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New diagnosis and not able to take Azothyiprine

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Crohn's Disease
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Posted 8/22/2011 11:57 PM (GMT 0)

It's been a while. I have a sorta diagnosis...IBD. The Rhumi says she cant figure it out and its not Rhumitoid arthritis, Gi doc wont say but did find erosion in a few places with the pill cam several months ago. SED rate was high and we know its not Lupus. I reapplied for SSA/disability and have a Psyc consult on the 7th. So tired of this and even tireder of not being well. I am on Asacol and just got off the Entocort. Lost 42 pounds. Still getting Migraines 2-4 times a week and the med I take for that has been DC. I am waiting on an appt with Nuerologist and have about 6-8 pills left of the Midrin. I did a short trial of Azo but it made me get a bad infection, since I have chronic sinus infections. Just felling pretty frustrated and sick of trying to get the right meds and diagnosis. Did the Colonoscopy and it was fine. GI doc sent me to the Rhumitologist, and she dont know. They all treat me like I am making this up. Oh well. Just thought I would vent a little and give an up date. I wont go to Mayo. A friend with similar issues went to AZ and insurance spent 750,000 and no answers after a week.

Posted 8/23/2011 2:09 AM (GMT 0)
I can understand your frustration to an extent. I have a similar sort of diagnosis ;) I was dx with IBD undetermined type and my blood marker test came back beg for both UC & Crohns. I at times have difficulty coping with the uncertainty of it. Im on Prednisone and it seems to be helping but Im certainly not where I'd like to be healthwise. So in that sense I can relate...are you able to get a new GI? Maybe get a second opinion? I had to learn to stick up for myself when I wasn't being taken seriously by my doctor. (I had a bad experience with a Urologist who told me my kidneys were fine, got a second opinion the next day and turned out I had obstruction in each Ureter that he had over looked.) Anyways, Im really sry that you are going through this and I hope someone is able to figure out a treatment plan that will work for you. Its no fun being miserable :(
Posted 8/23/2011 2:32 AM (GMT 0)
No other GIs. Went to both. No answers. Now neither of them can help me. And I don't like any of them. Have had lots of opinions..answer...."I don;t know". Have you been on Asacol..Works great. Takes time to work. I am on 9 pills a day. Still does not take all the symptoms away. I need to go back on the steroids, hate to gain back the 42 pounds I just lost. I felt great on Prednison. Doc wont put me back on it.
Posted 8/23/2011 11:53 AM (GMT 0)
Lesa, if there were ulcerations found in the small bowel via pill cam, the Asacol is not going to touch them. I'm glad it helped you feel better but it sounds like you need something to treat the small bowel, too; a systemic med like prednisone would certainly do that, but it is not healthy to take more than a few weeks or months. There are other systemic meds with which your Rheumy and your GI should be familiar - immune modulators like Imuran or biologic meds like Humira or Remicade.

I use Pentasa, which is active throughout the entire bowel; I switched from Asacol when that med did not give me complete relief for my symptoms. I've also done some diet modification and I take supplements (vit. D, flax oil, folic acid) to help too. Please talk to either or both of your DRs about these options.
Posted 8/23/2011 12:50 PM (GMT 0)
I tried the azothyiprine and cant take the meds that lower your immumity. How is Remicade, Humara, Imuran different?
Posted 8/23/2011 3:23 PM (GMT 0)
Remicade, Humira and others are made from mouse cells genetically modifed to target a specific immune process in your body. Many people with Crohn's and rheumatoid arthritis and other autoimmune diseases have great success with these meds. You should be able to learn a lot about these meds via web searches.
Posted 8/23/2011 3:35 PM (GMT 0)
I looked up the uses and side effects. I cant use either because I have on-going chromic infections and immune system problems. That is why I cant take Azothiaprine. Aren't they all similar? Not sure what to do.
Posted 8/23/2011 4:20 PM (GMT 0)
I have the diagnosis from my PCP of Inflammitory Bowel disease. If falls under the categories for disability. I am applying for SSA disability not SSI. As hubby makes too much money. I got approved for disability for one year and they gave me back pay for 2009. But I had to reapply for on going benefits for 2010 and forward. I will talk to my PCP and see what he recommends. Thanks.
Posted 8/23/2011 5:11 PM (GMT 0)
Yes it must be SSDI. I just went ahead and got an appt with a GI about 2 hours away for a second opinion, since there is no one else here. My Primary is a DO, but we are both frustrated. I do have an appt with a psych on the 7th per SSA. I sent them rercords and statements and this is the second time I have applied. What tips do you have for me? It would be great to have help. Thanks.
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