Hi all you helpful people. I'm a survivor of PMR (took 6 years to get over it), and a new GCA patient -- having been diagnosed 2 1/2 weeks ago by temporal artery biopsy which was positive. I was immediately put on 60 MG prednisone, and was advised to decrease to 50 after 2 weeks. It's my GP and ophthalmologist who have gotten together to discuss and recommend my treatment UNTIL I can get an appointment with a Rheumy. So here's my question.... why see a rheumy?
I suffered from PMR for 2 years without a diagnosis, having gone to the GP, a rheumatologist, physical therapy, and a physical medicine doctor -- NONE of whom recognized the OBVIOUS signs of PMR. It was not until I read an article in a newspaper about a woman with similar symptoms that I self-diagnosed my own condition and confronted my GP (who eventually agreed with it). The Rheumy was totally worthless (I know that's not true with all of them). He almost feel asleep while listening to me describe my years of pain.
I have come to realize that these conditions (PMR and GCA) are so rare that they are not on the doctors radar -- the exception being that ophthalmologists DO KNOW AND LOOK FOR GCA. So once we have a diagnosis, why the need to see a Rheumy? I mean, it's not like they know anything about GCA. They certainly didn't know anything about PMR. So why see them?
If the answer is "so they can prescribe different medicines during a taper routine," how can someone who does not understand the disease prescribe anything for that disease?
I'm not trying to be negative here, but I simply don't understand why everyone runs to these rheumies.
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montebello
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I run to mine because she is a leader in the field of PMR and GCA. She is also heavily involved in research projects on the subject. She has knowledge and experience to bring to my treatment. She has a consultants access to MR1 Scans CT Scans and specialist ultrasound scans. She is able to access them quickly so she knows what’s going on. She is privy to and often the leader of the latest research. She understands the treatment and drug options open to us.. My GP does not have any of these assets, just an outline knowledge of what the diseases are, often with out of date unhelpful information. She cannot expect to have an in depth understanding of every disease she encounters.. I know that I am fortunate and some people are not so lucky. I am grateful to have someone who can access fast accurate diagnosis and treatment due to her seniority within the health system.
You are very rare in finding a good one, i am still in as much pain today as when i began my journey , Mine dont seem to care of have a clue . I have gone against all my beliefs and am going to see a private guy because there is at least a 9 month wait. The only person i was offered then was the first rheumy i saw and she didnt have a clue !
Hope you have made sure the private one also has a clue - because private ones are all basically NHS ones with too much time on their hands They can also be useless if you get the wrong one, just it costs more.
Research him Viv everything you can get hold of on-line etc.I saw an Opthalmologist privately, recommended by my optician and it was a complete, unfocused waste of time and money for me. It can be a bit of a lottery.
Well, autoimmune diseases are their specialty. Not sure who else would cover it. All that said, some are definitely better than others. My rheumy was the first to recognize and diagnose me - after months of seeing pretty much everyone else.
If all rheumatologists were like SheffieldJane’s, that would definitely be why we’d all run to them. I would, anyway!
However….I am one of those who has a rheumatologist who seems neither to know me, nor to be interested in me. He contacts me once a year by text, and once by phone, well, so far that’s been the pattern. I frankly dread his contacts because he doesn’t listen to me, and just a) repeats a mantra about getting off pred and b) vaguely predicts that if I can’t, he may have to put me on something worse….
So why do I ‘see’ him? Really because here in the UK, the protocol is that there should be fast access via a GP to a consultant with queries about GCA, which I have as well as PMR. If I only had PMR, I definitely wouldn’t see a rheumy…..or rather I wouldn’t play my part in the support that my GP may or may not feel from his existence.
And the conditions are not that rare….hopefully someone more knowledgable than me will know the incidence rate.
And I’m not wanting to be negative either. I’d say if you find a good rheumatologist who’s interested in PMR/GCA , stick to them like glue!
75% of people just with PMR never see a rheumatologist, they are treated purely by primary care. PMR patients tend to be referred to a rheumatologist if they are particularly young say under 50, the GP is not very sure of the diagnosis or needs support or they have had PMR for a long time for example. With GCA patients they should all be referred to a rheumatologist as it is a more complex disease.
I was sent to a rheumatologist a year before diagnosis & he failed to diagnose PMR. He sent me for numerous tests trying to diagnose it as it got worse. It eventually morphed into GCA & was diagnosed then by a GP. The rheumatologist told me that my PMR progression was very unusual, but following this site , it wasn’t. After diagnosis & a later flare he wanted to put me on methotrexate which I declined . If I have to go to another one, I will refuse to go to him. So there are obviously good & bad rheumatologists
I have been so lucky as my rheumatologist specialises in PMR and GCA.He is very reassuring and l have access to his secretary who passes concerns onto him and he gets back to me if necessary.
I saw two useless Rheumies at first (over 10 years ago)...now I have one like SJ...he researches into PMR, has access to lots of info that will hopefully improve things in the future for patients to be diagnosed and treated....have been scanned and things discussed to move forward.....It is often out of the hands for GP's, it was their idea to refer me....
I think a GP will always refer a suspected/confirmed case of GCA to a Rheumy as that is the normal/standard protocol and it is a more complex illness which they should be more specialised in. As SJ says they also have the ability to refer their patients for more advanced treatments than the GP can. However, as is sadly, often shown on the forum there are Rheumies and Doctors who are not as "well informed" as some of their colleagues, and I guess there is a certain amount of luck as to which you get.
