Saw GP today after having 3 monthly blood tests. CRP is down to 6 but my PMR seems to have flared over the past few weeks. Pain in thighs, shoulders, fatigued etc. My CRP has been elevated fot the last 18 months and this is in fact the first time it has been normal. I am really surprised as I thought the CRP would be elevated given how I feel. I am taking 10mgs of pred. Discussed with GP about increasing the pred till I get more comfortable and he is happy for me to do my "own thing". I have read on previous posts re blood tests not necessarily being an indicator of active PMR but would like to know what my learned friends think as I am a bit surprised at the CRP result and would seek your advice as to what Pred dose to go up to..
Thanks once again for your input. You are a great help tp us all.
Need a tiny bit more information Kassie, like how long PMR, how you reduced. Have you been doing more than you would normally, been under some stress?
I assume your GP checked you out for other things going on ie an infection of some sort and all was clear.
Hi Mrs K.
Have been on prednisone since March last year but had symptoms for 12 months before that. I have been reducing from 15 mgms for about 3 months trying to reduce 1 mgm every 2 weeks. I have had to increase the pred dose back up to 15mgms a couple of times due to being uncomfortable. I have had stress with a sister who has had a Stem Cell transplant for Multiple Myeloma in the last 2 months. Our older sister died of the same disease in September last year so it has been difficult at times. I had an episode of bursitis in my knee last week and upped the pred to 20mgms for a couple of days.I don't do a lot due to the fatigue. Have you heard of others who have had raised CRP which has then gone back to normal but PMR symptoms still persist.
Thanks
KB
I think reducing by 1mg every 2 weeks is too fast and that may well account for your problems - once you have reduced it is a good idea to stick at the new dose for at least a month to make sure it is still enough.
Not everyone will find the CRP rises again if you flare but the yoyoing you have got into may well be the cause of the problem - taking the steroid dose away can also cause symptoms that are very similar to the illness you were given it for in the first place. Plus the stress you have been under will also not help the PMR.
Did you get a dramatic response to the pred to start with? Do the symptoms get very very much better with 15 to 20 mg? If not or if it doesn't seem to have the same effect now then the doctor needs to maybe look further - sometimes PMR can change into late onset rheumatoid arthritis or the symptoms were actually due to somehting else that pred doesn't work as well for.
Good morning Eileen
Did you have a nice holiday? To answer your questions.my original dose of 25 mgms gave me wonderful relief the next morning. I only had one dose of 25 mgms as My Physcian wanted me to reduce down to 7.5mgms and the reductions were usually in 2.5 mgm increments. I stayed on 12.5mgms for a while then started reducing down. Yes, I think I am better on the higher doses but get shortness of breath and a feeling of fullness in my head which is quite unpleasant hence my trying to reduce
I'm still on "holiday" - in that we haven't got home yet. I need a holiday now to recover from this trip! ;-) It has been hard work - as well as having work committments we have also been at 6 different family members for board and lodging plus several hotels! Never mind - only has to be done once a year! This time next year I shall be in China :-)
There is no wonder you have problems - whatever you feel about pred it is the only thing that controls PMR symptoms. If the underlying cause remains active the symptoms will return if you reduce the pred dose too far. It will die out but when is anyone's guess. The trick is to reduce the dose very slowly, not more than 1mg at a time and preferably spreading that reduction over a few weeks. We've been encouraging people to do it that slowly from even high doses and so far it has allowed many people to get to far lower doses than ever before. But if you try to go down in big steps it just doesn't work and you get symptoms back and raise the dose again - over and over again.
There is a definition: Madness is repeating the same action and expecting a different result.
If you are a person for whom 2.5mg drops are too much you will never manage to reduce the dose to low levels like that. You have a choice: accept the side effects of pred and have minimal PMR pain or decide the PMR pain is acceptable to avoid taking pred. It sounds harsh I know but that is the reality. If you try to take a dose that isn't enough you will still have PMR pain and also suffer pred side effects - no benefits and still side effects. Pointless really.
Your holiday sounds busy. Yikes come to Aussie for a rest. Not now though it is too cold!!! 2.3.degees in Brisbane early this week.
What would be a plan then? Go back up to 15 or 20 then start reducing after how long? This is where I get a bit confused. When I start feeling better I think I can start reducing the pred.
Thanks
I would add to Eileen's comment
It sounds harsh I know but that is the reality. If you try to take a dose that isn't enough you will still have PMR pain and also suffer pred side effects - no benefits and still side effects.
You also run a greater risk of GCA coming along. I presume you have been told by your medics to watch out for specific symtpoms.