It is now 12 months since first being told by GP (also first time I had ever heard of it !!!) that I had PMR.
My Prednisolone journey so far has been;- started at 20mg March 2022 and gradually reduced to 6mg by beginning of February 2023 when I started to get pains in my hands, hip and neck.
I was out of the country on holiday at the time, so I put up with this for 3 weeks until I returned.
Once home, I managed to talk to GP 3 weeks ago who put me back up to 8mg and suggested I should drop to 7mg after 2 weeks if pain gone.
It has got better but not gone, so still on 7mg/8mg on alternate days, I have blood test booked for 3rs April so intend to stay at this level until we get the results.
After 3 previous cancellations I have my first, and face to face, appointment with a Rheumatologist tomorrow and I do not understand the role of Rheumatologists !!
My questions to you wonderful people on this forum are these;-
Why do we need to see a Rheumatologist?
Is the Rheumatologist going to take a different approach to PMR than my GP?
If yes, which one takes precedence?
As I am confident my GP understands me and PMR why should I not trust him to get me through PMR?
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hi, I can see your thoughts. To be honest I am surprised that you have been referred to a rheumatologist as I am in UK and have not been referred to a rheumatologist. I have had PMR for 6 years and my GP is happy for me to look after my PMR unless I have a problem.
My GP referred me to a rheumatologist straight away when she observed me to have symptoms of PMR. She organised my first set of blood tests and hip xray but the Rheumatologist saw me a couple of weeks later and has dealt with me since then. I would get prescriptions via the GP and could get a phone consultation with her if desperate.
No reason at all if everything goes smoothly. Who initiated the referral - the GP practice I assume? And when?
A good GP is preferable to a poor rheumy - and you can find all sorts of stories about the bad variety on the forum, From the ones who are offended a GP decided it was PMR and they disagree just for the sake of it to the ones who think PMR only lasts 2 years or less and try to force you to reduce far too fast. So try them and see how you get on.
It is quite normal for straight forward cases of PMR to be managed by your GP. It is more important that you have a doctor who understands these relatively rare diseases and the management of them with steroids. Ideally the doctor should be up to date with the latest treatment protocols. A confident but ignorant doctor can cause a lot of unnecessary suffering and ultimately prolong the whole experience. I would suggest that these qualities are more important than whether or not you have a primary care doctor or a Rheumatologist. The closely related GCA should be managed by a Rheumatologist. My PMR was diagnosed and managed by a very good GP initially, then he took the decision to refer me to a Rheumatologist. I wasn’t thrilled with this Rheumatologist who began talking about Fibromyalgia and I felt that he was dismissive. Following advice from PMPro years ago I was able to lobby for one of the best Rheumatologists in the country who practices from the next town to me. With some grumbling, my GP referred me to Dr Sarah Mackie, a leader in the field of our diseases, who practises from Leeds hospitals. This has been a blessing in so many ways over the years. I feel very fortunate especially as my PMR morphed into GCA/LVV after 4 years. I was also a subject in a research project, overseen, ultimately by her. This forum ( see FAQs) enabled me to understand what good, informed management of PMR/GCA looked like.
Is the Rheumatologist going to take a different approach to PMR than my GP?
If yes, which one takes precedence?
Q1. they may do, an Q2, the rheumy is the consultant, and expert in the disease.
But as others have said, you GP is quite capable of managing you and your PMR, unless it is complex and you have other serious health issues...Doesn't sound as if you have, so you may find Rheimy refers you back to GP.
In a way, I had a similar type story to you, in that after eighteen months with pmr, I developed pain in my hands whilst abroad. After consulting with this Forum, PMRpro recommended a five mg increase of pred, which worked absolutely fine.
In the seven plus years I was on prednisolone, I never once was referred to a rheumatologist. My GP understood pmr well, and basically allowed me to look after myself. This Forum saves the NHS loads of money!😇
Around 75% of people diagnosed with PMR never see a rheumatologist. People tend to be referred if they are a bit out of the ordinary, young, had PMR longer than two years, strange symptoms etc etc.
WOW so many different and varied experiences from Forum members.
As I am neither young nor had PMR for over two years and only seem to have the usual PMR symptoms, I guess I fall into the "bit out of the ordinary" category 🙃
I was referred after two years. Before that, it supposed to be managed by a GP. I didn't have bad GPs but didn't see the same one twice and didn't usually feel that they knew more than me (they had to look up the condition). But I flared at about 22 months in so they did refer me to a rheumatologist. And I do now feel more stable as there is some continuity although the treatment is not much different so far, except that he is specifically knowledgable about PMR and can follow up and order tests. It is early days but I feel more optimistic now and less as though I have to do all the thinking myself
I am under a rheumy having been referred as an emergency for GCA. I haven't seen my GP about my PMR/GCA since then (Sept 21). I wish I had. Not impressed with my rheumy at all, and he only sees me every 4 months. He's one of those who believes in a 2 year limit, so I have till Sept this year to come off pred!
