Not getting surgery, what worked for you? 10 years on imuran...

UC made my life miserable until I was put on 150mg daily of imuran, then presto, symptom free! 2 years ago I moved and had to see a new gastro. 1 year in he says one of my blood levels is too high, and we need reduce it to 100mg while adding Enteregam 1-2 times a day. This seemed suspect to me but being that others were helped by Enteregam I gave it a go. That year has been unsuccessful, and my recent colonoscopy shows moderate-severe colitis. He has already told me he will remove my colon if I could not stay in remission. It's only been 1 year, and I will be lobbying to go back to 150mg of imuran on my next visit.

What are other things I should consider trying before surgery? It seems imuran vs. 6ap etc would yield the same results, but anyone have better success w/ one than the other. In my experience I have had the same response to sulfasalazine, colozal, apriso (on now). I cannot, or at least should not, take remicade b/c I have multiple-sclerosis. Wondering if there are other options I should consider. I eat a relatively healthy diet: gluten free, organic, fruits/veg, etc. I'm open to seeing an alternative health doctor if others have benefited.

I take a phillups colon health probiotic, 100mg imuran, and 4 pills of apriso daily.

Post Edited (digdugs) : 3/1/2016 12:40:18 PM (GMT-7)

Thank you for the prompt reply. Yes, it is unprofessional to threaten getting my colon taken out. He hasn't threatened it, but constantly holds it over my head, even since our very first meeting, and most since. Seeing a hematologist makes perfect sense, and I will pursue that. Entyvio is on my "to research" list. I will have to add allopurinol to that list as well. Thank you, and I still welcome other comments.

Anyone get helped a different way?

What worked for me was:

100 mil of 6MP to start, 4 lialda, Uceris. Now, I take 50 MIL of 6MP, one lialda. I've been in remission for almost a year now.

ks1905 said...

You could probably use Tysabri which could help both your UC and MS. I know that it's a whole other level of meds but it's an option for you.

I'm not sure what is and isn't an option for MS patients. Entyvio and Stelara are a different class of biologicals, they are in the same family as Tysabri.

Can you take Methotrexate?

Interestingly, I'm not supposed to take Tysabri at the same time as taking Imuran. I was wondering if that would still be the case w/ Entyvio. So people use just Tysabri to keep their colitis in remission? Don't know about Methotrexate.

Michelejc said...
What worked for me was:

100 mil of 6MP to start, 4 lialda, Uceris. Now, I take 50 MIL of 6MP, one lialda. I've been in remission for almost a year now.

Thank you. How long were you having trouble/flares and what were you trying before? I'm feeling I should take note that you have proctitis/diverticulosis. I don't know how differently they are treated.

ByeByeUC said...
perhaps look into cyclosporine? That was my last resort before I had my j pouch surgery. It helped me but only temporarily.

ok, added to research list :)

digdugs said...

ks1905 said...

You could probably use Tysabri which could help both your UC and MS. I know that it's a whole other level of meds but it's an option for you.

I'm not sure what is and isn't an option for MS patients. Entyvio and Stelara are a different class of biologicals, they are in the same family as Tysabri.

Can you take Methotrexate?

Interestingly, I'm not supposed to take Tysabri at the same time as taking Imuran. I was wondering if that would still be the case w/ Entyvio. So people use just Tysabri to keep their colitis in remission? Don't know about Methotrexate.

Tysabri was offered to me as a last resort if I wanted to keep my colon, I didn't think twice, I declined Tysabri and chose surgery. I am happy with my jpouch.

Admittedly, I was done with my colon and wanted to move on.

digdugs: I started out with ulcerated proctitis and mild colitis. I had 3 major flares that lasted more than 6 months, along with a few minor ones in between.

This last flare was really bad for me. I had a colonoscopy done and that determined that I had proctitis/diverticulosis. My doctor started me out on Uceris just until the 6MP kicked in. I have been in remission for about a year now.

Let me just say that from my experiences GI visits can be overwhelming and sometimes we can miss certain emphasises and words when we are talking to the doctor or the doctor did not do a very good job at explaining it. Anyways, if you can't stay in remission then your colon will most-likely need to be removed due to the severity of the disease worsening, toxic megacolon, or increased chance of colon cancer due to the constant inflammation but either way that would be years down the road. So your GI is not wrong but maybe it was not explained properly to you that you need to find a medication that you can take that treats your UC fully.

I know that your case is complicated by the MS, you may be better off finding both a GI and Neurologist at a University Hospital, they could work in conjunction on your case and they usually have more resources at their disposal.

I just wanted to add that I always bring a list of questions with me to my appointments and I try to write down all the answers so that I can review them when I get home.

Thought I'd post an update after seeing my gastro. I told him I didn't want my colon removed. He agreed w/o much fuss to put me back to 150mg of Imuran instead of 100mg where it has been for the last year (which left me w/ plenty of symptoms that he hoped Enteragam would solve). He said the blood level that had spiked upwards was 6TG, and we would monitor my blood to see what happens. I said that sounds good to me. Then he says "come back in 6 months and we'll do some bloodwork".

That's the other odd thing about this dr is that he only does bloodwork 2 or 3 times a year, but then freaks out about blood levels. If anyone has experience w/ raised 6TG levels, I'd like to hear it. about to do a search on it. Thanks again for the info as I'm better prepared.

iPoop said...
If your 6-TG levels are out of range, and you're increasing your dose of Imuran then it's essential to have more regular monitoring (like biweekly or monthly blood monitoring). What were your 6-TG levels measured and what are the reference ranges within your test?

6-TG levels between 230 and 400 may correlate with response and remission of inflammatory bowel disease. Bone marrow suppression may correlate with elevated levels of 6-TG greater than 400. Suppression means that a very low level of white blood cells, red blood cells, platelets and others are created.

If you have suppression you'll have to reduce your dose... 6 month monitoring would be nuts...

The 6-TG levels were high on one test last year. I had been on 150mg of imuran for 9 years w/o showing any raised blood level concerns. Although, I do not know if my previous doctor was ordering prometheus blood work. Since I moved to another state and new gastro, he was ordering bloodwork regularly, every few months. When he saw a spike in 6-TG he immediately lowered my imuran to 100mg and started me taking Enteragram. That was unsuccessful, and I was dealing w/ blood and urgency like I had before being dropped down to 100mg. I've had uc for 20 years and the gastro was saying if we couldn't keep me in remission we would need to remove colon. I came here to ask what my options were.

Gastro agrees to put me back on 150mg of imuran after me explaining that I had been on it for 9 years successfully and wondered what would cause such a spike. Also explaining that imuran is used as a medication for multiple-sclerosis and I had felt a return of symptoms w/ that too which may or may not coincide w/ my reduced 150 imuran.

Still, 6 months seems far apart for blood work tests considering. Does 6TG only show on prometheus or is it on 'regular' bloodwork too? If so, does it say '6-TG' on the sheet or some other name for it? thanks again