PMR totally debilitating!

[Heidiypi1]

hi everyone I haven’t been formally diagnosed yet but I believe I got PMR three weeks before my tongue operation to remove leukoplakia suspected tongue cancer anyway that came up clear so that was great I also have CLL. Lucky I can write this on my iPad because my fingers look like sausages are very painful to use my hands. Within the three weeks my neck was very stiff and sore and I was very stressed got a few manipulations from the Chiropractor didn’t help anyway it was the week I was recovering from my tongue operation everything went south!

I didn’t understand what was happening to me and four days in record an ambulance at 4 am in the morning I couldn’t move I couldn’t turn over I was in absolute agony it was terrifying the hospital said that they thought I had gout which are now learn it is definitely not that as I have so many joints involved and nothing to do with my feet or lower legs!

i’m 59 already suffering with fatigue from CLL now I have horrendous fatigue from this I was awake at 3 am this morning in absolute agony again I just can’t do this any more it’s too much my whole life has been taken from me this is what it feels like.

i’m seeing a doctor this afternoon just a GP I’m hoping he’ll give me prednisone I was hoping to start on 10 mg because when I was in the hospital before they gave me 50 mg which gave me three days break but I felt really stuffed up in the head mentally was not myself at all and stop me from sleeping which I really do need. Has anyone here started on only 10 or 15 mg for the PMR?

Lucky I’ve got a great husband is very sympathetic helps me do everything taking lids off getting up putting it up on anything I need he’s just wonderful! I have every single symptom in the book for PMR I’m really hoping it’s this and not rheumatoid arthritis. Any tips out there for managing this would be greatly appreciated right now it’s changed my whole life, Everything goes very slowly now, take time for everything, I have to I can’t move fast anymore !

i’m from Australia been using this site for CLL for a long time appreciate any help I can get.😇

[piglette]

10mg is probably rather a low dose to start, 15mg is more usual, some start at 20mg. It normally works like magic in a day or two for most people. Good luck with your GP. Around 75% of patients just see their GP, it is if you have problems you need a rheumatologist.

[HeronNS]

Probably best to start on 15. If it works you start tapering after about a month so you aren't at that dose for long. As piglette said, 10 is a bit low as a starting dose. PMR starting doses are considered moderate, not high. Good luck. Let us know how things work out for you.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

Bit of info for you to look at, and if things are as bad as you say then 10mg is very unlikely to be enough, but you certainly don’t need as much as 50mg. As stated recommendation for starting is lowest dose to control symptoms between 12,5-25mg…..most common is 15mg but you may need slightly higher -

healthunlocked.com/pmrgcauk...

Please let us know how things go..L

[PMRpro Ambassador]

You talk about joints - PMR doesn't really involve joints and you also say your fingers are like sausages - that is typical of spondyloarthropathies, a group of inflammatory arthritides. They can also create peripheral PMR-like symptoms.

It will be interesting to hear what your doctor says this afternoon - but like the others, I don't think starting at such a low doseif he does think it could be PMR would be a very good idea. there is a world of difference between 50 and 15-20 which is the usual dose to start with in PMR. You would be unlikely to stay at that dose but the recommendations are not to start lower than 12.5mg - and the impression many of us get is that starting at a low dose does no-one any favours. You need enough to make a difference quickly or you get the side effects without benefits to balance them out.