Pmr

[Shandon1]

Was diagnosed with PMR yesterday. Took my first pred 5mg this morning and the pain, mainly round upper arms, has eased quite a bit. It's very encouraging!

[PMRpro Ambassador]

Do you mean 5mg? or 15mg? 5mg is a very low dose to start on - on the other hand, if it works that's all that matter.

Good luck

[Shandon1 in reply to PMRpro]

5mg, have to take 4 during the day!

[PMRpro Ambassador in reply to Shandon1]

In PMR the standard and recommended way to take your pred is in a single dose as early in the morning as possible. This reduces some of the side effects such as sleep disturbance and also hits the inflammation harder with the higher dose at one go. The pain and stiffness is due to inflammatory substances called cytokines being shed in the body in the early morning - the earlier you can take the pred the more efficiently it combats the resulting inflammation before it gets set in. Taking it as 4x5mg isn't as efficient.

[Shandon1 in reply to PMRpro]

I read my instructions again. It's 5mg tablets 4 times a day. I will take 20mg altogether tomorrow morning!

[Celtic PMRGCAuk volunteer]

Dubliner - only "5mgs". I wouldn't have thought that would be a sufficient trial dose to have any effect on PMR pain. The usual starting dose is 15mgs. But we're all different and if 5mg is helping until your appointment appointment on Monday, as you say, that's "encouraging", but if PMR is confirmed then be prepared for a higher dose to get complete control of the inflammation.

[Celtic PMRGCAuk volunteer]

Ah, just seen your latest post, Dubliner - that makes sense, and I hope you continue to feel much better.

[suzieh]

I started on 20 mg per day - told to take as one dose early am. It took all the pain away within 4 hrs. Problem for me was I felt great but was very hyped up ......and couldn't relax........so after 5 days I reduced to 15 mg ( dr said it was ok to do this within the 1 st 2 weeks). On 15 mg I felt good no pain and fairly normal..... Now, 15 months on I am on 5 mg a day....have been very slowly reducing. Only one flare up in all that time. Glad to hear you are getting rid of the pain. You will find a lot of help advice and support on this site. I have found it invaluable.

[Shandon1 in reply to suzieh]

Have completed my first 20mg, finished with a 10mg. Not feeling well now and a bit sick and depressed. The first morning high well gone now. Will take the next 20 mg tomorrow over the morning. Hope the pain will reduce during the night and sleep will come.

[Shandon1]

Had my first sleep with preb. Slept quite a bit longer, not woken by arms pain, and did not have to leave bed as often. Have taken 10mg and the remainder 10 mg shortly. It's a new life to adapt too.

[Celtic PMRGCAuk volunteer]

Hello Dubliner

As you've experienced a better night with less pain then it sounds as though the 20mg is doing its job, and must be such a relief. However, it's best to take the 20mg all in one go rather than splitting it and having half 2 hours later. You need to take it with food, so either with or following your breakfast. If you still feel nauseous, it can help to include a small pot of 'live' yoghurt with your breakfast. Hope you have a better day.

[Shandon1]

Thanks for the help and advice. I even feel like doing a bit of gardening that I have not done for quite a time. I know things fluctuate but the pain is so much better.

[PMRpro Ambassador in reply to Shandon1]

Celtic's right - don't go doing too much because you feel well! A few days rest and TLC is what the doctor ordered not catching up with what you haven't been able to do. If you do you will feel awful afterwards! Whatever it is that causes the symptoms in PMR it makes your muscles unable to respond normally to exercise/overuse. Even a small amount of exercise has the same effect as far too much - and it takes much longer to recover. You have to learn to manage the illness too - the pred is just a starter. Overdo it and the PMR will turn round and bite back!

[cliveM in reply to PMRpro]

I tried to do very light exercise. The pain lasted for almost 3 days.

[Celtic PMRGCAuk volunteer]

Dubliner - no, please let the gardening wait. Those steroids are not curing PMR, they are just damping down the inflammation that causes the pain. It's great that you feel so much better but please be warned from our experience that if you overdo it on a good day when you feel well, the pain will come back to bite the next. Do give yourself lots of TLC and give the steroids a chance to do their job before embarking on any physical exercise. A little walk in the sunshine would be preferable.

[PMRpro Ambassador]

I've just seen your query about physio over on the other forum. If you do consider going the physio way be very careful and make sure your physio fully understands the implications of PMR. It is caused by release of cytokines in the early morning which cause general inflammation - that's why you are stiff in the morning. Alongside it there can be concentrated spots of these cytokines in what are called trigger points and if a physio works on them too enthusiastically you can feel quite poorly afterwards! It is good to get these trigger spots sorted out but it does require to be quite gentle to avoid feeling worse not better!

It means, too, that a physio offering the wrong exercises may may things worse - gentle manipulation and massage can be good, sticking you on the exercise bike is not. A physio here tried to get me doing arm and shoulder strengthening exercises and the pain after doing just one or two repeats too many was not nice.

What I did find helpful in the first few years when I had quite mild PMR but wasn't on pred was aqua aerobics which got me moving in the mornings! You need a warm pool and a clued-up instructor - you MUST do it gently and not try to keep up with everybody else. You don't need to use the foam dumbbells or woggle/noodle to do resistance work - just moving your flat hand through the water is enough to improve the muscle tone - and often stopping before the end of the class is a good idea. In fact, even just walking from one end of the pool to another is excellent exercise. And the steam room or sauna at the end is WONDERFUL!

[Shandon1]

Thanks, great information. There is a great improvement in my condition, but I am aware of fluctuations!