Pmr help

[Lori23]

Hi Ive noticed that every one has a rheumatologist on here ,I've had pmr for 4 years and my doctor has never suggested this . I go for a esr blood test once a year and the doctor says just keep cutting down your preds if you get any pain just take one more ,that's all the information I've had until I came on this site which is brilliant I don't feel alone any more ,thanks everyone for all your posts 😜

[PMRpro Ambassador]

By no means everyone with "just" PMR has a rheumy - in the UK it has been normal for straightforward cases to be managed by the GP. The waiting time may be up to 6 months - in some places even longer - to see a rheumy on the NHS. And when you do get to see one, the chances of seeing the same person every time are minimal - your GP knows how YOUR PMR works, hospital doctors don't most of the time. So there are advantages. I have only just seen a rheumy for keeps , there hasn't been a "real" rheumy in the region before, although my GP is rheumy-trained as are some of the doctors in the rehab unit who see PMR/GCA patients.

Very young patients thought by a GP to have PMR or with any atypical symptoms, including needing a higher than usual dose of pred or a not dramatic reduction in symptoms in a week or two, should be referred as should ANYONE with the slightest suggestion that they may have GCA. Providing you have no red flags and you have been able to reduce steadily overall, despite the odd return to a higher dose you are probably well off with your GP.

In an ideal world we'd all have a rheumy and, needless to say, rheumies think that is what should happen at least once in PMR, but it isn't always possible in the UK in a timely manner. Remember, too, that a lot of people on the forums are not in the UK, in the USA it is usual for people to see a specialist for PMR. Providing you have no red flags and you have been able to reduce steadily overall despite the odd return to a higher dose you are probably as well off with your GP. PMR does last up to 6 years for the majority of patients - and your GP is obviously well acquainted with that fact.

[Lori23 in reply to PMRpro]

Thanks again for that information, I just thought everyone had one because they mention there rheumy all the time lol 😜

[Hidden in reply to Lori23]

Hi lori. I, like you am one of the minority in that my Doc diagnosed PMR in March 2017 due to a sudden onset of very painful shoulders and upper arm and after a blood test showing raised blood markers she prescribed Preds at 15mg which removed the pain in hours. I have never seen a Rhuemy and I am down to 5mg started this month. I have had different issues during my journey but, thankfully, no pain. Good luck with your outcome. Dorothy

[Lori23 in reply to Hidden]

Thanks good luck to you also lets hope it all goes away soon ☺

[HeronNS in reply to Lori23]

Here the GP manages PMR, but I was threatened with a rheumatologist when my doctor thought I had osteoporosis and wanted to convince me to take medication. I did meet the rheumatologist in another setting and was very very happy that I never was her patient. Very full of herself and just talked about "her" medications as though there was no other way to handle bone thinning.

[Nagswoman in reply to PMRpro]

2 week referral for me due to losing 4.5kg in 2 weeks. Doc sent me on a cancer referral as it could have been one of several illnesses. GCA was diagnosed.

[Lori23 in reply to Nagswoman]

That doesn't sound good hope you feel better now with your medication,there is nothing worse than being in pain all the time .

[Insight329]

First, kuddos to your doctor for allowing you to remain on Pred as you continue to have symptoms. So many docs try to force their patients off of it when they approach their second year. I think in this case, I’d take a vague GP over the possibility of getting an uninformed aggressive Rheumy. (But that puts additional responsibilty on you to be very mindful of GCA symptoms, etc.)

Also, what a strong person you must be to have travelled this illness basically on your own. I cannot imagine being given a bottle of Pred with the advice of ‘have at it’. It makes me shudder. In addition, these diseases are isolating - unless you have it, one can’t know what we are experiencing. I hope you’ve been able to develop a good support system.

In any case, you have found one here. Not sure what mg you are on but it’s my understanding that it gets a bit trickier the lower we go. So help is here.

Welcome to our family!

[Lori23 in reply to Insight329]

Hi im on 5 mg at the moment was on 2 mg a few weeks ago but sore neck and head came back .i want to be off preds soon .some people on this site have been on preds for years .l think ive been on mine to long as last esr blood test showed inflammation was gone .thanks for your information ☺

[SheffieldJane]

Welcome to the site Lori. You will have a lot to contribute I am sure! After all you’ve practically been a doctor for 4 years. Mind you, I make all the first moves with my GP’s surgery. My most valuable information has come from this forum and certainly most of the support.

[Lori23 in reply to SheffieldJane]

Hello Ive learnt a lot from this site ,l didn't know so many people had pmr it made me feel so much better I'm sure I will learn a lot more .thanks 😜

[Mary63]

I understand that a normal ESR when on prednisolone doesn’t necessarily mean the PMR has gone. Just that the prednisolone is dealing well enough with the inflammatory disorder which is PMR.

