Need advice for Crohn's disease

I am a 51 year old male in generally good health except I was diagnosed with Crohn's disease about 15 years ago.  I had about 6 inches of my lower intestine removed and have done relatively well since that time taking a low dosage of Asacol.  The last 3 years had been some of the best.  about ten months ago, I began to run an occasional low grade fever for 3 or 4 days at a time about once a month.  It continued and began to occur more frequently with a somewhat higher fever.  After many, many blood tests, x-rays, bone scans, ct scans etc. with no luck,  a pet scan showed up a perianal fistula.  My GI doctor tripled my Asacol, put me on Flagyl ( antibiotic) and entocort (steroid).  about 3 days after I finished my flagyl ( 3 weeks) my fever came back one evening up to 103 degrees.  I was put on Cipro which I have been on about one week.  I have found what I believe is another fistula about 3 inches above the other fistula, close to the end of my tailbone.  I spoke with my GI doc tonight and she has given me the options of some medication that has been used in Europe to some degree of success, I believe she said it was a type of chemotherapy, but I may have misunderstood her.  She said it could cause significant problems with my immunity and bone marrow.  The other option was Remicade or Humira which have some possible side effects that make me very nervous.  Just curious if anyone else has had a similar situation and what kind of results you may have had.

Thanks So much for your reply. The possibility of pml really concerns me with the remicade. This is all nw to me.

Is the "chemotherapy" medication methotrexate, by any chance? If I've guessed right and you want to know more, just do a site search on HW or google it. Personally I would choose Remicade over methotrexate. I wouldn't take too much notice of the scary side effects; in practise Remicade is a safe and well tolerated drug. The associated cancer risks seem only to apply to children/teenagers or those taking Remicade in conjunction with an immunesuppressant such as 6MP/azathioprine, and even so are rare.

Also, welcome to HW :p

Azathioprine IS chemotherapy but it has been used for decades with great success in Crohn's patients. It is not necessarily riskier, in terms of side effects, then Remicade or Humira. 

Before taking azathioprine, you can have your blood tested to see whether you might be able to avoid the most dangerous side effects. The blood test is of TPMT - there are two types, a test to see if you have the necessary gene, and another test to see the level of enzyme in your body. Take test number two - because if you have the enzyme in your body, then of course you must have the necessary gene. The important thing to know is how high is this level? Not enough can mean you are not a candidate for azathioprine.

A better explanation of the test, which I believe every doc should do before administering azathioprine, is the following:

http://www.labtestsonline.org/understanding/analytes/tpmt/glance.html     

Post Edited (njmom) : 9/28/2010 8:09:02 PM (GMT-6)

I wanted to post to reply to your PML concern. To my knowledge PML (drug-induced) is really associated with Tysabri, not Remicade/Humira or Azathioprene. I wasn't able to tolerate AZA, but Remicade gave me no ill side effects and put me in remission for 2 years. It's also very good at closing fistulas. I believe AZA has a record of helping with them also.

good luck... Hope you feel better soon!

Used and using aza for last 12 years and it was wonderful! It worked well for me all that time and I have always had to get regular blood work and follow up apts with the GI to ensure my blood is ok. It has stopped being effective for me now but in my opinion, the benefits outweigh the risks of not taking it- or of going to further measures.

best of luck

B

I just found out tonight that the TPMT test I took last week revealed I was heterozygous, which if I understand right means I have one gene that accepts and one that rejects Azathiopine or basically I will be very sensitive to Aza.  So for now my GI is keeping me on a low dose of Aza and i pill of Entocort along with 2 Weeks of Biaxin for the fever and my heavy rate of Asacol. At this time, the fistulas seem to be getting smaller and less sensitive and will hopefully disappear. i will be going into the office tomorrow to get my blood work done. Thanks again for all of the information and support I have received on this forum. You have all been very kind and helpful.

Post Edited (old crohny) : 10/6/2010 9:42:32 PM (GMT-6)