Starting Raltegravir

redo

Senior Member
Messages
869
Likes
153
I know it's only been days. But still: have you noticed anything? (both on the up and downside).

I guess normal side effects wouldn't be the major problem, but at the same time, temporary worsening of the symptoms could be a indication that the drug is doing something in body...
 

leaves

Senior Member
Messages
1,193
Likes
30
Thats great news! Keep us posted :)

oh and sorry if you told us this; but do you mind sharing whether you got tested for XMRV?
 

jimbob

ME/CFS84-XMRV+
Messages
321
Likes
9
Location
myrtle beach, s.c.
Not tested yet, but i'm classic case with acute onset 3/29/84 and diagnosis 1986. About 99.9% sure I have it. I will do the serology test when it comes out however.
 

leaves

Senior Member
Messages
1,193
Likes
30
Thanks! Great you post here, very excited to hear all your experienes and keeping my fingers and toes crossed for you.
 
Messages
92
Likes
0
Location
Ormond Beach, Fl
jimbob,
thank you for letting us know about your experience with Raltegravir. I am getting close to trying it if I can find an infectious disease doctor who will prescribe it. I have had this disease since 1987 so it is time I got a break. Was it hard to find a doctor to treat this virus.
Hang in there. We are all pulling for you.
Jean
 

jimbob

ME/CFS84-XMRV+
Messages
321
Likes
9
Location
myrtle beach, s.c.
My doc is a rheumatologist, who mainly treats women with fibromyalgia. But she was the best I could do when I moved to myrtle beach over 14 yrs ago. I've educated her somewhat and she pretty much lets me try whatever I want. couldn't find infectious desease doc in the area. Forms to fill out for assistance for Ral were short and quick and enabled me to even try it.
 
C

Cloud

Guest
One problem, the drug was not tested on people with ME CFS, who are pathologically drug & chemical sensitive.
I have never heard the word "pathologically" used regarding our med intolerance....But it's right on! "Sensitivity" is not the right word and, I have been telling doctors that for years. It's definately a pathological problem, and I think this is true for many of us. Honestly, this is an issue that's been on my mind since the discovery that some of these drugs are effective on xmrv. If I can't handle the smallest dose of most drugs, how in the world would I ever tolerate big gun anti retrovirals, especially in combo. I think this is a very important issue that's being overlooked in this push for the right drug.
So....I work away on methylation anxiously hoping to improve my med tolerance ability. Maybe they will come up with an anti-retroviral that's entirely dealt with through the kidneys (like Vistide) which would bypass a lot of this problem of intolerance. Sometimes I luck out and get a med that's handled through a different cytochrome enzyme and I do just fine with it. Maybe I can handle Raltegrevir since it does have a low toxicity profile? Probably gonna find out real soon.
 

jimbob

ME/CFS84-XMRV+
Messages
321
Likes
9
Location
myrtle beach, s.c.
I know what your saying cloud, I've been that way over the years also, low dose everything! When I started Ral, I had to take it as prescribed and that scared the sh-t out of me! However, so far (been a week) I'm handling very well! Still no significant change since my last update.
 
C

Cloud

Guest
I know what your saying cloud, I've been that way over the years also, low dose everything! When I started Ral, I had to take it as prescribed and that scared the sh-t out of me! However, so far (been a week) I'm handling very well! Still no significant change since my last update.
I just came back in this thread to ask you that very question. I'm really glad to hear your handling it well Jimbob.....hope that continues. Thanks for keeping us in the loop too.
 

Gemini

Senior Member
Messages
964
Likes
2,016
Location
East Coast USA
I If I can't handle the smallest dose of most drugs, how in the world would I ever tolerate big gun anti retrovirals, especially in combo. I think this is a very important issue that's being overlooked in this push for the right drug.
Cloud,

Right on. Research shows chronic immune activation & cytokine exposure dysregulates the cytochrome enzyme system which might be one cause of ME/CFS drug intolerance. Aniother might be genetic predisposition and DNA testing is available to check that out before you decide to take a drug.

Gemini
 

jimbob

ME/CFS84-XMRV+
Messages
321
Likes
9
Location
myrtle beach, s.c.
grant107 I just checked with one of the senior members about the dose before I started, so that's why i'm doing 400mg twice a day. Who really knows for sure, this being an HIV drug. I don't seem to be experiencing any side effects, so I guess this is o.k. My Rheumy signed off on the dose also, not that she's an expert or anything. I've had to educate her some!
 

jimbob

ME/CFS84-XMRV+
Messages
321
Likes
9
Location
myrtle beach, s.c.
Sorry, I haven't updated in a while, 22nd day on Ral. Able to do more during the day stamina wise. brain power (conversations/searching for the right word) is much better! Also, my mood has improved without the help of antidepressants. Jim
 
Messages
92
Likes
0
Location
Ormond Beach, Fl
jimbob, I am so happy for you. I have been anxiously waiting to hear how it is going. I am trying to make myself wait until September after the NIH workshop on xmrv. However, I am convinced Ral is going to help.