Not understanding

[Rusty8]

I was told by kidney unit in November 2015 that I had pmr and they apologised that it hadn't been picked up before

Was given a high dose of steroids and it worked wonders not quite pain free but the best I had been since 1997 I have other problems as well but I could move a lot better and walk without pain

Had to reduce pills not told how so reduce a large amount to quick and had probs

Now on 10mg daily not to bad only because over years have tried to exept pain

Can I increase pills if I get a flair up ie when I can't cope ,am worried when I go to kidney unit they are going to want to cut the pills down

Have ordered book as no one has explained this pmr

Sorry for rant but don't know what's going on and what to do

Thanks for any reply

[DorsetLady PMRGCAuk volunteer]

Hi Rusty8,

As you were advised by kidney unit re PMR, who is looking after you for your aftercare for PMR? If anyone. Presumably you are seeing GP at regular intervals for your prescription, have you been referred, or asked to see a Rheumatologist?

Sure others, probably PMRpro or Celtic maybe, can give you links to read papers explaining PMR as well as recommended dosage reductions, and increases as appropriate. Meanwhile if you go to the PMRGCAuk home page it will give you links to various information pages, or try NHS web page.

Yes, you can increase Pred, but you need to do it in conjunction with your GP or whoever is looking after really, not just in an ad hoc way.

Do hope you get some answers soon. Take care.

[Rusty8 in reply to DorsetLady]

Thanks for replying

To be honest I'm not sure who is looking after me regarding pmr I know the renal unit started the steroids I order my own meds once a month on line

I have to go renal unit on Thursday so I will speak to them but I do know that they are not happy with giving out steroids because of the kidney transplant but I will have to talk to them instead of saying yes sir no sir lol will let you know the outcome next Friday oh I have downloaded a book about pmr so will have a read of that thank you

[PMRpro Ambassador in reply to Rusty8]

This really is something you MUST discuss with the renal consultant - if they identified the PMR they must also have some idea about the way they want you to use it. As Celtic says, you need to be under specialist care and under specialists who will liaise with one another.

[DorsetLady PMRGCAuk volunteer in reply to Rusty8]

Sorry didn't get back earlier, had problems with site as did others. As others have said your renal consultant really needs to discuss/liaise with rheumatologist. There are too many issues for you to be making decisions, however capable you are, on your situation.

Hope you can get some 'joined up' advice soonest.

[Celtic PMRGCAuk volunteer]

Rusty, I think it is important that as well as your kidney unit, you should be under the care of a rheumatologist for the PMR, and the two units should work together in your care. Hopefully your transplant should not be affected by the Prednisolone, as it is listed as one of the anti-rejection drugs. One thing I did come across in reading about this (I have a special interest as I have only one kidney - reduced-functioning!) is that you should be taking the plain white, non-enteric coated Prednisolone, and should definitely not be taking the red coated pills. Take a look at the BSR Guidelines for the Management of PMR, and, if necessary, take them to your renal appointment on Thursday - meanwhile if your renal doctor doesn't refer you to a rheumatologist then do ask your GP to do so. You should not be managing the PMR/steroid situation on your own especially in view of having a transplanted kidney. Good luck on all counts.

[Rusty8 in reply to Celtic]

Thanks will get back to you all after I have been to unit and let you know outcome