How Do You KNOW?? | Arthritis Information

Could someone, anyone, please please tell me how you can tell if the pain you are feeling is due to the PMR or due to reducing prednisone? Since I have gotten to low dose of Pred, I feel really bad, but it is not in the same places that it started, its now in my hands fingers and knees. I mean, how do you ever get off this stuff?? I know about the every other day schedule and taking it slow, but it still hurts every time I reduce and never goes away. Thanks for any inputHow long is never? I went thru h e l l when i got of pred. I had to take an nsaid to tolerate the pain. But after about 4 months i was able to get off the nsaid. It was a slow relief. I now am just stiff. Very stiff. It s u c k s but is better than excruciating pain and better than being on meds. I guess i could try a tylenol or something but i just want to try to give my body a breather for a bit.I finally got down to 5m and had some pain in shoulders and nite sweats were back stayed there for 1 month then dropped to 4m but I can't get through the day without tylenol.My hands also bother me now which I didn't have before.I can't open jars or bottles and a lot of pain in the shoulders again.I WANT SO BAD TO GET OFF PRED! I think I'm going to have to go back up because I can't take the pain. Sorry for whining but it helps to vent.Hope all are doing well.

Sandy

Hi Pat and Paula,

I am also a newbie. I was diagnosed with PMR 18 months ago. With prednisone I have been operating pretty normally most of the time. I am working closely with my rheumy (as I see they are called on this site) reducing my prednisone slowly and only when my sed rate and CRP are low. I have had one time when we reduced and had to go back up and I think I am in the midst of a second such flare up. Last week I went from 2 mg to 1 mg and am crippled again. While I would like to be off prednisone, it has been a miracle for me, so for < a month I am essentially normal. At this level, 2mg, my regular GP said the dose is so low that the side effects are very low. She called it a homeopathic dose, almost placedo level. Well the drop to 1mg suggests tha something is going on.

However, I would like to stress again that I consider the blood tests to be an essential part of the feedback loop. An objective part. Once the inflammation is low then any pain is due to something else.

Best wishes,

Cof Fish Snr2008-06-29 12:42:03i am as confused as you guys are. i will go along on my regular dose and wham, all of a sudden feel like i am in a big flare up, sometimes reduce a half mg. and feel so terrible, like i am crippled all over, i do not know if it is the pred. or the pmr.
i would like to completele get off the pred just to see how i feel not taking anything, because sometimes i think the pred is not doing me any good, i know i do not feel well, and i am on 10 mg. right now. was down to 7.5, had some surgery had to go up to 20, now down to 10, what a roller coaster ride, and i did not feel well on any of those doses.
so i do not know how you know if the pmr or the pred is what is making us feel this way...................................georgiana

Thanks all for your replies. I just feel I am doomed to be on pred forever. Even today, after upping my dose again yesterday and today, I still feel bad but not like the days before when I felt like was going to die. My right knee and ankle are so swollen that I cant bend them, that is the first time thats happened. I have tried so many pills, serrapeptase, and many others, nothing seems to help except the pred. I wish I could find a pain pill that I could tolerate, darvacet and tramadol both make me sick. I can handle advil good but it doesnt do much. Any suggestions are appreciated. Also does anyone know what I can do to get the swelling down in my knee and ankle so I can walk better? thanks a lot Hi Paula,

My knee is looking like a football right now. This is close to where I started 18 months ago. I am hopeful that when I talk to my rheumy tomorrow she will approve an increase in prednisone - it is the only thing that seems to mop up the inflammation almost instantly. It got this way when my recent decrease in prednisone seemed to go too far.

When I started having this problem and before it was diagnosed, I was like a 90 year old (I am an active 60), someone said that perhaps this was as good as it gets. That was a very sad prospect. My knee specialist at that time figured there was a problem, took blood for tests and gave me a 5-4-3-2-1 pack of 10 mg prednisone. That took me through the weekend. On Monday he called to say to make an appointment with my doctor because my sed rate and negative responses to other things suggested PMR. I had felt so normal again over those 5 days that I was sobbing to get an appointment as I was about out of pills. My view is that I will take as much prednisone as it takes and deal with the side effects. This desease is supposed to disappear after 2 - 4 years. I am not willing to be a cripple for that long and have not been. It's a miracle.

So what are the side effects, bone loss - we are monitoring my bone density, no problem. Weight gain, I am holding my own.

That said, before diagnosis I was getting no relief with OTC NSAIDs, but I was starting to think that Ibuprofen and alcohol might be working...Stay with prednisone.

My mental model is that prednisone just mops up the imflammation - that is detect in the Sed rate and CRP tests. I don't think the NSAIDs do that. I am more scared of the higher power pain killers and I don't think they deal with inflammation directly either.

I hope this helps a little,

Richard

THanks, RIchard, it does help. Anyone who is kind enough to offer their experience makes me feel better. I am sure my knee and ankle are swollen due to me trying to decrease the pred.  I guess I will just have to accept that I am going to be on it for a long while and pray it doesnt totally screw me up. This last week almost did me in for sure. I just hate to admit that my really active days are over; right now I can barely open a door my wrists and hands hurt so, and Im only 57. Anyway, thanks again for all the replies.  Hello all

My Rheumatologist goes in for the long term drop - ie once down to 5mg per day stay there for three months, then drop by 1mg - stay there for three months, and so on.

This gives time for your ardenal gland to kick in again and function normally (whatever that is - normal I mean).

Only increase if PMR flares up again.

There is no known cause and no known cure - but patients are getting together to address this situation.   Google pmr-gca and see what has happened over the last three months.

Also - fill in the questionnaire - its on this site

Richard, your thinking echoes mine - I've wanted to be able to get on with my life, and with the pred I've been able to. I know I saw something when I did my own research early on that suggested that if the inflammation is got under control early (by early diagnosis and pred) then the pmr is more likely to burn itself out. I've only dropped when I've felt the pmr was under contol, and like Mrs UK taken the drops from 5mg down very slowly.

I know there are people on this sight who are keen to get off pred as fast as possible, but there are also those of us (who are maybe the ones who have been fortunate with the side effects) who are willing to put up with it for the life it gives us back.

MargaretHi Margaret, well I think you and Richard are right. After this week you can bet I won't be decreasing for a while. The main reason I am scared about pred is I already had osteopenia (sp) before this happened and also my hair is all falling out already, so I was worried about all the other side effects. My doctor suggested I decrease when he saw my moon face. But I have emailed him to ask him for some type of other pain pill that might not make me sick.   I am also on Plaquenil which doesnt seem to help (yet) and worried about my eyesight. I guess I just need to stop worrying so much and try to survive.
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