Don't know what's happening to me........

[Janann25]

I have tapered very slowly from 40mg Pred , starting May 2017, and am now at 7mg Pred. I wrote recently that my CRP levels are raised but that I don't have the typical PMR symptoms of pain or flu. However, I'm now suffering with constant and profuse sweating plus the dreaded fatigue. I don't know whether this is due to the level of Pred which Im now at or whether this is a sign of a flare. I'd really appreciate some advice.

[DorsetLady PMRGCAuk volunteer]

You are at the level when your own adrenals need to start working again - and my guess is they are a bit slow at doing that. That is probably what is causing the fatigue and probably the sweating.

The only thing you can do, is continue to reduce slowly - and hope that they start working.

In the meanwhile, have a look at this -

healthunlocked.com/pmrgcauk...

If you aren’t having any return of normal PMR symptoms then I guess it’s probably not a flare, but just keep your eye on this.

[Baileyw06 in reply to DorsetLady]

I had the same thing happen going from 6 to 5/12 . I had extreme fatigue and sweating and than started a flare.My crp went from 4 to 8 . I tried 3 times going up to 7 Than to 6 and 5/12.

The doctor told me to stay at 6 and don’t worry about going lower. Now everything is back to where I don’t have the extreme fatigue, sweating, and my PMR is better.

[lemarie1 in reply to Baileyw06]

Just curious as to whether you are going to try to go lower again or what your plans are? What did the Dr say? I am at 5 and 3/4 and also am quite tired and hot flashes.

[Baileyw06 in reply to lemarie1]

She said to stay at 6 because that was where I had no problems.She was very happy I got there and the side effects are negligible between 6 and 5.

[lemarie1 in reply to Baileyw06]

So you will stay there from now on?

[Janann25 in reply to DorsetLady]

Thank you so much for your reply, and to the link to your previous post. It certainly seems as if my symptoms are related to the adrenal function, it's just a question of how best to deal with this. I think I'll stay at 7mg for a couple of days and see what happens. I think I'll be guided by whether or not the PMR symptoms return. I'll keep you updated.

[DorsetLady PMRGCAuk volunteer in reply to Janann25]

Stay at 7mg as long as you feel you want to, and then reduce very slowly - 0.5mg a time and using a slow taper - if you aren’t doing so already. But do bear in mind it could be a flare - hopefully not!

[Joan-E-D in reply to DorsetLady]

Thanks for the informative article. I'm still taking my Pred. in the evening and I wondered if I should change to mornings now. I started taking it in the evenings a few months after starting PMR in Oct. 2016 because when I took it in the morning, I felt so woozy and uncomfortably in pain until lunchtime.

I'm almost down to 1.5 mg. Pred. with almost no side effects apart from my back and knees being a bit stiff when I get up in the morning. This wears off as I move about. However the article explains why I'm getting hot, sweaty flushes similar to when I had my menopause 20 years ago. Do you think these symptoms indicate that my adrenals aren't working properly yet or simply that I should be taking my Pred. in the mornings rather than in the evening or both?

[PMRpro Ambassador in reply to Joan-E-D]

You are at a level where it would make sense to ask your GP to check adrenal function with a synacthen test - which shows if they CAN respond to stimulus but not whether they actually are doing so. Other tests are required for that.

[DorsetLady PMRGCAuk volunteer in reply to Joan-E-D]

PMRpro has answered - but if taking your Pred at night has served you well up to now, why change?

If taking it at night still gives you slight stiffness in the morning - it could be worse if you don’t take it until after you get up. Plus can you be sure that stiffness is PMR related - or dare I say it - just age related! Happens to the best of us. 😂🤣

[FRnina in reply to DorsetLady]

thanks for great link. I'm at the 7mg stage and now understand how to help the adrenals to be able to function: diet, rest, no stress and very slow taper.

[Kinnear in reply to DorsetLady]

Good to read and as I'm finally getting to 10mg this month...PMR diagnosed August 2018....a confirmation of my sense of the importance of prioritising no sugar/low carb and eating good fats. Thank you.

