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New to forum, could use some help!!

Hi!! I am a 20YO diagnosed with Crohn's when I was 17. I am a D1 swimmer at USC. My freshman year I qualified for NCAA's. I have been in remission once for 6 months the summer leading into my freshman year at USC. An unknown allergy to amoxicillin completed destroyed my remission and gave me a rash for weeks. Since then, I have had on and off symptoms (bleeding, cramping, overall not feeling well). I had mono from September 2015-March 2016. Colonoscopy this summer showed that the Uceris was not doing it's job so my GI switched me to Imuran (and prednisone). I was on 40mg of prednisone for 6 weeks to raise the Imuran levels and have been tapering off prednisone since September. My body is very sensitive to prednisone and i have never been on more than 20 mg before. I am currently on 7.5mg and have been dropping 2.5 every week. Currently experiencing severe joint pain in my knees and severe headaches. I have experienced nausea, lightheadedness, and severe mood swings with this prednisone taper. The joint pain and headaches have been interfering with my training and I desperately need to train so i can be the swimmer i was freshman year. The mono last year screwed me pretty badly, and i want to prove myself this year, but it's hard when everything hurts all of the time. I have an allergy to ibuprofen as well, so i take tylenol when i can, but i try not to so i dont destroy my liver. I suffer from gastritis as well. Tylenol doesn't help with the joint pain. I have tried icing after practices and compression as well, but neither have helped much. Anyone have any suggestions on how to get through a prednisone taper with minimal pain and suffering?
 
Do you think the pred is causing your joint pain? Joint pain can be an extra intestinal manifestation of CD. There are several different forms of joint pain that can occur with CD and some can run independent of active Crohns disease flares.

My son is 20 and has CD. As an EIM (extra intestinal manifestation) of CD he has juvenile spondyloarthropathy (SpA). It generally runs independent of CD flares. He also has joint issues that run concurrent with CD flares.

He was put on methotrexate to help with his joint pain and it helped immensely with his knees and a good bit with his back (SpA).

I'm going to tag maya142 as she may be able to give more insight
 
Hi Clash!! Yes, i am almost positive the joint pain is due to the prednisone, or rather the prednisone taper. It started when i dropped from 25mg to 20mg and has been off and on since. This week it seems to be worse. I dropped from 10mg to 7.5mg on Sunday and am planning on dropping to 5mg this Sunday unless my pain continues.
 

Maya142

Moderator
Staff member
Joint pain is definitely possible with a Prednisone taper. You could also taper more slowly. That is what we have to do with my daughter, who is 19 and a college freshman. We get down to 10 mg quite easily but then need to taper by 1 mg every week after that. It takes FOREVER and it's a gigantic pain, but it really helps.

For pain, unfortunately, I don't really have any good ideas. Voltaren gel MAY be a possibility. It is an NSAID gel (I don't know if you are allergic to all NSAIDs or just Ibuprofen?). It is applied on the joints that hurt and you do need a prescription for it.

Besides that, we use a lot of heat and ice. You can try an OTC knee brace and see if that helps. You could also try Thermacare wraps - they are warm wraps that stay warm and they make special ones for your knees (you can get them at Rite Aid or CVS). Does a warm shower help?

Sorry, wish I had more ideas.

The other thing is that Spondyloarthritis is common with IBD. So if your joint pain does not go away, it might be a good idea to see a rheumatologist. CCFA has a good explanation of the various types of arthritis that are associated with IBD: http://www.ccfa.org/assets/pdfs/arthritiscomplications.pdf

Good luck!
 
I have not tried other NSAIDs for fear that it will cause another flare up. I have been in remission since the very first dose of prednisone--> so it's a great drug for me, but this taper has been really hard. I have a compression wrap that i use, and being a D1 athlete has its perks with recovery. I ice after every practice, and I have seen our sports doc who prescribed me with 50mg of tramadol to take when the headaches get too bad. I've taken it once, but saw similar results with tylenol (none really). I've also tried some Magnesium gel because I get A LOT of leg and foot cramps on a daily basis which is an indicator of a magnesium deficiency. GI did not want me to take a magnesium supplement because i am on so many others at the moment. I take calcium, iron, fish oil, multivitamin, and vitamin D (once a week).
 

Maya142

Moderator
Staff member
Voltaren gel is topical, so not all that much Voltaren is absorbed. Kids who have arthritis and IBD are often prescribed it instead of an NSAID. It should be ok for your gut and shouldn't cause a flare, but you have to ask your GI.

I would try tapering more slowly if your GI is ok with it.
 
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