Hi all, this might seem a simple question, but I'm just wondering how many folks are referred to a rheumatologist for PMR or are just treated in primary care without referral?
I haven't been referred. Should I push for it? Or is the fact that I"m responding to treatment at the moment a reason enough not to need referral?
And if I am referred what could the rhuemie do that the GP hasn't done already?
Hi Daisy
If your GP is treating you & you're doing well, with no set backs or complications then there really isn’t any reason to refer you.
It’s those with a query in their diagnosis, due to age or other considerations.
If, however at anytime things are not going well, then you can be referred.
Kind Regards
MrsN
Thanks for the swift reply.
My Duty Day today, so hopefully I’m on the ball x
A lot of gp can manage pmr . If it is GCA then it need referring to a specialist. Some GPs refer to a rheumy like mine did. The reason I was given for him referring me to a specialist was my age. Saw the rheumy once and he was happy gp could manage. I think it really depends on the gp and his confidence in dealing with it.
Yes, I'm 51, and someone with medical knowledge commented I should see a rheumatologist, but GP is happy w primary care. GP is aware of GCA and has agreed to do follow up bloods etc and I'm awaiting dexa scan results. So I think I'm happy with treatment so far.
As long as you and your gp are happy with the care them thats fine. just make sure if you have more GCA symptoms it is an urgent call to gp or A&E
my reply was badly worded...I haven't had GCA symptoms...I meant to say my GP has made me aware of the symptoms should they arise and to treat it as an emergency.
ok thats fine. If he has made you aware of GCA symptons just in case, thats good
Been to see my GP today. He still seems reluctant to formally diagnose PMR, although I am on pred 15mg and stiffness has definitely improved. His reluctance seems based on my ESR & CRP which are only very slightly raised (21 & 5) plus the fact that i still feel very ill systemically with malaise & fatigue even in the mornings now after 6 days on it. I mentioned referral & he told me he had no confidence in the local NHS Rhuemies! I mentioned i have private health cover, so he is doing me a open referral. Still on 15mg Pred, but I'm not a happy bunny.
All my bloods are normal (except slight anaemia) and inflammation markers on the low side of normal. I don't feel systemically ill as you describe...and if i did, I'd be pushing for referral I think. I do feel fatigued at times, but that is improving, and sometimes I get cement legs where my muscles don't feel the warm glow of exercise but muscle-sick as if someone has poured battery acid into them. But I've been on preds 6 weeks approx and my body is adjusting...I'm less tired, fewer GI symptoms.
But maybe others on this site felt malaise like your's too.
Hope you continue to improve.
My bloods were normal too just with slight anaemia.
I went to a physio appointment today...made 5 weeks ago at the start of PMR journey, and made it because of my very painful shoulders. But had to say my shoulders are no longer painful, but that I feel weaker and less robust than before and wanted advice on how to manage exercise and PMR.
She gave me muscles strengthening exercises for shoulders and advised excerscie is good but to listen to the body. I'm a very slow jogger anyway, and she said that was good because more intensive exercise can damage joints/ tissues.
So it was good to hear keep up the exercise, but lower intensity and listen to your body. Don't push it. Keep mobile and as strong as possible to get through to the other side of this condition.
She made me feel positive about managing it.
Not sure what he expects - many of us feel rubbish for years with PMR, a week is exceptionally early days.
The pred cures nothing - the underlying autoimmune disorder is still there, chugging away in the background and causing flu-like symptoms. ANd about 1 in 5 of us never had raised blood markers - or at least, not out of normal range which isn;t the same thing. If the range for ESR is 1-20 and your normal is 4 (like mone is) then a level of 18 is high. But still apaprently "in normal range" for the person who doesn;t understand how normal ranges are established. Morning fatigue is "normal" in PMR in the early days, Your guy sounds very sensible otherwise.
Thanks - wise & true, but really wished you hadn't told me that this rubbish feeling often doesn't get better for years as it is making me so desperately miserable and anxious already. Sometimes it's better to hope in ignorance.
Sorry - shall I change it to months? It is unusual for it to last that long, but months really is common and it really is true that some people don't feel WELL for a very long time.
Suppose i will have to get used to it? 
Currently my ears are singing, my face feels flushed, warm & tingling, and i keep getting waves of dizziness, slight nausea, light-headedness, slightly tight chest - panicking and just want it to STOP!! Not had this before today - perhaps Pred?
Someone elsewher commented they feel it is better to be prepared for the less attractive scenarios, otherwise you may get very disillusioned when it doesn't work as you want/expect.
I would stay with your GP. A Rheumie can be a real problem......trying to prescribe other drugs in addition to make you feel "better" like MTX. I had this experience and it did not work well. Sometimes just upping the dose you are on by 1 mg of prednisone can make a difference. I know the "muscle sick" feeling --- very different from the warm glow of exercise like Daisyfield mentioned.
