Finally a confirmation of diagnosis!

Well finally saw neuro Opthomologist this morning and after four months of no answered he confirmed that I have Ggca and pmr. He confirmed by the symptoms and he told me exactly everything that I have read here, he even knew about the written guidelines before I mentioned them. He is only one of five Dr.s in the state of Florida and well informed with the slow taper etc. he referred me to a Rheumy in Miami who specializes in Gca and pmr and recommended a temporal biopsy, explaining it may be neg but still thinking it necessary. He also gave me additional script for pred and told me that should I develop any head or scalp to automatically take 60or even up to 80 mil of the pred. He said never be afraid to up to he dose myself even if only in 5increments. This man was so compassionate and thorough that I had tears in my eyes. He said I did not need any MRIs, that all of my symptoms were conclusive and now I'll finally get on the correct dose and have a Dr who knows what this is all about. To everyone here I told him this site has been a godsend, a real help in every way and he also thought it was wonderful.

Sharon

16 Replies

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  • So pleased you have found a good doctor - I do hope his recommended rheumy is as good as he sounds.

    Another one to clone...

  • Thank you PMRpro,

    I feel like now I'm on the right track and praying the new Dr will be as good as I was told, especially since I'm going out of network with insurance. I will be compensated but not as if I went to a Dr in network but if he is good then Ill pay.

  • Hi,

    So pleased you've finally got some answers, and somebody to treat you. Hang on that man!

  • Sharon, finally! It sounds as though he was well worth waiting for - so knowledgeable. At least you now have a way forward with a good-sounding rheumy on the cards as well. All the very best to you.

  • Thank you Celtic, I'm so relieved.

  • I am so new to this diagnosis I don't know any of what you are talking about.

    Please can someone help me

    For 6-7'yrs I was taking medication for fibromyalgia now it's Polymyalgia what's the difference, I'm in terrible pain still no more morphine??

    What pain relief do I take now?

    Please tell me someone

  • The symptoms of fibromyalgia and polymyalgia rheumatica are quite similar and there are no specific tests for either of them so the diagnosis is made on the basis of what symptoms the doctor finds when they examine you. It is easy to get it wrong.

    The differences are that in 8 out of 10 PMR patients the ESR and CRP blood tests are high because it is due to inflammation at various places in the body - that is rarely found in a patient with fibromyalgia. The other difference is that the pain and stiffness in PMR improve a lot when a moderate dose of prednisolone/prednisone is given - 15-20mg/day taken as a single dose in the early morning should make the symptoms about 70% better overall within a couple of weeks. If someone is big it might need a slightly higher dose or take a bit longer but it makes a difference to how you feel even though it isn't 100%. That is because it is reducing the inflammation that causes the symptoms.

    Pred does not work in fibromyalgia at all - the problem is probably at least partly in how the brain processes pain signals so they use "nerve medications" which help some people.

    Many doctors are of the opinion that PMR doesn't occur in younger patients, usually they say under 50. Several experts I have talked to think the same as me: yes it can happen to people in their 40s (and even younger) but doctors don't recognise it because of their belief it doesn't happen so they aren't looking for it at that age. If you have someone in their 40s with the symptoms which could be either and you believe the age story, you will decide this patient has fibromyalgia.

  • Lottie, we are talking about Polymyalgia Rheumatica (PMR) and the linked condition Giant Cell Arteritis (GCA).

    As for the difference between PMR and Fibromyalgia, a few years ago a paper setting out the comparison between the two was written by a trustee of the Charity, PMRGCAuk, and a member of the Fibromyalgia Association UK. The following is a summary which you might find helpful:

    PMR commonly affects people over 50 but it can also occur in younger people. There is no specific blood test although blood can be tested for inflammation and, if positive, this is often taken as confirmation of PMR. However, it is still possible to have PMR with normal blood test results. It is an inflammatory condition with symptoms of severe pain, especially in the muscle areas around the hip and shoulder girdles, stiffness and tiredness. It is treatable with steroids (Prednisolone) and generally responds well to treatment, although there can be side-effects of treatment. It can last for anything from 2 years upwards.