[gifford7]

If your CRP is rising and above 8mg/L and symptoms such as fatigue, it indicates a probable flare. I suggest raising the pred, maybe to 10mg to see if that helps.

I flared 3 times at 7mg and went back to 10mg. Now with a slow taper am at 5mg.

[PMRpro Ambassador in reply to gifford7]

It is recommended that a single raised CRP without accompanying symptoms of PMR/GCA is NOT taken as a sign for a kneejerk increase in pred dose. Symptoms (or lack thereof) always trump lab results. They may be raised for many reasons and lab results may not be absolute - trends are much more important and the test should be repeated in a week or two to see if there IS a trend.

[Janann25 in reply to PMRpro]

Thank you. I'm having a blood test this Thursday so, while I'm at the surgery, I'll ask about a synacthen test at the same time.

[gifford7 in reply to PMRpro]

The original message mentioned "dreaded fatigue" and "CRP levels are raised". Fatigue can be a symptom of a flare or adrenal insufficiency. In either case the argument to stop the taper and go up a bit on the pred dose would guard against adrenal insufficiency, and in the case of GCA vision loss. Those of us with only GCA often have as the only symptom of a flare the dreaded fatigue[malaise] and raised CRP. [and 50% of those with TAB verified PMR have sYmptoms of GCA].

[PMRpro Ambassador in reply to gifford7]

Increasing the dose of pred doesn't "guard against adrenal insufficiency" - but it does increase the difficulty in getting the adrenal glands to start functioning again. It is a difficult balancing act of managing the symptoms and achieving that - and random increasing of the pred dose slows it down.

[SnazzyD]

Hello. This can be a troublesome dose level where the Pred isn’t quite enough to keep the ship afloat all day but the adrenal system still thinks there is enough. I felt pretty grotty from around 7mg to 5mg. I reduced by 0.5mg every 6-8 weeks but still felt weak, sweaty, emotional to name a few. When I had a Synacthen test at 4mg the Endo doc was of the opinion that the adrenals won’t work unless challenged so I stuck it out. By 3mg I felt so much better, though since then I’ve had to reduce over at least 12 weeks.

[lemarie1 in reply to SnazzyD]

Hi Snazzy. Did you drop at 1 mg every 12 weeks? I am at that tired/hot stage and hope to get through it as fast as possible. Will have a synacthen test when I get a bit lower.

[SnazzyD in reply to lemarie1]

0.5mg and that was quite enough for me. On the one hand one needs to challenge the system but without it knowing, if you see what I mean. Rocketing down just to get through is more likely to end in tears.

[lemarie1 in reply to SnazzyD]

You are right. So much patience is needed. I will just bide my time and take it how it comes. Thank You!

[Meggsy]

Thank you for your post DL. I’m at 7.5mg and very grateful to have that information in advance of further tapering. 🌻

[jinasc]

I would ask your GP for a Synacthen Test............. they can be done at 7.mg and below, just to see if your adrenal glands are waking up.

[Janann25 in reply to jinasc]

Yes, I'm having a blood test this week, so will enquire about it at the same time.

[YuliK]

en.m.wikipedia.org/wiki/Adr...

👆

I have to admit, that I'm feeling totally exhausted since lowering Prednisone to 5mg.

Like others I can sleep 😴 18 hours a day, although I force myself to avoid that ...

I was searching a little on the internet and found the above 👆article. It's interesting that nothing in the article explains that the cause of fatigue can be caused by cortisone taking over from the adrenal glands. ( which most of us have experienced).

Anyway folks, keep your peckers up and don't give in to your fatigue.

Hugs

YuliK

[PMRpro Ambassador]

Poor adrenal function may rarely result in raised CRP - but it is very non-specific so will go up with many infections or muscle damage. As I have commented above, a single raised CRP is NOT a reason to raise the pred dose - the blood test should be repeated after a week or so to see if there is an upwards trend.