be well and healthy,

goofyme

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