Does anyone else experience this?

[43tripandskip]

I have just tapered down to 3.5 mg of pred but I still have a lot of pain when I try to tuck my legs under me when getting out of the bath. Some days, getting up a flight of stairs is very uncomfortable, and my reserve of fat is still lying across one shoulder so my muscles let me know that they don't like getting my left arm into my coat. I thought that there would be some relief from these symptoms, especially as my dosage is getting closer (hopefully) to the day when I will be off pred. Is it likely that these symptoms will persist when I am no longer on pred?

[SheffieldJane]

I wonder if a physiotherapist could help you at this stage of your recovery? This sounds a lot like residue damage from PMR and it's treatment and effects.

[DorsetLady PMRGCAuk volunteer]

Hi,

Last sentence - if you still have the underlying PMR then yes. You might be getting closer to zero, but that doesn’t mean the PMR is necessarily closer to going as well - it doesn’t work like that. That would be the perfect scenario 😉 but life isn’t like that.

However long you have the PMR you will need some Pred. If you stopped Pred tomorrow your PMR wouldn’t disappear because you’d stopped the medication. The only way you know the PMR is gone is when you get to zero, and you get no symptoms you can assume it’s gone. Not very scientific, but that’s how it works.

As SJsays a visit to the physio might help - worth a try!

[43tripandskip in reply to DorsetLady]

Thank you DL. Very helpful information.

[Grants148]

Dear 43tripandskip,l have lowered my dose of preds to 3mg,which my doctor has suggested but l find l cannot bend my legs enough to sit down in the bath and can only use the shower. This has been the case even when l was on the5mg dose,l would so love a nice warm bath .Then there is the pain in my arms ,l find it very hard to open a window ,the handles are rather stiff.I even had to ask my husband to push a plug in a socket for me. My GP exspects me to lower the dose to 2 mg next month but l feel l need to increase it, l do not think you will be able to come off the preds yet,it does take time as the nasty PMG has a habit of coming back just when you think you are getting better. It is very frustrating but with a lot of patience and taking care not to overdo things ,some people do overcome PMG,l hope that you will be one of them. Good luck xx please excuse the spelling mistake,l spelt excuse wrong,l think PMR gives me brain fog.

[43tripandskip in reply to Grants148]

Thank you Grants 148, it is comforting to know that others have the same symptoms. I am very slowly tapering so there is no way in which I would jump or stop my dosage. But you do wonder when these pains will stop. Thank you for replying, much appreciated.

[PMRpro Ambassador]

You aren't reducing relentlessly to zero - you are looking for the lowest dose that gives the same result as the original starting dose did. The underlying cause of the syptoms we call PMR is not affected by the pred - it is just managing the inflammation until that underlying cause burns out and goes into remission. Only when that has happened will you be able to get to zero. In the meantime you need enough pred.

My suspicion would be that you have gone too low a dose to manage the inflammation at present. It doesn't mean you won't get lower - just not yet.

[43tripandskip in reply to PMRpro]

It didn't occur to me that I might have gone too low. The pain in my legs has been with me from the beginning of PMA. But I will review how I am tapering and leave a longer time than 5 weeks before I taper again. Many thanks.

[Leilagirl]

Hi . My experience has been a bit disappointing. I have had PMR and RA but RA markers are low -however, still positive for over 2.5 years now. I tapered down to 1.5 mg of prednisone and also take plaquenil as prescribed. I was so thinking I was on the upside of this PMR. Well.. now I have taken steps backward . Slowly over time as I was tapering my pain was lurking in the background but I did not listen to it. I took an occasional ibuprofen but still pushed on the low-dose prednisone. Then one day bammmm... The shoulder and arm and neck pain plus headaches just was seven out of 10 pain. Now I am back on 7 mg of prednisone and have tapered to six but I do not know if that will manage it really. So not to get too down on myself this low level of inflammation that exists while tapering is tricky business. It’s not a good thing and for that reason my mindset is not to get down to even the lowest but to stay on whatever milligram it is to manage my pain and inflammation. My mindset was all wrong from the beginning for me that is 1 mg or zero is probably not in the cards at least this early in the disease. All my best wishes to you hope this helps in someway.?

[43tripandskip in reply to Leilagirl]

Thank you for replying. I realise that the original question was 3 years ago, so this does give me a chance to realise that it was easy to think that we just keep tapering until we're off Pred. But the reality is very different. Those pains I experienced then are the pains that I still experience (sometimes to a lesser extent) and I am not yet off Pred. It is now 5 years since I was diagnosed and am now being helped by a rheumy who has prescribed Leflunomide. The whole journey has been a strange one as the very act of tapering gives one the impression that we are moving towards a goal. The slow measure at which we taper is crucial to our recovery. The realisation that quite a lot of people have to remain with a very low dose of Pred for many years to come becomes a reality for many of us..