It devasted me when I was diagnosed with PMR quite a while ago. I learned to manage this disease ----- one can with guidance and patience.
PMR sounds a different journey for all, but re feeling unwell...I have been really strict with no sugar, grains, processed food...but did go out the other night and had quite a lot of puddings!....more to fit in because friend had gone to huge effort (they were delicious) but I really felt the sugar spike and felt really groggy and unwell after. If PMR has a positive, it's improved my diet!
Same for a lot of us I suspect!
I am not sure what is your weight, but dose you are taking may not be sufficient to take care of accumulated inflammation. As you know, starting dose for PMR is between 15 and 25mg and you are on the low side, which may be a reason why it may take longer to feel better. The fact that ESR and CPR are raised kind of confirms that dose is too low. Another possibility is that you have some other infection or condition that is causing inflammation, but not related to PMR.
Sorry for not being more specific: ESR & CRP of 21 & 5 were before Pred. GP also suspected Lyme disease as i got bitten by a deer tick month after i developed stiffness so gave me 3 weeks of Doxy abx & arranged an ELISA antibody test after 4 weeks which was negative, although only 50% accurate. I didn't really get rash though. may be why he want me to see Rheumie? (there aren't any Lyme specialists in NHS apparently)
got it. When I started on steroids (also at 15mg) , it took at least a week before I could feel pain relief. After having seen on this site that "miracle" happens in hours, I started to doubt if I had PMR, because steroids were not working for me. In retrospect, I think it just takes time and considering that you are pretty athletic, your pain threshold is probably pretty high, so you have lots of accumulated inflammation to work thru.
If the accumulated inflammation is high and PMR adds new inflammation every day, it may take longer then usual or you can up the dose to 20 or 25mg for several weeks to clear inflammation from the system. At first the dose has to be higher then your"maintenance" dose to clear backlog. Then you can start reducing.
In my case I stayed on 15 mg for 6 weeks before dropping to 12.5mg
Think you hit the nail on the head there! It's now 8 days on 15mg and things are steadily improving. Stiffness 90% gone and malaise also improved although i am off work and taking it very easy. Now have Rheumie appointment Friday so also feeling hopeful that things are moving the right way. Many thanks for you help and support along with everyone else on here who has taken the time to help! hugs
Hi
I was referred after 3 years but only for him to confirm PMR was discharged same day
I think that's what my GP wants him to do
A competent GP can manage PMR. If you are happy, there is no real need for a Rheumatologist.
I believe the majority of people with just PMR only see a GP. The ones that do not is if they have GCA or have something slightly out of the ordinary for PMR, such as being very young or problems with pred for example. I think quite a lot of doctors refer patients when they haven’t a clue about PMR too. If you have a good GP stick with them.
Thank you
Depends on the country. In Northern Ireland you might have to wait anything up to 2 years to see a rheumatologist. In the UK it depends on the local waiting times but could still be 9 to 12 months. In the USA many PCPs (primary care provider) claim they can't manage something involving corticosteroids.
In the UK it is normally expected that straightforward cases are diagnosed and managed by a PCP. If there are no doubts, then that is fine. Anyone atypical should be referred - particularly young, unusual presentation, poor response to pred, or any signs or symptoms of GCA. Whether that means you get better diagnosis or treatment is debatable. The first rheumy I saw diagnosed OA - 13 years later there was no sign at all of OA! The second wanted it to be anything but PMR but no mention of large vessel vasculitis (which is actually the most likely option) and wanted to use sulphasalazine which probably wouldn't have achieved anything except making life in Italy difficult (avoid the sun it says!).
If you are doing well and can reduce when you go about it the right way - and you have a sensible and listening PCP, I'd stick!
Thanks..I;ve done 3 weeks on 15mg, then 3 weeks on 12.5mg and tomorrow down to 10mg which feels quite quick from reading this site. So far no flares, through do get up days and down days.
Hmmm - yes, bit fast in my book but if it works it is fine! However, if the drop tomorrow is too much just tell your GP you're not ready and will do 1mg at a time now!
Thanks..this site is v useful to be prepared w knowledge. I'm riginign GP in the morning to check the next plan on 10mg.
I think it does depend alot on which avenue you went down to get treatment in the first place.
Many people with GCA have more severe symptoms and often see a Rheumy and get on the books very quickly because they present first at A and E , Out of Hours , or the symptoms are so severe the GP wants them checked by the Rheumatologist for something else and then GCA or PMR are the diagnosis.
Many people get delays in treatment via a GP with PMR if their Doctor does not recognise or isn't knowledgeable about the disease and so refer them to a Rheumatologist for diagnosis .
