At the rheumies conference.

[Polywotsit]

Hi everybody

I have just come back from a day at the annual British Society of Rheumatologists' conference in Glasgow (the sun was shining up there). Prof Dasgupta had invited me, and Jean Miller of the Scotland group, to speak at the Special Interest Group on PMR and GCA. Now, two years ago there were about 30 people in the room for this SIG. So imagine how good it felt to go in the hall this time and find over 150 people! This just proves beyond doubt that the rheumatology community is now starting to sit up and take notice. It was a privilege to speak to them about some of the new things we are doing, like this forum, and getting onto Twitter to spread the word about the dangers of undiagnosed GCA. But I think it was a bit of an eye-opener for the consultants too. I don't think they always realise how much patients hate being on steroids and how we would try almost anything to get off them. Or how difficult we find living with these illnesses.

There was news of research taking place into the use of new drugs, particularly tocilizumab (an immune suppresant) and lodotril (which is a slow release version of prednisolone). Also a research project based at Keele University looking into how PMR and GCA are managed by GPs in primary practice. There are two schools of thought among the rheumatology consultants. Some think that only the most intractable and 'atypical' cases should be referred to a specialist. Others think that all cases should be referred to consultants, because otherwise the consultants are only basig their studies on atypical cases and not on typical ones. What do you think?

Thank you all for participating in this forum!

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I think that all new cases should be referred to a consultant. GPs cannot be experts on everything. Mine tried to get me to reduce from 15mg to 10mg just like that. Thank heavens I had seen your website and successfully argued that this was wrong. With hindsight I would never have coped. Also a rheumatologist speaking to the Bristol Support group meeting said that only cases referred to hospitals are counted so there is a serious underestimate of the number of sufferers which must lead to less funding for research.

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I agree Pat, many health care professionals, both in the NHS and the private sector missed my diagnosis for over 10 years and I had never heard of PMR until I googled my symptoms as a last resort. Luckily one new locum at my GP's survery picked up on it and I had blood tests over a period of 3 months before being put on steroids. No referral has ever been mentioned, so how does anyone apart from my GP know I have this condition? I think I have as much right to be included in any 'poll' as anybody else, or is there some reason for my exclusion, I do take this personally I must say, and I feel as if I am being brushed aside even though I told my GP that I believe (retrospectively) GCA was the cause of my mother's death. She was in such pain and was also misdiagnosed as having a 'virus' by inadequate or misguided medical intervention....the point being, how many more sufferers are being excluded from research due to inadequate knowledge, training, research or facts? This will only receive credibility I fear if it is 'out there'. I now know of two more people who have this condition, one in my remote circle of friends who was also misdiagnosed for a lengthy period, and another person who lives in a friend's village and whose circumstances I am unaware of. Two more sufferers.....are they only known about by their GP's I wonder? And we are the ones who have received a diagnosis now. What about the ones undiagnosed as yet......more for the 'list' I think which will bolster the percentages, so yes a grave miscalculation is I fear being made based upon just the atypical referrals. Anyway, who says a condition is atypical? Mine is mainly although not all on one side of the body....is that atypical? I get a twitch in my tongue on the left side and not the right, is that atypical? We are all atypical in this.

[Annodomini]

I suspect there are as many symptoms as there are patients! My PMR was diagnosed, even before I managed to see my GP, by my doctor sister in New Zealand, by phone! Having said that, as soon as I staggered into my doctor's surgery, he immediately said PMR and asked questions to make sure it wasn't also GCA. All the GPs I have dealt with at our health centre do seem to be well clued up and, what is most pleasing, also trust my judgement about the level of pred I feel comfortable on. If all else fails, i can always phone New Zealand!

[spotshouse]

My GP recognized my symptoms as PMR, then referred me to a specialist. My specialist confirmed the diagnosis but would not listen to my concerns or problems with medication. I eventually wound up going back to my GP, because he actually listens to me. I can't try a different rheumatologist because I am limited by my insurance.

[pennyw Administrator PMRGCAuk team member]

From my experience so far I definitely think it would be better for all new cases to see a specialist as soon as possible. I am due to see one in two weeks time but I was diagnosed with PMR last November - for over three months before that I had been prescribed with tendonitis.

My GP told me to reduce from 15mg to 10mg after four weeks and all my symptoms returned. I went back up to 12.5mg after reading comments from people on this forum and have now reduced slowly to 10mg. The aches that returned after my quick reduction have never completely gone since then. My left ankle is permanently swollen and I can hardly walk on it for the first part of each day.

My GP says as he has 100 patients with PMR on his books I should trust him to prescribe and that I should be much lower than 10mg. He also tells me each time that he is not 100% sure I have PMR.

