PMR disappeared overnight

[Pinkpepper]

I was diagnosed with PMR 15 months ago and put on 30mg and tapered weekly down to 10mg. Last December I had a flu jab and developed a nasty cough and cold but overnight my PMR has gone! I have continued taking 3mg of prednisone day but a week ago dropped down to 2.5 and have since experienced hot flushes and night sweats. Thought I had dropped down too much by 0.5mg and reverted to 3mg but still getting flushes. Do you think it could be that I have too much cortisol in my body as the PMR symptoms have disappeared since December and can this causes such body overheating? Grateful for any advice.

[SheffieldJane]

How unusual, early, and very lucky, if this is indeed what has happened. It might be a good idea to request a Synacthen Test ( Adrenal Function) just to ensure that you haven’t come down too fast for your own Adrenal glands to start working at full capacity.

[Pinkpepper in reply to SheffieldJane]

I’ve spoken to the doc and have a blood test next Wednesday, thanks for your advice.

[Maisie1958]

Hello Pinkpepper . I don’t want to be a misery but in the months before I started on prednisolone for PMR I would wake in the early hours in a sweaty mess and get random hot flushes during the day. Stopped when I started treatment. Even now if my dose is a bit low they restart. Everyone seems to have different experiences with this odd disease though and like you I’ve experienced times when my PMR suddenly seems to disappear (only for shortish periods sadly) and I actually feel really “well”

Long may it continue-all the best.

[Pinkpepper in reply to Maisie1958]

Hi Maisie, thanks for your reply. When your flushes started on PMR did you increase the dose and did they disappear?

[Maisie1958 in reply to Pinkpepper]

Hi, if I get flushes now I take it as an early warning my PMR is active so tend to up my Pred dose a small amount for a short time and they go. Please note I’m talking about myself here only! My PMR does seem to wax and wane randomly though-PMRPro has given good advice before about this. Everyone seems to have different responses and it takes time to get sorted. I’ve been on prednisolone for almost 4 years and still learning so please don’t do as I do! It does seem to be trial and error to find what suits you.

It is lovely though when you suddenly feel “normal” or “healthy” isn’t it? I’m feeling quite chirpy at the moment rather than just “not too bad”

Fingers crossed for both of us x

[Maisie1958 in reply to Maisie1958]

PS also don’t try to do too much when you are feeling well-as others have sensibly said your adrenal function needs to get up to speed first x

[Pinkpepper in reply to Maisie1958]

Thanks so much for your advice. My PMR journey seems similar to yours. Can I ask what dosage you take and how much you increase it if you feel a flare up is coming on?

[Maisie1958 in reply to Pinkpepper]

Morning-sending you a PM -let me know if it doesn’t arrive! X

[SnazzyD]

Time will tell. Although we’re talking low numbers here, 0.5mg is still a sizeable chunk of the original dose. I’m on the same drop at the moment and my body is certainly feeling it. It might be the body puts out adrenaline as a stress response that causes swearing, who knows. It may be the sweats could be withdrawal or heralding a flare.

[Pinkpepper in reply to SnazzyD]

Are you still continuing your reduction and riding out the side effects?

[SnazzyD in reply to Pinkpepper]

Yes and no. I follow the DSNS plan loosely. Once I get to 3 new doses a week I go by how I feel generally and what I am doing in life, nothing scientific. Feeling pre flu will not stop me as long as I can rest. If I can’t or feel really rubbish I’ll take a break and go back to the old dose for a day or two. Sometimes it’s dead easy, but some reductions take an extra 2 or 3 weeks. I don’t plough on through if I’m not in good shape or can’t look after myself a bit, family permitting 🙄

[bunnymom in reply to SnazzyD]

That is a very good and easy way to go. I am trying to do the same and not "gallop and force" things along. Only we understand how hard fought each reduction is. I guess that's why I resent the Drs attitude that my dose is never low enough (for him) not me?

[SnazzyD in reply to bunnymom]

I find it irritating when I get the sceptical look when I say I’m trying to balance withdrawal with being able to function in the domestic arena. They really don’t get it.

