Author Topic: At what point did your doc take you off of prophylaxis treatment? (Read 5481 times)

koi1 · « **on:** February 27, 2007, 07:57:57 pm »

I am currently taking dapsone for PCP preventiion. Do you guys remember at what point your doc decided to take you off of preventitive oi treatments? I am hoping to break the 200 cd4 count soon.

rob

Basquo · « **Reply #1 on:** February 27, 2007, 08:10:04 pm »

I had community-acquired bacterial pneumonia and was prescribed Levaquin and Bactrim by the ER doc. 8 days later my doc told me to stop the Levaquin, and I had already stopped the Bactrim the same day, and on the 10th day I ended up in hospital with a severe reaction to sulfa drugs. They thought I had measles and meningitis when I presented, but luckily there was an Internal Med doc who recognized it for what it was.

So I guess this doesn't have anything to do with counts, just an allergic reaction. But I'm glad I know, for when I get there.

J.R.E. · « **Reply #2 on:** February 27, 2007, 08:14:34 pm »

I was on Bactrim briefly in the beginning, started on that October of 2003, with the t-cells at 16.

I switched to Dapsone, probably around December of 2003, and remained on the dapsone until sometime in January of 2005. I had a t-cell count of 253 in October of 04, ( you can see below) so I went from that point until January, when the doctor had told me it was ok to stop the Dapsone. So , I was on Dapsone for a period of about 13 months I guess.

I must admit I was a little hesitant on stopping it, but it was nice to have one less pill to take.

You'll get there------Ray

koi1 · « **Reply #3 on:** February 27, 2007, 08:20:50 pm »

Hey Basquo,

I ended up int the hospital with a bactrim allergy as well. Although they knew that it could be an allergy to the bactrim, they made sure that is all it was. So after tons of diagnostics, iincluding a spinal tap, they concluded that it was the bactrim. I just want to stop the dapsone because it is still a sulfa drug and it tends to get my liver enzymes up substantially.

And yes, JRE one less pill would be great !

marc11864 · « **Reply #4 on:** February 27, 2007, 08:28:52 pm »

I was to be on Bactrim until I got above 250 but I took myself off at 200.

Matty the Damned · « **Reply #5 on:** February 27, 2007, 08:39:03 pm »

Apparently I have to be on Bactrim until I've been above 200 CD4's for at least three months. For a Red Irish living in the world's sunniest climate this is not fun. My CD4 count was 90 (10%) in January up from 15 (5%) in November.

I suspect I may be on Bactrim for quite a while.

MtD

koi1 · « **Reply #6 on:** February 27, 2007, 08:47:25 pm »

Yeah MTD, I have heard that docs are also looking at a maintenance of cd4 cells above the 200 range for the preventetive treatments, especially if people have had pcp before like I did.

rob

Matty the Damned · « **Reply #7 on:** February 27, 2007, 08:51:39 pm »

When my CD4s were down around 5% I had Satans Own Thrush. All through me. Just ghastly. But once it had cleared up, they took me off the fluconazole. Apparently there's some debate amongst the medical types down about whether or not one can develop resistance to it.

My immunologist, The Felcher believes that resistance is a real and present danger for poz bodz. My sexual health physician Frau Eva maintains that this only a problem if one has a vagina.

I'd like to see them mud-wrestle to resolve the issue.

MtD

Jody · « **Reply #8 on:** February 27, 2007, 08:52:20 pm »

I was on Bactrim for quite a few years early on but when I was consistently over 200 my doctor said it was OK to stop...I believe I took it every other day for a while before stopping...I haven't had pneumonia or been hospitalized since 1995 when I first began HIV and prophylactic meds late that year.

Jody

koi1 · « **Reply #9 on:** February 27, 2007, 09:00:29 pm »

Yeah, they say that Bactrim is the primo treatment for pcp. The dapsone, I take every night, so it is more of a burden on my liver. It is so great to hear everyone's experiences.

