Long term PMR

[podo]

Hello, I'm a long term sufferer of PMR (just coming up to 14 years), with 6 relapses so far! Having read an excellent book "Polymyalgia Rheumatica and Giant Cell Arteritis" from the Oxford Rheumatology Library, I'm becoming convinced that my "PMR" as diagnosed is infact more likely to be a form of Extra-cranial Large Vessel Vasculitis (LVV). I intend to ask my GP for referral to a specialist rheumatology clinic (Southend with Prof. Dashupta would be ideal) but wondered whether there are any other NHS clinics in the south that can offer the imaging diagnostics that I believe would be necessary to either confirm or rule out LVV. [I live in Salisbury]. Any experiences would be welcome.

[PMRpro Ambassador]

You are far closer to Chertsey and Rod Hughes. I would travel from here in Italy to see HIM! On the other hand - might a referral to a LVV specialist not make more sense? For example, Prof Mason at the Hammersmith?

Like you, I have had PMR for more than 12 years and I too am fairly sure that it is extracranial LVV that I had/have. The doctors I have discussed it with think I may well be right.

The imaging diagnostics you speak of are just PET/CT or PET/MRI - which should nowadays be available at most large hospitals that have a nuclear medicine department available to them but I suspect the queues tend to be a bit long still and they are used predominantly for cancer patients. I am told by a friend on another forum that if you are taking pred at any level it can and does interfere with the result (it suppresses the inflammation enough to mess up the result) so most doctors would ask you to stop taking it before the scan. I do know a couple of people who have done so, got a negative result and subsequently struggled to get their symptoms under control again after stopping the pred. Some arteries can be imaged using ultrasound.

Out of interest, have they been "total" relapses - were you off pred altogether and then the symptoms returned or were they flares as you reduced the dose? And what signs/symptoms do you have that make you feel LVV is more appropriate as a dx? I had scalp pain for about 3 or 4 weeks which then disappeared altogether and very mild jaw discomfort, more tiredness when chewing hard food than pain, plus a permanent sore throat and cough. I also had thigh claudication right at the beginning but once I was eventually on pred I have never noticed it again. 15mg was plenty to bring about the PMR miracle but it was a long time until I got below 9mg - but I also suffer from myofascial pain syndrome and getting THAT sorted out separately has allowed easier reduction. I had 5 years of PMR and no pred - it never went into remission in that time and, as far as I can tell, it has not gone into remission in the 7+ years I have been on pred.

[podo in reply to PMRpro]

Thank you for that, I will check out both Chertsey & Hammersmith. Five of my relapses were after coming of Pred completely, symptoms returned in about 2 months. The latest, last April, was while I was still on 2mg, having been at that level for 6 months. I have a number of reasons for suspecting LVV; firstly, I was initially diagnosed in 2003 on the basis of SED>60, was prescribed 40mg of Pred & told it was PMR. As I have recently found out, that SED level is more indicative of some form of Giant Cell involvement. I also suffer little pain, just extreeme weakness and lack of movement. Initially this was in Arms/Shoulders followed by Legs/Girdle but in more recent relapses the Legs/Girdle only were affected. I have also developed hoarseness & a dry cough in the past couple of years. Basically I would like to determine whether the initial diagnosis of "pure" PMR was correct, in which case I carry on as before (but maybe consider Methotrexate) or if LVV is present, I would like to determine the extent of vascular damage and request regular scans for aneurisms etc.

I was rather favouring Ultrasound scanning to determine things but maybe MRI would be better?

BTW, I have just this year started a local Salisbury pmrgcauk help group which has been great for meeting others with similar problems, although as you no doubt know, every experience of these nuisance diseases seem to be unique!

[PMRpro Ambassador in reply to podo]

Yes - on the forums over 7 years I have "met" hundreds of patients all over the world. I honestly don't think I have found two who would say "snap"!

My "flare" this year started with sudden onset breathlessness on exertion (i.e. walking up a very gentle slope into the village that the day before I had breezed up. Initially we thought a virus of heart - and then, 3 weeks or so later, the PMR symptoms appeared. All back to where it was again on 9mg pred - but I would like to get back to 5mg...

it is slowly being realised that maybe PMR doesn't just come in one version - and that would certainly account for the 3 groups that are fairly obvious. Personally, if 5mg pred manages my symptoms I'm happy to stick there without trying out anything other tablets - I take enough already! But I think I would consider tocilizumab if I were offered a trial!

I, too, like the pocket book - but I do warn people if they mention it that it is really not suitable for Joe Public and there are things in there I would dispute from my experience. It is being hoped that the editor Dejaco will come to my region as Director of Rheumatology - he is from just down the road but works in southern Austria at present. But I showed the book to the Medical Director at my local hospital - who has a special interest in GCA and who I see in preference to the rheumatologist since he covers all my medical problems!

[Robert17]

Podo. I have read that book too (or at least part of it.) I found it very heavy going and is really for medical people I think. By far the best book I have seen from the plethora of publications available is "Polymyalgia Rheumatica and Giant Cell Arteritis"by Kate Gilbert. She is not a medical person but is deeply involved as a Trustee of the PMRGCA charity and is a past sufferer.

