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New here but not new to being in pain. would like to meet others

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willa5
willa5

Hi Im new here. Im 59 years old, and was recently diagnosed. My CPR and Sed rate have been elevated ever since I can remember. I had a first episode when I was in my 20's. I periodically would have episodes, they would slowly go away. There were some years when I was ok. At some point when I was working a lot I started getting extremely bad cases, I was so tired I had a hard time even keeping my head up. I could not lift my arms to brush my hair. I do have a back and neck injury from age 16- horse fell on me, so I assumed some problems were from that. I suffered a lot for years with extreme pain in muscles, deep pain. My scalp and nose get tender when I get an episode. Fortunetly I saw a good Dr. who even though most of my autoimmune tests were negative tried me on prednisone. We tired a small does and tapered off.. I felt somewhat better but when I lowered the dose it came back. Then we did "bursts" 40-60 mg. for one week and taper slowly off after 2 months. OH my ,, it worked, for first time in many years I got a break from everything, miracle. I had to have 2-3 treatments a year. Then after a few years I didnt have so many problems.,. I am diffinetly sensitive to sunlight and almost for sure I get an attack/episode every spring. I know this is not usual for this.. My doctor said we do not know what it is ,e xpcet it is a autoimmune disease that responds to prednisone.. I wouldve killed myself if I did not have prednisone. I do not drink , smoke, Ilive a healthy life. The only thing that makes me feel ok, is prednisone. But I have to take at least 40 mg to start to knock it all the way down.and keep it down. Fortunely I have only had to have 1-2 treatments a year for the past 5 years. If I over exert myself , it can bring on a long lasting episode. Recently I saw a new GP and she gave me the PMR diagnosis. Im not 100% convinced. But maybe I am an anomoly. Lately Past year I have been having extremely painful spasms/contractions in my major muscles of my legs , and when I bend my arm and am carrying something, a stabbing, crabbing pain in my biceps (makes me drop whatever I am holding) Id like people to describe their pains or limitations all the internet sites just say the exact same thing. To me when I try and lift my arm it feels like opposite pressure. Like to go up some muscles are opposed and pull the other direction, or like there is no blood in my arms, that kind of fatique,, if I keep trying to hold them up , extreme pain. same feeling with my leg muscles.. If you ever ran a marathon to point where there is pain then no control over muscles that is what happens.. When I am extremly tired and try and make myself continue walking,working, I fall down, I have hurt myself a lot that way. My joint ligaments, tendons tend to tear easily . When I feel sick my vision gets blurry , I get constant headache - often times I will have a slight fever.. when I am having a bad episode.but all goes away when I take prednisone. I also have trouble swallowing when I get very tired and sick /choke. When I take the prednisone, itis like magic... miracle drug for me. I have gained a lot of weight, but the relief from my disease is worth it. Would like to hear other people who have similar symptoms.Other things I deal with are 2TKR, neck surgery, 3back surgeries, asthma,copd , arthritis,type 2 diabetes, and a few other things. thank-you!

0 likes, 13 replies

13 Replies

  • EileenH
    EileenH willa5

    Posted

    I may be wrong - but I think it is unlikely you will find many people on this particular forum with a similar history to yours because what you are describing has elements of giant cell arteritis and PMR as well as having been intermittent since an early age. In the UK that is very unlikely to have been diagnosed as PMR because it really is felt that PMR only appears in older patients, over the age of 50, and even people in their late 40s tend to struggle to get a diagnosis. "PMR" that requires 40mg pred to control the symptoms would definitely be classified as a polymyagia of unknown cause since such a high dose would control other things, the PMR most of us have responds to 15-20mg and can be controlled by even less. On the other hand - GCA does respond to 40mg.

    What you are describing certainly DOES sound like a vasculitis and some elements (the reaction to sunlight) could suggest lupus, has that not been considered? The bicep pain does sound like the claudication that can happen in GCA - or other large vessel vasculitides, i.e. when arteries are inflamed and the blood supply to the large muscle groups is reduced to a point where it isn't enough to allow exercise with repeated or sustained muscle actions.

    I don't know if there is a vasculitis forum on this site - there is one on the HealthUnlocked site and I suspect you will possibly find people with far more in common in terms of symptoms. There are many such sets of symptoms - this forum is GCA and PMR only so a bit limited simply by the criteria used to diagnose them both. Yes, the sites all say the same sort of thing - because those are the symptoms that lead to a diagnosis of GCA/PMR. if you don't fulfill them then you will get a label of something else - because, to be honest, that is all the name given to whatever you have is. It is a set of symptoms, including some, excluding others, that someone has identified, described and given a name (very often, their own name!).

    Diagnosis of autoimmune disorders is fraught with difficulty because there are no real 100% accurate tests and there is a massive overlap between them where a patient, as you do, demonstrates elements of many different "patient pictures" and then it becomes a "cross-over disorder". The best aspect for you is that whatever it is responds to pred well. Have they tried any other immunosuppresants at any point? 