Some people fast track into Rheumatology because of this too.
In the end , most care is done via PCP , sometimes with the supervision or monitoring of a Rheumatologist.
That is especially the case if you also suffer from other chronic conditions as management is more complex and certain drugs or tests can't be signed off by a GP.
Personally , if I hadn't been referred to Rheumatology I think I would have pushed for it , just to talk it through with someone Specialised in Joint conditions and to get peace of mind that my GP was doing the right thing ( but then I have a rather unreliable GP!)
Getting all the information from the forum about how often you should have blood tests , which other tests are useful to monitor your bone and liver health and which supplements you might need are just as good in combination with good PCP care , if not better , than using a Rheumatologist in uncomplicated PMR cases though .
Certainly if some people's experiences are anything to go by.
Take care , just choose what's right for you , and be proactive in getting what you need.
Thank you...yes this site is a huge help
This site has been a Godsend! So much info from people who live with PMR, can’t get better than that.........info direct from source! So thank you to all! I ended up with rheumy as my GP just thought the gym would “fix” my aching arms, hands, wrists??? I ended up in emergency and they ha d me with a rheumy in 4 days, the rheumy a different story, book smart but not a great listener........hence the forum helped immensely with the tapering. MY GP seems to be getting better as she realizes it wasn’t just a little something the gym could fix. Bottom line if your GP is good at helping you, no need for a rheumy
I agree with you.....it all depends. A rheumy tends to go by the book - often not much compassion, and some GP think all the pain and discomfort can be fixed by going to the gym or seeing a Physical Therapist. Any overdoing can make PMR more painful if the activities are not measured.
I was diagnosed April 2018 by my GP and we agreed that I follow the NICE (google "pmr nice") recommendations. In the year since, I have had one telephone appointment, full stop. Tapering of prednisolone from 15mg down , now at 3.5mg daily. No rheumatologist. From reading many posts, they seem to create extra problems.
Thank you...v useful...seems to be what my GP is following.
I agree with the responses you have had. In fact you will find your gp. more accessible. Probably have more attention. My gp seems to think it’s out of his hands because a specialist is involved. And the intervals between seeing the specialist can be as long as eight months.
That's interesting..yes I could see that happening...and my GP is v quick to respond, do bloods etc.
My GP referred me straight away but now says they treat PMR in the surgery. I think she thought there might be more wrong or maybe it was just because a rheumy had decided to come to town once a week so I could get in quickly. Sticking with rheumy although it seems a very expensive five minutes when I see her every three months.
My GP referred me to a rheumatologist and I see her every six months. She’s very pleasant and I quite like that she keeps an eye on me and is a conduit to further specialised treatment should I need it. It does mean I get a blood test then too which is reassuring. However, I don’t feel she is vital. I’d be wary of a GP who wrote off rheumatologists in general as they are specialists with training GPS don’t have. Slow tapering is key I think, so glad you’ve received that advice. Good luck!
Hi, You are lucky that a GP actually treated you for PMR without seeing a Rhuemetologist. I was referred to a Rhuemetologist and was seen and given the steroid treatment and then care passed back to my GP. I get good care but sometimes wonder if it is hit and miss. I am left to decide myself how to taper off steroids. I get the impression that GPsdon't really understand PMR. This site is the most helpful for this disease as we all suffer from different side effects, so never feel it is all in ones head. Good luck whatever you decide
Personally I'm very happy with my GP letting me lead regarding dosage. We have regular, every couple of months, telephone consultations. He makes a note of where I am, how I'm tapering etc. WE have an agreement that if I consider I have any PMR symptoms such as a flare and need to up the dose, that I will contact him. I'm now on 4 slowly tapering to 3.5mg. I think he has learnt a lot with all the expert advice I relay to him from this site!
Working with Rheumatologist doesn't have to be hard. Here is my experience with healthcare in Japan. I was refereed by GP to Rheumatologist with GP suspecting PMR. It took less then a week to see Rheumatologist. Since then, I only see Rheumatologist every 3 months, who works in local hospital. My blood test is done usually at 9AM(same hospital) and I see Rheumatologist at 10AM. By that time he already has results from a blood test sent electronically to him. Based on test and my description of symptoms he makes recommendation whether to reduce pred or not before next appointment. If there is a trace of inflammation ( and this happened several times) he advised to stay at the same dose. Las time I asked him should I reduce Calcium supplements and his response was - lets do DEXA scan and find out how you are doing in that area... Very easy to work with.
Similar to here in the US. PMR diagnosis is referred by PCP (Primary Care Physicians) to Rheumatologist automatically. I was diagnosed in October 2017 and saw my first rheumatologist in November 2017.
