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Newly Diagnosed

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linda04580
linda04580

I am newly diagnosed with PMR and possible GCA.  My defeats and crap were initially high then normal on follow up but they are sending me for temporal artery biopsies.  I have severe pain in my right eye and my vision is as if I am looking through a peep hole.  Pain in base of skull, shoulders hips, thighs, and knees, no fever, and no wt loss.  Pain on swallowing and chewing.  Started on 60 mg prednisone per day.  Do you who have this issue recognize this as the treatment? What else can I expect.. ps I am 51

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  • linda04580
    linda04580

    Posted

    Sorry spell check on my post.  It was elevated CRP initially then normal 
    • constance.de
      constance.de linda04580

      Posted

      I liked the original best! 😂😂  Don’t you just love the spelling check?

      Certainly sounds very like GCA.

  • linda04580
    linda04580

    Posted

    Sorry spell check on my post.  It was elevated CRP initially then normal 
  • lilian05079
    lilian05079 linda04580

    Posted

    Hi linda04580

    You do have all the symptoms of PMR and GCA . Not everyone has GCA with PMR but you have classic symptoms of GCA.. vision problems, pain when chewing there is also severe headache, do you get headaches?....a temporal artery biopsy will diagnose GCA. If you are diagnosd with GCA this will almost certainly determine PMR. If your biopsy does not show GCA ask your doc for a scan and x-rays of your shoulders, hips, thighs and knees just incase you may have onset osteoarthritis .....sincere best wishes for a obtaining a diagnosis...

  • koen1
    koen1 linda04580

    Posted

    Linda the symptoms are different for everyone and a negative result for a biopsy does not mean that it is not GCA . That being said, I started with stiffness, night sweat, high crp for pmr diagnosis. Then i did improve initially on 10mg pred, after a couple weeks not enough, up to 15, then 20mg for a month with ever more nightsweat, weight loss and in the end almost complete darkness in one eye. 60mg fora little over a week. Biopsy was negative. Now after 2 flareups still at 25mg, but luckily with few side effects.

    All the best to you!

    • linda04580
      linda04580 koen1

      Posted

      Did the darkness in your eye get better?  I hope you continue to get better, this stinks!!
    • koen1
      koen1 linda04580

      Posted

      It lasted only 5 long minutes, but was very scary. No pain at all. I also experienced something called scintillating scotoma a few weeks earlier also perhaps 10 min. Called my rheumatologist but by the time he returned my call it had passed for quite a while. I did it know the name and to describe I was pretty vague . He told me to monitor it. This was when I was on 20mg, before the GCA diagnosis.
  • Anhaga
    Anhaga linda04580

    Posted

    Good that you are getting the biopsy so early in treatment, but there is always a chance it will be negative, which may just mean they didn't find the giant cells they were looking for, they weren't in the section taken.  Symptoms are always key.  The benefit of a positive biopsy in case of suspected GCA is that it is definite confirmation in case there are ever questions in the future about the diagnosis.  All the best.  

  • EileenH
    EileenH linda04580

    Posted

    Since they suspect that GCA is a possibility, yes, starting you on 60mg pred is absolutely standard to reduce the risk of poor blood supply to the optic nerve causing irreversible damage to the nerve and loss of vision. The symptoms you describe are typical of PMR, which itself can be a symptom of GCA, and the tunnel vision is typical of damage to the optic nerve. Headache at the back of the head is also typical.

    The biopsy is just another useful piece in the jigsaw. As Anhaga has said, if it is positive it is 100% confirmation that your symptoms are due to GCA and no-one can argue with that. However, the biopsy is only positive in less than half of cases - for all sorts of reasons ranging from the fact that GCA tends to be very patchy and not affect all arteries or even all areas of an artery to simple bad luck and there not being what they are looking for in the bit they excise. Even if it is negative they will continue the treatment if they think GCA is likely nevertheless.

    It is possible that you may need more than 60mg - if the symptoms worsen at all, don't hesitate to contact your doctor immediately. Overnight or at a weekend, go to the ER/A&E.

    The CRP result is interesting though - raised CRP is expected in GCA and PMR. However, as many as 20% of patients with either do not have raised levels for some reason. But both options is very unusual!

    Like Constance I liked the original - must have been a freudian slip by spellcheck...

    • linda04580
      linda04580 EileenH

      Posted

      Hi Eileen, and thanks for your input.  Originally, 1 month ago, I was thought to have a post viral syndrome.  My crp was elevated at that time, and I was put on a medrol dose pack.  The symptoms went away by 3 days.  Then returned two weeks later.  My crp was lower (wnl) range at that time.  Is this due to the steroids even two weeks later?  Or is this a wrong diagnosis?  I don’t want to be on the wrong page with this given all the side effects of steroids.  However, I read if the symptoms go away with steroids, the DX is probably correct.  Anyone have any light to shed on this as well as PMR and GCA causing swelling in the lower legs and knee pain , perhaps this is something else.  How long before symptoms get better on steroids?  

