Question re low dose Pred

[Suffererc]

Has anyone had fuzzy head or thumping head, not painful when getting to a low dose. Sweating for no reason

I am on 3mg going to 2.5 but not sure why I don’t feel that good.

Feeling lightheaded, bp quite low.

Not sure it has anything to do with PMR.

[PMRpro Ambassador]

Fairly common symptoms of adrenal insufficiency - the return of adrenal function isn;t keeping up with the rate you are tapering at.You should find lots of related links in the FAQs post.

[Suffererc in reply to PMRpro]

Thank you. Have read the posts and yes it does seem similar. My heart is also racing. Will contact my GP Monday.So does that mean I will never get to 2.5.

I was going to take my first 2.5 tomorrow. Think I will hang on.

Not sure my GP will know, she wants me off Pred asap.

[SnazzyD in reply to Suffererc]

I reduced by introducing in the new dose over weeks. The lower I got the longer it took, until my adrenal glands started to work better. I got through but was one of those who felt unwell a lot with it and had to pare down my life in order to cope with the lower dose. I got there in the end. Not all docs appear to understand how it feels and although the books say it can happen, somehow the patient isn’t allowed to experience it. I had a Synacthen test at 4mg and 1.5mg. At first it wasn’t very special but by 1.5mg my adrenal function was pretty good most of the time.

[piglette in reply to Suffererc]

I really begin to wonder why some doctors give us steroids at all when as soon as we have our first dose they go on and on about us getting of them as soon as possible.

[PMRpro Ambassador in reply to Suffererc]

I'm sure your GP does want you off pred asap - but it is governed by 2 factors that are totally outwith her control: the activity of the autoimmune disorder underlying PMR and the time it takes the HPA axis (hypothalamus, pituitary, adrenal glands and the substances they produce) to return to normal function. Experts in Leeds found in a study a couple of years ago that is delayed in a good half of the long term pred patients they looked at - only a very small number fail to get back to normal but it DOES take time. More time than even the endocrinologists had thought.

If she forces you to reduce faster than your body allows SHE is putting you at risk of an adrenal crisis - which if severe enough could make you seriously ill, potentially needing an ICU bed and we all know they are restricted because of Covid. It will at least need a 999 call as she probably won't be available in a timely manner with the required injection. And they are under immense strain too. Just for her allowing you to stay on 3mg more for a bit longer. Prof Dasgupta told us in a seminar about 18 months ago that he keeps patients at 2-3mg for long periods as it reduces the incidence of relapses of the PMR and a return to much higher doses. If it is good enough for him - it should be good enough for her! 3mg may make you feel ropey - but as Snazzy says, better to try to stick it out or the natural cortisol production you are waiting for will take even longer.

[SheffieldJane]

I had those symptoms when I was at 5-3 mgs. Initially my Synacthen test showed an inadequate function that fully recovered at 3 mgs and a second test. The pesky head sweats carried on and I always have a slightly cotton wool head. That might be to do with cervical Spondylosis or now GCA. Perhaps it’s time to see an Endocrinologist, my consultation felt quite enlightening about next steps.

[LemonZest11 in reply to SheffieldJane]

Jane, on another topic ... your face rash. Could it be TCZ? I had my jab yesterday and was reminded by the afternoon that a hot, red rash on my cheeks is always a side-effect, mostly gone by the next day.

[SheffieldJane in reply to LemonZest11]

I suppose it could be. I had a three week gap, because of antibiotics and a uti.

[LemonZest11 in reply to SheffieldJane]

Has it gone? I'm now on 3.5 weekly, moving to 4 weekly. The rash has been more pronounced with the wider gaps. Hope it's just that for you.

[SheffieldJane in reply to LemonZest11]

Well I have had 3 week gap. I had a jab yesterday. It looks like odd spots today, it was quite dramatic initially. Hot and very red. I’ll see what happens. Thanks! X

[123mossie]

Hi it’s miserable feeeling unwell especially after doing well with the tapering. The same happened to me in the summer, reducing 3mgm>2.5. GP explained that if I increased pred it would simply prolong the time it takes for the adrenals to wake up and to stick it out if i could. I slowed the taper even more and now 6months on, everything has settled and I feel pretty good on 2mgm. I was careful with activities, & took extra rest on the bad days.

[Noosat]

I have tapered to 3.5mg ad have occasional vague mild headache most mornings. I am atking high dose of Tylenol which helps relieve headache so feel i is not PMR conneed

[Noosat]

Forgot to say, I am resting each afteroon, espally need it after busy, active morning

[Louisepenygraig]

This is very timely to me. I'm still on a relatively high dose compared to most of the commentators. I'm now on 6.5 and just started reducing to 6. Since being on 6.5 I've had occasional spells where i've suddenly felt a bit sick and dizzy. They don't last long but I have to sit down otherwise I feel more dizzy. I reduced from 7 to 6.5 quite quickly but I'm thinking I probably need to take this one quite slowly. It looks as if even if the PMR has gone into remission I may need to take any more reductions really slowly. My long term aim right now is to get to 5.

[Suffererc in reply to Louisepenygraig]

Surely the Doctors must know this may happen and should warn us.

[PMRnewbie2017]

I would reduce from 3mg to 2.75mg and use the DSNS taper plan and be prepared to slow it even further. A reduction of 0.5mg from 3mg to 2.5mg is actually 16.6%. I have just failed in reducing from 3.5mg to 3mg by getting too keen and not following the 10% rule. I am going back to 3.5mg for a week before trying 3.25mg with DSNS. Others who have been successful have said that some days all goes smoothly and then it all goes pear-shaped. That has been my experience too. At these low levels of Pred it really is a juggling act between assessing if the PMR is in remission and nursing the Adrenals and the other members of the HPA axis cohort. Their output is known to be inconsistent and fluctuate until they all "wake up and play as a team" and this takes time and cannot be rushed.

[Suffererc in reply to PMRnewbie2017]

Thank you. You have hit the nail on the head. I have tapered to 3mg. I think I may stay there for a while. My GP will want to rush further but she doesn’t have to put up with these side effects. Sometimes they are relentless. It has been better today with a little breathing space but still very much there. I think I may ask for a f2f with her and explain. Phone is hard for me . Thank you and everyone. It is good to know I wasn’t imagining it😊

[Luciejc in reply to Suffererc]

I'm at 2mg. of Prednisone and weekly Actemra. Have stayed here several months due to stress and adrenal insufficiency. Have also developed pulsatile tinnitus only when I put my head down on a pillow at night. Sounds like a thump, thump.

[1Unknown12]

Firstly Happy New Year.Although I have come off prednisolone in October I personally found the last 4.5mg to zero very hard. At one stage they thought I had had a stroke because of the symptoms. But I didn't.

Personally all I can say is persevere with tapering at your own speed, slowly.

Tiredness still persists for me and all the aches and mild head pain. These are a part of life for me. I can still work so not written off yet at 58.

Every one is different, so what has happened to me is not be the norm.

Just take care.