Should I be pain free?

[JUDEAPUDE]

Hi everyone.

I was started on prednisolone 15mg beginning of March. I felt wonderful.

The pain got slowly worse and GP raised it to 20mg 4 weeks ago.

I am still in some pain - I can live with it pain - (if you know what I mean) some days better than others but I feel that it is slowly getting worse and I am not sure how I should be feeling. Should I still be in pain? My GP says we will try to lower dose when I am pain free for at least 3 weeks. (Reading your questions/blogs I wonder if anyone is pain free? )

So, my question really is should I be pain free?

Hope this makes sense!

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Yes that first dose is a nuisance, I felt 'cured' in January, been in pain ever since it was decreased. Not a single pain-free day in fact.

We are all different though, my response will be just the first of many varying answers.

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Hi Jude

If this is any help, this is my experience of the use of pred to cure pain. Initially I was given 30mg of pred. It knocked the pain out in three hours. That was 17 months ago. I dropped the dose by 5mg for two weeks. When I got down to 20mg some of the pain came back. I took one dose of Ibuprofen to combat this and it helped. However, I found reducing the pred very difficult and often had to return to the previous dose to be more or less pain free. I used ibuprofen on and off as needed. Eventually, whilst on holiday in Wales I had a complete relapse. Luckily I saw a Dr at the local hospital who understood PMR very well. He put the pred. up to 30mg again and told me to stay on that dose for 1 week. Then reduce to 25mg, then to 20mg just as before. The pain and tiredness crept back just as in the beginning. I often felt like a complete invalid. In January I began a slow reduction if I had a few good days. Often I had to go back to the previous dose and stay on it for a few days until I could start to reduce again. In Febuary I began to use ibuprofen again at 1 dose per day if needed and it usually did the trick. This was oked by my rheumy. The whole process was a real battle during the winter, but when the spring came and the warmer weather, it seemed to get easier. The pain was going! Today I dropped the dose from 8mg to 7.5mg. I hope I feel ok tomorrow. If not I'll take 1 dose of ibuprofen to help. My rheumy has really got her head round this illness. She said she doesn't mind if I only manage to reduce half mg per month from now on and that I am doing really well. That bucked me up no end. I must say that trying to reduce from 20mg was very hard and I had very few good days. I often think that the illness is getting less severe. I do hope these are not 'famous last words'.

Stick with it Jude. I know how hard it is. By the way, I avoid certain foods like tomatoes which cause inflamation in the joints in my case. I also take some suppliments like evening primrose oil for example. It's a natural anti inflamitory, but what works for me might not be for everyone.

Good luck, Pats.

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My experience has been that the "miracle" promised by some of the literature sadly never happened. With 15mg of pred I was significantly better. After two months on 15mg my blood tests became normal, the stiffness was gone and the pain was much reduced so I have managed without painkillers. I have been slowly reducing at the rate of 0.8mg every fine weeks and after nine months am down to 6.7mg. Every time the dose is reduced I feel worse for a couple of weeks and then recover to where I was before . At the lower dose I feel better in myself but perhaps a touch more achy. The last blood test was better so this dose not appear to be any kind of a relapse. I do get very tired and cannot manage to do all that I used to do although I am very gradually doing a little more. I find this very frustrating. I do feel that it would be better if the literature claimed that steroids will make a significant improvement to PMR. Then it does not raise false hope and then for anyone who does have a miracle it will be a bonus!

[Polywotsit PMRGCAuk team member]

Hello Jude and all

The doctors do know that the pred doesn't work with everybody but I'm sure they want to be optimistic about it themselves, as well as wanting to help people feel positive about the outlook of going on the medication. The problem is, we have more than enough evidence and experience that the picture is a lot more complicated than they want to paint it. For instance, my own experience was that on 20mg of prednisolone, my mobility returned, but the pain never completely went away. Sometimes it was so bad that I was crying out in the night in my sleep (or what passed for sleep). I used to travel on the train an hour and a half a couple of times a week and had to start getting up out of the seat five minutes before we got to Oxford so that I could be ready to get off. And even then the first few steps were agony. I was encouraged by a rheumy nurse to use paracetemol rather than ibuprofen, because the NSAIDs do interfere a bit with the action of the steroids. She said take the paracetemol four times a day (i.e. every five to six hours when up), every time I reduced the pred, and stick to it for a couple of weeks until my body started to get used to the new level of pred in my body. I found it very very hard and I can't honestly say I had a pain-free day until I really started to feel that the PMR had gone (*energetically knocking on wood*).

I feel very conflicted about what it says in the literature. Certainly, it must be true for some people because most never get a referral to the rheumatologist, and I have a friend who seems to have sailed through PMR without any apparent trouble. Two years to get off and no relapses so far.

So however lousy you feel, don't beat yourself up about it. Be nice to yourself and reassure yourself that you are not by any means unusual and you are not alone.

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Hello Jude,

I am 50, and have had PMR for 6 months.

I was started on 15mg Prednisolone and the effect was miraculous, pain free within 48 hours, I could have climbed Mount Everest and swum the Channel on the same day I felt that good!!

As my dose has dropped (now on 7.5mg) the pain and stiffness is slowly returning.

My Rheumatologist, last Friday, was reluctant to put me back up to a reasonably pain free 10mg, instead gave me a variable dose of codeine phosphate as a top up and referred me to a physiotherapist! the codeine has made me very "spaced out" and unable to drive, even on half the dose I am allowed, and with a disabled Daughter to care for, it has made this week horrible! I have had to stop the codeine so that I can care for her properly.

Paracetamol doesn't do anything at all, so I may have to ring up the hospital clinic to get further advice.

I think managing this illness is more of an art than science, and getting the lowest dose of Prednisolone possible seems to be the doctor's sole aim!

Like you, I too would welcome any advice on what I should do to keep as pain free and active as possible.

Take care x