Feels like back to the beginning

[Pris80]

I've reduced to 6 mg of prednisolone. My brain fog has improved quite a bit, but my symptoms have got worse in that I have have trouble lifting my body off a chair or off my bed in the morning. Can hardly walk, stomach muscles sore, carpal tunnel has come back, and I keep dropping off to sleep. A few days ago I got up a bit too quickly and fainted, falling backwards on the tiled kitchen floor, luckily the kitchen rubbish bin saved me from hurting my head on the floor which is hard stone tiles.I was completely helpless, no way of getting myself up, had to shuffle my bottom across to where the house phone is and grab it with grabber I have hanging over a chair, call a friend who came round and got me on my feet.

Since then I have very sore shoulders and tummy muscles and a dread of it happening again. However it occurred to me that my pains in various parts of my body are similar to the pain I had when I was first diagnosed by my doctor with PMR 9 years ago. Should I go back to 15mg to find out...I'm not happy to relinquish my hard won taper.

[DorsetLady PMRGCAuk volunteer]

Ouch…that sounds very painful.. think you probably need to treat as a flare - see link - so in your case up to 11mg for 7-10 days… then you should be able to drop back down to 7mg or 6.5mg rather than 6mg.

healthunlocked.com/pmrgcauk...

Have you been checked over to make sure you haven’t done any other damage - and maybe start using a walking stick indoors - and definitely get up more slowly… 🌸

[Pris80 in reply to DorsetLady]

Hi Dorset Lady, thanks for your reply.I'm actually down to 5mg of pred, made a mistake there, shows the brain fog is still active!.To be fair, the not being able to get up off the floor is partly due to my total knee replacement op a couple of years ago, and the second knee waiting for a similar op, but if I could lift myself up with my arms and shoulders it would have been a help, but I have no strength in them. So far nobody has shown any interest in my shoulders. I reported my fall to the surgery and their response was to give me an appt. to have a blood pressure test in 2 weeks time. No suggestion of a check over.

I've never been referred to a rheumatologist, my GP has left the practice, and the stand in ones just tend to send you away with an antidepressant and a painkiller. The 'clinician' that messaged me lately said as I'm on 5mg, I should be on 4mg of pred from now on. See what I'm up against?

[DorsetLady PMRGCAuk volunteer in reply to Pris80]

Unfortunately not alone in poor treatment .

As for flare treatments-then up to 10mg and back to 5.5 or 6 mmg

[PMRpro Ambassador]

As I'm sure you have seen me say a few times - you are NEVER reducing relentlessly to zero, you are tapering the dose to find the lowest effective dose, the lowest dose that gives the same relief of symptoms as the starting dose did, a process called titration. Which any GP should recognise.

I think you have a couple of problems going on here - you are at the sort of dose where adrenal function needs to start to return, and it isn't in any hurry so you have some level of adrenal insufficiency. That is clear from the fatigue and dropping off to sleep and the dizziness when you stood up. Did you actually lose consciousness when you fell? I am appalled at a GP who doesn't ask more questions and thinks 2 weeks to check your BP is acceptable.

And you are at too low a dose to manage your PMR so the symptoms have returned. leave it long enough and you will be back where you started as the inflammation builds up. If you have enough pred, you need to treat it as a flare as DL has already explained. What dose were you at when the difficulty getting up out of a chair started?

Either way, even if it were only one of the two problems, the last thing you should be doing is reducing any further until your body has caught up. What sort of "clinician" told you to reduce further without an examination? In my opinion they need a complaint to be made.

I'm surprised at your assessment of the locums - often they are better than a GP you have seen before, they have no pre-conceptions. And the carpal tunnel is obviously part of your PMR. it is for some people, and you need that sorted to be able to keep mobile and independent without the fear of falling.

[Pris80 in reply to PMRpro]

Thank you PMRpro. I have seen you state this a hundred times and ever time I think back to the miraculous time when I was diagnosed with pmr by my then GP, and life returned to normal after she put me on 15mg of pred.Since she left the practice the whole emphasis has been on reducing the dose and for a long time I resisted and I settled on 12 although after a bad bought of carpal tunnel which went away after an approved rise to 15, I managed to live a fairly normal life.

Things got a bit confusing when I developed a frozen shoulder so had another sort of pain which physio was no help at all, and confused the issue somewhat.

While I was writing this I answered the housephone and amazingly it was one of the GPS from the surgery, so I told her what you were advising me to do and amazingly she has agreed that if I take on responsibility for it, she will put up my dose of pred to 12 mg daily on condition that I book a blood test once a week.

Wonders will never cease!

[PMRpro Ambassador in reply to Pris80]

A blood test ONCE A WEEK? What on earth for.

This shouldn't be long term though - but if you are stuck at 12mg to keep it under control then they MUST refer you as it could be an inflammatory arthritis hiding behind a polymyalgic presentation that they aren't recognising. If a patient has ongoing symptoms the answer is not to say get off the pred - it is to admit it is beyond their abilities. A very high proportion of GP diagnoses are incorrect - either saying it is PMR that isn't or not getting that it is PMR. And if it isn't PMR, there may be something better to offer you.

[Pris80 in reply to PMRpro]

At least she has raised my pred dose to the point where I last remember being comfortable. The proof will be in the pudding I suppose. Thanks for your help.

[PMRpro Ambassador in reply to Pris80]

Right, in that case, you may not be able to drop back to the dose you are at now if it really was that long ago you were comfortable. You may need to taper slowly to find your right dose and you may be stuck at a higher dose. After 9 years, you NEED to be referred to a rheumatologist because that is a long time and you need to find out if this really is PMR - it could be, I have had it far longer than that and there is no sign of anything else causing the symptoms, but it needs a specialist, not a GP.

[Pris80 in reply to PMRpro]

OK, I'll ask theGP.to refer me to a Rheumatologist. Is that what you mean?

[PMRpro Ambassador in reply to Pris80]

Yes, I think you need one.

[Pris80 in reply to PMRpro]

OK, well as this doctor is being so helpful I'll go ahead and ask her. Then I'll be hoping she gets me a good one!

[PMRpro Ambassador in reply to Pris80]

She probably won't have any say in the matter - the local rheumatology department allocates them.