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Low hematocrit and 6MP

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Posted 3/21/2011 10:41 PM (GMT 0)
I have been on 6MP for a little bit over a month now while I have been tapering off prednisone. I've been feeling pretty good lately and my weekly blood work has been good too, no liver toxicity, cell counts returning to normal ranges, inflammation markers back to normal again. The one exception has been my RBC count, which has been low, but my doctor had said that it may just take time for that to bounce back. However, I just got a call from the doctor and this week's results show that my RBC count has dropped again, though everything else is completely normal. He is concerned enough about this that he wants to lower my 6MP dose to 25 mg while repeating my CBC and assessing my TPMT levels, though he is not sure that this is being caused by the drug as he would expect a more global immunosuppression rather than a lowering of just my RBCs.

I'm curious to know if anyone else has dealt with a similar situation. I am feeling very discouraged and kind of scared right now because the last month has been really good and I feel like if I have to make a change in meds, the relative stability that I feel right now could all be taken away.
Posted 3/22/2011 12:11 AM (GMT 0)
I am sorry you're going through this Amanda. I have been in a similar situation for a few months. My bloodwork never looks so good, especially since being on 6mp. I had to add allopurinol to even get to a point where I am able to tolerate 6mp and get into a theraputic range. Since, I have been having bloodwork that is less than ideal and my doctor said I probably have to reduce the dose. I am happy to reduce the dose but I feel the same way you do, I have struggled long and hard to get to this point where I am finally feeling stable. I hate to change things and stress about having a flare up. I wish things weren't so complicated for us. I am discouraged too, I hope I can continue with 6mp and that I have results that are equally good on 25mg as I am having on 50mg. Maybe you could see about adding allopurinol, it can increase the beneficial effects of 6mp with a much lower dose of 6mp. Ask your GI. Maybe we will do wonderfully on the lower dose? that's my hope. Better to take less medication if it continues to keep us in remission.
Posted 3/22/2011 1:28 AM (GMT 0)
Thank you so much for your response, notsosicklygirl. I think the hardest thing about this is that I don't really feel bad--in fact, I expected that my RBC count was going to go up this week because I had been feeling more energy--so I don't really know what to trust, the way that I feel or my lab results. It's just hard to come to terms with the fact that I can feel pretty good and yet still be pretty sick.

How long have you been on the 6mp? Did you see the effect on your bloodwork right away or did it take a while before you started seeing signs of intolerance? I completely agree with you--if we can take the lower dose and still have a similar therapeutic effect, that would be great!
Posted 3/22/2011 1:50 AM (GMT 0)
I don't remember exactly when I started but it must be 8 months by now. I did have high liver toxicity and low theraputic effects from the start but my dr said some people still get enough benefit from 6mp and that my regular liver panels were showing nothing to worry about. It was just the 6mmp test that was showing toxicity. I guess it's a fairly new test and in the past they wouldn't have had any worry about increasing my dose of 6mp to get me to where I need to be but with the 6mmp test showing toxicity, she didn't want to raise the dose too much. I am allways very tired - I hate it. It's wonderful that you're feeling pretty good. Perhaps we will do just as good on 25mg. I know with allopurinol yu can take a very low dose of 6mp and get the same effects as a higher dose.
Are you still on prednisone?
Posted 3/22/2011 2:28 AM (GMT 0)
Yep, right now I'm at 30 mg prednisone down from 40 mg. After overthinking this a little bit more, I'm starting to wonder if the prednisone taper has more to do with the RBC situation than the 6mp. I've never gotten to the point where there was a consistent, absolute lack of blood in my stools and while I've noticed a bit more bleeding when lowering the dose, my doctor didn't seem too concerned. I don't feel like I have a very good sense of how much blood is too much, especially when it was much worse for me several months ago. Maybe I will have to push this discussion on my doctor tomorrow so that we are completely in understanding of how much bleeding is actually taking place.

I can honestly say, that I would never had predicted that I would spend so much of my limited brain power after work analyzing my bowel movements, but I am so thankful that there is a place to do it!

How much prednisone are you on now?
Posted 3/22/2011 2:52 AM (GMT 0)
I am on 1mg but I've been on the most ridiculously slow taper. If you're going down 10mg a week, that can be tough to do without having a relapse. It really depends on the person though. I've seen people do very well with quick tapers and other people have no luck at all. If you're having bleeding and difficulty on 30mg, I definitely recommend tapering slower. 5mg a week is better for many. I was so stressed about relapsing, I didn't go by a weekly schedule, I went by when I felt like my condition was stable. I didn't want to reduce the dose when I was struggling to stay out of a flare. I do think between decreases, it is normal to experience a slight increase in symptoms. I was having that a lot around the 15mg point and from there down to 6mg or so but lately I've been feeling more solid. I am still worried I will relapse, I relapsed once at 2.5mg so it could happen anytime. It's very stressful.

