Posted , 12 users are following.
Diagnosed with PMR 14 mths ago
Severe pain and limited movement 30 mg predsone now at 6 mg and struggling
some days good
Others unbearable
Have most days hand issues swollen and ach can hardly bend fingers
Shoulders ach hips ach
Weakness in muscles
Yikes what is going on
1 like, 18 replies
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erika59785 java4u
Posted
The aching of hands and fingers could be RA, or in my case Palindromic Rheumatism. Joint pains and swelling come and go. I need to take daily Plaquenil for this which has been helping me.
I hope you can find the cause of your pain and a remedy.
kathy67492 java4u
Posted
Sorry you are struggling. It seems like you have reduced the prednisone very quickly, which is not usually a good idea. I have found that there is less pain, etc. if I am taking the right dose for the amount of activity I am trying to do...cannot "burn the candle at both ends" so to speak. Someone with more knowledge will chime in here with a recommendation to up your dose to find relief. No value really in sparing the prednisone and allowing the inflammation to rage.
maid_mariane java4u
Posted
Hi Java
I really belive you have dropped way to fast and obviously your PMR is not under control. I've had PMR for 14 month's and now at 15mg which is slower than most.
This is not a race see you rumi asap.
Mariane
diana21296 java4u
Posted
Totally agree with what the others say. I have had PMR 12 months and I am on 13mg reducing half mg per month with no pain and a reasonable life style if I don't overdo things. Can't reduce any faster and even dropping a half makes me feel rotten and fatigued for a week. Then I get back to normal.
marian56227 java4u
Posted
Hi Java. I sympathasize. I too struggled at 6mg, pain so bad I phoned my Dr & he put me back up to 8mg. I wasn't pain free by any means, but swollen hands went back down & pain lessened. I' m now on 7mg & dreading when I'm back to 6mg in case the same happens. Good luck. Will be interested what the experts say.
EileenH java4u
Posted
You are not reducing relentlessly to zero - you are reducing to the lowest dose that gives sthe same result as the original starting dose did. You have probably reduced too far and you need to go back to the past dose that was good for you.
PMR is the name we give the symptoms of an underlying autoimmune disorder which causes your immune system to attack your body and cause inflammation - in PMR it is probably the small blood vessels in the muscles. The pred only relieves this inflammation, it does not cure the real illness and as long as that is active you will need enough pred to mange the new inflammation caused each morning by a new batch of the inflammatory substances shed in the body. For 75% of patients this takes between about 2 and 6 years, only about 25% get off pred in 2 years or under and they are at a higher risk of a relapse later.
I don't think you have necessarily reduced too fast, if you had no symptoms on the way down that's fine - you HAVE reduced too far. Once niggle start to appear you need to watch out as the next stage is letting in a flare if you don't stop reducing.
It doesn't mean you won't get lower - just not yet.
Guest java4u
Posted
I think my GP made me feel that I should get off the Pred asap, therefore there is a tendancy to decrease too quickly. I have started to take control of my reduction and tell him if I feel I need to increase for a while, no advantage in being in pain if it can be avoided after all what's a few more weeks going to change except being out of pain. He seems to accept this ok. I would certainly try increasing Pred to a pain free level and then after a while try to reduce slowly again.
Anhaga java4u
Posted
marian56227 Anhaga
Posted
I've never been totally pain free. But have very good days when I can do things I enjoy, but often do too much & then suffer for the next couple of days! It's a real vicious circle.
erika59785 marian56227
Posted
pauline36422 java4u
Posted
as far as pred goes. so the slower better. willl lesson the chance of a flare
creeping in x
java4u
Posted
Went to a specialist to check for RA
Very small amount shown in hands not enought to be conclusive
PMR it is then
It snowed yesterday
Omg could hardly get out of bed
Take 6mg of pred
And a few hrs later better but not pain free
Dont think i have ever been pain free
It is frustrating how limited you are in things i used to do
I have studied all the internet info
Everyone is different
Prob lower dose is part of issue
Will try 7 or 8 mg
snapperblue java4u
Posted
You ask "what is going on?" You have PMR that is not being managed by prednisone at the dose you are taking, that's what! PMR typically lasts longer than 14 months and you will need treatment (prednisone) until it goes away.
I hope you have read EileenH's post- she really knows the ropes of this disorder. Much on the internet may be wrong or contradictory, but Eileen is very credible. If you are going to believe anybody on the internet, believe her!
Why have you reduced to 6 mg? Did your doctor indicate that you should get off the prednisone as soon as possible? More typical is getting to about 10 mg and hanging on there for several months. (Some people can reduce more, others less, but the dose you reach has to be effective!)
There is no virtue in suffering pain and restriction of activity if somewhat more pred would allow you better life.
Does your doctor know the extent of your pain and that "some days are unbearable?" My doctor lets me adjust the dose myself, according to the symptoms. In your shoes, I would try 10 mg and see if your symptoms are nearly gone after a few days. Then, if (and only if) the symptoms are gone, I'd try reducing. (Your body will not adapt the that dose in a few days, so you can reduce quickly) When the symptoms return, I'd go back to the last effective dose. Then I'd stay at that dose for a month.
PMR is one of the few autoimmune diseases that has a treatment that is effective for most of us and is also mainly tolerated. Please don't continue being miserable! You deserve to have your life back- maybe not 100% but way, way better than you are now. Best of luck!
snapperblue
Posted
I should have said more specifically that my doctor lets me vary the dose, but I don't know about your relationship to your doctor. If your doctor has directed you to be on 6 mg, does he/she know that you are functionaing so poorly?
If you are not communicating regularly with your doctor, this seems like a good time to give him/her a call. Your doctor should know the lowest dose that actually worked for you and that 6 mg is not cutting it!
Some doctors act like the goal is getting off prednisone, as if it is like quitting smoking! But NO- you are taking pred for a reason and (barring a problem with taking pred) you will need to take enough to treat the PMR until it goes away. Again, see Eileen's note above.
marian56227 snapperblue
Posted
Yes my Dr is great, but I queried with her about the lower doses. I told her I read that Bristol hospitals say when you get to 7.5 mg you should stay on there for 3-6 months. But she poo pooed this saying"you need to get off Preds asap"! I see her shortly & plan to have this out with her again as I'm now on 7mg & getting a lot of pain some days. Marian
EileenH marian56227
Posted
The Bristol suggestion is to stay at 10mg for a year - this reduces the rate of flares to 1 in 5 instead of 3 in 5 with the more usual approaches. Another top PMR rheumatologist likes to keep patients at 5mg for up to 9 months when they get there to allow the adrenal function a chance to catch up.
But she is exhibiting her ignorance of the disease when she says "you have to get off pred asap". As long as the disease process is active you need pred - and NOTHING she can do will change that. If she has forced you to reduce to 7mg and the symptoms are back - you need a bit more. It may only be another 1/2mg you need, but there is no point at all taking too little pred to manage the symptoms: you have all the downsides with none of the benefits to balance things out.
marian56227 EileenH
Posted
Tks for that Eileen. It's so frustrating as you know. You want to trust your GP but I don't think they know enough about PMR sometimes.
EileenH marian56227
Posted
This is a GP? No, they generally DON'T know enough and it is an ongoing problem. Mind you, there are plenty of rheumies as bad...