Flare up PMR extreme fatigue : I have had PMR for... - PMRGCAuk

PMRGCAuk

14,084 members25,627 posts

Flare up PMR extreme fatigue

Italian321 profile image

I have had PMR for seven yrs with several flareups during that time but in between good control I’ve been on 1.5 mg of prednisone for the last 12 months and I thought it was under control having had a lot of stress and being unwell last three months and now have extreme fatigue so pretty sure it’s the PMR. Does anyone else get the fatigue so bad that they have to lie on the bed and The thought of going downstairs seems like climbing Mount Everest? I went up to 5 mg for five days and 7.5 mg five days but today it’s hit me again plus extreme hot and cold flushes one minute on fire and the next minute freezing. If anyone has anything similar it would be fantastic to hear. thank you so much. Everybody’s messages are such great support. warm wishes to everyone suffering today

50 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Have you considered it might be your adrenals as much as a relapse of PMR?

You will probably need to get a bit lower before the doctors will refer you for a Synacthen test - but definitely worth requesting. Test doesn’t actually tell you if the glands are working, just if they are capable of doing so.

Gary1310 profile image
Gary1310 in reply to DorsetLady

Just had the Synacthen Test..got the result last Wed. It was 54. I thought that meant my Adrenals kicked in. (Nov 1 I tapered to 3 mg for the month).....I had it done at my local hospital....just one blood test which was sent to Mayo Clinic.

in reply to Gary1310

No. Just that they are capable of working. Some take up to 12mths after pred to kick In.

Gary1310 profile image
Gary1310 in reply to

Thank you. I have a lot to learn.

in reply to Gary1310

I learn something new about my body all the time!

Pollyanna16 profile image
Pollyanna16 in reply to Gary1310

Hi Gary, I had the synacthen test done earlier this year & it was 112 before & got up to just over 200 after the infusion. Was told by my endocrinologist that I will need to take no lower than 3.5mg possibly forever. Are you seeing a rheumatologist or endo at all?

Gary1310 profile image
Gary1310 in reply to Pollyanna16

Thanks, yes, I see a Rheumatologist but have not seen an Endocrinologist for a number of years, like10 yrs. I plan to get an appointment in the Spring, after I am done with my taper. I have had Thyroid and Adrenal benign tumors . Half of my Thyroid has been surgically removed. I just had the Synacthen test and it was 54. Not sure what that means.

Pollyanna16 profile image
Pollyanna16 in reply to Gary1310

Assuming your GP is aware of this? The figure seems very low & they may not want you to taper anymore. Perhaps the experts here could comment? The adrenals need to kick in but at that level they may not. Are you feeling very fatigued at present? Plus sorry I was half asleep this morning! Pre test my levels were 61, then the day of the test 100 after the test just over 200. Apparently they should read between 400-500.

Gary1310 profile image
Gary1310 in reply to Pollyanna16

OK....I am in my office reading, (please scratch 54, not sure where I read that)......my report reads :ADRENOCOTROPIC HORMONE, P , MAYO ACTH

Value. 8.2

Reference value

7.2-63

Test performed atMayo Clinic Laboratories,Rochester, Mn..

..........just found where the 54 came from, it is my Vit D level, which is high....so GP told me to reduce amount.

Fatigue has been my main problem.....I rest a lot, nap and bed at 9 pm till 5am. Need to pace myself...limit chores to two per day.

PMRpro profile image
PMRproAmbassador in reply to Gary1310

I don't think that is the result of an ACTH stimulation test - it is a basal level. In the synacthen test they take a sample for the baseline at 9am and give an injection. A second blood sample is taken shortly afterwards to see what level has been achieved - and that is the significant figure.

PMRpro profile image
PMRproAmbassador in reply to Gary1310

The absolute figure is less important than the change - you always get 2 levels at least in a synacthen test, the baseline cortisol and the level it gets to after the injection to stimulate production.

The baseline level may be low because you are still on pred but the amount it goes up shows whether the adrenals are CAPABLE of producing cortisol. If they are, then a very slow reduction, sometimes using hydrocortisone instead of pred, may achieve a return of normal function.

That means that for safety you need a test before you are entirely off pred - if they don't/can't produce cortisol then you could become extremely ill.

