Who would be a Rhumi ?

[RevSmallwood]

Hello everyone. New here and blessed to have found this site.

Rhumi's can only say that it's an auto immune system problem, they have no idea as to the cause and therein cannot cure it and can only prescribe the only effective pain relief, Preds.

I have never heard of DEXA scan until here so surprised I haven't had one especially given I've been on AA for the 3 years.

I was most surprised to here how many here have been treated for PMR for many years as I was told it would clear up in 18 months. So for the past 18 months I have been put on the methotrexate for 6 months and as they didn't work I've been told to reduce Pred constantly with paracetamol supplement on their advice.

It appears from peoples experience here that reducing to soon is not a good idea.

I understand that a Rhumi must have a difficult job to treat us and understand their concerns on long term medication but without any alternative on offer what's a boy to do ?

[ChinaWuntoo]

You are soon to find many members telling you that....

Your first para is correct, although there are clues as to why PMR starts (in my case it was probably prolonged stress).

Rheumatologists often know very little about PMR

Paracetamol does not touch PMR pain.

PMR does not clear up in even two years unless you are one of the lucky ones. Often it is 4, 6 or more years.

Reducing too soon is asking for big big trouble.

Like you, I learned about DEXA scans here and have been on Pred and AA for 8 months - next consultation it will be talked about!

What are you to do? Join the rest of us, exercise best patience, keep taking the pred and you will improve.

In your case, you might want to pray!

And, welcome. There's loads of excellent advice available here.

[DorsetLady PMRGCAuk volunteer]

Hi,

“what's a boy to do ?”

Have a read of this, even though you’re not new, and ask your questions here. We live with these illnesses day by day - and know them inside out!

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

No chance of another rheumatologist? One who keeps up with latest findings...

medpagetoday.org/rheumatolo...

practicalpainmanagement.com...

are about the same work with slightly different empahses - but indicate the duration of various versions of PMR

Then there is this about the causes:

jrheum.org/content/46/12/1552

Or a competent GP? In the UK and much of Europe most PMR patients are mamaged by GPs

It would be a great help if you could tell us a bit more about yourself - in particular, country is very relevant.

[Manchesterlady]

I had my six month consultation with my rheumatologist this week (by telephone ) a different one this time. First one said PMR only lasts 12 months , this one said 18 months. I am currently taking 6 and a half and 7 mg on alternate days. He would be happy if I could get down to 6 mg , in 6 months time .

Felt like a waste of time . Only on the phone for 5 minutes.

[PMRpro Ambassador in reply to Manchesterlady]

Honestly wish I knew where they got the idea ...

[Manchesterlady in reply to PMRpro]

So , what have we got then ? Or do they mean if it hasn’t gone in 12 or 18 months it’s never going to go away?

[PMRpro Ambassador in reply to Manchesterlady]

I think their usual assumption is that it is fibromyalgia or an inflammatory arthritis of some sort - hence, in the latter case, the desire to use DMARDs. Then a few will blame steroid resistance (which I think coincides with when they aren't prepared to use enough for that patient) or steroid myopathy. Or that the patient is exaggerating their symptoms.

[borednow in reply to Manchesterlady]

We've got the knowledge of the brilliant people on this website, that's what we've got! And we can always pray (gentle acknowledgement to the RevSmallwood there) that most Rheumys see the light - as it were).

[SheffieldJane]

Hello and welcome RevSmallwood. Some happy chance has brought you here. You are now amongst a group of very experienced people who will be happy to correct wrong information that you have been given and to help you on to the right path. Stick with us and bring your questions here as they arise.

[Hidden]

Like you, I am very new to this site, but not AI disease. Personally and for those who have an understanding and enlightened clinical support team, the vision I have is a symbiotic team of clinical expertise and prescribing knowledge, aligned with expert patient.

[RevSmallwood]

Well thanks to you all, as anticipated you always get more support and good advice from fellow sufferers than those who are supposed to know

I have had many health problems for some years which I dealt with, but PMR was another story pain wise. Pred was like fairy dust and was doing fine till I went to see Rhumi and then it all went wrong.

The thing that is most odd is that there is such a disparity with the medical profession and sufferers as to the expected duration.

I'm no wallflower anyway when it comes to stating my case with Doctors but will feel more informed to ask a few more questions thanks to he great info here.

Many Thanks and God bless us all.

( BTW, I'm not a Vicar, it's the name of a character from one of my favourite films)