Saecond time round with PMR & ?GCA

I had a first appt last week with a different rheumy from my first PMR episode of 3 1/2 years. She greeted me wit 'why have you been sent to me instead of X ? Why are you here. I replied that I had a recurrence of PMR. Well she nearly fell off her chair laughing, and informed me that to get it twice was sooo rare , it really never happened etc. I said that PMR pain was a very particular pain not like any other and definitively recognisable, so she muttered mis diagnosis. I then mentioned that I was worried about GCA, having probably had it last time. I had a very sensitive hairline on the left and the top of my head plus a stiff and uncomfortable right jaw. She did feel my jaw, but said there was NEVER pain in the jaw, nor stiffness, sometimes I find it difficult to open my mouth and can't bite.

I thought this might amuse you. Luckily I know a bit and can stand up for myself, and my GP was horrified when I told him. Oh , and Stephen Trotter in his book says 50% of patients with GCA have jaw or tongue claudication.

I had the greatest difficulty in keeping my rag and nearly lost it, she talked down everything I was doing, diet, supplements etc. I am to see her in 6 weeks when I am to be off steroids, and she will give me a diagnosis after lots of X Ray's .!!! I am after all 84 and according to her everything is wearing out.

I think I might just get a referral to another consutant, I am told Dr,Hughes in Chertsey is knowledgeable.

This is such a wonderful support group, it is the first I read in the day. I wish everyone a healthier and pain free 2017

18 Replies

  • Oh dear, Mournriver, being in pain with PMR is more than enough to deal with without having to deal with such ignorance from someone who should know better.

    Dr Hughes is the 'bees knees' when it comes to PMR - not only will he come up with the right diagnosis and treatment plan, he will treat you as the adult that you are and with the compassion and care that you deserve. I have his contact details - if you would like them please send me a personal message and I will get back to you.

    If unfortunately it does turn out that you have a return of PMR and you are interested in meeting up with others for a chat over a cuppa, there is a very friendly and active support group operating in Chertsey with our next meeting being in February.

    Good luck and please let us know how you get on.

  • Do you know any rheumatologistsuggestions in the United States or could Dr.Hughes recommend someone?

  • It am planning to come to your meeting in February, Celtic. You kindly put me in touch with someone with whom I can get a lift part way. I look forward to meeting you.

  • Duh! Of course I now remember our previous communication, and putting you in touch with Judy. Put my forgetfulness down to a few months of lack of sleep due to a horrendous bout of urticaria, itching day and night from head to foot. I look forward to meeting you in February- meanwhile do seek advice from the wonderful Dr Hughes.

  • It has taken me 3 months to see a rheumatologist. The appointment is January 2017. I am terrified they will respond to me in this manner. In the mean time started with 30mg prednisone it's taken me 4 weeks to get it to 27mg previous attempts resulted in my having an unnecessary heart cath.

  • I'm feally appaled over how some dr.s behave towards patients! I have 18years behind me, working as a reg. Nurse at a rheumatology department, and I have met some drs that behaved quite similar to the one you met. The drs at our dept used to have a nurse with them when inpatients were called in to their consultation room to talk about the patients conditions and make plans for further treatment. That way, both the dr and patient had a witness, and we nurses acted as a buffer. We helped the patient to explain to the dr if there was a question that was hard to express, and we made the information from the dr easier to understand for the patient. AND! Sometimes when we found the dr's behaviour to be arrogant and rude, we weren' afraid to tell him to behave! (Of course, after the patient had left the room.)At least, I did! And it helped! And as to PMR, I think it still is in your body, and that it returns manifest again when something triggers it. Now, I have PMR myself, and the typical pain is different from myofascial pain, which I also have in some places. Naturally, it's easier fir me to speak out for myself than oatients without my background, but I will advice you patients to keep your head high, look the dr in his eyes (tell him to look at you!) and say that you don't accept to be laughed at!! That will set most of them aback, I think!

    Another advice is to take a person tou trust with you at the consultation. Then you have a witness. Or, tell the dr that you are taping the conversation if you have a smartphone with that function. Just say that you need it to remember what is being said during the consultation. I don't think that you have to ask for permission, but you have to tell that you're taping.

  • Good thought, I will try to mastering taping before the next appt. I did have my daughter with me , she was making faces at me to calm down when I was about to blow my top !

  • "I think I might just get a referral to another consutant, I am told Dr,Hughes in Chertsey is knowledgeable."

    I think that is a VERY good idea.

    Whoever she was she has no idea at all about either GCA or PMR - and HOW unprofessional to say you were misdiagnosed the first time when she didn't see you.

    Never jaw pain? Never stiffness? I wouldn't be back to her in 6 weeks time. I would see Dr Hughes even if I had to go privately and if he agrees it is a return - put in a complaint about appalling patient management. That was just RUDE.