I have had PMR for nearly 5 years but am not responding well to Prednisolone having constant flare ups which require going back to higher doses and consequently an accumulating large amount of steroids in the system. As a result, I have recently referred myself to Prof Dasgupta and immediately things started to happen. In the past few months I have had a PET/CT scan, an Ultrasound scan, a chest X-ray. an ECG and an echocardiogram and am now on fortnightly blood tests. The Professor was looking for the possibility of large vessel vasculitis but the PET scan was negative in this respect. However, the ultrasound was positive and the Professor is certain now that it is indeed large vessel vasculitis rather than 'pure' PMR. So PET scans can produce a false negative since they can be influenced by the effects of Prednisolone.

He is part of the Southend research group which is well documented as well as a the co-author of the book you mention. He has had some successes with his patients by prescribing Leflunomide which is a DMARD and works on the immune system in a different way from steroids, the hope being that it is possible to reduce the Prednisolone intake when in combination with the Leflunomide. It is a toxic drug but, in the Professor's view, not a toxic as taking high doses (ie over 10mg) for a long period. It can give rise to hypertension amongst other things so he had asked me to have fortnightly blood tests at my GP surgery for the time being. It can also affect the liver so alcohol should be no more that 4-8 units a week. I am also checking my blood pressure daily on a home monitor.

I have only been on Leflunomide for 3 weeks so I cannot say yet if it working. However, I have had no adverse reactions so far. Apparently it can take 4 to 8 weeks before the drug kicks in.

Southend is not far from me although it's an awkward journey having to use the M25 and the Dartford Tunnel, often in the rush hour and I don't know the other consultants who have been mentioned. What I would say is that I feel so much better having taken control after several years in the wilderness with little or no proactive input from my GP concerning the management of the disease. One problem is that the Professor practises in a different Health Authority area from my GP and there is no way he can access my medical records directly. So I am involved in a messy process of getting information myself and sending to him or asking my GP to send it. This apparently requires printing every thing off when a page is refreshed with new information and sending it either by post or scanning it into an e-mail. I am a little concerned that this process could fall between the cracks from time to time so I have been doing it myself. Something to consider when going outside the area.

[podo in reply to Robert17]

Thank you Robert. I also have Kate Gilbert's book but was aiming to go a bit deeper into my symptoms. They do seem keen on Ultrasound at Southend and that does seem to be a good technique. Did you get a NHS referral to Dasgupta or did you go privately? Will be interested to hear how you get on with the Leflunomide.

[Robert17 in reply to podo]

It was not an NHS referral because I wanted to start on getting something (anything) going as soon as possible. I had been referred to a different local consultant some years ago by my GP but I was only seeing him once a year and it was really just an annual check up. My allocated GP, on one of the rare occasions I was actually able to see her, was very supportive from the outset and has been helpful with the communication issues I mentioned before. I have a feeling it is increasing her knowledge as well especially as I am only the second patient in the practice now on Leflunomide.

I am lucky in that I was in my employer's health insurance scheme with Bupa when I was working and was able to keep it going at a discounted rate after I retired. It is still quite expensive and had often considered cancelling it. I'm glad I didn't now even though I had to pay a fairly hefty excess before Bupa picked up the rest of the bills. One point to note, with Bupa at least, is that they do not cover ongoing chronic conditions such as PMR but will cover any action required to deal with an 'acute' flare up together with any diagnostic tests required and follow ups with the consultant.

[jinasc in reply to Robert17]

Robert 17

PMRpro co-authored a book 'Living with PMR & GCA', written for patients by patients.

This was written in conjunction with PMR&GCAuk North East Support Charity Reg No 1138409.

Wesbite: pmr-gca-northeast.org.uk

[Retailmonkey]

Dr Lorraine O'Brian and the team at the Nuffield Orthapedic Centre in Oxford do ultrasound scanning and are monitoring my GCA on a regular basis (inflamation both in temples and under arms slowly reducing). The guy who does my scanning started as a radiographer in Portugal before coming to the Nuffield as a result of its training. He is very good. It is also a centre for training in scanning for specialists from around the world (already been used as a guinea pig for8 trainees)

[trish29]

Good Morning pods..

HeLloyd pods, How interesting to read your post and to find someone else who has had long term PMR as I have had PMR for about the same time and getting frequent flare-ups with different types of problems, Lymphedema and Osteoarthritis in London knee and hands. As PMRpro has said that Dr Rod Hughes at Chertsey is very good ,caring,understanding and very patient with the likes if me who has had this condition a long time, He gave me a Depo medrone injection for my latest hiccup which has prevented me from decreasing steroid and my pain has been about 3 times my normal pain. My GPS haven't been terribly helpful,They did do some Blood tests and a Dexa scan but forgot to send them over to Dr Hughes. St Peters Hospital at Chertsey is a very Good Hospital and we never hang around for the Appointment. I believe in Dr Hughes because He Never Gives up on me and this last incident has knocked me for 6 and I had to go into him in a wheelchair this time around rather than my rotary walker and he pushed me out again. Best wishes and Good Luck trish29

[trish29]

I am sorry poda.i see on my original post that your name came up as pods..I didn't spot it and I am learning to use a New Tablet..my old one bit the dust. trish

[podo in reply to trish29]

Hello Trish, thank you for that feedback, it looks like Rod Hughes is favourite in this area. I am seeing my GP soon so will try for a referral. BTW my "name" is podo but I've been called a lot worse over the years! Cheers.

[trish29]

Hello podo ..yes Dr Hughes is so highly thought of that everyone wants to clone him !! With his busy schedules he still finds time to come to the meetings at PMR/GCA of Surrey at Chertsey to give a talk. I don't get very far with my GPS and yet again I have to see a new one next Monday as Dr Hughes wants some paperwork sent over to him. Best wishes trish