Colitis, or not, and HIV

[cesar_camargo]

Hi guys!

Writing here as I need some help/orientation. I'll describe everything I went trough so far... and I hope someone can give me a clue as what to do (or not to).

1:
I had some colon/rectum inflammation. Being curious of what was goin' on I stuck my finger there and things were really bad.
This episode resulted in fever and 5/6 not going to the bathroom. 
My doctor prescribed some antibiotics and I was healed until...

2:
It happened again. This turn, as I read before on the antibiotics I was prescribed that it helped 'selective restoration of intestinal flora' I filled myself up with probiotics. It helped a lot. But inflammation persisted.
Doctor sent me to a colonoscopy, that turned out pointing ulcerative colitis and sent me to the gastroenterologist.

3:
Gastro#1:
This is where things started to get ugly. I had already pain in my whole body, inflammations everywhere, etc.
So I went to the gastroenterologist, resumed to him everything that had happened, showed him the exams, and he said, resuming that:
"You do not have UC symptoms, but you have HIV, it can be anything, so I'll follow the protocol which is prescribe you mesalazine".
He basicly put me into freak-out state where I though I had something it would never be properly threaten due my hiv status.

4: - meantime
I didn't start taking mesalazine, something told me I should not under any situation take it (intuition? paranoia due the gastro comment?).
I just filled me up with probiotics, I went from buying industrialized yogurts and such to making my own. Things were slowly getting better, but very very slowly.

5:
Gastro#2:
I consulted with another gastroenterologist, who this turn said I had UC for sure, and it was commom for HIV with low CD4 count (mine was around 420). Quite franquily this made no-sense to me.
He prescribed mezalasine and asked some exams. I didn't take it again.
When I came back with the exams he again confirmed the UC, and prescribed mezalasine again (so I was collecting prescriptions ).

6:
I decided to go to a rheumatologyst, due my body pains. Was still not taking mesalazine. After loads of exams, which took more than 1 month to complete, I was still getting better and better.
In the end the rheumatologyst prescribed also sulfasalazine, diagnosing me with spondyloarthritis.

I enquired her about the mezalasine and, being oriented to take it (and considering this doctor showed a lot of effort to get to a diagnostic) I put my thrust in her.

I decided to start first the mezalasine, then later I would start the sulfasalazine. This way if I had any side effects I would know from which medication it was.

7:
After 5 days in mesalazine, all the body pain that was almost gone... WAS BACK. and the inflammation  in my rectum become lots worse, to the point I couldn't 'go to the bathroom' again.
The gastro#2 could not see me on emergency... so this took me to:

8:
Gastroenterologist #3:
I felt like crying in this appointment, literally. I resumed everything and he said I did not had UC, that UC + hiv is very rare, because your immune system needs to be very active for UC to happen.
Then he did some examination, took a piece of me for biopsy.

Couple weeks later I was back with the new biopsy, pointing UC again. He wasn't satisfied with that, so he requested a 'immunohistochemistry' exam from that biopsy.

It returned that my infection was spirochetosis.

He prescribed antiobitocs, diferent ones from the ones I did half year earlier, and put me on lactobacillus pills.

After 10 days cycle I didn't notice much improvements, went back, he asked me to wait some more days.

10 days later I was still getting better, but slowly as always, but I could still feel some rounded-points in my rectum.

This is the point I went berserk on alternative treatments. So I decided to try a kefir enema. 2 days later those rounded-points almost disappeared, so I tried another enema, 2 days later they were gone.

Since then I've been taking care of what I eat, loads of probiotics, lactobacillus pills, etc.

Thing is, I'm still not healed. There is still something wrong in my guts, it doesn't feel inflamed anymore but anything 'forceful' there causes bleeding, as if the skin inside was ... thin?

I tried getting back to the doctor but to him I'm alright and healed.

Now I'm really unsure about what to do, wait more? I feel like my recovery is stuck for 2 months.

Try finding another gastroenterologyst?

Try some kefir enemas again?

Another round of antibiotics?

A strong round of l-glutamine doses to try speed up gut recovery?

