Posted , 4 users are following.
Well i have done the longest time so far on my DSNS reduction, gone from 10mg to 8.5mg, though i must say after doing 3 full days on the trol today i have felt some aching in my feet and nebver had it before, but start 4 days of 9mg then some days 8.5 .
Then pains in the temple and eyes are less is this because of the pred doing its job or maybe the lower dose suits me better, any thoughts please.
0 likes, 3 replies
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EileenH margaret22251
Posted
Fingers crossed it keeps on the same way!
muirkelsi EileenH
Posted
I have been on steroids for quite a while now, and started on 15mg reducing down to 6 mg at the moment. I tried coming down to 5mg, but was in a lot of pain. I am still in pain with the 6mg, but not as bad, My shoulders and arms ache for most of the day, and I waken about 5am each morning with pains in my legs. My walking is not as good as it was last year, but that maybe because I do not take enough exercise. I saw my doctor last week as she thought that I needed water tablets as I was holding fluid. I really do not want to up my steroids as I put on quite a bit of weight.
Would be grateful if anyone has managed to solve this problem.,
Kind regards,
Grace
EileenH muirkelsi
Posted
If it were me, I would try taking 10mg for a few days and then go back to 7mg and see how I got on. It is far more likely that it is not simply fluid retention but the return of the inflammation of the PMR which also causes swelling. Most good doctors recommend adding 5mg to the dose that failed to get rid of the inflammation and then returning to the last dose where you were well.
At this stage you shouldn't be reducing too quickly - you need at least 2 or preferably 3 months at the new dose to be sure it is still enough. At this level about 7 or 8 mg your body has to start making its own cortisol again - and that takes time to settle down which is another reason for going slowly. Forcing a reduction here not only risks a flare but can also make you feel quite poorly if your body isn't making enough cortisol yet.
You have a choice: you take enough pred to manage the symptoms or you decide you will put up with the pain and stiffness that unmanaged PMR means. It may sound harsh - but unless you take enough pred to do that there isn't a lot of point taking it. If you are taking too low a dose you are just letting the inflammation start up again and so you are getting side effects without any good aspects to balance them out. It is always a balance - yes pred has side effects, but it is also keeping you able to have a relatively normal life style and be in less pain. Being in pain makes you unwilling to take any exercise which is very important to keep your muscles in trim - and it is also a natural anti-inflammatory so also helps the PMR. All you really need to do is go out every day and walk for half an hour - as briskly as you can. No-one expects you to go to the gym or lift weights! But your walking being bad is probably because the PMR symptoms have returned.
Most people put on weight with pred - but it is possible to lose weight even while still taking it. I have lost 19kg in the last 3 years. It wasn't easy, I needed a lot of discipline. I'm not the only one - there are several ladies on the forums who have managed to lose at least some of the pred weight they gained. But it does also mean being on the right dose so you are able to get out and at least walk for that half hour a day - even if it is just to the shops and back a couple of times. It doesn't have to be all at once, 2 lots of 15mins is enough too.