Reducing from 10mg to 7.5!

[Jayveedee]

So on the instructions of my rheumatologist, who says I haven’t got PMR, I have reduced the Prednisolone from 10mg to 7.5 this morning and am wondering if I will have any nasty withdrawal symptoms if he is right and I don’t have it. I’ve been on steroids since last September and I know this is quite a lot to reduce by. Has anyone else been in this situation?

[PMRpro Ambassador]

On what grounds is he saying you don't have PMR?

[Jayveedee in reply to PMRpro]

He didn’t say, just that he won’t know what it is until I’m off steroids. Have just received my next appointment to see him on 17th June.

[PMRpro Ambassador in reply to Jayveedee]

Fair enough - and in that case, you will have to put up with the discomfort of reducing the dose fairly quickly unfortunately. If your symptoms reappear before you get to zero he may take pity on you - but he wants to see you with whatever it is in all its glory so even if it is a flare you will need to suffer it until you see him.

You should be fairly OK down to 5mg - if you have it, steroid withdrawal should improve after a week or two and paracetamol etc helps some. You haven't been on pred terribly long so adrenal function SHOULD wake up fairly quickly but you are likely to feel quite fatigued and maybe have other adrenal insufficiency woes. If you feel ill - dizzy, confused, really unwell, don't nesitate to seek medical advice just in case. Don't wait if you can't see a GP the same day, at least call 111 and 999 if you are really unwell.

But I'd still like to know why he is so sure it isn't ...

[Jayveedee in reply to PMRpro]

Thank you so much. I reduce to 5 mg in two weeks so fingers crossed! I’ll let you know what happens.

[Nap1 in reply to PMRpro]

I have that Experience years ago and moved back to New York City to be under the care of a famous rheumatologist who was doing the TCZ study. He too didn’t not believe I had GCA and reduced the steroids so quickly that I almost died. I do not recall ever being so sick in my life.

It doesn’t matter who you get as a doctor as long as they believe in you. I will never forget that experience. I moved from Florida to New Jersey thinking I was getting the best. It was not true and I ended up real sick and disappointed.

[DorsetLady PMRGCAuk volunteer]

You may do.....this post gives difference between SW and a flare - healthunlocked.com/pmrgcauk...

But as PMRpro asks, why does he think you don't have PMR?

[Jayveedee in reply to DorsetLady]

Thank you DorsetLady, he didn’t say why he thought that I’m afraid. Maybe because I have this awful pain in my left side that I thought might be a flare but obviously isn’t. Have had a CT scan and various tests and waiting for an MRI scan. It all happened at the same time as my first appointment with him, and I’m a bit confused now to be honest.

[DorsetLady PMRGCAuk volunteer in reply to Jayveedee]

I'm not surprised, so I guess all you can do is follow instructions, hope for the best and finally get some answers.

[SnazzyD]

You might get a feeling of being tired and fluey or headachey in the first few days as withdrawal of a drug that your body has got used to being there, but that should go in a week or so. I would expect that. As for adrenals and PMR the others have said it.

[Meanz in reply to SnazzyD]

Hi there I'm just wondering .I've been on prednisolone from last may started on 30 mg but 20 in June then tapered on down till IST march now off them 8 wks but I still have fullness in head and feeling spaced out also have buzzing which started while on preds .I've heard this can take months to go out of your system .I'm hoping this is right as I live in hope of getting back to myself .Any knowledge would be appreciated .

[SnazzyD in reply to Meanz]

It is very difficult to say what is what because there’s little or no detail about your diagnosis and how and why you reduced as you did. I’m a bit concerned you are off Pred in only 10 months if you do have PMR or GCA. Your symptoms may be due to residual autoimmune activity that’s still there and possibly GCA which gives head symptoms. It could also be something else completely different. Have you spoken to a doctor yet?

[Meanz in reply to SnazzyD]

Yes I've been attending a neurologist I was diagnosed with Neuro sarcoidisis but think preds give me these weird sounds and pressure in my head could t go back in prednisolone they've ruined my head . Neurologist tapered me off and did a brain MRI and seemed happy

[SnazzyD in reply to Meanz]

I remember the buzzing and pressure at doses above 15mg or so but was gone once I got to lower doses. However, it may not be the Pred but the neurosarcoidosis since it can cause inflammation in the brain, so difficult to say for certain. By sounds, do you mean tinnitus? From what I can see Pred is the treatment for it. Is the doc happy not to treat it then?

[Meanz]

Hi there were you on preds long I've been on them for 10 mths altogether 5 mths of this tapering off I don't think it's n.sarcoid as brain scan came back all ok . I think the preds have left me like this as I'm full of anxiety and think this could be inducement of tinnitus and pressure in head and I also think it's the preds ,I also got this two weeks after 2nd covid Vax .

[Meanz]

Sorry about replying late I e just seen your msg .