Anyone around has ever been trough an as confusing and crazy situation as this? :|

[Jim Allen]

Anyone around has ever been trough an as confusing and crazy situation as this? :|

Yes.

Best thing you can do is go back to your Doctor. The last trip seemed to be working and you were slowly getting better, healing takes time, go back to the doc.

What HIV medication are you taking BTW?

Jim

[cesar_camargo]

I'm on tenofovir + lamivudine + efavirenz 600mg.

Going back to the doctor is what I would think best too, if it wasn't for the fact that my infectologist is totally at loss about what happened and the gastroenterologist seems more then satisfied with current situation.

To add on, I became afraid/untrustful of doctors. Everything described happened actually in a 1 year period. While I was goin from gastro to gastro (and they where clearly not doing any effort to do a diagnose anything properly) I came to a point where even walking became a problem. 

From what I read around gut healing can take time, and a lot of time, and it seems I'm healing. But i'm really if I'm really healing and literally living every day afraid of what might happen next :|

[CaveyUK]

Really dumb question so I apologise in advance but....

Have you recently had a full STI screen?

A number of very treatable (ie. single shot and it's done) STI's can manifest with rectal inflammation and GI disturbance

[cesar_camargo]

Screened for literally everything that was possible ;^^

The situation is ongoing for more than a 1 year already, i probably did overall more than a 100 tests.

No health professional seemed really sure about what's up (except for gastro2 that swered for UC even thou it makes no sense).

Overall the only hypothesis that seems to make some sense is mine + gastro 3, which boils down to I never had a good gut flora situation, TDF kicked in a bad environment and helped destroy it, making me prone to all sort GI infections.

So far this is holding up, after a round of antibiotics to stop the spirochetes and starting heavy probiotics supplements I'm almost healed. But as no doctor had a definitive diagnose... I've been living pretty much scared of what may happen next since my GI even thou better is still not healed :X
 

 

[cesar_camargo]

I"m back! 

Apparently I was smart enough to forget a very important detail in post OP:

GI tract situation got bad aparrently 7 months after switching from efavirenz+lamivudine+zidovudine to efavirenz+lamivudine+tenofovir.

In the middle of that situation, when i got the worst possible, I argued with my doctor, and went back to efavirenz+lamivudine+zidovudine. Had improvements, then later on (around the time i started this post), he managed to convince me tenofovir had no relation had at all with the situation, and I got back to tenofovir.

Then a while ago, when I achieved 4 months in tenofovir again... the symptons started to slowly crawl back, until these last days where I was bleeding *very* easily from my colon, had fever and body pain again.

So in the end it seems my coincidental case of 'ulcerative colitis' was more like 'tenofovir mimicking ulcerative colitis', when I returned to the doctor with same symptoms again this time he was at least sure.

I've switched back from tenofovir to zidovudine, and my symptoms are already improoving 

My doctor thou gave me two options, either go back to the feared zidovudine, or try abacavir. But as before i end up with an opotunistic infefction that was really hard to get diagnosed (the spirochetosys)... I figured I was better running from tenofovir asap, which had to be to zidovudine unfortunately, since when the topic is abacavir... I was clueless bout it and would still need to take the hla b5701 exam before switching.

I wanted to summon up my current situation, because I found out online (here and in other forums) people who were diagnosed with UC too after starting hiv medication containing tenofovir (and in my case, this was the key for me to start suspecting tenofovir while there is no such medical data available). I really hope as those posts before helped, that this may help someone in future.

And now, happy with azt studing abacavir (I guess i'll pop up with a topic on abacavir in couple weeks  )

[Jim Allen]

Look some opportunistic infections can happen at any stage with or without ART, its just less likely when on treatment and higer CD4's and tenofovir does not mimic illness or cause the Intestinal spirochetosis.

Anyhow I wish you all the best with the treatment and the switch you making in meds.

Jim

[CaveyUK]

Well untreated HIV can do significant damage to gut flora with some people, which could potentially make you more sensitive to certain medications further down the line. I doubt very much that tenofovir would have done any destruction in itself. If you really have isolated tenofovir as a problem, then I personally would prefer to switch abacavir rather than back onto AZT (assuming that is your only choice in terms of med switches).

