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Posted 11/4/2014 12:29 PM (GMT 0)
So I am one of those people....only come here when I hurt. I honestly did peek in often to check on y'all.

I slowly tapered off prednisone and was only on probiotic for 8 months. Got past the aches of Pred withdrawal and was doing great...until...work blew up and stress caused flare. Not horrible but when I started doing the throw up thing every time I went to the bathroom, I knew it was back to Pred. Started 40 mg the first of October. I've tapered to 20 now.
Sunday morning I woke up with pain in my upper left arm. Not quite in the shoulder. More like where you would get a shot. It really really hurts. Feels like a charley horse that won't relax.

This morning, when I got up, my right knee is the same way. Is this punishment for returning to Pred? Any ideas for relief?
Posted 11/4/2014 12:52 PM (GMT 0)
hey, welcome back :-(

tell all us inquiring minds why you aint on any real maintaining drugs ?

sounds like good ole funky new and improved pred sides -

i always try to stay extra hydrated when pred is consumed -
Posted 11/4/2014 1:49 PM (GMT 0)
Well Imuran nearly killed me. Allergic to Lialda and sulfa based meds. After Imuran, I tapered off Pred and was doing great. Felt back to normal. The dream lasted for 7 months...then favorite coworker left to pursue her dream and new hire has been nothing but mess. Everything fell on me and bam...flare city.

I was really tired of taking meds, supplements and worrying about med schedules. Now I'm wondering if there is some maintenance med that will work for me. Only Pred seems to get me out of flares.
Posted 11/4/2014 2:04 PM (GMT 0)
Unfortunately if you are intolerant of mesalamines your options are immune modulators, and if Imuran is off the table what does that leave other than pred?

Methotrexate? Biologics. Surgery.

Pred is going to be a disaster if you continue to use it this way. Please go back to your DR and discuss next steps.
Posted 11/4/2014 2:08 PM (GMT 0)
If someone is intolerant to mesalamines then is it possible to transition to non-mesalamine rectal meds to help relieve flares?
Posted 11/4/2014 4:01 PM (GMT 0)
Rectal steroid foam could help if that is near your inflammation. Don't rely on Pred as your rescue med for too long, it gets progressively more dangerous. Really. Have a 26 year old friend waiting for double knee replacements, and that was after he lost his colon.
Posted 11/4/2014 4:15 PM (GMT 0)
steroids of any kinds are not a long term solution, and that includes rectal steroids.
Posted 11/4/2014 4:33 PM (GMT 0)
if it is joint pain, I am not sure if it is pred or UC related. Both can mess with joints. But if it is muscle pain, I would get electrolytes checked - especially since you have been throwing up and going to the toilet often.

while you might find some nutritional approaches that could function as maintenance, if you are sensitive to stress you may also need something to keep calm. The next step would be biologics, and I know that is a big step. I am glad I did not have to take it so far - but I tolerate Lialda fairly well.
Posted 11/4/2014 5:11 PM (GMT 0)
You definitely need a better plan than just probiotics and a pred taper. You are bound to flare again and again and again and have to go on pred again and again and again. I'll take you at your word that you are allergic to sulfazine and the mesalamines but would you elaborate on "Imuran nearly killed me"? Don't have any good advice for you so far.
Posted 11/4/2014 8:01 PM (GMT 0)
I was hurting so badly I went to my GP. Love this guy and he knows that I must be hurting to come see him. He felt my knee and possibly tendinitis, but said that could be from other things. Since UC has so many dance partners, he drew blood for complete blood work. Also gave me a shot of roids in the rump. Said should give shoulder and knee relief until blood work comes back. Talked about humira and he wondered why gastro doc went to Imuran before humira. Who knows....3hours later and I can walk normally. Now waiting on upper arm to get message.

Question for all... I know NSAIDs are bad, but how safe is Tylenol for UC? Since my UC adventure began 3 years ago I have not taken anything other than UC related meds/supplements. Ironically I haven't had a headache or been sick either. Wondered if Tylenol would help pain or cause me more issues.
Posted 11/4/2014 8:08 PM (GMT 0)
Garylouisville....Imuran had me in the floor of the ER. FATIGUE to the point of blacking out. Severe lower back and lower gut pain...there are about 2 days that I don't remember. Took Imuran for couple months while tapering from Pred. After a month of only Imuran only it hit me like a ton of bricks! Lead to Immediate cessation of Imuran and back to Pred for like the slowest taper ever.
Posted 11/4/2014 8:12 PM (GMT 0)
tylenol is fine but won't touch joint pain in my experience.
Posted 11/4/2014 9:38 PM (GMT 0)
Go for the biologics: remicade, humira, or simponi. It's foolish to have uc and not use a maintenance medication. I'm on remicade and it's worked wonders for me.
Posted 11/4/2014 10:24 PM (GMT 0)
You should consult with your doctor, but I always have all sorts of weird pains when either going on or coming off of pred.
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