Gary1310 profile image
Gary1310 in reply to PMRpro

Thank You...I will see an Endocrinologist in Spring and will request the Synacthen Test then. Appreciate your information. It is very complicated!

PMRpro profile image
PMRproAmbassador in reply to Gary1310

Do you expect to still be on at least 3mg pred at that stage? That's when you need the test.

Gary1310 profile image
Gary1310 in reply to PMRpro

I am on 3 mg for month of Nov. I am tapering 1. mg per month. I am thinking of going to the beach for 4 months to get away from ice and snow of Michigan winters, leaving end of November. I will be able to get off Prednisone on Feb 1. I am thinking that I may stay on 1mg until I drive home April 1.

PMRpro profile image
PMRproAmbassador in reply to Gary1310

Just be aware if you get to that level that in a stress situation your adrenal function may not be up to coping. If you feel ill at any time make sure your healthcare team knows you have been a long term steroid patient.

Gary1310 profile image
Gary1310 in reply to PMRpro

Thank you...I plan to just rest and recuperate.

PMRpro profile image
PMRproAmbassador in reply to Gary1310

Sounds like a plan!

Pollyanna16 profile image
Pollyanna16 in reply to PMRpro

Totally agree PMRpro. You can come down by .5mg rather than 1 each time. Slow is best. Good luck.

Thank you so much for any advice. I’m not sure if I left a message before cutting a long story short, I’ve got the test hopefully on Wednesday. Any advice before I go would be fantastic I didn’t see my usual rheumatologist this chap wasn’t experienced and was so negative about everything I came out and burst into tears. Sorry about that any information would be wonderful warm wishes to everybody. Thank you for all the wonderful information you have always left I followed you for years

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Italian321

Do you mean the Synacthen test? If so, there is really any specific advice - although this may give you some idea of what to expect -

healthline.com/health/acth-...

Hi, my doctor told me last week I don’t need the Synacthen test yet 😭😭 I have got down to 4.5mg this week and just had an almighty flare up of my PMR so trying 5 mg today and see how I go. If no better by weekend I am upping again, I am feeling so low again as got no energy to do anything and keep breaking down in tears again. I just wish some scientists could invent something for us all and get rid of all this, think it’s 7 years in March or 6 years, my brain is not working anymore. Hope you are feeling well x

PMRpro profile image
PMRproAmbassador in reply to Margaret1951

If you have a major flare then I really doubt that just going to 5mg will be enough.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Margaret1951

Many don’t refer for test until you are at 3mg or thereabouts.

As PMRpro says you’ll need to go higher than 5mg to get things back under control. Maybe a few days at 10mg - then drop back down to around 6mg - nog 4.5mg as that’s not enough!

Me - good at the moment thanks.

Hope you soon get things in order 😇

I will do that thank you as can’t keep taking pain killers as that’s not the answer. Thank you x

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Margaret1951

Acid test -

If painkillers don’t do anything - then it’s PMR!

They don’t take it off but I tell my brain they do, wishful thinking on my part x

Can you have this test if your pred is low but still on Actemra?

PMRpro profile image
PMRproAmbassador in reply to Blackcatlover

Yes - but the pred needs to be down to about 3mg for a meaningful result.

Margaret1951 profile image
Margaret1951 in reply to PMRpro

Thank you, and looked back on my pred card and it is 7 years in March I have had these 🤬🤬

Blackcatlover profile image
Blackcatlover in reply to PMRpro

Thank you. Trying to get to three! Going slowly so it will be awhile.

PMRpro profile image
PMRproAmbassador

Sounds very PMR-ish to me. Though those sweats/chills sound extreme - do you have any other symptoms of an infection?

Italian321 profile image
Italian321 in reply to PMRpro

Thank you so much. Had horrendous migraine in the night. Gets confusing as prednisolone Has always given mr cold sweats and the polymyalgia gave me sweats for about nine months before I was diagnosed in 2011. I realise as it was half term and it was so nice to have some energy first time for months I over did it with my 12-year-old granddaughter and burnt myself out. I do keep a diary which is the best thing for me I’ve had episodes like this probably five times over the last eight years. Anyway thank you so much for your advice I have had all sorts of tests doctor very good. I’m going to go blood tests again on Monday and see results. also going to check the thyroid. It’s a full-time job isn’t it the health as we get older. Excuse any mistakes I dictate my messages now to save my arm. Good wishes to absolutely everybody thank you so much.