[Lori23 in reply to Mary63]

Thanks mary63 pmrpro mentioned that the other day .another thing i didn't know. lol 😅

[Nagswoman]

You are lucky to have an experienced doctor who does not feel the need to send you off to hospital. Just ensure that he/she is up to date on GCA.

[Lori23 in reply to Nagswoman]

Thanks but i was told about GCA in the beginning. My pmr took about six months before i was diagnosed until I seen the right doctor. 😊

[DorsetLady PMRGCAuk volunteer]

Hi Lori23,

I had GCA, which should be overseen by a Rheumy, but mine never was. I saw one once - 6 months after diagnosis by Ophthalmologist. By then my GP and I had a reduction plan in place, he looked at that said “that looks alright, carry on” and I never saw him again!

He really couldn’t have been more dis-interested! Maybe because he wasn’t the one that diagnosed it originally I don’t know.

So if your GP is capable of treating you and is interested, stick with him!

[Charlie789]

Hi Lori

Like you I had Polymyalgia for a year or more and my GP did not diagnose or treat it. I was not referred to a specialist until I got Giant Cell Arteritis. I was lucky and the appointment given at my surgery that day was with a locum GP who had once before in another practice seen a patient with GC. He lost his sight so she was not likely to forget. Then the rheumatologist, after lots of tests diagnosed GC and Polymyalgia. If I had not had GC I don't believe the Polymyalgia would have been mentioned at my surgery visits. My pain started in my shoulders, so was to them a back ache but it is so much worse. You have to really complain so much for GPs to take any notice and I don't. I had bowel cancer a couple of years earlier and everything was put down to that.

Your treatment does appear to be rather haphazard. If you could find a kind knowledgeable GP in your practice, ask for extra time and see if you can't be offered more help. It is all so frustrating and we don't need the stress. The hospitals providing Rheumatologist are very busy so there must be a lot of us out there. There are some great posts on the site about getting help and if necessary paying for a first appointment.

Wishing you well.

[Lori23 in reply to Charlie789]

Hi charlie you sound like you've been through a lot .the only real pain i have is my neck and a stiff feeling in my head at one side but its easing off gradually. I thought at one time it was gca but doctor said it wasn't. Thanks for all your info bye ☺

[borednow]

Hi Lori23 I've had PMR since May of 2017 and it has never been suggested by my GP that I should see a rheumatologist and, after reading many of the posts on this wonderful site, I really don't think I would want one! Quite a lot of rheumatologists not only seem to have very little knowledge of PMR but also have an amazingly arrogant and "I know best attitude". They often don't. So keep on with the slowly slowly routine - sounds as if you're doing OK. I'm now down to 5mg and will be reducing again at the end of this month after forthcoming holiday. All the best - I really hope all turns out well for you and someday (soon!!!) PMR will just be a horrible memory. Take care

[Lori23 in reply to borednow]

Thanks ☺

[DorsetLady PMRGCAuk volunteer in reply to borednow]

I think the problem, in the UK certainly, the Rheumatology department in any hospital has to cover too many illness, so is therefore much busier than some others departments. That, of course, very often leads to a poorer service for the patient.

I’m sure most staff are doing their best, but in all departments the consultants can sometimes be a little offhand (it’s not just Rheumies)!

[borednow in reply to DorsetLady]

I usually find if I ask how they are before the "interview" starts, it throws them completely and things progress a bit better!! Works for me .....................

[PJPS]

Hi Lori23, I too have never seen a Rheumatologist for PMR, I've been on this journey with my GP. The knowledge on this forum is great and I have shared this with my GP who actually knows quite a bit about PMR. The support on here is also very comforting.

Good luck on your journey, I wish you well.

[Lori23 in reply to PJPS]

Thanks 😜😀

[Mai45]

Hello Lori, just adding to what others have already said. I haven’t been referred to a rheumatologist, and I’m quite happy with that.

I have fairly straightforward PMR (touch wood). My GP sees me regularly, listens to how things have been, talks things over, albeit briefly, and then decides on dosage, whether to reduce or not etc. She prescribes the amount/dosage I will need until she sees me next. I’m well aware that’s not everyone’s experience, some (sounds like you are one?) have been left adrift deciding on their own levels of Pred and just phoning for prescriptions, so I’m aware I’m lucky.

I reckon if anyone is lucky enough to find a GP like that, and feel that you are progressing as you would wish, why worry about a referral to a rheumatologist? On the other hand, if your GP doesn’t seem to know or care about your progress and leaves you to self prescribe by guess and by god, demand to be referred on!

All medical professionals are short of time to discuss in real detail though and I’ve learned so much from this site. Like you, I’m so glad I found it.