I was only referred as I had other problems, firstly fibromyalgia & osteoarthritis, then hypermobility, Raynauds syndrome, carpal tunnel, probable sero negative arthritis and/or HEDS, which all fall under the rheumy ‘umbrella’! I was down to 3.5mg after 3 years (I had one bad flare which put me back). If you search my name, then look at my posts (there’s only a couple), you will see what happened in my rheumy appointment!! Just two weeks ago.
Mine is, too! Plus I really prepared for the appointment, typed notes & questions, even a copy to leave with him! I just managed to get the folder out of the bag, but didn’t get to open it! Good luck, no reason why yours should be the same as mine!! I think (just think) mine does not believe I have PMR. My CRP has only ever (3 weeks ago) risen to 8…he alludes to it in his letter, & he’s testing that at same time as cortisol. S x
"My Rheumatologist" is useless. I unfortunately have no GP at this time, but I am on a waitlist here in Nova Scotia for a new one. She does prescribe the Prednisone, but is the unreachable star as far as any "complications" arise. Also, she is a "let's get down to 5 mg." taper person and refuses to understand that some of us need a slower taper. I'm winging it here with the help of this very valuable forum. Had it not been for the expert panel here, I would have been a fish out of water since Jan. '22.
my GP diagnosed me at my first visit. After 2-3 visits he recommended a Rheumy. He felt rheumy knew more about it. Now my inflammation has gone up dramatically but my blood looks good & stable. I’m just so tired of it all. I try to keep moving but not overdue anything. I think my stressful situation with a Lewy body dementia spouse doesn’t help matters.
Having read all of the varied replies to my Post, thank you to all that replied, I have attended this appointment with my usual thought pattern, that if someone is trying to help me through my problem, I should attend it with an open mind.
The consultant appears to be very experienced and spent some time establishing my medical and physical condition plus my general wellbeing. We even discussed my hobbies, sporting activities and what my work entailed before I retired.
He briefly examined my hands and feet which are still swollen.
We discussed my treatment for PMR arranged by my GP, and he wants me to continue with Prednisolone, currently 7mg, reducing by 1mg every 4 weeks unless I have flare, in which case to return to previous level that was working. He intimated I would probably be on Prednisolone at least until the end of this year.
He arranged for me to have X-rays immediately after my appointment, of my chest, my hands and my feet ????
To run parallel with the Prednisolone, he has prescribed 15mg of Methotrexate once a week and 5mg of Folic Acid once a week taken 2 days later, starting immediately for 12 weeks.
I am to have blood Tests every 2 weeks for the first 6 weeks (had 1st one this morning) and then a further Blood test at the end of the 12 weeks.
My impression is that I am being well looked after ? but only time will tell if it helps
Well you can but see -no personal experience of MTX -but there PMR th of info in FAQs -but just be aware it doesn’t work for all. Hope it does for you.
"he wants me to continue with Prednisolone, currently 7mg, reducing by 1mg every 4 weeks unless I have flare, in which case to return to previous level that was working. He intimated I would probably be on Prednisolone at least until the end of this year."
I would jolly well hope so - MTX doesn't work immediately even when it does work. We are already at April just about, 7mg at 1mg per month takes you to December and our mantra is "The lower, the slower" And this is adrenal territory.
Do you have any advice on taking Methotrexate at the same time as Prednisolone please.?
I take the daily Prednisolone and associated pills each morning just before or after breakfast. I am inclined to take the weekly Methotrexate (Wednesday) and Folic Acid (Friday) at the same time as the others - good idea or bad idea ??
No idea really. My rheumy told me to take the MTX as a divided dose, half before bed and the rest the next morning as he finds it reduces the nausea effect. I took folic acid every day - once, especially 2 days after the MTX will not do a lot to minimise adverse effects. I take my delayed release pred before bed. But I only did it for 4 weeks before being unable to cope with it and I stopped. There may be something about it in the FAQs on MTX
My Rheumy told me to take the folic acid 2 days after the MTX to give the MTX time to work??.