Whatever you do, I hope you get some relief from this issue as it sounds particularly unpleasant. Keep us posted.

[cesar_camargo]

Well before this I was healthy with controlled viral load and cd4 about 590 for over 5 years on zidovudine instead.

But what you've said, hiv in general doing damage, was one of the main reasons for a second attempt of tenofovir (supported by loads of probiotics/prebiotics), and the fact I found no medical/scientific proof to the tenofovir problem. The closer to a justification I found were some scattered similar cases of colitis after switch to tenofovir, and the fact tenofovir is absorbed in the colon. But these weren't enough to convince even me!

I've switched back to zidovudine, emergency, Wednesday, gladly the worst symptoms are already getting better . But to complete recover I guess i'll need a couple of months ~~~~

 

[cesar_camargo]

There is of course the chances that I actually have a case of UC, which gets triggered by tenofovir (another thing my doctor considered as a possibility). The confirmation that its either something cause by tenofovir, or just worsened by it, will come in a colonoscopy in 6 months ~~.

Anyway, updating due happiness: 4 days out of tenofovir and cramps stopped, fever is also getting lower-high points

And a question for you Jim, I've seem you really know stuff from all your posts around, have any good/bad sayings about abacavir? (here in brazil it's mainly overlooked and i'm having trouble figuring out if is it due costs or something else :|)

Look some opportunistic infections can happen at any stage with or without ART, its just less likely when on treatment and higer CD4's and tenofovir does not mimic illness or cause the Intestinal spirochetosis.

Anyhow I wish you all the best with the treatment and the switch you making in meds.

Jim

[CaveyUK]

Abacavir is a fairly common drug in use these days, and is part of the single pill Triumeq which many people take.

Side effects are not common with it, aside from hypersensitivity reaction - which is why a genetic test (HLA B*5701) is carried out prior to prescribing. There are some reports that it may increase the risk of heart problems for those predisposed to them, but thats about it.

Generic abacavir is not an expensive HIV drug - at least in the UK, but can't speak for Brazil. Nor can I speak for the Brazilian prescription guidelines for HIV doctors. If it's not listed as a preferred option for whatever reason, that may be why it is 'overlooked' rather than it being for any major scientific reason.

[Jim Allen]

What CaveyUK said.

Abacavir is a fairly common drug in use these days, and is part of the single pill Triumeq which many people take

As for the Ulcerative Colitis, look continue to work with the doctor to confirm the concern and treat as much as is possible any possible causes. Now as said the meds are not going to directly cause it, in the past diet and stress were suspected as a few defunct studies had tried to link this, but more modern thinking is this may aggravate the condition but it does not cause ulcerative colitis.  Its more than likely an immune system reaction / fault that is dealing with other infections, as your one is healing, recovering and damaged it would not surprise me one bit.

However we could speculate on the true cause all day and its not something I would encourage here. You need to continue to work with a doctor on this.

Jim


http://www.mayoclinic.org/diseases-conditions/ulcerative-colitis/basics/causes/con-20043763

http://www.nhs.uk/Conditions/Ulcerative-colitis/Pages/Causes.aspx

[cesar_camargo]

Your right on prescription guidelines, here to replace tenofovir first's replacement is AZT, then Abacavir. Meds here are mainly only provided from governament, no sold, and they own a few factories to produce lamivudine+azt pills. This would explain the odd preference for AZT over Abacavir.

I was just finding odd that I find no people taking abacavir in brazil foruns (loads of azt thou) while it seems to have far less side-effects. I was thinking my reasearch was missing something but it seems not. Thanks!

Abacavir is a fairly common drug in use these days, and is part of the single pill Triumeq which many people take.

Side effects are not common with it, aside from hypersensitivity reaction - which is why a genetic test (HLA B*5701) is carried out prior to prescribing. There are some reports that it may increase the risk of heart problems for those predisposed to them, but thats about it.

Generic abacavir is not an expensive HIV drug - at least in the UK, but can't speak for Brazil. Nor can I speak for the Brazilian prescription guidelines for HIV doctors. If it's not listed as a preferred option for whatever reason, that may be why it is 'overlooked' rather than it being for any major scientific reason.