[Lori23 in reply to Mai45]

Thanks mia at first I seen my doctor quite a lot but over the last two years I just go for a blood test and im told to taper down my preds ,but when I get below 5mg that's when I get the pain ,I just have to keep trying it will go eventually I'm sure lol 😜

[PMRpro Ambassador in reply to Lori23]

Have I said before: you aren't looking for zero, you are looking for the lowest dose that manages your symptoms. Sounds as if 5mg is it - and a low dose at that. Every few months you should try 1/2mg reduction to see if you can. But if you can't - it isn't the end of the world.

[Lori23 in reply to PMRpro]

Thanks I know you said that before just having an off day ,I'm fine on 5mg at the moment.😬😃😆

[skibarski2]

Hi Lori23

I was diagnosed in June of last year, after months of doctors appointments, blood tests all negative, my GP took a chance in prescribing Steroids to see how I would react.. I reacted wonderfully, to the 15mg, the pain in my top half of my body disappeared, I could wash my hair again.. I have never been referred to a Rheumatologist either. And I am still on 10mgs, & have all sorts of things going on, Infact I am waiting on an appointment coming in for an MRI & NEUROLOGIST.. As she feels there is more going on than “just” PMR.. I was hoping for a better year this year, sigh!

Kate

[Lori23 in reply to skibarski2]

Hi Kate some people on this site just taper of preds easily and some like myself are up and down,good luck hope it all works for you .😜

[daworm]

I also don't have a rheumy, only my family dr. Who hasn't pointed me in that direction, he said when I brought it up, "for what reason, they'll run the same blood work"...I don't know..maybe this spring I will see one, but also reading on this forum, many don't seem very happy with their rheumatologist...first thing they seem to do..more drugs..mtx or whatever it is, and cut down the pred...I do know it's hard to find a good one, there are not that many..

[Lori23 in reply to daworm]

Hi the thing is I've been on preds 4 years now ,some people say that's a long time and others say it's ok ,pmrpro has given me a lot of good advice and that makes me feel better,he said not everyone has a rheumatologist a lot of people on this site are from the USA and other countries and are treated differently. 😜😀

[yogabonnie]

I have a great doc (I'm in the USA diagnosed in Nov this year. on 12.5 from 15..but have had 2 set backs the stomach flu and now a bad cold...so haven't tapered more... my doc suggested a rheumy but I figured if it works don't fix it and said there was nothing he/she could do that my doctor wasn't doing and unless my doc knew the R PERSONALLY and could swear he could be a huge help I wasn't bothering... plus appointments booked more than a month ahead..maybe it was 2... and lots of people who HAVE to see a rheumatologist could use my appointment. I am so glad you found this site. and glad you are feeling better and it sounds like you have done all the right things... but hard to do it "alone". Keep on posting!

[Lori23 in reply to yogabonnie]

Thanks 😃

[daworm in reply to yogabonnie]

the Rheumy in this area gets mixed reviews...I read one "review" and the person said she laughed at her ideas and sort of talked down to her, ..that would last about five mins and I would be long gone, but others say she's O.K..dont they work for us...sort of??? ill be heading out your way (mayos) maybe in the spring if I don't see much improvement...THIS TAPERING SUCKS!!! haha...(I think your from minny, right..superbowl state)..

[yogabonnie in reply to daworm]

Yes. I'll be happy when THAT is over!!! But glad they are seeing some snow and cold! Mayo is supposed to be wonderful for PMR.. I hear.. but I'm completely happy with my local Allina guy. Keep me posted if you do go to Mayo. !

[Gary1310 in reply to yogabonnie]

Have been to Mayo many times for regular checkups. My husband and I spent 3 months there when he was being treated. I love it ...but it is further to drive from my home in Michigan. I chose to go to Marshfield Clinic in Wisconsin, Rheumatology. They took my appt. within a week of my call. Was diagnosed there with PMR. It is a wonderful Clinic, very much like Mayo but much smaller and easy to navigate.

[Zampalion]

I have had pmr now 5.6 years down from 25 mgs. To 2mgs a day started seeing rheumatologist because of pains and swelling in hands as R/A suspected he started me on methotrexate to get me of Pred.now my pmr Reduction is being controlled by my rheumatologist .

[Lori23 in reply to Zampalion]

Thanks for that information its great your down to 2mg .i hope all goes well for you good luck ☺

[daworm in reply to Zampalion]

I'm at 13 and my hands are starting to swell and hurt every morning..by evening they work pretty well...ill give it time.. but not a long time...isnt it nice to have a mystery disease!!!

[Zampalion in reply to daworm]

All the time I was on 4 to 5 mgs pred my hand joints were okay as l reduced below this amount my hand problems started seronegative arthritis was diagnosed by rheumatologist. So one problem receeds another one appears