  • She obviously doesn't understand autoimmune illnesses. Yes you do only "get it" the once, but once you have it you never get rid of it. It settles down into remission and then it may or may not rear its ugly head sometime down the line. Anyone who never has a flare up is the exception rather than the rule from what I can gather. Maybe she should be pointed in the direction of this forum so that she can increase her knowledge by learning from those who have had recurrences of the symptoms and maybe not just the once, but 2, 3, or even more times.

    You should be very proud of yourself. You did so much better than I would have. I'm afraid I wouldn't have been able to stop myself giving her some sort of sarcastic retort and I'm sure I'm not the only one.

  • You're right of course about you only get it once - but I think what the uninformed lady was talking about was a relapse as opposed to a flare, i.e. you go into good documented remission needing no pred to manage the symptoms and it reignites at some later point, months or even years later. Whereas I understand a flare to be an increase in symptoms during an on-going episode - which can be due to an increase in disease activity OR due to reducing the pred dose too far or too fast. Either way, the result is that the current dose of pred isn't enough - and you need more.

    I know several on the forums who have got off pred only to have symptoms again a few months later - but I also know at least 3 people who had PMR. got off pred and a few years later the symptoms started again.

    Given that is 3 out of a couple of thousand maximum - I really don't think it is particularly rare. i really wish I knew what they base their ideas on - because it isn't reality is it?

  • PMR first made itself known in July 2010 , Christmas that year was one of those long holidays and that was when I started having ferocious headaches and had to sit up all night. Luckily my niece is a consultant in Inverness , not a rheumy, a physician, she told me to take 60 mg, after new year I had a biopsy , which was negative, not surprisingly .the consultant I saw then was supportive . I came off April 2013 and methotrexate in October 2013 .

    In July 2015 I learned about LDN and knowing that I had a compromised immune system , after a consultation decided to give it a trial. Then in July this year I knew that PMR was surfacing again. I discussed it with my GP and decided to try without steroids, eating an anti inflammatory diet, though we eat well at any rate, and using supplements and an amazing spray from Hungary using, nano technology. I was doing really well and though there was some pain night and morning and I had the 'duck' walk first thing and the brain fog was bad some days. Then I started with the extreme sensitivity along my hairline and on top of my head and the jaw and sometimes tongue claudication which scared me. My GP 's are supportive so having chatted with the rheumatology nurse who spoke with my original consultant I was back on the Pred waiting for a call for a biopsy which never materialised, yes I did phone the . Then this consultantation with this rude woman.

    So, yes I do realise like all autoimmune diseases one is lucky to have remission and that many diseases don't even have that luxury.

    Does anyone know if the university of Leeds Retrospective study on PMR and GCA come to any conclusion? I was happy to allow my notes to go forward to them.

    Sorry to take up so much space, thank you for your replies. I have decided to go privately to Dr, Huhes, I probably will turn up to my next appt with 'that woman ' if only to get the results of the multiple X-rays and bone density and blood tests. I did take information on our website, but was too angry to give it to her. I will next time , promise !

  • Have enquired about the Leeds retrospective study... If you see Dr Hughes before I hear back - ask him. I'm sure he'll know.

  • One thing I can say about this disease is that a sufferer learns very quickly just how to cope with all the underlying reactions to various stimuli. Either that or the pain becomes unbearable. I was lucky the first time around. I weaned off preds far too quick as I didn't know about this forum then. I was very lucky as I actually got away with it. Not so the second time. I didn't know that the condition could recur; nor did I know that it can affect a different part of the body the second time around. It was all in the hips and lower end of the body the first time, but this time was all in the neck and shoulders. It has taken me a really long time to get down to 2mg, with flareups making me have to increase back up on 3 occasions during the reduction, but I'm getting there and if nothing else, it has taught me patience. If it wasn't for this group and the people in it who take the time to read and respond to our woes, I think I would have gone totally insane by now. SO thank you everyone for your continued tolerance when I have a moan and your continued support and friendship going forward.

  • Don't you want just scream at the know all doctors who know nothing about it.

  • Frequently - one of the top PMR research docs is about to write a teaching thing for GPs. She says communication isn't her thing (she's utterly brilliant, unlike the average GP) so wondered if she would write her version and let me write it in "communcation-speak" and maybe I can get some of the obvious misapprehensions about PMR corrected! I did say to her I thought it needed to be aimed at a lot of rheumies too!

    Of course - the difficult/dangerous thing is that they don't know they don't know...

  • Hopefully, because she's "one of the top PMR research docs", most of the medics her paper is aimed at should pay attention, especially if you can capture their eyeballs and attention in the first couple of sentences!

  • I doubt it - GPs aren't going to be aware!

  • Then get it into the papers so the general public starts talking about it. A follow up to that recent publicity mentioned on the forums sometime within the past few months?

    Recently here there's been a huge push by the dairy industry to promote awareness of osteoporosis. Of course drinking milk isn't going to be much use, but the awareness campaign has certainly been very in our faces. Too bad there isn't a similar food industry relevant to promoting PMR awareness. It's hard to miss special covers on the daily paper, billboards, and signage on exit doors of public transit terminals!

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