PMRpro profile image
PMRproAmbassador in reply to Italian321

That all accounts for a lot...

Hello,

I’m so sorry to hear how you’re feeling, as the others say it sounds as if there’s an element of adrenal fatigue.

However, sometimes it’s easy to overlook that fact there could be something else going on?

I think you need a review with your GP to consider the appropriate dose & sit there awhile before you start to reduce even more slowly.......

The overwhelming fatigue is just so awful & l know exactly how you feel.

Take it easy today & go to see your GP as soon as possible. Keep us in the loop as to how you get on.

Kind Regards

MrsN

Hi Italian321, do consider if you have any other symptoms. Do you have a low grade temperature when you feel warm? Do you have dry cough or hoarseness when fatigued? Have they checked your inflammatory markers? After 6 years of PMR controlled between 2-4 mg Pred I had similar symptoms and we determined it was GCA (large vessel variety) and my markers were off the scale.

Hope you get answers soon, the “kick butt” fatigue is awful!

Italian321 profile image
Italian321 in reply to PMR2011

Thank you so much for the reply and best wishes to everybody all the information is so useful and makes us realise we are not alone. Well the hot and cold situation I think turned out to be rhinitis. The fatigue was still bad so I increased the prednisolone. I got to the rheumatologist this morning. Unfortunately I couldn’t see my usual lovely lady and saw someone who didn’t seem to be experienced at all. Not understanding at all.But the positive was I’m going to be tested for the adrenaline situation next week, hopefully. He didn’t expect me to have any other conditions at all so when I mentioned the migraines , TMJ, stomach problems et cetera he kept scratching his head. Also he said I had CTS which I now realise is carpal tunnel syndrome. All Markers from the blood tests were normal. So he said it can’t be Polymyalgia. .Anyway feel a bit better now I’ve got home and seeing the positive. Sorry this is a bit of a muddle, dictating it to save using my shoulder. If anyone has time I would be so grateful if they could tell me their experience of having the test for adrenaline. Warm wishes to everyone.

PMRpro profile image
PMRproAmbassador in reply to Italian321

Oh dear - 1 in 5 patients has markers in normal range - and you are on pred so they SHOULD be normal! And CTS is often part of PMR - so it doesn't rule out PMR...

There is to be a GP education move - maybe they need to include rheumies too!

Italian321 profile image
Italian321 in reply to PMRpro

Thank you so much I knew I had aches and pains but thought I wasn’t doing too bad for 73 then came out of the rheumatologist appointment and burst into tears.It’s so difficult isn’t it knowing what to do I’m particularly proactive on everything but sometimes think it makes everything worse. Thank you so much sending lots and lots of warm wishes to everybody.

PMRpro profile image
PMRproAmbassador in reply to Italian321

Is your GP more sensible? I do hope so!

I have severe fatigue. Its been horrendous. You are not alone, its difficult to know what end of you is up sometimes. Any new symptoms are probably best checked out with GP, just to be sure. You might have a virus. Best wishes.

Have you considered it may be side effects from something else you are taking?

I too have had the extreme fatigue and the hot and cold cycles recently, however my husband has the same and he does not have pmr, he has a head cold and flu to go with it, so I think I have the same. Being on prednisone I find somewhat masks other things so I am never sure if it is a flareup or something else entirely. I hope you get feeling better soon.

I am newly diagnosed with PMR...started 15mg pred on 28th Feb, and have been reduced down and currently on 5mg, but really struggling. I am concerned I've been reduced by too much, too soon. I am in a lot of pain (almost as bad as when I was referred), but the fatigue, poor sleep and temperature changes are unbelievable. I am quite grateful for lockdown because I honestly don't think I could manage to go to work because of the fatigue. I have been extremely fortunate with my health until this PMR .... having worked full time for 50 years, I have had a total of 6months of sick in all that time (and 4 of those months were due to work related injuries - sustained while working in Residential childcare with extremely traumatised/abused children) but now, I'm seriously wondering if I will feel well enough to go back post-lockdown. I have also found the pred affects my mental health and mood (those improved somewhat once on 10mg instead of 15). Although I'm sorry for you, I am also grateful to you, as I know I'm not the only one! Take care, and I hope you improve

PMRpro profile image
PMRproAmbassador in reply to Vanlose

Hi and welcome - this is quite an old thread and few people will see your comment. That is just because of the way the forum works. I suggest you post it as a new thread of your own - and I'm sure you will get a lot of support.

