Advice needed please. I have enjoyed a fairly quiet Xmas with just immediate family - now feeling exhausted! Sleeping badly, having hot sweats, no energy. Real effort to get out of bed in the morning... usually takes until 4pm ish before I feel any better. I am lucky in that i have retired, have no worries and have a lovely family. Have reduced very slowly to 5.5mg... tempted to take 6mg again to see if I feel better? Is my tiredness a sign that my adrenals are not working and the lower dose of pred is affecting me badly
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suzieh
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Suzie - yes, it's so common to come unstuck at around the 5mg mark. You've probably been demanding more of your body over the Christmas period and basically the adrenals aren't yet able to get up to speed to cope. Our adrenals make around 7.5mgs of natural steroid when well, but they have been suppressed by the artificial steroids, so if we demand too much of our bodies at this stage, we have a shortfall. You can either try riding it out for a week or two to see if the symptoms improve, or increase back up for a couple of weeks. Take care.
Thanks for quick reply. I think I will try and stick at 5.5mg - as you say in a couple of weeks I may feel ok again. Today not feeling quite so tired so maybe I am adjusting...........?
Bet your idea of a quiet Christmas and PMR's are a bit different! Even the effort of having extra people in the house is a strain I find. And the weather in the UK has been a bit foul - and rheumatism does not react well to damp and windy weather.
Some doctors like to see their patients stay on 5mg for several months, even anything from 6 to 9 months, before continuing the reduction. Some think this allows the adrenal glands to catch up and it does seem to make the next stages easier. For some people this sticking point may be a bit higher - after all PMR is different for all of us and so is our reaction to pred.
Try resting for a few days as Celtic suggests and see how you go - but going back up a couple of mg for a week wouldn't be the end of the world and you don't have to stay there long if it makes you feel well again. Nor do you need to crawl down to your current dose. Don't let it get away though - you have done well thus far and it would be a shame to spoil things.
Remember too - you are not reducing to zero to a fixed scheme. You are looking for the lowest dose that deals with your symptoms at the moment. If the underlying autoimmune disorder is still active you won't get further than the dose that combats the inflammation. Maybe that is 6mg for you at the moment - it doesn't mean you won't get lower, it just means "not yet". The dose that controls your symptoms will vary according to your expectations - the more you expect to do, the higher that dose is likely to be. Did you reduce in December? Just as you started getting ready for Christmas? Baking, shopping, greeting visitors? Be honest now!
Thanks for your detailed reply - lots to think about! Yes, I did reduce from 6mg in Dec to 5.5mg - over the 4 weeks though- so it was slow. Yes, it is an extra strain having the house full - even if it was only for a couple of nights. I am sure my family assume I am ok now as I look fine, and I don't mention PMR to them very often as I don't want to dampen the happy atmosphere with talk about my health issues! (guess a lot of us feel the same?) Thanks for the reminders that the pred helps to keep the symptoms under control - I am lucky that I have not had a return of the terrible pains I had initially - now I get a sore feeling and a tenderness in my shoulders and arms that warns me to go slowly. The last few days I have made sure I have rested for a couple of hours in the afternoons - literally reading and nothing else; feeling better than I was straight after Xmas so maybe I have adjusted
Hi Suzieh, me, also. Today I felt very tired, no physical reason for it, overdoing anything, etc. It seemed more like the disease than the exhaustion from the adrenals. I realized I missed my appointment last Wednesday for the methatextrate shot and will tomorrow too. I will call my rheumatologist to reschedule. So I haven't had methatextrate for almost two weeks. I took an extra medrol and felt ok. will not do that tomorrow. Possibly the methatextrate is helping the disease itself.
I can tell the difference, I think between tiredness from the disease and the Cushingoid situation. With the Cushing's I am exhausted, as if I had run 5 miles, just drained. It's a slow time for adrenals to begin to work again and you have to be careful.
With the disease, it's a general sense of tiredness, a knowledge that I can't do everything I want or that it needs to be done and I make adjustments. The medrol helps this.
Christine Northrup in the midwestern U.S., a physician and women's physician has written on Cushing's disease and syndrome. She has written as this might relate to too much stress. But we can use the advice for the adrenals not working well due to too much prednisone, also, I believe. It is really well written and good advice. will try and find the link and post it. very helpful. She has gone through menopause and writes on that, also, as a time of renewal. Her books are very good.
I hope you feel better Suzieh. It could be either, it would seem to me. Looking forwards to when this isn't so much of an issue. I wish you well and more energy.
all my best, Happy New Year and Happy New Year to everyone on the blog
Whittlesey NYC U.S.
This link deals a little with adrenal problems, but not specifically from the use of prednisone for PMR or GCA. Some good advice, however.
Her work is good and many of her solutions are very thoughtful, possibly dealing more with the issue, than the physician, on some issues. Believe her advice on the adrenals in her post is very good.
only a blood test will show problems. My GP has given me amatriptilene they come in 10 and 25. I used to take 10, now to make sure I sleep better, early evening I take 2 x 25 as suggested by GP. This works. Lack of sleep can make you feel the way you do?
Thank you Suzieh for raising this and PMRpro for summing up how I feel -last days
I had reduced to 14 mg just before ChristM.But feeling off colour took some advice from
PMRauk and increased to 15mg to cruise thro the celebrations.Yes ,I had the warmth of my family 8 around me but did not reckon with a mon to fri POWERcut.No heating,no fireplace
24 tea candles,torches and a camping stone from a kind neighbour-he went away. So we had hot drinks and porridge,with main meals out.but the cold really got into the body and some stress-which I did not feel at the time.At a pretty low ebb at the moment.This is when you realize the need of the adrenals.Warmth back in the house now so taking it easy. working thro it and thinking of you all worse of than me and world real refugees and
wish you all the Best in the NEW YEAR ,together. JOhn
Sorry to hear about all your power cuts etc - sounds like you had good neighbours; even so not what you need with PMR. At least we all have this site to ask for help from....... replies and chat from others always makes me feel better and makes me realise there are others always others worse off, and also many people understanding how you feel. Hope the New Year brings good health and happiness to you
Hi fellow sufferers - I would like to wish every one of you a Healthy and Happy New Year - the emphasis on Healthy. Reading this forum has taught me so much - including courage and love of genuine people who really understand what we are all going through. Your advice and honesty have helped me so much, and I don't think without this forum that I would be coping as well as I am. I remember reading that a fellow sufferer of this debilitating disease wrote that they felt as if they were in a dark tunnel and could not find their way out. It helped so much to know that this was exactly how I felt as it is such a roller coater ride. You have all taught me so much and for that I would like to thank each and every one of you from the bottom of my heart. You have given me hope and the courage to keep telling myself that I will beat this, I am on 19mg steroids now for GCA and PMR, tapering 1/2 mg every 2 weeks. (I seem to have had every side affect going from the steroids),and still have. Maybe they are so frequent because of the many other medication that I take (shake me and I most definitely would rattle) One day we will all look back and this nightmare will be over and I know I will remember the amazing folk that were out there giving such wonderful encouragement, support and love.. Thank you all - May 2014 be truly Healthy and Happy - Big Hugs to you all - LIN
Hi suzieh,
You're right in the middle of the danger zone now - yes you could try 6mg. It's amazing what half a mg can do on the low doses.
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