I'm confused about my Meds

Hello everyone,

I haven't been on the forums in a while but I have some questions. First, a little backgroud on what has been going on with me. I'm currently tanking Pred 60mg, Humira (once a week), Asacol HD (6 pills a day), imodium (max i can a day) and just started on Tacrolimus (Prograf). I went and saw a specialist at the UCSD medical center a few weeks ago and was told that it looks like my body is no longer doing anything with the Pred and that I have built up anti-bodies to the humira (and also remicade) so the doc wanted to start me on the tacrolimus to see if that would help. I have been on the new med (an immunal suppressant) for a week now but I can't help but think that the Pred is hurting me. I was told by my GI doc that the Pred can raise your white blood cell count and those cells are what harms us but at the same time i'm taking the tacrolimus to lower the white cell count. So wouldn't you think that the Pred has been more or less counting all the other meds that I have taken to lower the white cell count and not really helping that much?

If i'm not looking at this correctly please tell me but it just seems that these drugs have been counteracting one another and that has given my body time to build up the anti-bodies and more or less been taking away my medication options.

Sorry if i'm confused or ranting or anything but according to both my GI doc and the specialist, I'm down to my last option as far as medication and can really only try non-medical treatments or surgery next.

Thanks in advance for any advice.

-Bryan

Did you look at our resources section on the top of the forum? there are some ideas for alternative therapies, which of course, don't help everyone but could be worth looking into. Some of these include Diet, Fecal Transplant, LDN, Worm Therapy...

The problem with prednisone is that regardless of whether you think it is doing more harm than good, you have to taper off and depending on how long you've been on it, it could take quite a while. I don't know if the prednisone would be considered counteractive because it raises the WBC. I was taking prednisone while I was flared up (inflammation also increases the WBC) and it definitely helped reduce my inflammation. Have you had your counts checked? Have the medications helped to reduce it? Was it high? Mine was never very high, even while on pred and while flared up. Now I take 6mp and it has dropped slightly. I have never heard of Tacrolimus. I hope it helps you. Have you had stool tests to check for bacteria? A bacteria on top of UC can make UC very hard to treat. Have you tried any antibiotics? Flagyl can sometimes help.

Here is the full list of what I have tried..

Anti-Inflam:
Sulfasalazine (8 tabs a day) - Stopped
Sulfasalazine (12 tabs a day) - Stopped
Asacol (8 tabs a day) - Stopped
Asacol (12 tabs a day) - Stopped
Asacol HD (6 tabs a day) - Current

Injections\Infusions:
Remicade ( every 8 weeks) - Stopped
Remicade ( every 6 weeks) - Stopped
Humira (every other week) - Stopped
Humira (weekly) - Currnet

Steriods:
Prednisone (50mg a day) - Current
-this has varied a lot over that last 4 years.

Immunal Supp:
6mp ( don't remember the dose) - Stopped
Tacrolimus (5mg 2x a day) -Currnet

Rectal Meds:
Suppository and Enema (don't remember the names)

Probiotics:
VSL3 - Stopped
Aline - Stopped

This is the list as far as I can remember. I was also steroid dependent and have been on 20-60mg a day for the last 3 years. I have only been off the prednisone for a total of 3 months in that time. I'll look at the resource section to see what else I can do. The one good thing is that my specialist is willing to support me with any alternative treatment that I want. He just asked that I let him know about it before I move forward so he can research it and help me if anything comes up. I know a lot of people say I should get the surgery but i'm really scared to get it. I have heard that I can end up having just as many stools a day and then have the risk of many other things and I also heard that there is the risk that it could make me steril and my wife and I really want to have one more child.

I would be careful having children, you could pass on the UC...

I would probably try LDN if I had a supportive doctor. I have seen a few people try it with good results and other people with no results but either way, it's worth a try if you're not ready to consider surgery.