PMG? Gone or not?

[Hlpaitch]

after 6 months of thinking getting older was horrid, I got to a point I couldn’t get in and out of the bath, stairs were awful and ending with me sleeping downstairs as I couldn’t get down to the loo quick enough. Hands not working, wrists feeling broken, same with ankles and knees. Eventually diagnosed with PMG. Put on 15mg of pred and a week later felt like a new person. Immediately told to taper, weekly down to 10, was fine. Slower to 6, up and down around 5. Down to 4 at a bit of a struggle but ok. Saw consultant - walked in limping - had been for a week, pain on top of foot - still waiting on mri but seems ok now. However, consultant says my PMG has gone, so just need to get off pred. Down to 3.5 but wrists feel broken again, shoulder joints waking me up, slow in mornings. If PMG has gone why do I feel it’s coming back- consultant v unhelpful, and literally cannot see doctor for weeks!!

sorry it’s a long one but you guys are so helpful out there

Thanks guys

Helen

[SheffieldJane]

This sounds classic PMR. Your treatment has been condensed too much. Even my Rheumatologist who is a leader in the field cannot tell that PMR has gone. The tapering needed longer gaps and then smaller doses. You still have it and need to start again with a more competent doctor. If they are going to use the dreaded steroids they need to use them properly and to the best advantage.

Have a look at FAQs to get an understanding of the treatment you should expect. Let us know how you get on.

[piglette]

It annoys me so much, these doctors who seem to have a magic ability and say the PMR has gone when you are still taking pred. In my opinion there is no way they can medically say that.

[Gimme in reply to piglette]

Just thinking the same. My answer to that is, on what basis do you say that and what evidence is there to say that it has gone?

[DorsetLady PMRGCAuk volunteer]

No one, not even those who think they have a god given gift, can say your PMR has gone until you have been off Pred for a few months and no return of symptoms...

Some may think it's gone... but the proof isn't there whilst you are still on some Pred - 1mg or in some cases even 0.5mg is enough to keep it under control.

Although you say 'slower' taper - do you really mean slow as we do!.. and when were you diagnosed... says nothing on your bio?

[Koalajane]

it sounds to me that you still have PMR and that you have been tapered very quickly, too quickly in fact. I think you need a new consultant who knows about PMR

[PMRpro Ambassador]

"consultant says my PMG has gone" - and how does HE know? The evidence is that it hasn't!

You don't take a dose of pred that cures it and all you have to do is get off pred. This is a chronic illness and up to half of patients need more than 6 years of pred so I don't see what makes him think that a few months is enough.

You need enough pred to manage the ongoing inflammation being created on a daily basis. You start on a dose that is more than enough and then you taper slowly - not weekly, 1mg per month after 10mg is more like it and even that is too much for some! The process is called titration - it is high to low with pred, in other drugs it may be low to higher. If you get to too low a dose - the symptoms return and you need at least 3 to 4 weeks to be sure you are still on enough. Taper every week and you have no idea at all where it went pearshaped.

You need a better doctor!

[piglette]

I tried e-consult during a recent holiday weekend. It displayed a message that it only worked when the surgery was open. It seems computers are now reducing their working hours as well perhaps in support for the junior doctors!

[DorsetLady PMRGCAuk volunteer in reply to piglette]

Same thing here -I only wanted to submit quarterly BP readings -but no can do outside working hours!

Pity illnesses don’t have 9-5 clock.. 😳

[piglette in reply to DorsetLady]

perhaps the new government will produce legislation about how illnesses should act!!

[DorsetLady PMRGCAuk volunteer in reply to piglette]

Look forward to that then …🤣😂

[piglette in reply to DorsetLady]

Perhaps we should rely on Trump to do that. He thinks he can walk on water so he could probably do a simple thing like that!

[DorsetLady PMRGCAuk volunteer in reply to piglette]

Don’t go there! We already have enough problems of our own .. 🙄

[Gimme in reply to piglette]

Yes, ours does that too.

Sorry piglette, I replied to you by mistake, instead of the OP.

[Gimme]

Be careful, same happened to me and still dealing with the fall out. And I reduced a lot more slowly than it sounds like you may have done. I really wouldn't try to reduce any further.

I think it is wishful thinking on the part of the rheumatologist. Of course it appears to have gone, when the pred is doing its job and controlling the symptoms. That's what it is meant to do. It's not like taking a couple of paracetamol for a headache and it goes. If the auto immune activity is still there causing the inflammation, then you still have PMR.

If you can't get a doc's appointment, you could perhaps submit an e consult or explain to receptionist at the surgery and ask for a telephone call from the doc. There is no reason in this day and age that people should be expected to be in pain for weeks on end. You could also call 111 and most likely they will get a doc to call you.