I never thought I would analyze my movements so much either. Lately I am dealing with hemorrhoids and I am always analyzing that too...
Posted 3/22/2011 3:15 AM (GMT 0)
I've been on a relatively slow taper, started down 5 mgs the first week and then the weeks after that I dropped by 2.5 mgs when I mentioned to my dr that there was some increase in the bleeding. The idea was that we'd be able to get me off prednisone by the three month mark for 6mp when we'd expect to reach the therapeutic dose, but I guess that strategy is in question now.
I can relate to the stress of the unknown. I'm finding it very hard to plan things even a month in advance because I'm always thinking about how my prednisone tapering or other medication issues could hit a bump. I'm trying very hard to clear my mind of this negativity, but it's always easier said than done.
Posted 3/22/2011 3:25 AM (GMT 0)
Have you been having the test that shows your 6mp theraputic level vs. liver toxicity level? That test, which isn't performed in every dr's office, is the one that I think helped me get on track with the 6mp. I have to go to the hospital to get this test done, Quest Diagnostics won't do it... I always had low benefits according to the test. I think it is called 6mmp or 6tg. Have you heard of this? Becuase of the results, I was able to try allopurinol in combo with 6mp and I've been feeling a lot better since. I am still exhausted but I haven't had much UC symptoms. I hope things stay stable for a while. It's been a year that I've been trying to get this under control.
Posted 3/22/2011 3:43 AM (GMT 0)
Yes, in fact, when I go to the doctor's office tomorrow, I'm going to have blood drawn for that test. It is confusing how they do it, I think that I have to go to the building across the street from my doctors because only that lab collects samples for that particular test.

I really admire your strength for going through this for a year. It's only been a few months for me and I feel like it's been an eternity.
Posted 3/22/2011 4:02 AM (GMT 0)
goodluck tomorrow! Hopefully you will get good results that show you're in range and your rbc is back to normal. I think my last results were off because I was getting over a flu. I go in a few weeks to get my levels checked as well. I hope eveything looks ok for both of us.

It's been a tough year. things have been controlled for quite a while, but 2010 was pretty much a year of unstable health for me. On pred, off pred, on again, stuck at 15mg, colonoscopy, sigmoidoscopy, 6mp, bloodtests every other week, added allopurinol... finally I am hopeful that there is a light at the end of the tunnel.
Please let me know how it goes tomorrow smile I am 32 too.
Posted 3/22/2011 1:59 PM (GMT 0)
hey, check out my hematology appt. post- I have been going thru the same thing, & was freaking out about possibly quitting one of my meds- I take Imuran & humira, both of which suppress bone marrow production. My GI sent me to a hematologist for a 2nd opinion, & lo & behold she said "We can't stop your meds since they are helping."! Yes! I've just started iron tablets, have to return in 3 months for more labs & follow-up. But if you feel your meds are helping your UC, ask to see a hematologist before doing anything else. From a hematology/oncology point of view, the risk of colon cancer due to uncontrolled inflammation is worse than low iron counts, which can be corrected in most cases. Good luck!
Posted 3/22/2011 10:00 PM (GMT 0)
Hi Eva Lou, thanks for directing me to your post! I went to the see my GI doctor today and got my blood drawn for a bunch of anemia-related tests as well as for the Prometheus test that will check my TMPT level so that we can begin to address the question of whether it's the 6MP that is causing the anemia. Once the labs come in in the next day or two, my GI doctor is going to get me an appointment right away with the hematologist that they routinely refer patients to, so I will be armed with my lab results and ready to hear how we can start attacking the anemia head-on! I'm feeling a little bit more positive today that this is just a bump in the road and that I'll be back on course soon, but admittedly, all of the uncertainty that comes along with this disease is really taking a toll on this control freak smile Thank god for anti-anxiety medication!
Posted 3/22/2011 10:27 PM (GMT 0)
right, I was freaked out myself- mainly over the possibility of quitting one of my meds, which even though some consider toxic, I consider life-saving! Seeing the hematologist really put my mind at ease. And I'm hoping the iron supplementation makes a difference in my energy levels. Apparently the bloodwork the hemetologists do is much more thorough than the labs a GI does too, they must know more of what to look for, etc. Good luck, & definitely keep us posted! And keep on those anti-anxiety meds!
Posted 3/26/2011 3:08 PM (GMT 0)
Update: My latest labs showed that while my hematocrit is still low, I'm holding steady at around where I've been since starting 6mp. The reading that showed that I had dropped again appears to have been a fluke (which has taught me the valuable lesson of not freaking out over one abnormal result!) The other tests that were run showed that showed that I am iron deficient, so I began taking iron supplements yesterday. Eva, I saw in notsosickygirl's more recent post that you've seen all of the crazy guidelines that they give on how you should take the supplements. I'm starting off taking it with a little food in my stomach, but I'm hoping that stomach irritation will be low or non-existent so that I can take it first thing with the rest of my morning meds.

The best thing in all of this is that it's been ruled out that the 6mp is causing me toxicity at this point, so I'm back on track with my original treatment plan. I'm only going into week 6 of 6mp, so I don't think I'm seeing much of an effect yet, but I'm grateful that we can treat the anemia while giving the 6mp more time to reach a therapeutic level.
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