My GP diagnosed my PMR, arranged for a dexascan, had done blood work and noted high CRP and elevated ESR. He also advised me of taking calcium and vitamin D. Then he referred me to a rheumy who was terrible and very unprofessional, so much so that she even called me after I left a message cancelling my 4th appointment with her, to apologize for accusing me of lying about be told by her to put my pred dose up after a flare following her textbook taper. I was considered “atypical” because I was 55 at the time. She did a few tests to rule out RA, but never did confirm my diagnosis??
Now I’m overseen by my GP who is very supportive and let’s me control my own taper. He did mention that if I get “stuck” at a dose and can’t lower, or if I develop GCA symptoms, I would get referred to a rheumy of my choice.
Sounds like your taper is quite fast! I’d stay one month at each level, that has worked well for me. Even then I flared at 8.5 so currently at 9.5/9, taking it even slower this time around.
But remember - however slowly you go, you won't get below the level of pred that is needed to manage the current level of disease activity!
Yep. Listening to my body. Disease activity seems to be lessening a bit lately and along with my latest knee injection I’ve managed to slowly work up to a 25 minute walk each day, even 15 minutes on tennis court lobbing the ball around (no running), and golf for the first time in 2 years. So nice to be feeling more “normal” for lack of a better word. But, mindful of DOMS and incorporating activities very slowly, once per week and limited duration, also the golf cart helps.
Tapering down to 9, so far, so good.
Thanks...Gp wants me to stay on 10mg for a month then reduce by 1mg v slowly after that. I'm going away near end of 10mg dose, so think I'll stay on that for those two weeks before reducing. Listining to the advice here, seems that if uncomplicated, and if the GP is up to speed on PMR, then ok to stay in primary care unless probs.
Hello Daisyfield, I was intested to see your posting because it just happens that I saw a rheumatologist just yesterday after two and a half years with PMR which I have managed pretty much myself and with the benefit of this excellent forum.
My GP was quite prepared to make a referral but I chose to pay privately to see Dr Rod Hughes in Chertsey now that I live within a reasonable distance because as others here have mentioned not all rheumies are sympathetic or even up to speed on PMR.
My own PMR journey has been fairly uneventful but I wanted some understanding of the persistant pain in my face and jaw and more recently aching in my feet and lower leg. The latter is not related to PMR but is plantar fasciitis and Achilles' tendon which I can improve with specific stretching exercises.
Dr Hughes offered me a depomedrone injection which is a hefty dose of additional steroid on top of the daily dose to see if there is residual pain which cannot be accounted for by PMR. He suggested some of the pain could be fibromyalgia or osteoarthritis.
It's too early to tell yet but I'm so glad I went to see him because he listened and understood what I was saying, supported my own management of PMR , advised on the foot pain and left me feeling that I was more in control of PMR than it is of me, which I think we often find to be the case.
I would suggest that if you do feel you would like to see a Rheumatologist you go to someone who has an interest in PMR, or stick with a sympathetic and supportive GP who lets you find your own way with this tricky condition. Best wishes, Chrissie
I was referred to a rheumatologist after 2years as my gp said it must be something other than pmr as I should of been better by then! I waited 8 months,saw him and he told me to carry on tapering and doing what I was doing. I think he realised I had knowledge about pmr (from this site)and discharged me.🤔
Probably you are ok not to see a rheumatologist as you are taking steroids and responding well.I had to see a rheumatologist as no one was clear what was wrong
Did they find out what was wrong?
Yes was told it was pmr .I couldn't take steroids because of bipolar
I was referred quite early in my pmr, my GP is very good but my rheumatologist is excellent. Regular blood test etc. She also made sure the osteoporosis which I have was properly managed. There are some gooduns out there folks!!!
Hello, I'm new here!
My GP had no idea what was wrong with me! After a very frustrating and painful couple of months, I paid to see a private GP who suggested that it might me an autoimmune disease and referred me to a Rheumatologist. Again I had to pay privately or it would have taken another three months. I was lucky in that I could afford to pay but it still annoys me that I had to!
Is it common for GPs not to have a clue?
Hi Fion, welcome! Let's say it is not unusual for the diagnosis to take quite a few months and for some it's years. Is it pmr and/or GCA? Are you coping ok with pred? Just have a look around the posts and then ask questions if there is anything you need to know.
Thank you Poopadoop. I've just got pmr thankfully!
We always give advice to get to know the symptoms of GCA from dorset lady's handout. And from the gca stories in the pinned posts at the bottom of the page. It sounds scary but if you look at the past few days posts you will see one where a member almost self diagnosed when drs were reluctant. Knowledge is power....sometimes...
Yes, I agree! GCA sounds very scary. I have familiarised myself with the symptoms, just in case!
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