Any advice please - started on 20, tapered well to 15 at 2.5mg drops at a time. Dropped 2.5 to 12.5 and didn't do well tried to go up by one but landed up having to go back up to 15!
Dropped from 15 to 10 by 1mg every two weeks . Hit a problem at 10 - took 11 again then 10.5 then 10 again - have been going up And down like this for two weeks now - seems like I may need to go back to 11. My arms /shoulders feel week and heavy - my neck feels swollen - my hips hurt and my legs feel too heavy to get up the stairs.
Sometimes when going down - if Ive persevered it's got better.
I have had quite a bit of emotional stress.
I know I seem to ask the same questions all the time. Sorry
Also dleeping very poorly!!
Thanks
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Slosh
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Hi slosh, A lot of people hit a brick wall at 10 mgs and as you say you have been having a stressful time. I would go back to the level you were last comfortable at and wait there until things settle down. I got below 10 by spending 6 days on 10 and one day on 9, the following week 5 days on 10 and 2 days on 9 (9 separated from 9 by 10s) and so on until I was on 9 for the week, then I began the same with 8. I must say the deathly tired is really hitting at 7 now. Oddly my doctor talked about a sleep clinic! I thought it was an accepted fact that auto- immune diseases caused fatigue, as does Pred as does tapering. Suddenly I have a sleep disorder - I don't think so!
I think so will go back to 11 and see how it goes - settle there for a bit.
I've also got a little (only a little) burned walking to shops and back a couple of times - wonder if that could have negatively affected me. I never think about the sun like that here as I'm from Africa and have a tanned /Olive - skin - people have often thought I'm Mediterranean.
Sorry that you are alone 😘 - It's harder when one is not well.
I'm sure the Aunties and others will be along shortly with their thoughts but, for what it's worth, here are mine to go on with!
Your initial, relatively trouble-free Pred reductions sound fairly typical, but you're now getting to a more critical level (10-ish mgpd and below) in terms of nudging the sleepy adrenal system to get its act together again. I remember having similar problems at 10-ish mgpd for a few months until things settled down. I'm now down to 4mgpd fairly happily but, again, after having to plateau at 6-ish for several months. Unfortunately you can't rush the process. As the experts say, PMR comes and goes of its own accord, as and when it decides to. I've been there and got the T-shirt!
I think the bottom line is that you just have to roll with things and, if necessary, stay at a level of preds which keeps the PMR symptoms under control until the body catches up and / or the PMR starts to subside. Timescale for this? Who knows, but the experts say a minimum of 2-3 years from onset, possibly more depending on your personal context. It's a slow old do...
And, yes, Stress definitely feeds back into the equation symptoms-wise, so it's important to pace yourself mentally / emotionally as well as physically along the way (i.e. take things easy and try to avoid any kind of 'overload'). Easier said than done, I know...!
Hope this helps, be patient and try to keep smiling on the Journey
Thank you - that was motivating. I suppose because Im only 60 I thought I may get down quicker. But I do also have Hashimotos Thyroiditis, Psoriasis, and possibly Fibro. My Rheumatologist said a year - I'v since learned that this would be wishful thinking. I suppose I worry about the side effects;
Bone loss, and I'm so weepy / depressed and sleep so badly.
I also feel that there has been s negative effect on my ligaments and that my knees have become worse.
I work as s live in Carer and so don't have my own place, surroundings routine etc and am not bear a gym of pool this time.
Have you tried the Dead Slow Method maybe reduce by .5 at a time its the only way I managed to get to below 10 and even then am now back to 14.
Listen to your body choose a time you have not to much to do and try to reduce then but for now go back to level you feel at and stay their for a few weeks .
Under stress of any sort - slow down, even stop, a reduction. This isn't a race and going slower is often faster in the long run.
Like a lot of others I got stuck at about 10mg - it was 4 years before I got well below there! And sorry - age doesn't help. I was still only 51 when PMR appeared and 57 when I started pred. You can't forecast who will find it easy and who will struggle. If only...
Hi Slosh, it does sound as if you may have been trying a bit too hard - some significant drops within relatively short spaces of time. I also yo-yoed in the early stages - a combination of wanting to get the pred as low as possible plus my GP having very definite views on how fast reductions should go. Unfortunately, having had to go right back to my starting dose, I learnt that for me the only way was to take it very slowly, and I'm convinced that in the long run this will mean taking less pred overall.
DSNS seems to work for many and must be worth a try. Personally, I've found that DorsetLady's is a very helpful plan. It goes in a cycle of 5 weeks and as I'm only willing to reduce by 0.5mg at a time, that's all I manage in a month. However, for me the psychological bonus of keeping on moving in the right direction is so important that I'm willing to creep in this way!
Your story sounds very much like mine, I finally got to 9 then the same thing, I have now started using the DSNS as outlined by these wonderful people and am successfully at 5. I did personally find as well that the 4th day or so of a reduction when going by 1mg was always a bit painful and my primary care Physician and I decided that it was pred reduction pain not pmr as it would normally go away in a day or 2. The DSNS has been AMAZING FOR ME!!!! Good luck
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