When the Pharmacist gave me the MTX and folic acid last week, he repeated it, and it is printed on the label "to be taken once a week 2 days after MTX " so I guess I had better stick with that until my next appointment
Having now had 4 blood tests, at 2 week intervals, since my original Appointment, I received a telephone call from the Rheumatology dept. saying the most recent results showed my Neutrophils and White Blood Count were low, 1.3 and 3.3 respectively, the Neutrophils are much lower than they would like. !!!.
The immediate rection was that I should stop the MTX as it was leaving me very vulnerable to infection,. After a discussion about how I was feeling, (I played golf yesterday so a bit tired) and then checking back all 4 test results, it was realised that this was the trend rather than a one off, panic over !!!
However, they have arranged for a further blood test in 3 weeks rather than the scheduled 6 weeks, plus another appointment with a Rheumatologist the following week so that results can be analysed, and the way forward agreed.
Meantime I am to continue the 15mg MTX once a week, BUT I am to take the Folic Acid after 24 hours not 48. As I understand it, the Folic Acid nullifies the MTX, therefore the MTX will only be working for 24 hours instead of 48.
They said I should carry on with Pred as normal, currently 6mg per day, unless my GP says otherwise, which is unlikely as I have kept him informed about the MTX, and he is leaving it to me to control the Tapering depending on how I feel able, without pain.
Er - really don't see the difference whether it is a one off and that low or a trend and have reached that low. Either way, they are low and I would have thought a signal to miss the MTX for a couple of weeks to let them recover before it is an awful lot to recover.
I have now had an appointment with a CNS Rheumatology nurse who I think is very competent.
She has copied me in on a letter sent to my GP.
She felt my knees, hips, ankles and hands for signs of swelling joints or pain and in her letter to my GP says "VAS today is 10/100, there are no real tender or swollen joints, most recent CRP 1 mg/L giving DAS of 1,35 indicating disease remission" - comments please.
She confirms that in the most recent blood test, 10 days prior, my neutrophil continues to be low at 1.39 *10^9/L and says "but looking back his blood results show intermiient episodes of low level neutrophils even prior to Methotrexate. He has no signs of any infection, and all other white cells are within normal parameters" - comments please.
The management plan is to continue current medications, have monthly D MAR D blood tests for FBC, U&E's, LFT's and CRP with a further review in 3 months.
My feeling is that my local NHS are looking after me very well, this all seems very positive even if I do not understand the jargon. I am still on 6mg Pred and sometimes thinking I might go up a bit as I get occassional pains in neck and shoulders as well as the continueing pain in my right hand
"She felt my knees, hips, ankles and hands for signs of swelling joints or pain and in her letter to my GP says "VAS today is 10/100, there are no real tender or swollen joints,"
There wouldn't be in PMR.
"most recent CRP 1 mg/L"
It should be if you are on enough pred to suppress inflammation.
That doesn't mean PMR is in any form of remission other than drug-induced ...
Thank you PMRpro, as I said i do not understand the jargon or the reasons behind it.
You will recall I originally wondered why I was seeing a Rheumotologist assuming they only dealt with painfull badly swollen and disfigured joints similar to what my mother-in-law had.
From my initial apointment with the Rheumotology Consultant I understood they dealt with more than that, they do also deal with inflamation of soft tissue, which may or may not be PMR related?
The fact that they are checking my blood monthly for reaction to Methotrexate, and my GP is checking every 6-8 weeks for my reaxtion to Prednisolone, I remain optomistic that between them they will sort me out !!! eventually
Like many others on this forum, I am realising that there is no quick fix for this disease (I hate that word) and I have to rely on the Proffessionals that are looking after me to guide me through it. That also applies to the help and advise I get from you, DorsetLady and others on the forum that is invaluable, reassuring and very much appreciated
The feeling joints is a way of assessing disease activity in inflammatory arthritis - but PMR isn't inflammatory arthritis and doesn't cause swollen and painful JOINTS.
The VAS score is the Visual Analogue Scale, a way of turning pain into a number so comparisons can be made before and after treatment - but it is very subjective, often not at all objective.
A line is drawn 100mm long and the patient is asked to put a mark where they feel their pain is relatively speaking. 0 is no pain at all, 100 is the worst pain they can imagine. Above 30 is considered moderate pain.
I can have not a lot of pain/disease activity on those bases but the effect on my daily living can be a 60+ score - because constant moderate back pain is horrible. They don't examine for that. I have had an ongoing dispute with the PMR research bods about using the VAS score and joint examination because I think they measuring apples using a pear measure.
The trouble is, most of them are orientated on rheumatoid and inflammatory arthritis and just don't understand that PMR is different.
