Coming off prednisolone

[fishers63]

What symptoms have people experienced when coming off prednisolone? I started on 60mg in January due to suspected GCA (discounted after biopsy) and PMR. Once down to 10mg I started reducing by 1mg every two weeks as new rheumatologist has decided I don't have PMR because no inflammation in blood. From 4mg it has been very hard, feeling sick, headaches, fatigue, return of pain in shoulders and hips. Down to 1mg now and unsure whether these are withdrawal symptoms or return of original problem, whatever that might be!

[PMRpro Ambassador]

I'd be banned if I said what I feel like saying!

When will they learn that the lack of markers shows one thing and one thing only if they are normal and there are no symptoms: the patient is on enough pred for the inflammation that causes the symptoms to be controlled. No left-over inflammation means the liver is not prodded to produce the proteins in the acute response which is what raises those markers. A negative biopsy also is no guarantee it is not GCA - it means they didn't find what they were looking for: the giant multi-nucleated cells that give the disorder its name. Doesn't mean GCA isn't affecting other areas and there are various reasons for a negative biopsy.

In that case, symptoms then rule. If you are now developing symptoms it could well mean you are now down to too low a dose of pred to manage the inflammation. You are also possibly suffering from poor adrenal function - you were on high dose pred for long enough to suppress adrenal function and it may not be up to speed yet, you may need to slow down. I'd be back to the GP for a deep discussion. If that is an option ...

[SnazzyD]

Couldn’t find any suitable emojis to replace the swear words I think PMRPro wanted to say. Even if you don’t have PMR or GCA the reasoning is cockeyed and when did they last look at their old lecture notes about adrenal insufficiency after long term steroids? I do froth at the mouth when specialist docs, who aren’t paid an insignificant sum, fail to even read the updates in research. It’s not even cutting edge stuff to know the biopsy result has enough of a failure rate to be cautious and not use it as an on off diagnostic switch unless it’s positive. Your symptoms could easily be adrenal insufficiency, possibly mixing in with an uncontrolled autoimmune condition. Second opinion would be a good idea I think.

Do read this, it’s about adrenal insufficiency (usually secondary type in our case) which all people coming off Pred should know about

pituitary.org/knowledge-bas...

[PMRpro Ambassador in reply to SnazzyD]

Not just swear words - could have been libellous!!!!

[fishers63 in reply to SnazzyD]

Thank you, very interesting....

[Willow33]

I also had a negative biopsy but my rhumetologist still diagnosed GCA, was started on 60mg October 2019, and they tried reducing quite quickly, but every time I got below 20mg all original symptoms came back I am back on 40mg at the moment but do have a lot of side effects from the medication, my daughter always says I should question more when I see them but usually forget, hope all goes well and you find out exactly what the problem is.

[Cobnut]

I was amazed at how quickly you had reduced your pred dose. I have had GCA for five years and it has taken me that long to get to 6mg. I too am under pressure to reduce and wrote here back in the spring saying I will be down to 5mg by my anniversary in August. I also remember PROpro saying 'wouldnt we all like to be down to 5mg'. Well I got there and felt awful with sore scalp, headache, stiff jaw and neck and dizziness. A blood test showed that yes the markers had gone up, so I'm back to 6mg and feel well again. Here I shall stay and as neither my GPs or consultant seem to be around, i shall probably stay till the country gets back to some sort of normal. Your body knows best.