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Ulcerative Colitis
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Posted 11/24/2009 2:39 PM (GMT 0)
I have a severe case of UC and I also have MS. I've been flaring ever since my diagnosis in May with the UC. The MS has been totally fine though. I started with Asacol but that gave me a pericarditis so I cannot take any of the 5-ASAs. I was started on 6MP and have been on that at 40MG of steroids for about 2 months, but things are not really getting any better.

I've been hospitalized 4 times.

I cannot take Remicade because it will exacerbate the MS...so since the 6MP is not working..what are my options. The GI does not necessarily want to put me on Tysabri because I wouldn't normally have to take a drug that intense for my MS..and the risk of PML is scary. He basically said I dont want to give you a drug that could kill you when surgery can cure you.

Does this pretty much mean surgery for me? Is it too early for surgery, I've only been dealing with this since May? Thoughts? Suggestions? KNow anyone who has had both MS and UC?

Thanks.
Posted 11/24/2009 3:03 PM (GMT 0)
I have UC and MS as well. My MS has not been active.

I was diagnosed with severe pancolitis in June 2008. I have basically been flaring (thankfully not severely) since January 2009. I have been on prednisone since then but haven't gone above 10 mg in months. I am having trouble getting off of it, though, but am not ready to try 6MP mainly because I am severely anemic and trying to get my iron levels back up.

As far as I know, 6MP can take about 4 months to kick in, but definitely talk to your doctor if you have doubts.

I hope you feel better soon. You are not alone, and this forum is the best.

Posted 11/24/2009 3:20 PM (GMT 0)
Welcome to the Uc forum :) I'm sorry that you are having such issues right now. Med options: what about Humira? Would you be able to use that? If not, then you may indeed have surgery in your future. Oh and you can always try to control your Uc thru diet, supplements and probiotics. Go thru the threads here on the Uc forum and I'm sure you can find a load of information on diets that have helped many here.
Posted 11/24/2009 4:06 PM (GMT 0)
Sorry to read that you have this double whammy to deal with. I have heard about an elderly woman (related to a cousin of mine) who developed MS in middle age & then Crohn's disease. She got relief from Crohn's via aloe vera juice, which also has been used by many on this forum-- with varying results. Additionally, I have a male cousin with UC (a pharmacist) who didn't get help from 5-ASA meds but found the aloe vera very helpful. It's a trial/error thing, generally the case with supplements. Best wishes for you to find the right help for your situation! / Old Hat (30 yrs with left-sided UC ... [etc.])

Posted 11/24/2009 4:16 PM (GMT 0)
Tysabri scares the heck out of me.... I would never, ever take it! Your GI sounds like a sensible doctor. Unfortunately, since Remicade is out of the question, I wonder if all the TNF blockers are out??? Ask your GI that, there are a few out now you could try. You could also up your prednisone to 60mgs/day- that's the dose I've always started on, when flaring, & it really kicked the UC into remission the first time I used it. The 2nd & 3rd times, it didn't do much. With all your other health issues though, surgery may be your best bet- sure it stinks, it's scary, etc. But people who have it seem to be very happy with the outcome. Read the ostomy forum here, & also check out jpouch.org. If you're a candidate for a jpouch, it may be your best bet. Good luck!!!!
Posted 11/24/2009 5:49 PM (GMT 0)
If you can find an MLN002 trial do it instead of Tysabri. People died from using Tysabri in the initial studies, whereas the newer version MLN002 doesn't affect brain at all and is specific for gut.
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