I had to ask for the rheumatology referal.

I have a friend who has had PMR for three years and sees another GP in the same practice as me. Her GP has recently become concerned because he just noticed she had not been prescribed any calcium tablets and they are now concerned about her bone density.

I am hopeful that the rheumatologist will be more helpful and informative.

[Celtic PMRGCAuk volunteer]

"Others think that all cases should be referred to consultants, because otherwise the consultants are only basig their studies on atypical cases and not on typical ones. What do you think?"

My first thought was that all PMR and GCA sufferers should be referred to a rheumatologist as it seems as though there are GPs around who have either never come across a patient with either of these conditions, or do not know how to handle the steroid reductions, which is borne out by their advice in some cases to reduce in large amounts thus incurring early flares in the disease.

However, my second thought was that having been referred to a rheumatologist at the outset of my illness who, in spite of putting me through numerous scans and tests, failed to diagnose me throughout many months of being bedbound and attending appointments by ambulance and wheelchair! Fortunately, a year later a second rheumatologist diagnosed both PMR and GCA (where 3 GPs had failed!) and life improved!

So my third and final thought is that yes, everyone should be referred to a rheumatologist - as long as it isn't the first one to whom I was referred!!!

Thank you Kate - it's good to hear that the conference was successfull and that word is getting around.

[Bryonny]

From my own experience with my mother, I think individuals with PMR and/or GCA should be seen by a consultant, if only to confirm the diagnosis and ensure correct treatment is implemented.

Unfortunately, my mother was misdiagnosed for nine months. It was only when I entered my mothers symptoms onto an NHS website, and everyone of her symptoms were listed, that I believed she had PMR and GCA, the latter described as a medical emergency. Fortunately, her GP listened to my concerns and saw her immediately, when he examined her he started her on 80mgs of Prednisolone.

Just over four months on, my mother has only been able to have her medication reduced to 22.5mgs and with long term high dose steroids I am concerned about the short and long term side effects of this medication, however, I feel more confident about her ongoing care with her management being shared by her consultant and GP. In many ways, my mother has made great progress.

It has also been surprising how many other people we have spoken to have or know someone with PMR. I would really like to support my mother and others with PMR and become proactive to raise awareness with health care professionals and the public. It would appear from reading comments on your website and reading medical papers that the earlier a diagnosis is made and the correct treatment implemented the better the outcome for the patient.

[Pipistrelle]

My GP referred me to a rheumatologist, but had discarded PMR as a diagnosis because I was in my early 50s -- without the referral who knows how long I'd have gone around in circles for treatment. In addition she wanted me to take a very high dose of prednisalone to manage a connected problem with joints -- which I did not do, instead just slightly increasing the dose (as recommended in rheumatologists' guidelines) and using NSAIDS (on advice of an orthopedist who also has had PMR himself). I think cases do need to be referred for specialist oversight even if day to day management goes to the GP; but when some rheumies are still prescribing very high doses of steroids initially for PMR (as opposed to GCA) there's clearly a considerable lack of knowledge of current thinking on PMR by specialists, much less GPs who regularly seem to put people on quite high doses going by chat on the PMR/GCA forums.

I am glad the conference was well-attended -- I really think there's very poor awareness of the reality of this condition amongst the specialists and what patients deal with, probably particularly because most patients are older? I also think there's a lot of misdiagnosis and underdiagnosis -- especially amongst men who I think tend to just tolerate the pain and believe it is something else. A retired rheumatologist family friend is one amongst several retired male doctors I know who have or had PMR; the rheumatologist thinks it is pretty common for older people -- and he has had it for a decade.

And yes, all of us hate steroids, I think! I am excited about the time relase prednisalone which has done very well in clinical trials for people with rheumatoid arthritis and it makes so much sense to take something that more accurately duplicates how the body releases cortisol than one big dose in the morning. I think for most of us, morning stiffness is the single worst part of living with this.

[euabba54]

I have R.A and PMR.

I was almost bed-ridden when my daughter's friend recognised my symptons as being like her mother's, and insisted that I get a referral to a Rheumatologist.

What a life-saver! I had been in increasing agony for some years and being prescribed Celebrex for Osteoarthritis. It was not helping.

In my view, the GP should have sent me to the Specialist ages before. Tests soon provided some answers. I had been at the stage where I could do little for myself, but with correct intervention I soon began to pick up ..mind you relapses do occur , but I have learned to cope and remain as positive and active as possible.

I like the idea of seeking Specialist advice, and without this I hate to contemplate what things would now be like for me. I am so grateful for my Specialist (and my daughter's friend!). Best Wishes and a Merry Christmas,

Diane.