Dilemma at 5mg with symptoms and ESR on the up

[ImC_]

Hi, I posted a couple of weeks ago about tapering, slowly, from 5.5mg to 5mg and feeling that maybe my symptoms were starting to return, although more around shoulders ( collarbone) rather than lower back/hips/legs like when this all started in August 2020.

So I was not sure if the collar bone was due to pillow or PMR. Have looked into sternocleidomastiod tightness.

For what it is worth the ESR had also gone up, after hovering around 6-11 when things are under control, to 20.

The GP (not my usual one who is away for a while) said to stick at 5mg rather than continuing to taper, and get bloods done again in 2 months. (Much longer interval that my normal doc would have said.)

Well, I could not wait 2 months. I am going downhill in terms of discomfort and stiffness, now definitely around my shoulder ( and it is not the pillow) and I am getting leg and back stiffness too, and the fatigue is now unmanageable.

My usual GP always said that if I felt things were not going well to take my blood test form to the clinic sooner than whenever we’d agreed, to see what was going on in terms of CRP and ESR. PMRPro also recommended this to see if the upward trend of ESR continued.

So I did that and the CRP is still normal (2) but the ESR has inched up to 23 (from 20, over a period of 20 days, and from between 6 and 11 in ’normal’ times).

I feel that I am not ready for 5mg. I want to go back to 5.5mg where I was happy! I am not racing this condition. DEXA shows some osteopenia, not osteoporosis.

But maybe I have to go through this, to make the adrenal glands stir into life?

I don’t quite understand the difference between the inflammation being out of control and needing an increased dose as opposed to getting symptoms because the adrenals are waking up and having to forge a way through that?

Please advise.

Should I stick at 5mg? How long would it take to get over this hurdle and have my strength again?

Or can I just go back up to 5.5mg and it will settle?

Or, if the inflammation has been creeping up, should I do a kind of ‘sick rules’ hop up to say 10mg just for maybe 4 days, then straight back to 5.5mg?

I was here before - got to 4.5mg last summer and could not manage. GP said to go back to 7.5mg which felt lovely but and then it was a long slog, half-mg by half-mg, to get down again.

I will be talking to my GP too, but would welcome people’s views here, first.

Thank you.

[DorsetLady PMRGCAuk volunteer]

The normal advice for a flare is to have a short sharp increase by 5mg above the you last felt okay…so in your case 10.5mg , although 10mg well do it. Stay there for 5-10 days, depending on how you feel.

You should then be able to drop back down to just above previous good dose - so 6mg.. whether you do that in one step, or two - to 8mg for a week, then to 6mg is up to you. There is no need to do a slow taper, because you are on the higher dose for only a short period…

Then recommence your tapering schedule - once you are sure you are okay ay 6mg….

PMR pains are not usually the same adrenal symptoms, except maybe the fatigue which is usually a sign if adrenals stuttering…maybe have a read through this post - contains various links,..

healthunlocked.com/pmrgcauk...

[ImC_ in reply to DorsetLady]

thank you

[ImC_ in reply to DorsetLady]

I am going to nurture my adrenal glands in accordance with your article, so when the time comes they'll be ready. I only know Cod Liver Oil as a punishment for children in the Beano, but now. . .

[PMRpro Ambassador]

No - you don't go through a flare because the dose is too low to manage the inflammation in the hope that the adrenal glands will wake up. You only stick at the lower doses if the effect is fatigue with NO flare of the inflammation. The inflammation is increasing and building up - leave it and you will end up back in the state you were in originally and needing a much higher dose of pred. Catch it now and you won't flare worse or need more than 6mg pred at worst.

It is two different things you are managing now - and the PMR is the one you react to if it appears. If it is still active and you need pred for that, you can't put the adrenal function first.

[ImC_ in reply to PMRpro]

Thank you. This makes sense now - two different things being managed.

I’m going to briefly revert to 10mg and back to 6mg then all being well taper to 5.5mg and hopefully stay there a while.

And the adrenal function only gets tackled if there are no indications of PMR.

[piglette]

It does not sound like adrenal glands but a flare. As DorsetLady suggests do a short rise to say 10mg or 10.5mg stay there for a week or so until you feel OK again, then drop to say 6mg. It is fatal trying to persevere at a level where you are in pain. The PMR will come and bite you.

[ImC_ in reply to piglette]

Thanks Piglette. 10mg for me tomorrow morning!

[piglette in reply to ImC_]

👍👍👍

[123mossie]

Spot on advice here, the only thing to add is to check your activity levels, doing too much when tapering makes things worse. Go very slow on your taper, that gives the adrenals more time to wake up & do their job.

[HeronNS]

Completely agree with the advice you are getting here. I've been on pred since 2015 and all went well, although I could never taper off, until early last year when I had a major flare. I had a lot of trouble acknowledging this and kept trying to taper down again too fast. Finally getting back to my old lowest best dose but I think I'd have got here quicker if I'd been slower at the beginning of the flare if you know what I mean - sounds a bit funny when expressed that way!

[ImC_ in reply to HeronNS]

I know what you mean. I'm glad for the advice here, I'm enjoying a few days back at10mg, although lucky that I have not suffered too many side effects of Pred.

[CarolF1312]

Hi there,I'm experiencing the same issues as you. We started around the same time, I started Pred June 2020.

I got to 4.5mg then Covid and a flare, back up to 6.5mg for a few weeks.

I'm now on 5mg but lots of stiffness. I take my Pred between 2 and 4 am depending on when I wake.

By 9pm I'm really suffering with stiffness in my lower back and hips. Takes a while to get moving after sitting in the evenings.

My GP and Rheumy constantly pressuring me tk reduce and stick to their plan of reducing 0.5mg per month but my quality of life reduces at the same rate!!

I really hope you get this flare under control and find your GP sympathetic and understanding

[PMRpro Ambassador in reply to CarolF1312]

Just say NO - it is YOUR body and if you continue forcing the taper you will have a full bown flare and return of the symptoms back to where you were at the start.

And you'd probably do better if you took 10mg for up to a week and go back to the last dose that was good since Covid. You also have the adrenal function return - you should have been on more during and post Covid until you were fully recovered.

[CarolF1312 in reply to PMRpro]

Thanks PMRPro you always give me confidence to push back.I'd love to conference you in on my next telephone consultation 🤣🤣🤣

There's a lot of people on here would say the same.

[ImC_ in reply to CarolF1312]

yes, my GP is good, both the regular one and the stand-in. Reading this forum helps to push back against anyone trying to rush you, hopefully? I have a very low tolerance of pain and inconvenience, I'm just not going to relentlessly reduce the Pred if the cost is too high.