But you are quite right - to have reduced you from 15 to 5mg between the beginning of March and now is ridiculous. The average time to 5mg is 18 MONTHS, not weeks! The symptoms of PMR are only managed properly when you take enough pred - and even being a mg or two below what you need eventually results in a return to the same state as you were at diagnosis. No doubt your doctor thinks he is protecting you from the risk of Covid-19 when on pred but instead he is probably putting you at risk because of the underlying vasculitis condition. And there does appear to be a positive role for pred in managing Covid!

Standard tapering protocols of all sorts involve remaining at the starting dose for a month before reducing, first to 12.5mg for a month and then to 10mg for varying lengths of time. Then the recommended tapers are all for 1mg per month below 10mg/day. We on the forums are very keen on slow tapering - not just that the steps shouldn't be too big each time but also that they shouldn't be overnight (by that I mean from every day one dose to every day a new lower dose from one day to the next) or too often.

Vanlose profile image
Vanlose in reply to PMRpro

Thank you PMRpro. I've been reduced by 2.5mg each time 🤔. I really don't want to go above 10mg if I can help it, as my mental health was significantly affected while on 15mg and 12.5 mg. I have informed my Rheumatologist of this.

Please take care and stay well

Thanks again,

Van

PMRpro profile image
PMRproAmbassador in reply to Vanlose

Then go back to 10mg - hopefully that is enough to manage the inflammation and then reduce again slowly. Not more than 1mg at a time. But hardly anyone would manage on 5mg at this stage, you might as well be on none.

Vanlose profile image
Vanlose in reply to PMRpro

I have a telephone appt booked for tomorrow with my GP. Your response, and other posts on here have given me confidence to be more assertive. It is quite difficult as I am still learning about PMR and irts management. Thank you so much

Hi, I was diagnosed with PMR mid-Feb this year and started on 15mg pred. By mid-June had reduced to 5mg, but felt so ill I rang my gp, who increased me back to 10mg for a minimum of 4 weeks, with a reduction of 1mg every 4-6 weeks, but to increase again for 1 week if I felt unwell again. I got down to 9mg and had telephone consult with Rheumatologist, who wanted me to reduce further. We have agreed 9/8 alternate days, and I have just reduced to 8.5 daily. I have now been signed off work by the GP with 'Chronic Fatigue Syndrome - pending further Rheumatology investigation '. The fatigue is dreadful. I went for coffee with my daughter, she collected me in her car, we walked across the road to the cafe, sat outside with our drinks for an hour, then drove to a local small shop before she took me back home. I was wiped out, and went to bed. I couldn't get up until lunchtime the following day. The simplest tasks (e.g. prepping and cooking a meal, putting the laundry out, hoovering a room) result in the need for a rest that often becomes a sleep. I can't get up or mobile in time to go work in the mornings, and regularly just need a snooze during the day. This is not normal for me! And it is beyond tiredness or exhaustion. I sincerely hope you feel improvement soon, but know that you are not alone. Take care,

Van....btw, in 50 years of working full time, I have had less than a total of 12 months sick leave, and most of that was due to work-related injuries sustained from assaults by young people.

PMRpro profile image
PMRproAmbassador in reply to Vanlose

How did you feel at 10mg?

Vanlose profile image
Vanlose in reply to PMRpro

Hi PMRpro. I felt more in control on 10mg. I feel happier that Rheumatologist is listening and giving me credit for knowing my own body and has taken the pressure off to reduce Pred rapidly. He also ordered more blood tests as he thinks I'm symptomatic of RA or Lupus.

Great Forum - helpful, reassuring and supportive. Thank you

You may also like...