    PMR can occur on its own or be accompanied by inflammation of the arteries (GCA), and if the arteries in the head are affected, prompt medical diagnosis and treatment is required with high dose steroids as there is a risk of loss of vision.

    Fibromyalgia is an abnormal pain processing condition which can affect people of any age. There is no blood test for Fibromyalgia and doctors depend on a person's history of widespread pain and the tender point test. Apart from widespread pain, symptoms include persistent fatigue and non-refreshing sleep. There can be many associated symptoms including cognitive dysfunction, IBS and anxiety. It is treated with analgesic painkillers, low-dose antidepressants and lifestyle changes, but treatment response can be variable, and though symptoms can improve it can last many years.

    I hope that helps.

  • Thank you so much for your reply.

    At the moment I suffer from Fibromyalgia definitely and Ulcerative colitis plus deep depression plus now this.

    I wanted to know if it's possible to have both? I suppose I will have to wait and see what my consultant says and also I receive DLA or PIP which is disability benefit for fibromyalgia, I was wondering if people receive it for Polymyalgia??

    Thanks for all your help, much appreciated

    Lucy xx

  • Lucy, yes it is unfortunately possible to suffer from both PMR and Fibromyalgia at the same time.

    I'm not aware of anyone claiming DLA for PMR , or, in fact, of it being available for 'just' PMR. Perhaps someone will join in and post otherwise.

  • Do people normally go on DLA or PIP with this condition

  • Sharon I live in Boynton Beach and would love to have a rheumatologist who was familiar with GCA. Can you send me his name. I would not mind going down to Miami from Boynton Beach. My rheumatologist is just OK but I am more educated in this then he is and I am his only patient with this disease and on this dose of prednisone. I also just started taking prolia and I am having much pain with my muscles and it is only the second day since the shot. My rheumatologist does not get on the phone. You are lucky you found an ophthalmologist who knew what you are talking about and a referral is always good I have gone as far as mayo clinic. Good luck with your journey and if I can be of any help let me know I started in July 2015, prior to this I had PMR You can write to me in messenger if you want more comfortable. Marilyn

  • Hi Marilyn,

    I live in West Palm Beach so we are neighbors.

    The new Dr I will be seeing next Thursday who was referred by the Neuro Opthomoligist Dr. Matthew Kay is Michael Schweitz, 561-659-4242 & he has an office in Boynton & one up here at Good Samaritan Hospital. I was told he is the best in his field and specializes in GCA/PMR. Dr. Kay is located in Miami not Dr. Schweitz.

    I have currently been seeing a Dr. Brett Hutton, whom I liked because he had a great chair side manner but was not at all familiar with all of this, he even tapered me wrong and when I tried to tell him all I was learning here he told me not to go online and read so much. He also gave me incorrect info, such as if your blood tests are normal you couldnt possibly have either GCA or PMR which is not true.

    He took his time with me but was just trying to tell me that I had arthritis and that my scalp and head pain was from my discs in my neck. He was not at all concerned about my vision changing and that worried me.

    Keep me posted and so nice to find someone living so near on here.

    Sharon

  • OMG Dr. Hutton is my rheumatologist. Has been since he had his office in Delray. I go back with him many years since my original PMR. I have taught him everything he knows about GCA his office now in Loxahatchee is half staffed and not efficient. I definitely need a rheumatologist who is familiar. with this disease and who will work with me. Would you send this name to me in my email which is Marilynredder@gmail.com. I would also like to talk further with you and it is easier when it is not totally public. Finally A local. I have been all over the world on many forums. Thank you. (Love CityPlace). In WPB a lot. Marilyn

  • Marilyn I love City Place and usually go every Fri and Sat for the music, maybe we can meet one evening. We have so much to chat about and let me tell you, Dr Hutton tapered me with a high dose and I wound up in hospital. We can discuss this through email. I love this forum and everyone here helped me beyond my expectations.

    I'm going to email you

  • Great idea would love to meet up with you perhaps Thursday night at Clematis? Or dinner at Cheesecake?

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