Susie, I am on 4 mg of methylpred and have been for about 2 months. I tried 3 mg 2 months ago but I had a good bit of shoulder and arm pain

[Nickie]

I'm scared to try 3 again but want too. Even on 4 I have occasional shoulder pain. It is something I can deal with. My Rumy says I can do what I want and should go by the way I feel now that I have had this this long. My last sed rate in Nov. was 21 so that means thr inflammation is still there. My question is I like to go to senior aerobics and it makes me feel good afterwards. But, the day after I am hurting. Should I continue to go at a slower rate so I can loosen up my muscles or stick to just walking? Can I work through the pain and it will get better the more I do? Or, will this just make it worse? Also how can you tell if hand pain is arthritis or pmr?

[PMRpro Ambassador]

For some time now the recommendation of the experts has been that any reduction in pred dose should not be more than 10% of your current dose. More is likely to lead to pred withdrawal pain which is almost identical to PMR pain ( and some experts think there is a connected cause - your adrenals aren't working up to scratch, in the case of reduction - yet). Reducing from 4 to 3 is a 25% reduction - way above that.

You don't have to take the same dose every day - alternating old and new dose at this stage makes the reduction 12.5%, almost OK and it may work for you. If you are on ordinary white pred tablets (i.e. with no coating of any sort) you can cut 1mg tabs to give the option of 1/2mg changes. 4mg one day, 3.5mg the next is under 7%, perfectly within the 10% "rule".

The sort of pred I take can't be cut and the smallest tablet is 1mg. I start with 1 day new dose followed by 6 days old dose, then 1 day new dose, 5 days old dose and so on reducing the days between new doses until I get to alternate days. Then I increase the days of the lower dose in the reverse way to finally reduce by a total of 1 mg after about 5 or 6 weeks. By doing that I have got well below the 10mg I have got stuck at for the last 4 years and have had no problems with returning pain. I know at least 4 others who have done the same very successfully - 3 of them used it to get below 3mg and are now ZERO pred!

As far as exercise is concerned, with PMR you can't really "work through the pain". The problem that causes the pain is almost certainly that the muscles aren't getting enough oxygen to cope with a increased need when the muscles are working. Continuing to exercise far beyond the pain level will just leave you with sore muscles for longer. You can build up the amount you can do but you can only really do it by increasing the amount you do slowly so the muscles become trained but over a long period. Last winter I struggled to walk 200 yds slowly and with crutches - this winter I can walk a couple of miles and at a reasonably brisk pace. I started by increasing the distance by maybe 100yds at a time - until after a few months I was walking to the other end of the village and back without crutches. Then we increased the distance a bit further until I could manage the loop around the village and finally the speed increased by starting with a short distance a bit quicker - and so on.

There is no reason not to go to senior aerobics if you enjoy it - just be very strict about how much you do. A good instructor won't complain if you take smaller steps, don't swing your arms as high, stop halfway through - and doing some of the exercises are perfectly possible sitting down. Find what you can do without feeling sore - and each time add 5 mins more and it won't take very long until you manage the lot. Is it just once a week? You could try doing bits of the exercises at home in between - it may just be the fact it is all in one go once a week and by doing a bit at home every other day you can build up the muscles with less discomfort and the class won't surprise them as much.

It is difficult to tell if hand pain is osteoarthritis that has been masked by the pred - but if you reduce your dose in tiny tiny steps at least it is far less likely to be steroid withdrawal. If the PMR is coming back you would be more likely to have other pain as well, like you had at first. Hand pain is less usual in PMR though it does happen - but usually it is tendonitis rather than joint pain.

You say your sed rate was 21 so there is still inflammation - has it been lower whilst you have been on pred? The "normal range" for sed rate is up to about 35 - some people will have a higher level and it be perfectly normal for them and it also tends to be higher when you are older.

Good luck with your next attempt at reducing!

[Nickie in reply to PMRpro]

Thank you PMRpro for all your advice. When I was first hit with PMR my sed rate was 36. After 1month on the meds, it went to 55. Then it started coming down very regularly after the 55. In the summer it was 10, then 11 after the next 6 weeks. In September it went to 22 and the last reading in November was 21. All of this confuses me. I don't understand why it went back up. I go again the end of February. I am not near as tired as I was. I might try the pattern you did for getting to 3. I buy the 4 mgs at a time which is one pill because they are cheaper but they are hard to cut to get a quarter dose. There is one thing I did not consider. When the pain started to come back I went back to the 4mg almost immediately. I think I could have waited a week to give my body time to adjust. I read on this site of people saying it needs time to adjust. I will see how it goes and let you know. Thanks for taking the time to answer.

[PMRpro Ambassador in reply to Nickie]

If your sed rate is rising again now you are on a lower dose of pred it suggests that the dose you are on is barely controlling the inflammation and a further reduction might let it get away. Withdrawal pain usually starts quickly and improves over the next week or so while a return of the PMR is often heralded by pain that increases over a similar period - or even longer. If you keep the step down as small as possible it is both less likely you will suffer withdrawal pain and you may get to a lower dose that still works - a big step means you may miss the lowest dose that works and you have to go back to a higher dose than is really needed.

You must always remember the pred didn't CURE the underlying autoimmune disorder that causes the inflammation and pain that is called PMR (they are just the symptoms). It controls the symptoms to allow a decent quality of life and what you are looking for is the lowest dose that does that to use as a sort of maintenance dose until the disorder goes into remission. Some people take longer than others. Many doctors recommend 6 months at 5mg before continuing the reduction to allow your body to catch up - and also suggest staying at each dose afterwards for a couple of months to be sure it is still working.

You can get pill cutters that make cutting the pills easier - but it doesn't really matter if it is totally accurate or not. It's a bit like "does this teaspoon of sugar sweeten my coffee enough?" - it doesn't matter to the nearest 50 grains! It isn't a drug that must be accurately dosed.What I don't get today, I'll get tomorrow.