Life without prednisolone

[patsy69]

I stopped the steroids three weeks ago l had been reducing down gradually over months, started in January 2016. was OK at first so I think adrenals working but 10 days, approx. later the pain and stiffness were much worse and lethargy. Trouble is that I am desperate to stay off the steroids to see whether my raised intraocular pressure really is a side effect as eye doctor hopes. My hope is that he will agree to monitor my pressures closely without the drops while I go back on a very low dose,1mg. ,long term. Of course my GP wound have to agree. I see them both separately week after next . I worry about eyes cos. I already have macular degeneration and only minimal vision in one patsy69

[GreyOwl]

Hope things resolve themselves and you are able to stay away from the pred. I'm still trying to wean myself off the wretched things, it has been around six years now and I've suffered some serious medical issues which are more than likely down to prolonged steroid use.

Best of luck!

[Pebble-Sue55 in reply to GreyOwl]

I am 2 years down the line and both my GP and the itinerant Rheumy's I have been seeing are pushing me to get off Pred ASAP?? Started on 10mg have experienced all the nasties of pmr, but using DS method have managed to get down to between 2 and 3mg. Just experienced vague aches in both shoulders and buttocks, told GP I didn't want to go all the way back to square one with the pain. She gave me the usual sceptical look - because my markers have always been low, even during the sort of pain that brings tears to my eyes. Decided to try a full reduction to 2mg. One week later, I have intense pain in upper arms, shoulders, and this time it is spreading down into both clavicles. That's a new one! I have to phone GP every month to beg for my Pred and she is like Scrooge doling them out in 1mg packs. Making no allowance for the need to do an occasional increase. I even told her last time, that pain in a text book is nowhere near the real pain experienced in a real body. She ignored that.it has felt like a battle of wills all along, and I am not an aggressive person, just quietly determined when fighting my corner. Trouble is, it is too much hassle to change GP when you are struggling to get through each day as it comes, all the form filling, explaining everything to a new one, having loads more tests and medicals, just can't face it, I use all my energy in being positive and getting on with it. Doves anyone else get pain in the clavicle area, is it connected to PMR?

Blessings All🌻

[PMRpro Ambassador in reply to Pebble-Sue55]

You have a GP who doesn't understand the concept of care - do try to summon up the energy to find a new one who does. She can't be a single-handed practitioner - and you are entitled to see anyone in the practice if you wish.

[Klah in reply to Pebble-Sue55]

It is not like you have a bad cold and need treatment for a week or so! Try and muster the energy (on the right day😊) to change doctors. You need someone who understands PMR and the need for the prednisone...in the long run you will be glad you switched, and will have less pain. I realize how difficult it is to find a new doctor...although I don't know where you live, insurance, etc. Maybe someone on this forum lives near you and can recommend a caring doctor. Best to you....

[SheffieldJane]

What dose was your cut off point?

I can see why you did this but of course untreated PMR can morph into GCA and damage your eyes from another angle. You do seem to be making decisions with huge implications without support.

I hope that you are clearer about the way forward after consulting the Eye specialist and your GP. You are between a rock and a hard place. I would make a list of my questions to get the maximum from my consultation.

The very best of luck, I can imagine that my body would react in the same way.

[DorsetLady PMRGCAuk volunteer]

Hi patsy69,

Not sure whether you got down to zero, or just stopped the Pred at a higher dose. If the latter then no wonder really that you've got a return of pains.

I can appreciate you try to sort out your eye pressure problems, but by ditching the Pred completely whilst you still have PMR may give you more problems.

Hopefully you can get things resolved quickly.

[PMRpro Ambassador]

There are many people for whom just 1 or 2 mg is enough to keep the PMR symptoms at bay - and there is no way that level of dose is going to contribute to raised occular pressures.

But don't wait too long - or you won't get away with just reintroducing 1mg but have to go much higher just to get things under control.