Flare? or adrenals complaining, any advice please

[123mossie]

2 weeks ago I began tapering from 5 via 4.75/5/5/4.75/5/4.75/4.75 etc then got suddenly floored by horrible fatigue, felt quite ill. I barely had the energy to get upstairs . Crp went from normal to 23, the first increase since dx. I’m ok now, I went back to 5 but it’s taken nearly 2weeks. I’ve had no pmr pain at all, stiff leg muscles but then I’d had an hours cycling and an hours golf. So what was that? I’ve had pmr 12 months now, I’m wondering do pmr symptoms change over time or was it because adrenals are asleep, Thanks.

[DorsetLady PMRGCAuk volunteer]

Combination of adrenals still not on full power - and they won’t be for some time yet - and dropping below the level of Pred you actually need.

You might think 0.25mg wouldn’t make a difference, but if 5mg was only just enough to control things, it could do. The extra exertion from cycling and golf could have been enough to tip you over the edge.

The fatigue and feeling ill is definitely a sign of adrenals not producing enough cortisol to top up the Pred to the “normal” level produced.

CRP can also increase through other things, have you had virus or extra stress previously...all it does is show there is increased inflammation in body, not the source of it.

[Koalajane]

Last Christmas I was on 4.5 mg and working in retail I did a bit of overtime. I found I became really nauseous and sleepy and went home from work to bed! I am sure it was my adrenals struggling. This year I am only down to 4mg and still have times when my adrenal struggle so no overtime for me this year

[123mossie in reply to Koalajane]

Thanks. So frustrating but clearly patience is the key.

[PMRpro Ambassador in reply to 123mossie]

We often say - if you don't learn anything else here you will learn patience!

[SnazzyD]

It’s hard to say for certain but you are in the area of dose that can challenge your adrenal function to work harder. Though docs I’ve seen have poo pooed 0.25mg having any significant effect, I beg to differ after going through it. At the same time you are exercising quite hard, not by your standards, but still significant if your body has other things to worry about. It might be worth easing off during reductions, the early weeks at least, so you have fewer factors to consider. Also, if you are getting the effects of function not yet catching up, the last thing you need is enough exercise to make you stiff. If you are having a flare the last thing you need is sustained exercise and this is coming from someone for whom strenuous exercise has been life’s joy. The fatigue from poor adrenal function was all consuming which is why it took me 6-14 weeks reducing by 0.5mg, between 7mg and 1mg. I introduced the mew dose even more slowly than your regime and even then I was whacked. It is possible you had a virus or something which affected your CRP. So, in my humble opinion, try again but more slowly and give you body less to do while listening to its opinion on things so far. It may be like me, you have to go through a period where normality has to take second place until function is restored.

[123mossie in reply to SnazzyD]

Thanks, I guess I have to keep quiet & sit at 5mgm for a while. I had felt good on 5 until clearly I tipped myself over the edge. I hadn’t noticed it building up but I’ve learned my lesson now.

[PMRpro Ambassador]

I agree with DL - you are on the cusp at 5mg, just holding your own, and adrenal function is lagging behind to boot. You have reached your intermediate destination: the lowest effective dose. For now - you will get lower, just not yet.

Dr Rod Hughes likes to keep patients at 5mg for up to 9 months to let everything settle down and catch up. He then finds the next stage of the journey is often easier. It is a low dose, no or few side effects and safe to be at for a long time.

[123mossie in reply to PMRpro]

Thanks, good advice as ever. Another lesson learned!

[TrevConway in reply to PMRpro]

This is good to know. I’m struggling now at 4.5mg. I’ll be patient. 👍

[PMRpro Ambassador in reply to TrevConway]

Then go back to 5mg - wait a couple of months and try again. Sometimes it takes 2 or 3 (or more) attempts to get down that next 1/2mg.

[TrevConway in reply to PMRpro]

Yes thanks. I meant to write that I’m struggling to get below 4.5mg. I’ve had a few attempts already and because I’m feeling reasonable I optimistically put 4mg in my pill case again for this morning. After reading your post, I increased to 4.5mg where I seem to be okay. At least I think I’m okay on 4.5, but if there is any sign of a flare again I’ll go back to 5mg. If not, I’m going to stay on 4.5 until February and not attempt to impatiently decrease. Must say that I’m feeling pretty good right now and it’ll be lovely to stay like this for a couple of months 😊👍🚲☀️

[piglette]

I had that problem due to adrenals. I could hardly scratch my head let alone get upstairs. I felt as if I had just done the Marathon de Sable!

[123mossie in reply to piglette]

It's reassuring that others have had similar, where would we be without this wonderful forum. My son did the Marathon de Sable when he did a Mountain Leader course🥵🥶.Happy days..

[piglette in reply to 123mossie]

I would be flat out after the first hour!

[Bridge31 in reply to 123mossie]

I’m in the same boat. Currently on 4/4.5 and have been for several weeks now. ( Started on 10 in September 2019 ) I’m staying at this level until after Christmas . The fatigue some days, the muscle weakness others. I’ve been having to stop half way up the stairs because my legs simply don’t work. Some days I can walk my normal 2.5 miles easily and others it’s a real effort. Patience certainly is the key.Best wishes 🌸🌺🌼

[123mossie in reply to Bridge31]

So, I'm wondering is this fatigue & muscle weakness etc part of pmr, or is pmr weakening & we're dealing with purely adrenal symptoms. Hypothetical I know..

[123mossie in reply to piglette]

Meant to ask how are you now, did it all settle

[piglette in reply to 123mossie]

It just took time while I sat it out. I did go from 5mg to 6mg which improved things. Then was able to reduce without the the deadly fatigue, at least it was miles better.

[Meggsy]

Hello 123mossie. You have done extremely well to get to 5mg in 12 months, so give yourself a pat on the back and have a little rest. The tortoise won the race. 🌻

[123mossie in reply to Meggsy]

Thank you. Yes happy to linger a while where I am. What a strange disease this is. Dont assume anything as it'll pull the rug from under your feet!

[Noosat]

After 2yrs. this month I am down to 2.5mg and have suffered fatigue all the way. However, after 2 months on the 2.5 dose I am feeling less and more like I want to be active. I used to be a competitive runner, but have lost most leg muscle, so do not try to "push" it. I walk as much as I can. At the moment am in a rather worrisome part of my life, so am not rocking the boat. As much as I would like to be more active, I am being vey careful as I certainly do not want a flare. Don't know what advice I could give, except to be very patient. Listen to the Moderators on this site

[123mossie in reply to Noosat]

Thank you for replying, another lesson in patience . As others have said, no harm done staying on the low doses till the right time. Hope the leg muscles rebuild, gently does it.