      Day 3 today, eye pain is less, head and neck pain less shoulders same fatigue same.  

    • EileenH
      EileenH linda04580

      Posted

      The swelling in lower legs and knees could be RS3PE (remitting seronegative symmetrical synovitis with pitting edema, which is why it is shortened!) which can exist on its own but is also quite often found alongside PMR.

      Your response to the Medrol dosepack is absolutely typical of PMR - but it didn't last long because PMR is an ongoing condition: an underlying autoimmune disorder produces inflammation every early morning as long as it is active, which is usually anything up to 6 years or even longer. As the inflammation builds up it often results in raised ESR and CRP. The use of corticosteroids to manage it should result in the values falling to normal - and then if they are stopped it may take some time for the levels to build up again. In some people they don't rise if the patient is still on a steroid dose, even though it is too low and symptoms are present. Symptoms are ALWAYS king, the blood results are of secondary importance.

      Which symptoms do you mean? You said it all went in 3 days on Medrol? The fatigue will not respond much to the steroid - that is a part of the underlying autoimmune disorder which is a bit like having flu on a permanent basis. The steroid just manages the inflammation to relieve the symptoms and allow you a decent quality of life until the a/i disorder burns out and goes into remission - which for 75% of patients happens in up to 6 years, many sooner. The fatigue you have to manage with pacing, doing things in smaller bites and resting appropriately.

      This is a link to our resources post:

      https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

      Right at the bottom is a link to two articles about pacing. The second is particularly good - it doesn't matter it was written for ME, autoimmune fatigue is all the same. Also google "The spoon theory and the gorilla in your house" and you will get a link to a blog by rarainbow where she talks about both these articles and provides links. I can't give you the direct links here. But they are well worth including in your daily life to deal with the fatigue.

      But just because you start to feel better on the pred - don't try to go back to normal activities. The autoimmune part of the illness is still there, chugging away in the background, and your muscles are intolerant of acute exercise. Do too much and the PMR will turn round and bite!

    • EileenH
      EileenH

      Posted

      Another good article about fatigue can be found by googling "13 types of Sjogren's fatigue" - again, written by someone with another a/i illness but still relevant for us.

    • linda04580
      linda04580 EileenH

      Posted

      Thanks Eileen, the symptoms of shoulder aches and neck aches and hip/thigh pain went away with the medrol dose pack initially and then returned two weeks later with the added eye pain with tunnel vision and jaw pain when I chew, more like my jaw just gets too tired to chew and aches.  This is day 3 of steroids temporal artery biopsies are Monday .  Thanks for the info about edema etc.  I will take a look at the articles, thanks!

      Linda

    • EileenH
      EileenH linda04580

      Posted

      Sounds very like PMR as a prelude to GCA to me though I do hope not. The GCA-type pains may need a higher dose if they are still there. Good luck for Monday - I almost hope the biopsy is positive because then there is no argument as there is when it is negative because some doctors don't believe in GCA unless they see the biopsy!

  • Reeceregan
    Reeceregan linda04580

    Posted

    Hi Linda04580

    My GP suspected both PMR/GCA and immediately put me on 50mg pred, ordered the blood tests, and referred me to the rheumatologist. I couldn’t get in for 6 weeks. Rheumy then still ordered the biopsy hoping to find giant cells. He didn’t, because I had already been on a high pred dose for 6 weeks. He continued the high dose based on the clinical diagnosis of the symptoms. I had all the GCA symptoms, (as well as all PMR symptoms)  left eye had a silver streak, and peripheral vision was reducing in that eye as well. Tender scalp, headaches, sore neck and jaw etc. That was 31st May this year and now down to 13mg pred. Don’t rush to reduce the pred if you can’t manage the pain etc, it’s not worth it. You’ll just bounce back and forward with dosages increasing and decreasing. Pace yourself with any activities, don’t burn and bust or you will go backwards. I say all this from experience. I still have good and bad days, some in a fair bit of pain or discomfit but most days I feel somewhat normal and my mobility and quality of life is coming back. I only take the pred and use natural wellness practices, and massage therapy. No pain killers so far.  Not a lot I can’t do, I’m just super careful these days. We still travel in our RV, get out and about as before, and planning a trip to NZ in a few months. I carry a folding walking stick in my handbag just in case my legs go on me but haven’t used it in quite a while now. I’m improving every day. Be positive, have a good fighting attitude and you will get on top of this. Good luck 💪

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