Crohn's Journey with Remicade being part of the current.

I have had diagnosed Crohn's for 9 years. It all started after I had my first child. The diarrhea started and never stopped did all of the super fun GI tests and my first GI told me it was Crohn's with very little information about the actual disease so I didn't really know what I was up against since I had not heard of the disease prior to diagnosis. He put me on Pentasa, which did nothing for me, then put me on Prednisone and that made my joints and head explode in pain. Then I started getting all of the medical bills and couldn't afford to pay them all. The clinic told me that I couldn't come in for any appointments unless I paid a large sum of money that I just didn't have at the time. By the time I was able to pay and go back, the GI told me that I obviously didn't value my health if money is why I didn't come in. GRRRRR!!!! I was IRATE! I asked to be switched to another doctor at the same clinic and was told they wouldn't do that but I could see his PA. Oh great! I saw her a few times but the doctor would always end up coming in to talk to me anyway. I finally gave up with him and decided I would just deal on my own.

I got sicker and sicker, had to quit my job because I just couldn't do it anymore. About a year and a half ago, I started to see a new GI (who by the way is as big of a jerk as the first) and he decided Remicade was the best route to go. I started taking Pentasa and Imuran and about 4 weeks later I was at my first infusion. I handled it fine and again 2 weeks later and then 6 weeks and now every 8. The first 6 months I was doing great on it. I couldn't remember a time in my life where I felt as good as I did at that point. Now in the last 6 months I have been slowly going backwards and getting a lot of side effects from the meds (there are so many that I don't even know which one is causing them). I don't know what to do next. My doc has been rude when I have called and told me that with the side effects I need to check with my family practice doc. REALLY???? So I feel lost. Any advice???? I want to stop remicade and Imuran but I don't know if I should and I just don't feel comfortable talking to my GI about it. I also suffer from anxiety, depression.

Thanks,
Katie:frown::frown:

Hi Katie and welcome to the forum, I am sorry to hear you are having such bad luck with the docs

It really is not acceptable for your GI to say it is up to your GP to handle your crohn's related problems, a complaint against them and perhaps a search for another new one may be in order. Out of interest what side effects are you getting? I am wondering why the Remi was started without first seeing if the Imuran could do the job first on its own - it can take up to 3 months to fully kick in so immediate relief may not have been noticed with this. Or the other way round with just being on the Remi and not the Imuran- what dosage are you on for this by the way? I have heard of a test that can be done to see whether the Imuran would be something your body would tolerate - I don't suppose anything like this was checked either? Also are you still on the Pred or has this now stopped?

I will leave the questions as that for now hun.

AB
xx

Hi AB,
Thanks for the response. I am currently having problems with night sweats, weakness, neck and back pain, migraines up to 3 times a week, abdominal cramping is back and I have diarrhea at least 3 days out of the week.

I really am unsure of the Remicade dosage, but Imuran is a 250mg/day. The GI started me on the Imuran and then we started the Remicade about 4 weeks later. No tests for the Imuran except for levels of it in my system which have always been low, he started me on 200 mg and then upped it to 250mg and it still has not increased the levels in my system. No I am not on Prednisone anymore. I think that answers your questions. I am making a phone call to my GI today to discuss the options of stopping Remi. It seems to have lost its effectiveness. I talked to my Chiropractor yesterday and asked him and he said that sometimes these medications work really well in the beginning and then your body starts to be too tolerant of it or grow an immunity to it? I don't know. I trust him more than my GI because I know he cares, the GI's we have here are not so great.

Katie

That is a fairly high dosage for the Aza, ask the doc about if there is a test they can do to check your body's tolderance of it. I hope they will be able to help, please keep us updated on how you get on.

Hi Katie and welcome to the community. I'm glad you joined

If you're not comfortable talking to your doctor, get another one. As Crohn's is, at present, a lifelong disease, finding a doctor you click with is of utmost importance. Sometimes it takes a little while before you find that special doctor, but there are a ton of them out there and it's well worth the effort.

Regarding the anxiety and depression, have you ever had your vitamin and mineral levels tested? For example, vitamin D, vitamin B12, and magnesium are common deficiencies people with Crohn's have that can cause a wide array of symptoms such as anxiety and depression.

I wish you well.