Rheumatology organised my X-rays, ultrasound, MRI and Physio. (It is also much easier to get a pred prescription from them than fighting through my GP's receptionist. 😉)
My GP diagnosed PMR straight away from my symptoms but wanted me to see a rheumatologist just to be sure. The wait time for an appointment was long so I went private for the first consultation and a couple after that one. Haven’t seen a rheumie since then and that was nearly 4 years ago. I manage my taper myself and my GP seems happy for me to do this.
My GP referred me to a rheumatologist on the basis of blood tests , just to find out what was going on . Because of the length of time I was going to have to wait (3 months) and the pain I was in, I paid to see a consultant privately. I now see one of his colleagues on the NHS. She is approachable, understanding and efficient and I'm very happy to be under her care !
Hello, montebello.With respect, your view that, ".....they (rheumatologists) know nothing about about GCA...." is a sweeping statement and puts all rheumatologists under the same umbrella. There are good rheumies and poor ones as frequently acknowledged on this forum and we read of experiences ranging from useless to excellent.
I was undiagnosed for months by my GP and in excruciating pain. Realising that my condition was worsening by the day and unable to find the cause through many blood tests, she acknowledged the fact that she was unable to provide the care I needed and finally referred me to a rheumatologist who immediately diagnosed PMR and my journey to remission began. My experienced and trusted rheumy worked alongside a multi-disciplinary team and if he hadn't recognised that something serious was happening inside my body and hadn't allowed access to these other specialists it is probably true to say that my asymptomatic large vessel vasculitis may not have been discovered for years by which time goodness knows where I'd be now. My rheumatologist (now, sadly for me, retired) is an expert in PMR/GCA having spent most of his career in research. How many general practitioners can say the same or even similar? The answer lies in 'general' and unless the GP has specialised in autoimmune diseases he/she would be unlikely to serve a sufferer well. There are exceptions to this of course, but it must be remembered that many GPs have never come across a case of PMR/GCA in their whole career. This being the case, how can they be expected to manage a patient with a chronic, systemic disease?
No apology needed 🙂. I hope you find a rheumatologist who is knowledgable, will listen to your concerns and respond appropriately.
Someone on this thread mentioned researching those in your area. I see you are in the US so it's highly unlikely, of course, that anyone will here offer a recommendation but you should know that there are members of this forum who will offer sound advice and suggestions to people who are struggling or confused. Please don't hesitate to post if you have a question or a concern as many are likely to have had similar experiences to your own and are able to offer support. We love to hear of successes, too: lifts us up and gives us hope.
I also see the wonderful Rheumatologist that SheffieldJane sees and echo everything Jane says. Through her, I have had access to CT scans and a PET-CT scan which enabled her to diagnose extensive GCA-LVV in my aorta and throughout the rest of my body. A GP would not have had the experience to know where to start on that diagnostic path - that's why they're called "General" Practitioners. However, when I was diagnosed with PMR 6 years ago, my GP knew immediately what it was. I am a very fortunate person!
We do hear about other excellent Rheumatologists on this Forum, but sadly, we also hear about those less so.
As you are in the US, are you able to 'shop around' or ask your ophthalmologist to recommend one who really does know about GCA?
My ophthalmologist has recommended a rheumy, but I can't yet get an appointment due to his waiting list. People seem to think that we have easier access here in the states but that's often not true. Depends on where you live I suppose
In the case of PMR in the UK you often don't see a rheumy. In the US - many PCPs refuse to do something they consider a specialist field. In he case of GCA you do need a specialist and traditionally that is a rheumy. However - since your ophthalmologist diagnosed it and presumably ordered the biopsy, there is no real reason why they couldn't keep you on unless they don't want you.
They aren't rare - PMR is the most common inflammatory rheumatological condition in over 65s. And GCA is the most common vasculitis. It depends on the patient population. GPs will see loads of PMR if they have a large cohort of older patients, however may never see a case of GCA in their career. Even in a large practice, various doctors develop an interest in different things - and the patients soon work out who is likely to be helpful and who not.
Like SJ's, my rheumy is a world leader in the field and lots of rheumies are very good. Some arrogant ones think PMR is beneath them, it is simply a fancy name for an aspect of old age that responds well to pred, job done, let the GP get on with it. Wrong on all counts - and some rheumies have realised that and are now getting "in" to it - partly due to the pushing of members of this forum.
I have read statistics that PMR affects 5 out of 10000 people over the age of 50, and GCA 1 out if 10000 people over the age if 50. Does this sound right?
And depends where you are - some regions have higher incidences than others, some countries have higher figures. The further north you are in Europe the more there is, more Scandinavian genes. In the USA there is a high incidence in Minnesota in Olmsted County - and the Rochester Mayo Clinic has done a lot of work as a result. There is a low incidence in black and Asian populations.
Usually the rheumatologist is more aware of GCA then most doctors. So many of my doctors told me they heard of GCA in med school but never had a patient.
In my case, no one knew what was wrong with me. I went to quite a few different doctors. The first time I saw my rheumatologist it was the first thing he suggested. Of course I thought he was crazy. I never heard of GCA and the thought of having a biopsy was even crazier. I said ok only because I was desperate. I thank god I found him. He actually specializes in GCA and I found him quite by accident
Rod Hughes in Chertsey does both private and NHS work, often transfers private patients to his NHS list and would be my choice if I were looking for someone in that area. People travel from much further to see him!
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Report from my visit to the rheumatologist 
Update on GCA ‘flare’
Cheek bone pain, deep earache on left side of head plus headache
Frustrated re Symptoms suggesting GCA
Not more drugs.........
