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Author Topic: Problems with Sustiva  (Read 1412 times)

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Offline LordBerners

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Problems with Sustiva
« on: May 11, 2008, 02:05:46 AM »
Well I have been back on Truvada and Sustiva for about five days, and I am experiencing the exact same symptoms that caused me to stop it last time - loss of appetite, food seems disgusting, fever, and total exhaustion. 

Last time when I stopped the Sustiva and continued the Truvada for a few days to reduce chances of resistance, I started to feel better, so I blame the Sustiva. 

My doctors always insisted that they had never heard of these symptoms and that they must be caused by an unrelated illness, but the evidence is too clear now.  Has anyone else had these symptoms?

Now I need to find a new regimen, but with a weight of only 145 pounds and cd4 of 189.
Please, just call me Berners.. or Baron.

Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Problems with Sustiva
« Reply #1 on: May 11, 2008, 07:19:58 AM »
Berners,

Did you ever get to the bottom of your suspected lymphoma? I can't help but wonder if whatever is going on with that is the real cause of your loss of appetite - and seems coincidentally linked to the Sustiva.

How is the suspected lymphoma thing going anyway? Did you manage to get a biopsy? Are you still coughing?

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline LordBerners

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Re: Problems with Sustiva
« Reply #2 on: May 11, 2008, 07:38:39 AM »
Thanks Ann.  Yes, I just had a biopsy a few days ago, and should get the results within next week.   But no, this is caused by the Sustiva, as I have tried it twice now and had precisely the same reaction - within a few days, I lose all appetite, food seems disgusting, and I get feverish and exhausted.  In the first go-round as soon as I stopped the Sustiva I started to feel better, and within a few days my appetite came back.

Regarding the lymphoma possibility in general, other than when I started meds I have been feeling fine, and have been coughing less, though I still run the risk of vomiting if I eat the wrong foods.  I am still concentration-camp thin though, which makes me feel a pariah.
« Last Edit: May 11, 2008, 07:40:18 AM by LordBerners »
Please, just call me Berners.. or Baron.

Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Problems with Sustiva
« Reply #3 on: May 11, 2008, 07:40:44 AM »
Keep us posted on the biopsy, Berners. Good luck with that.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Peter Staley

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  • Founder & Advisory Editor, AIDSmeds.com
    • AIDSmeds.com
Re: Problems with Sustiva
« Reply #4 on: May 11, 2008, 08:37:17 AM »
Berners -- I kind of agree with you doc -- it doesn't sound like the Sustiva.  The side effects sound much more like the short-term ones folks can get when adjusting to Truvada.  But you know your body the best, so you should trust your instincts.

I have a question though -- the first time your tried the regimen, how long were you on it before you stopped the Sustiva and started feeling better?   I'm wondering if the reason you started feeling better was because you were ending your adjustment period to the Truvada, and it was only coincidental that you had also stopped the Sustiva.  Does this make sense?

Either way, I'd recommend you give this regimen a try for at least 4 weeks to see which side effects are just short-term adjustment effects versus long-term side effects.

Peter

Offline komnaes

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Re: Problems with Sustiva
« Reply #5 on: May 11, 2008, 09:52:05 AM »
It sounds tough Lord... just dropping in to give my supports.

Hugs, Shaun
Aug 07 Diagnosed
Oct 07 CD4=446(19%) Feb 08 CD4=421(19%)
Jun 08 CD4=325(22%) Jul 08 CD4=301(18%)
Sep 08 CD4=257/VL=75,000 Oct 08 CD4=347(16%)
Dec 08 CD4=270(16%)
Jan 09 CD4=246(13%)/VL=10,000
Feb 09 CD4=233(15%)/VL=13,000
Started meds Sustiva/Epzicom
May 09 CD4=333(24%)/VL=650
Aug 09 CD4=346(24%)/VL=UD
Nov 09 CD4=437(26%)/VL=UD
Feb 10 CD4=471(31%)/VL=UD
June 10 CD4=517 (28%)/VL=UD
Sept 10 CD4=687 (31%)/VL=UD
Jan 11 CD4=557 (30%)/VL=UD
April 11 CD4=569 (32%)/VL=UD
Switched to Epizcom, Reyataz and Norvir
(Interrupted for 2 months with only Epizcom & Reyataz)
July 11 CD=520 (28%)/VL=UD
Oct 11 CD=771 (31%)/VL=UD(<30)
April 12 CD=609 (28%)/VL=UD(<20)
Aug 12 CD=657 (29%)/VL=UD(<20)
Dec 12 CD=532 (31%)/VL=UD(<20)
May 13 CD=567 (31%)/VL=UD(<20)
Jan 14 CD=521 (21%)/VL=UD(<50)

Offline LordBerners

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Re: Problems with Sustiva
« Reply #6 on: May 13, 2008, 02:20:44 AM »
I have a question though -- the first time your tried the regimen, how long were you on it before you stopped the Sustiva and started feeling better?   I'm wondering if the reason you started feeling better was because you were ending your adjustment period to the Truvada, and it was only coincidental that you had also stopped the Sustiva.  Does this make sense?

Yes, that does make sense, but it is too late as my doctor has ordered me to again stop taking Sustiva and continue the Truvada for 5-7 days to reduce resistance, just like last time.   I can't recall how long it was that it took for me to feel better last time but I felt somewhat better within a few days.  To be honest I haven't really felt fully well since I tried the meds.

Quote
Either way, I'd recommend you give this regimen a try for at least 4 weeks to see which side effects are just short-term adjustment effects versus long-term side effects.

Peter

Wow, I'm concentration-camp thin, can't eat, so weak I can't walk up stairs, and constantly exhausted.. I can't really imagine being able to deal with this for four weeks - I think it would be very likely I would collapse somewhere.  Maybe if I were in hospital... 
Please, just call me Berners.. or Baron.

Offline Peter Staley

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  • Founder & Advisory Editor, AIDSmeds.com
    • AIDSmeds.com
Re: Problems with Sustiva
« Reply #7 on: May 13, 2008, 10:31:25 AM »
Wow, I'm concentration-camp thin, can't eat, so weak I can't walk up stairs, and constantly exhausted.. I can't really imagine being able to deal with this for four weeks - I think it would be very likely I would collapse somewhere.  Maybe if I were in hospital... 

Fair enough.  Again, I'm a firm believer in trusting your own instincts.

 


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