MTD I also had thrush, Got it twice. The first time I followed the treatment to the letter, and it went away. When it came back, I was pissed. I started the treatment, but then I stopped taking the clomatrizole because I just couldn't suck on those lozanges every three hours like they wanted me too (much rather suck on other things). But, as soon as my cd4 count rose above the 100 range, it went away, luckily.

Hugs,

rob

J.R.E. · « **Reply #10 on:** February 27, 2007, 09:10:32 pm »

Quote from: Jody on February 27, 2007, 08:52:20 pm

I believe I took it every other day for a while before stopping...I haven't had pneumonia or been hospitalized since 1995 when I first began HIV and prophylactic meds late that year.

Jody

I was the same way. I took it daily, at some point the doctor then told me to take it 3 times a week. So, I took it monday, Wednesday, and Friday. I took it this way untill I stopped taking it entirely.

Ray

Miss Philicia · « **Reply #11 on:** February 27, 2007, 09:49:27 pm »

I went off Bactrim due to allergy but it was around the time I would have been off it anyway. In the area of +250 for a length of time where it could be seen as stable territory though.

koi1 · « **Reply #12 on:** February 27, 2007, 10:01:24 pm »

Thanks Philly,

That seems to be what I have been hearing so I guess it will be some months before I can take that pill off of my list. Here is to hoping.

Rob

Tucsonwoody · « **Reply #13 on:** February 27, 2007, 10:03:59 pm »

I was on Bactrim for awhile but doc thought it was depleting my neutrophils (part of white blood cells) so got switched to Dapsone. WBC count is now in a good range, but am staying on Dapsone.

Also taking Azithromycin to prevent MAC and will be on that until I reach 200 CD4 for 3 months...a long way to go.

koi1 · « **Reply #14 on:** February 27, 2007, 10:09:06 pm »

Hey Tucson,
I did not know there could be that advantage taking dapsone over bactrim. I am not currently not on any MAC prophylaxis, did you have it before?

rob

Coffeechick88 · « **Reply #15 on:** February 27, 2007, 11:19:04 pm »

I was on Bactrim and taken off after my CD4 counts remained consistenly higher--I can't 100% remember, but it was after I went to the 250-300 margin and held it there. It wasn't that long for me--I wasn't as low as some people on here and I was lucky that my CD4 counts jumped dramatically after treatment.

edfu · « **Reply #16 on:** February 27, 2007, 11:22:39 pm »

I made the decision. It wasn't until I was at 300 for two consecutive blood draws. I'm conservative that way. And I smoke.

JohnOso · « **Reply #17 on:** February 28, 2007, 06:33:42 am »

I'm on Bactrim DS one daily right now...my last CD4 count was 178.

I started Azithromycin 1200 mg once a week for MAC prophylaxis last year when i discovered my CD4 count was 13. I was able to stop this in October when my doctor was reasonably certain that i was gonna stay > 100.

He says the Bactrim can stop when I get above 200.

John

Tucsonwoody · « **Reply #18 on:** February 28, 2007, 04:46:06 pm »

Hello Koi -

Never had MAC - but doc didn't want me to get it either...seems to be pretty standard thing if a person's numbers put them at risk of OI's.

And from what my doctor said, Bactrim is the recommended treatment if possible for PCP and reducing risk of getting PCP, but for some people they can't take it (like my case, or allergies etc.) so Dapsone is one of the alternatives. She also had me stop taking Valcyte (to prevent CMV) because she wasn't sure if it was the Bactrim or Valcyte that was causing the problems with my white blood cell counts.

It only took about a week after stopping them that my neutrophile count started climbing so I guess it was one of those meds causing the problem. And my doctor still doesn't want me to restart the Valcyte or Bactrim yet.

Forums Index

Welcome

Author Topic: At what point did your doc take you off of prophylaxis treatment? (Read 5481 times)