6-mp and bone marrow suppression

Hello fellow UC'ers. New guy here. Let me start by saying, I wish I would've joined this forum years ago. Reading through these posts i've found it very inspirational, very informative, and very comforting to know i'm not alone in this fight. Thanks to all who participate here :)

Due to my recent flare, i've discovered an issue that really made me shake my head. Let me explain:

Since being diagnosed years ago i've been in and out of remission. I've always taken a pretty simple regimen. Prednisone and some rectal meds. A few years ago my doctor put me on 6-mp. Over that time period I was hospitalized 3 times due to anemia. This was new to me. I wouldn't last a month into my flare and I felt like death. I assumed this was just the course of the disease, and something I would just have to deal with in the future.

With my latest flare, I've had more blood loss than I ever have. I figured I was in for another hospital stay. When I had my blood checked, it came back fairly normal. I was baffled. When I discussed my issue with my new GI, she said it was due to the 6-mp suppressing my bone marrow and that they should have caught it with my blood tests. This flare I wasn't on 6-mp, because it had some other side effects I wasn't real keen on. Not one of my doctors back then ever mentioned this to me, or even sudgested that was the cause of my anemia.

I kind of feel stupid that I didn't figure this out until now. And it really makes me angry that because of doctor's stupidity, I have a heap of med. bills and most likely endured prolonged flares due to this.

Anyway...that's my story. Hope this hasn't happened to many other people.

Sorry that happened to you. I think a lot of times doctors prescribe meds very casually without thinking much about the consequences. Patients come to them looking for a ray of hope and the doctors don't really know what to do. The doctors themselves are often so obsessed with putting their patients into remission that they don't seem to be much aware of what the meds are doing to their patients, I.E. bone marrow problems, cancer, or other nasty side effects. The doctors get immune from being doctors as they get in the routine of punching in at 8:00, prescribing Prednisone, Imuran, 6MP, Remicade, or Humira and then punch out at 5:00 and go home (OK, they're probably not punching timeclocks). In the beginning most patients just go along with whatever the doctor says. After patients gain more and more knowledge they begin to see that the doctors don't really understand what their own patients are going through not only with the disease but with the treatments as well.

I was taking 6-mp over a three year period. Lower doses when in remission. I should mention that this side effect is fairly rare. Has a lot to due with how each of us matabolize the drug. I may have been ok on a lower dose the whole time.

If the whole thing would've been diagnosed the first time, I would've definately tried other options down the road. I think like many of us...when in the mist of a bad flare, I would try just about anything to make it go away.

I think 6MP caused severe anaemia for me. In 2010, I was given iron transfusions after my haemoglobin dropped as low as 7. I also took 6MP that year for about six months, but I can't say for definite that the anaemia coincided with the taking of it. I think so, though, especially given my experiences with subsequent meds such as methotrexate and Humira, which also appeared to lead to my becoming severely anaemic.

I agree with garylouiseville's post. Doctors don't seem to have much awareness of side-effects at all. In theory, if you begin 6MP or Imuran, your blood is tested every 1-2 weeks for three months, but the docs are more concerned about the white blood cell count than the red blood cell count - so it would be possible for anaemia to be missed if nobody is specifically looking out for it. Basically, docs will look out for what is dangerous (WBC approaching zero, for example), but not for what might be detrimental to your quality of life but not dangerous (anaemia).

It sucks, really. Don't feel stupid about it, it took me 10 years to learn I had to be my own advocate. I assumed naively doctors would tell me everything that was relevant; they don't.

I just wonder how many people out there this happens to. I went through ten years of flares without a trace of anemia. Then all of a sudden every flare I would get anemic a couple of weeks into my flare. I told the doctor I didn't even have any blood in my stools.

I know with UC, anemia is something we all keep a close eye on. And when it happens, the natural thing to suspect is the UC itself. My current flare has been going on for about two months, and my blood counts have been fine. Even with excessive blood in my stools. No more 6-mp for me.

InSoFla..I'm currently taking 50mg prednisone and 1000mg sulfasalazine, only because i'm waiting for my health coverage to kick in. I usually do really well on hydro. enemas, but at $400 I think i'll

UC42,

Yeah... insurance, I understand all too well about that.

In the beginning when I was using Canasa, a monthly supply would cost me $680. Ouch!

Anyway, I think it's a good thing for you to be looking at adding probiotics and looking into LDN.