Severe chronic pain

[Carmen11]

Hi all , I was wondering if any of you have experienced pain while being weaned off Predinisone , not only am I in pain but it seems to move around from the top of my spine to right above my tail bone and now it's also in my ribs and around my sternum . It's scary because it's causing me to have a little shortness of breath , which makes me wonder if it's my lungs . Is this familiar to any of you ? I just hope once I'm completely off the pred that it will subside. I don't want to be dependent on pain meds , I've tried warm compresses , heating pads , icy hot , but it just continues to hurt. My doctor is sending a prescription for litacain patches , hopefully they will give me some relief.

[renidrag]

What is the dosage of pred? I was drug free for a little over four years but am now back on prednisone to keep inflammation down. My pain, mostly legs and feet is almost gone. I would rather take pred and be pain free, should have done it three years ago. I am low dose of 5mgs. If you are tapering perhaps you should slow down a little bit.
Dale

[Carmen11]

My dosage is 10mg , my doctor has been tapering it very slowly . I did fall the other day going up some steps and kinda landed on my my stuff I was carrying on my chest . I don't know if possibly that triggered an old injury in my spine from months ago . All I know is it seems odd that the pain moves around to different areas in my spine and ribs .

[Jaha]

You should probably contact your wegs doc about the roaming pain. I always have trouble at 10mgs with roaming pain. I've been trying to taper off for about 3yrs and can't seem to make it to 10mgs. without the pain hitting me or a flare. I hope that you can get this resolved.

[loisann11]

Does this mean you actually get off of prednisone some day??? I was wondering that. I was told the Imuran I am on is for a year.... not sure if that will really be the end of this.... down to 5mg every other day of the prednisone and no problems really. The arthritis has come back though. Maybe the pains you are talking about. Otherwise before diagnosed I had severe traveling pain....

[Dirty Don]

I've been off pred for about 6 mos now, knock on wood. Took 2 times to get off, but numbers remain good. Am working on mtx now...down 1/3 dose, have had a few lethargy issues last week, but have felt great the rest of the week. Today is week 4 of that...tenuous, I remain watchful. Get off if you can, but don't rush it...it leaves bruises...lol

[Geoff]

Hi Carmen,

Sorry to read about your predicament and pain issues. You were DX just over a year ago and from my perspective you may still have to find a "sure footing" before you can taper your pred down. 10mg is not a high doseage in my book and we all know that the side effects can be demoralising but hey, better in the long run to get a firm control of the WG before addressing the side issues.
When did you last do bloods? perhaps you are experiencing a flare? have you had one since DX? Have you learnt to listen to your body and suss out what is the new norm? Maybe it is as a result of the fall on the stairs, thats one of the probs with this illness is that you can end up laying every ache and pain at the Wegs door.
Can you get some tests done to check out your status? What maintenance drug are you currently on, for as we know, pred is for "putting the fire out" and shouldnt be used as a stand alone drug when dealing with WG.
On a completly different front, coming from the UK I am interested where you stand on this issue coming out of the USA about heading a football in junior games (for football read soccer!) Do you support any teams out of the USA and what got you into the sport?

All the very best, and let us know how you get on.

[Carmen11]

Hi Geoff , thank you so much for writing to me , I am so happy to meet people who understand about our disease and can give me advice and encouragement. It's only been a little over a year since I was diagnosed and I'm still learning all about this overwhelming new life. I'm on Cell Cept as my maintenance drug and take blood pressure meds , an anti-depressant , fosomax and the prednisone . I actually have a check up tomorrow with my rheumy and a breathing test with my pulmy as well. I'm hoping they will reduce my pred more tomorrow. Please pray for good news. I know 10mg is not a high dose but I have been on pred and being tapered down from 80mg for a year , it's done so much damage to my body with the osteoporosis and necrosis plus weight gain and moonface , I'm just ready to be off of it. A year ahalf ago I was playing futbol 3 days a week and knocking the guys down now I can't barely walk on some days... I hate it ! I fell in love with soccer as a young girl and the tender age of 7 , we are Colombian , so it's in my blood . I do not follow American soccer much other than during the World Cup and Olympics , but I love EPL and watch Spanish soccer as well... how about you ? Who do you like ?

ttys , Carmen

[cjhnsn29]

Carmen,

I have pain everyday already! Once they started tapering you of.the had started me on methrotrextate to take the place. I was experience different symptoms like can't taste or smell. Do you have problems sleeping?