prednisone

Hi all!
I was looking for a support group and came across this one. i must say, this is where i want to hang out and meet other crohnnies that can relate to what I'm going through. Its sad that my family has no clue what I'm talking about. They just give me a blank stare, which frustrates me even more. Anyways here's my question-I've been on pred since 1999 to manage my crohns along with asacol bc of the bleeding out and mouth sores. Back then, my doc(fp) thought it was from stress, so he prescribed pred. I had another bad flare(bleeding)so i went to the GI doc who diagnosed me with crohns. Now that doc put me on pred from 2001-2006. Before he retired in 07, he referred me his associate. Now this new GI doc put me on the same plan, pred, asacol, and also referred me to an RA doc, because of the joint pain. The RA Doc put me on MTX and tapered me off the pred just recently. I now have pain in my joints, and sometimes it feels like bone pain. My rhuemy also started me on reclast, Vit D, folic acid and calcium. Could this pain that I'm feeling in my bones/joints be the long term effects of pred? Or could it be another minor flare bc they took me off the pred?
Sorry for the long post...
Tia:)

Hi minnietoty,

Yes, my GI is aware of the drugs my rheumy prescribed. My GI wanted to put me on Remicade, but insurance did not cover, so the next best was MTX. I had a bone scan 2 years ago. results were-osteopenia, and that's when i was put on MTX and all the other goodies. I asked my RA doc if the pain in my arms were due to the steroids and he said it was my spondyloarthropathy. But i really think its from all the steroids...double edge sword?
I told him about my arm pain on my last followup, which was 3 months ago, and he gave me an injection and now its coming back. i will see him next week again for my next f/u appt. and discuss what other options he might recommend besides the pred. I have a feeling he might want to put me back on again:(
Thanks,
Tia

Thanks, Kazbern!
looking forward to all the good advice here. I don't feel like I'm the only one with this terrible disease.

I'm glad the meds worked for you! It is no fun to have pain in the arms :/

Have you tried protein drinks? I heard this also helps joint pain.

Going to the health food store to buy the protein powder tomorrow and hopefully that will do the trick, and may stop the gurgling stomach, its been doing that all day, which makes me think that i might have a flare coming on. oh, boy, what's next? Stay tuned, lol!

I will honestly tell you that I will never ever go back on predenisone ever again. I just turned 22. In the year of being on prednisone I gained one hundred pounds...as well as the other side effects of moon face, joint pain etc.

In less than 6 months while being on prednisone (I had a bone density scan and then this happened 6 months later), my ribs broke while I was sleeping. This was due to the pred doing bad things to my bones. If ribs can break while you are sleeping, what else can break doing anything?

Two weeks after this whole ordeal, one of my teeth cracked and partially fell out. A week later, another one did the same. Went to a dentist 2.5 weeks later, found out another one had cracked as well and I just did not know it. Now I have to have four teeth pulled.

So basically I only have bad things to say about prednisone. I would try to find other alternatives if you could. Have you asked about ay other steroids, such as Entocort? Its another steroid, with no where near the possible bad side effects as pred. Just an FYI, I've also used Kenalog before, but as a spray, and it has worked well for me in the past.

I can honestly say you have the first generally postitive feelings toward pred that I have ever read. More power to you :)

I would be careful and get bone scans every so often and take lots of calcium- generally doctors dislike having patients on prednisone for more than a few months. I was on it for just over a year and had medical and non-medical people balking at that.

Good luck!

My father was on predisone during the last year of his life (he had cancer). The pred helped, but caused severe osteoporosis. Since he was dying anyway, that wasn't our chief concern, we were just glad he was made more comfortable.

It was different for me and my Crohn's. I was on prednisone for something like a month, and I started losing my eyesight. Turns out I had "steroid-induce glaucoma." Fortunately, going off the steroids and using special eyedrops, I was able to bring the glaucoma under control. But it was scary. I'll never take steroids again.

I am a long term predisone user..My main complaints for the long-haul has been the weight gain and teeth deterioration I have a few missing and the rest are most filling and very little tooth! I don't have joint pain--I had severe joint pain before predisone..I ended up on thyroid medication and blood pressure medication at the beginning of predisone..It did push the CD progression back..I seemed to have a reaction to all the other drugs before predisone..The taper downs are awful, and the smallest dosage I have been down to is 5mg..I am currently on 10mg..
Cindy

When I was put on predisone, I was given antibiotic and steroid injections along with oral steroids and antibiotic combos..It did push me into remission--I swelled up like a balloon but I was up and eating..Everything else I reacted to or was up and down..I really need to try and start a taper down again..