    • willa5
      willa5 EileenH

      Posted

      Hi Eileen, I do not have positive lupus test results like ANA, etc. mostly just the Sed rate and CRP have been positive for many years.
    • willa5
      willa5 EileenH

      Posted

      Hi Eileen, I did try Plaquenil ( a lupus medicine) but I was allergic to it. also very allergic to any sulfa drugs. i wish I could be accurately diagnosed,and then part of a study and try some new medicines.It is very frustrating when their are no clear diffinitive(sp?) tests. Mentally it is easier to deal with if you know what you are working with.
    • EileenH
      EileenH willa5

      Posted

      There are very few studies of other medications for GCA or PMR and they only take newly diagnosed patients, usually with no medication history. They also require a definitive diagnosis - but even then the way trials work doesn't mean you would necessarily get the new medication.
  • MrsO-UK_Surrey
    MrsO-UK_Surrey willa5

    Posted

    Willa, I've answered your post on another thread and repeat my reply here:

    Willa, does your jaw pain only occur on chewing?  If so that is a classic symptom of GCA, and with your other symptoms of blurred vision, head pain around your temples and the effects of cold air blowing on you you should go to the emergency department at your hospital to get this checked out asap as there can be a risk to your eyesight from untreated GCA.  If a small biopsy taken from your temple area reveals large cells, then that will be confirmation of GCA, although it is still possible to have GCA without the small sample taken revealing any large cells.  However, if GCA is suspected you shouldn't wait for a biopsy before starting on high dose steroids to protect your eyesight.  I experienced all the symptoms you mention leading to my diagnosis of GCA.  If you do in fact have GCA you should be under the care of a rheumatologist.

    Also if you have been experiencing episodes of muscle pain andhave been diagnosed with PMR, then the Prednisone should not be given to you "periodically" but on a continuous long term basis (for up to 2 years or longer) gradually tapering down. 

    • willa5
      willa5 MrsO-UK_Surrey

      Posted

      Hi - The rheum dr. first tried me on a smaller dosage- I was practically in a wheel chair at that time. I felt better , but the symptoms would creep back. So she tried the large dose with taper.That actually got me into some sort of remission .I had tried also taking 20mg.but itdoes not knock it down enough and as I withdraw the prednisone the symptoms return. with the larger "bursts" it knocks it down and stays down. For a while at least. Sometimes for years.

    • MrsO-UK_Surrey
      MrsO-UK_Surrey willa5

      Posted

      Willa, with your description of your symptoms being "knocked down and staying down for a while, sometimes for years", it isn't now sounding too much like PMR/GCA as these require long term continuous steroid treatment, sometimes for many years, tapering gradually to zero when the disease goes into remission.  Obviously, you do have some sort of auto immune condition, and the others seem near the mark with Lupus.  Have you considered seeing another rheumatologist for a second opinion?
  • constance.de
    constance.de willa5

    Posted

    It sounds very like lupus to me.  I had a friend who had it and symptoms were very similar to yours.  She has suffered over many, many years.
    • willa5
      willa5 constance.de

      Posted

      Yes, in fact my first gp called it zero negative lupus, but since none of the usual tests were positive that has been disregarded by several drs. I have seen.
    • EileenH
      EileenH willa5

      Posted

      I gather it isn't unusual for patients to be found to be sero-negative for most /all things for a long time. Sometimes they are only positive during an active flare. And as I mentioned, in cross-over autoimmune disorders things don't necessarily match the text books. There's no wonder the average time to diagnosis is in the region of 10 years! That average will comprise people given a dx in far less time - and far longer. 

      Your sed rate and CRP say there is something going on - but I don't think it is "normal" GCA or PMR. Your first GP may be the nearest so far.

    • willa5
      willa5 EileenH

      Posted

      I live 4 hours from a university that would have a diagnostic center, I do not have anyone to go with me at this time and wheel me into the place from a parking garage. I can only walk short very short distance and need to sit down, lately even sitting is painful. I can function as long as it is for very short periods of time and not very demanding., then I have to lay down. Going all that way, sitting in waiting rooms etc. seems overwhelming. Hopefully when my daughter has sometime off she can take me and make a few day trip out of it.
  • willa5
    willa5

    Posted

    Ok, its been a few months since I went on the prednisone,and I am very happy that something I didnt understand is now cleared up, hip pain. ! Well not really pain, kind of like a freezing up. I did yoga when I was younger and because I cant bend forward due to back and neck fusion, I always sit on bed turn sideways and pull my leg up on bed to put on my socks and tie shoes. For awhile I was able to open up my leg at the hip joint so I could lean forward to put socks on, somebody was having to help me and it really bothered me. Now I can see that that STIFFNESS, restriction in my hip joint is related to the PMR. I am back to being able to bend my leg and sit sideways with leg on bed to put socks on. So I understand , when I read "stiffness and pain in hips" , I had completely lost my flexibility  in my hips .I can imagine if someone goes a long time without using there hips in such a way that their hip/muscles could freeze up or atrophy.  I want to thank all of you for answering my questions , I was really worried when I came here. Been feeling much better, now on pred Im just sticking with the 10 mg and trying not to get off just yet. as usual I am trying to remind myself, not to do too much as Im feeling better, as sure enough I get tired and fall. im leveling off and making myself lie down for 20 minutes every few hours to not get too tired.
    • EileenH
      EileenH willa5

      Posted

      That is good to hear - I still have occasional wobbly moments with one hip - I think it is left over bursitis. After all, it must come in all sizes so it doesn't have to be agonising pain, it could just be "sticky".
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