First aware of the start of PMR in Autumn 2020, but with Covid restrictions and NHS delays, not officially diagnosed until summer 2021. Did not start on Pred until March 2022 at 15 mgs and have been gradually tapering down for months. Like many sufferers , I struggle when I get to approx 7mgs (the typical adrenal crossroads) and have had a couple of yo- yo increases to cope with flares.
But since finding this excellent forum and being able to share what I have learnt about Adrenals with a different GP, I am now going very very slowly with tapering, with her approval. Down to 6.5 mgs, but still not on top of the aches and in last few months have suffered with awful uncomfortable body sweats, made worse by this very warm, humid summer.( At 71 years I am way past hot flushes!)
Very recent bereavement, plus some family stressors, and I feel like I'm going backwards! Have hit a wall of fatigue again, plus low mood, as well as the ongoing lethargy and aches. Am I right in thinking that it's better for me in the long run to persevere with dead slow tapering and try to reawaken my adrenals. I am having steroid side effects like raised blood pressure and blurred vision, so want to persevere in reducing my dose sensibly.
Any thoughts about the body sweats please, friends? And am I right in holding at 6.5 mgs for another month or so until my stress levels reduce? Thanks for your help.
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LeonardCohen
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You could stick at current dose for longer - that will give the adrenals a chance to catch up….
But would say that following recent bereavement and the family stress you mention might also mean your current dose is just about on the borderline to control your illness - and for some a sign of an imminent flare can be sweating, so just be sure that is not happening again. If it is, you need to address that.
Thanks very much DL. As always, a prompt and sensible response from you. I'm sure you're right about sticking at current dose of 6.5mgs and trying to ride the storm of my recent stress, to see if I can get back on track. I will stay on this dose and give myself a month to see if the sweats develop into a flare. feeling
It’s a conundrum for sure. I found the area between 8and 5 difficult, particularly 7.5-6mg. I felt fluey achey and couldn’t get up in the mornings and sweats were part of it, especially in warm humid weather. It wasn’t menopause in my early fifties because that had been surgically induced over 10 years previously. I had a hunch that the dose level was too high for my adrenal glands to get the picture and too low to deal with living. I felt I needed to keep reducing, at this point 0.5mg every 6-8 weeks, and ride it out until my adrenal glands had better feedback. My Endocrinologist, when I finally got to see one at about 4mg, agreed with my assumptions. They were of the opinion I should continue to reduce to keep the memos getting to Adrenal HQ but at a speed I refused because I was already feeling bad enough. By the time I got lower my drops were over 8-14 weeks. In order to get through a day, I had to pare down my life to what felt like an existence for months. It didn’t help that I was carer to my horrible father-in-law who was live-in at the time. At 5mg I had some light on the horizon and at 4mg I definitely had some good days, relatively speaking. That’s when I had my first Synacthen test.
That’s all well and good, but I didn’t have PMR and my GCA felt in remission. In your case, that adds uncertainty. Sweats could be adrenals in this no man’s land or it could herald that your PMR inflammation it not quite being held by the current dose. Ditto for the aches, though adrenal aches were nondescript in nature and location. You also have a lot on your plate so extra demands on your cortisol reserves. If it is possible to really try to do very little and not stress all day for a week or two it might be worth an experiment to see if you get any improvement. If your life issues are too much to do that, it may be you need to settle for a bit higher to ride it out to an extent you can live a bit better with the upset. It may just be that life events, the weather, adrenal challenges etc are just asking too much for a fair experiment and you go back to the science lab another day and take a more comfortable dose for a while. Then try again and if possible with a calculated plan to make life easier by cutting out hot trips to shops, visits etc.
Thanks so much SnazzyD for your empathy and understanding of my situation. I think you're right in suggesting these recent problems are a cumulation of taking too much on my shoulders while I'm still not quite on top of the current inflammation. This complex illness and the whole issue of balancing the adrenals, is not explained at all by GPs, but brings such a roller coaster of pain, fatigue and emotions while we try to make the best of our situations and taper down. It really is such a help to know I have fellow sufferers who REALLY understand. Some people who haven't gone through this, make me feel I've failed in some way, and am not trying enough to self help. Feel really weary and down today, because I'd been having a fairly good spell during a relaxing holiday in the sunshine in the Cotswolds. Fingers crossed, this will pass once more, once the adrenals wake up! Thanks
If I get sweats like that it has always been a sign I am hovering on the edge of a flare.
And never underestimate the stress of a bereavement and all that goes with it. It isn't a good idea to fight it. If the BP is troubling - better to take a low dose of something to calm that down and hang fire on the taper until you are ready.
Thank you for your understanding about the depths of stress and sadness over my recent bereavement. I am now the oldest of the next generation, and have been feeling a burden of responsibility to hold everyone together. Maybe trying to expect my cortisol levels to cope with it all, has pushed me to the edge of a flare. Make sense. I am going to rest and take care of myself for a change, and my lovely hubby will make sure I do!
By the way, my GP is monitoring my BP carefully and I am on additional meds now. Thanks for your concern.
It sounds very much as if your adrenals are complaining about being dragged back from their holiday. I actually got sweats again when I got to 6mg. I had them when I first started steroids but as I reduced they stopped. As PMRPro says it could be you are on the edge of a flare of course.
Thanks Piglette. I really appreciate your advice - spoken from another sufferer who has gone through these awful sweats. Today I have gone from bad to worse, chronic and overwhelming fatigue with multiple aches, so I think you are all right in thinking I am on the edge of a flare. I'm going to give into it and rest, until the storm passes. Bless you all
I went through really bad night sweats a few months ago.Drs didn't say anything about my prednisolone reducing.i was on 5mg.I had something else very bad happen at the same time.The sweats lasted 2 to 3 months.Awful.Now I'm having problems with sore tendons..I hope it won't last too long.Prednisolone seems to make whatever weakness we have flare up.
As the oldest of six children, I carried intense feelings of responsibility for my siblings’ well/being into advanced middle age. You may be the patriarch but you are not responsible for grown family members. Give yourself a psychological break. Not only is PMR affected by stress. Weight gain, blood pressure, goodness knows what else is.
Thank you for your encouragement Merryfield. Same as me, one of 6 children. I was second oldest, but my oldest sister had rheumatoid arthritis all her adult life, until she died prematurely aged 58. So I always felt responsibility for her, and all the others, especially after both our parents died relatively early (69 and 72) I think you have summed it up....with recent events and my PMR flares etc, I absolutely agree with you.....it's time to give myself a psychological break and find time for me and my recovery. Thanks
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