In January '23 I started having what the GP I saw in February on initial examination diagnosed as classic symptoms of PMR, based on my complaint of severe pain and stiffness on waking or being immobile for more than 2 hours durin the day. The pain and stiffness has not progressed since, still just affecting my lower jaw, neck, shoulders and arms, above elbows mostly though occassonally down to the wrists. My pelvic girdle, hips abd thighs, thankfully, so far have not been affected.
The GP who saw me as my own GP was on sick leave offered to start me immediately on Prednisolone; however, because I am already fighting ovarian cancee I asked if a comfirmatory investigation could be done to rule out any other cause for the symptoms. ESR and C-reactive protein was arranged. The results were negative, though apparently those tests are often inconclusive. I have been managing with nightly applications of Volterol, and until this week this has settled the symptoms four about 4-5 hours allowing me to sleep undisturbed. Now, the symptoms are becoming more troublesome. My oncologist asked if I had seen a Rheumatologist. I have not been referred as yet. In view of my oncological condition, I am anxious about starting on Prednisolone without concrete evidence of PMR, and the consequential risks of diabetes, osteoporosis, heart conditions and other distressing side-effects arising from being on prolonged high doses while already facing what I have to with ovarian cancer. On this basis, would I be justified in asking the GP for more investigations such as an ultrasound scan or MRI, or for a direct referral to a Rheumatologist upon receiving the CT scan results? Should there be no other obvious cause for the PMR-like symptoms, then perhaps the GP's diagnosis could be proven as correct.
Involvement of lower jaw could point to GCA, so what exactly do you mean? Jaw claudication? Pain when you chew for a few moments, which then stops when you stop chewing - or something different? Lack of symptoms with lower joints may also indicate GCA , so I think you do need further investigation - and yes probably referral to Rheumy.
No just feels mildly stiff and achy on left or right sides, or both occasionally. GP, and information online states symptoms of GCA pain and tenderness of temples, severe headache, vision chsaanges and feverishness. I have had none of those.
I do know what GCA symptoms are - but you don’t necessarily get them all at once…. they build up over time…so please don’t discount it out of hand. You still need further investigation.
The best option for PMR is a PET-CT scan which shows sites of inflammation, I doubt you need worry about pred per se - it is frequently used in oncology - and after 13 years at high for PMR doses (much of it at 10-15mg/day) I have no sign at all of diabetes or osteoporosis and the only heart condition I have (atrial fibrillation) is due to the PMR and not pred, I had it long before pred was ever offered. Most of the common side effects of pred can be mitigated or avoided altogether when you know how - and the first most effective approach is to cut carbs drastically, especially processed carbs and added sugar, and limit high carb fruit. I gained weight with the physical limitations of PMR - I lost it while taking pred by cutting carbs. Cutting sugar is also good for the inflammation
Thank you for giving explaining your journey on Prednidolone. While having taken steroids as an anti-emetic, the dose s were low and very short-term. It is reassuring t o see that you have escaped some of the many scary risk factors and side-effects while on Pred. It is my main cause of worry. I already follow a similar diet to my Type II diabetic husband, so cutting out those carb's would not be challenging for me. Cushings symptoms fill me with fear though, having only now begun feeling like me again after chemotherapy.
I was admitted to hospital several years ago at a point when I had been put on methyl prednisolone when I moved here where prednisolone is not routinely used. I had previously gained weight with untreated PMR, I didn't gain weight after starting pred but it did move around a bit, settling around my midriff and at the back of my neck, my face wasn't too bad. With methyl pred I gained a lot of weight and by the time I was in hospital I was deemed "Cushingoid". After going low carb I lost 35lbs in weight over about 18 months - and all my doctors agree, you could not describe me as "Cushingoid". I'm overweight, but I have been most of my life, it has been a constant battle! Others who were sensible and cut carbs early never gained the weight though most people do get chubbier cheeks.
I am comfortable with my internist (GP) and have not been referred to rheumatologist. He has had several patients with PMR. Between him and this forum, am feeling manager. And DEF change your diet if you are not low-carb/low sugar. Pre-diabetes can turn to diabetes pretty fast. I regret not having changed diet a couple of years ago before PMR.
BTW, I have been on various doses of steroids but nothing lower than 20 mgs of methyl pred since diagnosis in late Nov ‘22 when I starter at 40 mgs pred. I am now on 24 mgs methylpred but have been slightly symptomatic — a burning ache—in right shoulder for several months. Now I am not sure if the ache there is PMR or something else since the rather high dose of methyl pred isn’t helping knock it out.
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