6mp is failing me

Oh, Sherry, I'm sorry to hear that! On the other hand, is it possible your worsening colon condition has contributed to some of your other recent issues? My musculoskeletal pain always gets worse when my colon decides to have a blip. Maybe getting the UC under better control will also help some of the other problems.

I think he wants to see if the steroid enemas are going to put me back in remission before he steps up the game plan. I'm open to trying Remicade because even though I would love to have my colon removed, I just can't take the down time right now. So if it comes to me trying Remi then at least it might give me some more time. I'm not quite sure what he has in mind because the appt I went to today was for my gma and he didn't have my chart in front of him. So we will discuss it in a few weeks I guess.

Judy, actually my back and neck pain started while I was in remission. I know that my hips and back get worse while flaring but when I was in remission the back pain intensified and I knew that something wasn't right. Which is why I'm still persuing the matter - just had another MRI yesterday and I meet with my neurologist on Thursday for the results.

Ah man! That stinks! You hang in there and keep us posted. Sending happy thoughts your way!

I am told Remicade is effective for a lot of people. I'm sending you well wishes!  I took a Prometheus test before starting 6-MP to see if I have a certain enzyme.  My doctor hasn't mentioned anything about any more Prometheus tests.  How often were you doing it and do you know what they test for?  The only stuff my doctor is testing me for is CBC (complete blood count) and CMP (comprehensive metabolic panel) every 2 or 3 weeks.

Piper_chris, after you've been on 6mp for a while and if you are still flaring, the doctor can do a metabolites test to see how your body is metabolizing the medication. If you are on the low end, your doctor can then up the dose to try to get you at the proper level. Of course taking the proper precautions such as doing other blood tests such as CBC and liver function after a dosage increase.

Thanks everyone for the kind words. I do believe that 6mp is helping me but now I know at least why I am still flaring. I'm just grateful that the 6mp is keeping the worse flares at bay for me. But I'm also a bit depressed knowing that it's not doing the correct job in which it was intended. :( So we shall see what happens after I get off the steroid E's.

Oh Sue I know that if I had my colon removed that it wouldn't be the end of the world :) I've been researching surgery options for the past year or two. But, truthfully, I am scared witless of it. Not the surgery itself but the aftermath. I'm scared on how it may change my life - maybe for the better but maybe for the worse too. If the time comes, I want to be at peace with my decision and I'm slowly getting there. I've also have been thinking of ways to have someone care for Gma if in the event I do have it done. Not only would having the surgery be a huge impact on me but everyone around me. And to have someone come in and help care for Gma until I recovered would be a huge undertaking for anyone. LOL She's a sweet lady but not quite an easy one. :) My hubby has told me that if I wanted to have surgery that he would take his vacation time to take care of the kids and Gma so that is an option too.

Hi Sherry,

I am sorry to hear that, it is very scary. My last two tests showed high enzymes for my liver and I have to do a third, so I don't really know what is going on too much either. I will opt for remicade before surgery, I need to know that I have tried everything.

That is great that your family is so supportive and that you are there for your Gma. Sounds like you really take care of everyone else and I am sure that they will totally be happy to be there for you if you go the surgery route and let them take care of you.

For your Gma also check into local agencies to see what things she is eligible for, for instance I used to work for a company that would go grocery shopping, clean, 'babysit' elderly w/dementia, take them to appointments and/or just be there with elderly for a few hours a day. I would go to their homes and these people did not have money, I think it was funded by the state of NH or medicaid or something.

Just a thought of something to look into. Unfortunately there are no handbooks on programs that are available out there and it is very difficult to find info sometimes, but there are things out there than can help.

I really hope that everything goes well for you and please keep us posted, as I am also interested b/c I think I am going down the same road (kind of).

Sherry, i'm so sorry about the 6mp situation. I think i am having the same situation with Imuran. They are going to have to do another Prometheus test for me. But the last time it was done, it was so close to theraputic range and I'm still flaring to often. If you are so inclined, keep us informed on your progress and what next step may be.

Good Luck to you!