PMR effects

If you have just PMR with no other health issues and are on a dose of Pred that has removed pain, should you expect to feel no other issues? Although I am at a low dose that allows me to function I still experience bouts of extreme tiredness, odd heart rhythm and hot sweats. Are these effects of the disease that steroids do not help or does it mean that my steroid dose is too low?

[DorsetLady PMRGCAuk volunteer]

It could just be adrenals struggling.....I found that I had random bouts of fatigue for no apparent reason between the levels of 6mg down to 3mg.

Not sure what dose you’re on now, but might be worth asking doctor for a Synacthen test - checks if adrenals are capable of working, but not that they actually are - but it’s a start.

[Hidden in reply to DorsetLady]

I’m on 3mg. I will discuss your suggestion next time I speak with my rheumatologist. Thank you x

[PMRpro Ambassador]

Fatigue is part of all autoimmune disease, arrythmias and sweats are failsafe signs for me that I am verging on a flare. I'm assuming the arrythmia is not something you had at higher doses of pred?

[Hidden in reply to PMRpro]

My rheumatologist is aware and I’ve had checks but all deemed ok. 3mg seems to be my sweet point and the other niggles have been there at higher doses too.

[piglette]

If you are at a low dose ie under 7mg, I would certainly think it is your adrenal glands causing the fatigue.

[Hidden in reply to piglette]

You may well be right! 😀

[HeronNS]

Probably adrenals, particularly fatigue, however I found some of those symptoms I had actually vanished overnight when I discovered I needed more salt and started taking more salt. You can easily figure out if this might be an issue for you, I suspect it's rare as most people actually get too much salt. First off, taste a little salt - a few grains on your fingertip. If it tastes yucky and you want no more, you need go no further. If, on the other hand, it tastes quite good, almost sweet, and you want to have more, then you are almost certainly low in sodium. Keep taking little bits of salt this way until you don't want any more. I did this, the first evening I never reached that stage, the second evening I suddenly went "yuck!" This will, please note, not work with salty food, it must be plain salt. The other thing you can do, if you think it probably is low sodium, is check your diet. I used a calculator I found on line, there seem to be several and I can't remember which one it was, to calculate what your sodium intake is on an average day. I tried to overestimate, double checked when package information was available for accuracy, and even doing this I was apparently only taking in about 900 mg a day, when 2000 is considered a reasonable amount and most people get more.

[Hidden in reply to HeronNS]

How interesting! I will try this. Thank you x

[HeronNS in reply to Hidden]

Since then, although I never mentioned this adventure to my doctor, my sodium level has been checked a couple of times as part of routine bloodwork and it has always been fine. I wish I knew what it had been before but I never remember the sodium box having been checked before.

[Kath567 in reply to HeronNS]

That’s a good reminder. I border on low blood pressure and cook almost everything from scratch so no added salt. I will give it a try, thank you. Fatigue is a daily problem and poor sleep quality, underlying health issues, lack of exercise in a pandemic and frigid winter temperatures don’t help.

[HeronNS in reply to Kath567]

Just so you know, one of the things extra salt helped (counterintuitively, but it is something which happens) was my previously low blood pressure had started to creep up, and extra salt brought it down again! I must check it more often though.

[PMRpro Ambassador in reply to HeronNS]

Thought you'd be interested in this:healthline.com/nutrition/6-...

Mixed/disputed opinions but you could wonder if there is no smoke without fire. Is it yet another case of uninteneded consequences?

[HeronNS in reply to PMRpro]

Thanks. Bottom line - more research needed. I've heard it said the dangerous white crystal in our food isn't so much salt as sugar, but there are conflicting schools of thought regarding that also. Moderation in all things!

[PMRpro Ambassador in reply to HeronNS]

Moderation being the key - I don't think there is much evidence that sugar isn't bad, especially in the quantities eaten these days!

[HeronNS in reply to PMRpro]

Yet we crave sweet things and people living in pre-industrial conditions risk their lives to get honey! I must go have some breakfast. Lately I've been waking up feeling somewht unwell in a vague non-specific sort of way and having a really hard time getting going. Maybe I need a jolt of sugar!

[Highlandtiger in reply to HeronNS]

I've been reading your posts about salt. I’ve been stuck at 5mg for a year now which the GP says ‘isn’t disastrous'. I don’t eat much at all by way of processed foods and don’t salt the food I make very much. I’m just getting back on track after a flare which I assumed was caused by a combination of a bump on the head after a fall (massive egg size bruise on the forehead), a somewhat stressful situation at work and someone crashing into my car on ice which then took 4 weeks to get fixed, it was so badly damaged. I increased my Pred for a week and have returned to 5mg again now. However I have noticed that I have been craving salt for the last 6 weeks or so. This is very unusual for me. When you discovered that you wanted salt in the taste test you did, had you been craving it at all beforehand?

[HeronNS in reply to Highlandtiger]

No it hadn't crossed my mind. It was a chance meeting, and without that meeting I probably still wouldn't know and would still be suffering morning headaches and cold aching legs at night and increasing blood pressure, etc.....I'd eaten low salt most of my adult life. We took the salt shaker off the table early in our marriage and also reduced salt in recipes. But we did eat a certain amount of prepared "convenience" foods which I stopped consuming when I started pred, and that may have made all the difference. You know, boxed pizza, bottled sauce, tinned soups, that kind of thing. Not really a junk food addict but it may have been enough, expecially in days before companies started reducing salt in their products.