[bunnymom in reply to SnazzyD]

Nope.

[GOOD_GRIEF in reply to SnazzyD]

Oh, snazzy, how funny...

"...causes swearing...."

[SnazzyD in reply to GOOD_GRIEF]

Me and my typos! 😂😣

[Sandradsn in reply to GOOD_GRIEF]

Another side effect?🤣

[PMRpro Ambassador in reply to GOOD_GRIEF]

Did you never see any of the threads where it has been suggested that PMR causes swearing? Quite a few of us have noticed it ...

[GOOD_GRIEF in reply to PMRpro]

Seems I was born with potty-mouth, but the creativity of the expletive combinations has certainly grown with PMR...

[PMRpro Ambassador in reply to GOOD_GRIEF]

Me too - OH is very prissy about it since he was brought up nicely. But when I have a flare I notice a decided boost in creativity of that sort ...

[Sandradsn]

Just wondering if you are still taking pred how can you tell if pmr has gone?I have also just dropped to 2.5 and feel ok.I'm not sure about your flushes.

[PMRpro Ambassador in reply to Sandradsn]

You can't. The only way to know is to get off pred altogether successfully for an extended period of time.

[Pinkpepper]

Hi, just thought I must be because before then every morning I would wake up with painful shoulders and suddenlay I had no pain, maybe wishful thinking!

[Sandradsn in reply to Pinkpepper]

That's great Pinkpepper😊

[Oxford8 in reply to Pinkpepper]

I am too much of a rookie to have anything sensible to add,but long may your pain free state last Pinkpepper.,🌷🌹

[PMRpro Ambassador]

At 2,5mg I doubt you have too much cortisol - your body won't make more than it needs anyway. Until up to as much as a year after you get off pred altogether your adrenal function can be quite variable - and I'd suspect that is the case now too.

Or the cause of the PMR hasn't gone as far as you think - sweats are a sure sign for me that I have got to too low a dose.

[Oxford8 in reply to PMRpro]

We are very fortunate to have you on here PMRpro. Always sound and considered advice. Thank you.

[PMRpro Ambassador in reply to Oxford8]

Thank you - I do my best, boring though it may often be...

[PMRCanada]

Your post is most interesting and hopeful to me. Twice now, when I’ve gotten a cold while having PMR, any symptoms I’ve had, have seemed to vanish?? Alas, they return when after the cold runs its course. I suspect it has something to do with my immune system directing its efforts to attacking the cold virus instead of my body. Just my guess.

As far as the sweats go, I get them every night after I take my pred dose at 2am, but not sure if they are due to the pred, or the body dumping cytokines in my body around 4 am.....or menopause.

Ah the mysteries of it all. Some we solve through experimentation, others we never do figure out.

So thrilled for you and your symptoms ending. Hope it continues and you can end your pred without any fallout.

[Pinkpepper in reply to PMRCanada]

I thought it really strange too but maybe it’s just wishful thinking and the dose I take masks the early morning shoulder pain.

[yogabonnie]

I see this post was 3 months ago. How are you now????

[Pinkpepper in reply to yogabonnie]

Hi, because of the sweats and flushes one doctor put me up to 10mg but another then said these were due to my HRT and upped the dose to half a1mg tablet. This has improved the flushes and I am now on 8mg and hoping to taper down further. Had the neck pain for a few months but it now seems to be receding so maybe my doctor was correct in saying it was nothing to do with my PMR but probably arthritis or a pulled muscle. Thanks for asking how I am, hope you are well. ATB

[Hidden in reply to Pinkpepper]

Sorry it wasnt a good outcome predwise.

Ok. This may not be a real thing but i do seem to remember reading something about how during a new infection the immune system gets "distracted" from its usual nasty work. I cant find anything on it but for some reason it is in my mind. I will keep searching!

Hope you are successful tapering.🌻

[yogabonnie]

Thanks for the reply. I am sorry you were not able to say FREE from it! But carry on. That is the big lesson from PMR. patience and looking for the silver lining however pale!