Crohn's inflammatory arthropathy

  One year ago I developed an inflammatory arthritic condition in which I still have had very little relief. I took some ibuprofen and experienced the best relief in the past year, without any stomach discomfort.  Couldn't believe it.  I was at my GI guy's yesterday and he said an occasional ibuprofen would be ok if you did have any GI symptoms.

I just have to do something. I got off the percocets because they were starting to effect my breathing.  I went down to 7.5 vicoden which was ok and lasted me about 6 to 8 hrs. Now my GP guy took me down to 5mg vicoden and it's not cutting the tip off the pain.

The Rheumatologist cut the prednisone down to 2.5mg and it is barely working for the swelling.  For the last 6 mo. since he cut it down I wake up at 4am with swollen, painful hands, knees, hips, back, shoulders and feet.

The last flare I had was in Sept.  The day I left on vacation and it lasted for two weeks of the vacation.  Including getting ulcers in the throat and down the esophagus. Diarrhea 15-17 time/day. Just couldn't even slow it down.  Great vacation even though, caught a lot of Big Fish!

Thanks for listening.

Thanks for your response. In 2004 I had a new GP and she let me bleed all summer long. She told me she would get me into a GI guy and I said I was leaving her office for the E.R. My Hemaglobin was 7.3, I felt I was going to die. They admitted me through the E.R., gave me 2 units of packed cells and a bag of iron. I felt a lot better. Hemaglobin was up to 10. By the next morning I was back to 9. After 2 colonoscopies two days in a row, I had a CT scan and a surgeon was at the foot of the bed telling me I needed a Hemicolectomy, which was performed the next morning. They removed 14" of colon and ileum, with a pathologic finding of Crohn's. After I was out of the hospital I went back to work 3 months later for 2 days and had severe upper abdominal pain. I was taken back to the E.R. by the life squad and had a hot Gall Bladder and need immediate surgery. It turned out Gangrene of the GB due to the Crohn's. I the was started on Remecade. Had 3 IV's and had a severe reaction and had to go on high dose steroids for 6 mo. Then off the steroids and on the Humira. I have been on Pentasa and all of the oral drugs like pentasa. Oral steroids, percocets, vicodin, for the abdominal pain and flares. Then came kidney stones caused by the Crohn's. Had Lithotripsy twice, they came right back. Off and on still on the Humira since 07, using 2.5 mg of prednisone for the arthropathy with the 5 mg. of Vicodin. Taking 0.5mg of Xanx to keep me calm. and about 16 more meds for different conditions. I'm a type II diabetic on 2 oral meds and insulin from the steroids. Had open heart surgery in 09 for an aortic aneurysm which ruptured when they opened my chest. Lucky to be here. Great surgeon! New plastic aorta, pig valve and 1 by pass. Just turned 65. Was turned out to pasture from my employer of 40 yrs due to the economy 3 weeks before the heart surgery with basic blue cross/shield with a 3500 deductible and then paying 20% then on. Lucky I was on my wife's insurance too, 218,00 hosp. bill, 60 G's doctor bill. Anyway, had a colonoscopy in Jan. '13 and Crohn's is alive and well in the ileum with 5 ulcers stretching 20 cm. and that's where I am and what I deal with every day.

I am seeing a Rheumatologist and he performed a lot of expensive tests, some at the U of M. He has concluded that the arthralgia is caused by the active Crohn's. This GI guy is new on the case. He has double my Humira to every week, discontinued the oral asacol, and put me on loperamide and has slowed the diarrhea to 10-12 times daily. The pain itself does not feel like it's in the joints, but in the tendons and ligaments around the joints and in the palmar fascia of the hands and feet.

Thanks for the info. I'll discuss it with the dr.

 

Thanks for the response. Hot showers help but short lived. fortunately I have good insurance through my wife. Humira manufacturer has helped tremendously. I can only pass on that if you have insurance problems, contact the manufacturer and they may be able to help. I take over 20 medications for different conditions, diabetes, heart, etc. co-pays can get to where it's still over a couple of hundred a month. Taking some over the counter probiotics, Vit. D3 for bone loss due to prednisone. Fish oil for heart triglycerides, but 20 regular prescriptions. Each of the 6 doctors I see I ask what can I get off of and each say nothing. So that's the way it is at 65 yrs old.
I live each day as it comes, after I check the obituaries and don't see my name, I try to have a good day.

Thanks for the info. You have similar problems resulting multi problems. My age doesn't help. 65 now and feeling 75.  Your right about the advil. It does help but can't take it more than once a day and then on a full stomach.  The chronic pain is wearing me down.  I used to have a high tolerance, but now it's becoming less tolerant.  I'm considering getting a 2nd opinion at the Cleveland Clinic as well as seeing a pain specialist.

Thanks for the input.

Rojon

 

Thanks so much for the info. I have to get clearance from my insurance company, you know don't do anything until we tell you ok or it's your bill. I know the Cleveland Clinic in on my plan. The Rheumatologist did send blood samples to the U of M be cause it was the only place that did some specific tests that he required. I never saw a bill though. We'll check it out and see.
Are you still having issues with the Arthralgia pain? What all are you taking? and how long have you been treating for it?

Thanks for your reply. This morning I have a regular doctors appt. We'll see what he has to say. He is the one who prescribes my pain meds. The pain is bad this morning, but the Vicodin and 2.5 mg of predisone is beginning to help. I have to wok for 5 hrs today, driving a shuttle for a university. It helps keep my mind off of it and keeps my hands, legs, knees, hips and other joints active and moving. I just don't give up.
I'm going to beat this!