I don't think this is true in my case, so far thyroid okay, but I understand that salt is iodized because the thyroid needs iodine, and maybe a shortage of iodized salt can also cause issues?

[Highlandtiger in reply to HeronNS]

Thanks for replying. It’s such a confounding condition isn’t it..? We’re all looking for answers!

[HeronNS in reply to Highlandtiger]

Well, salt or no salt, lately I've been having a devil of a time getting up in the morning. It's almost worse than before diagnosis when I was ever so much younger! I suppose it's a combination of the PMR flare, which shows no signs of subsiding, and poor physical condition owing to lack of exercise (pandemic and bad knee, and now treacherous sidewalks because one big snowstorm after a non-winter appears to have defeated the snow removal crews). At any rate I can hardly move in the morning, it's like my body doesn't remember how to move fast, or even at a normal speed. I hate it.

[PMRpro Ambassador in reply to HeronNS]

You are fairly close to the sea - it is people who live inland who have the most lack of iodine. You should be fairly OK.

For the last couple of weeks I am ready to go into hibernation and not get up in the mornings! I get up late anyway but at present I am not ready at 9am!!!!

[HeronNS in reply to PMRpro]

I'v e always bought iodised salt. Just one of those things, like Vitamin D in our milk. ign.org/cm_data/idd_feb13_c...

[PMRpro Ambassador in reply to HeronNS]

No vit D in our milk ...

[HeronNS in reply to PMRpro]

I think I knew that. Without D in our dairy the incidence of Vitamin D deficiency in our population would be quite high I think. When I came to Canada the schoolchildren were lined up every morning and given a spoonful of cod liver oil! I escaped this, excused by my physician father, as he made sure I got some other supplement. Possibly the other children were actually served better.

[Arflane97G]

I would have bouts of extreme fatigue is the first week or so after a taper and when on steroids I noticed my temperature would shoot up after eating!

[Hidden in reply to Arflane97G]

Thank you

[HeronNS in reply to Arflane97G]

That's very interesting. Do you have any idea why?

[PMRpro Ambassador in reply to HeronNS]

It is a normal response - rising about 0.2 degrees C about 20-30 mins after eating because the metabolic rate increases. It is damped in obese individuals.

[HeronNS in reply to PMRpro]

How would one even notice that?! Other than warming up comfortably if one had been chilly before the meal? .2 degrees doesn't seem like "shooting up" however, as Arflane describes it.

[Arflane97G in reply to HeronNS]

No idea but has stopped now I am off the pred 😊

[PMRpro Ambassador in reply to Arflane97G]

How much did it go up?

[Viv54]

Hi , these sound like the side affects of the drug , i have had these plus a lot more. Some people seem more prone than others . Are you tapering ? I would say the worst was the sweating ! Iwas on 45mgs,im now stuck on 5mgs atm , but i can tell you the lower the dose the less the side affects. Good luck ,get it checked out . It will pass !

[Hidden in reply to Viv54]

Thank you. I am on 3mg for the next three months having tapered up and down for nearly three years. I am functioning ok at this level apart from what I mentioned in my post but any lower brings more problems. Rheumatologist assures me this level is pretty safe! X

[Viv54 in reply to Hidden]

Yes, it certainly does ! I'm back up to 5mgs I found it very hard at 4/4 half ! Aches all over , I've learnt my lesson , slowly is the way ! 👍

[HeronNS in reply to Hidden]

I think 3 mg is a very safe level; good for your rheumatologist. My doctor told me she was "happy" with me at 3 and even quite recently encouraged me to go up to there rather than staying at 1 or 2. Wish I'd listened to her because apparently I was sickening for a major flare, shown first in my blood tests.

[Raven1955]

I was at 3mg last summer but had to bump up due to other reasons. At that time my rheumy told me that I could stay at 3mg forever and he wouldn't have any problem with me staying at that level. He said at that level he feels there's no appreciable side effects, even if I stayed on it forever. I should clarify that this regarded PMR, not GCA.

[Hidden in reply to Raven1955]

Mine said the same! X

[Telian in reply to Raven1955]

I stayed on 3mg for 17 months as Rheumie said okay to stay there forever. I felt normal on that dose. I then had a flare out of nowhere. Second time around tapering hasn’t been fun. Currently stuck on 8mg. I’m 7 years in March GCA/PMR.

[Alebeau]

Just want to thank everyone for their input on this topic. I am on year 3 and at 9 mg prednisone and am reducing ever so slow. I do have days with aches when I do a reduction but stay the course and if I evens out over the next month I continue with the .5 mg reduction plan . I also monitor my ESR and CRP monthly and so far they have been stable with the slow reduction. I am assuming that my adrenal gland has to slowly kick in at each reduction point to compensate. I have no other health issues like yourself and I am a 72 year old male.

Good luck to you and everyone else struggling with this crazy PMR.

[Hidden in reply to Alebeau]

Good luck to you too x

[Hankb]

Hi Gibgal. I'm in a similar position to you. I've been on pred for 3 months since being diagnosed with PMR and feeling tired and fatigued most days. Previously I was fairly active but I now find that I am so lethargic that I cannot be bothered to hardly anything although I do try to do some light exercising. I'm sorry I cannot offer you any advice but just want you to know you are not alone with these side effects of the medication.

[Hidden in reply to Hankb]

Thank you x

[PMRpro Ambassador in reply to Hankb]

It may not be the medication - the lethargy and fatigue is part of most autoimmune illness.

[Hankb in reply to PMRpro]

Thank you for your reply. I didn't realise fatigue was part of the illness.