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Biopsy

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sharon61808
sharon61808

Following a relapse when reducing meds, and with my markers rising again my GP sent me to the Rheumy, she now wants me to have a arterial biopsy and a brain mri.  Initially I was diagnoes with GCA via an ulstrasound which showed inflamation. Also have the PMR.  So off I went to the vascular surgeon who after looking at all my med records agreed with the diagnosis and went on to tell me that in his experience he has not found the biopsy always confirms the diagnosis especially when I have already started the prednisone, been on it for 3months and am on 45 per day at the moment, but still have pain in my left temple and the creepiness in my scalp.  In his opinion with studies that he has done of the procedure he has carried out there is only a 10% chance that the biopsy will confirm GCA.  He spoke to my rheumy and she still wants me to have it, I have sent her message to reconsider, with no reply.  So I am now booked in for this procedure this Tuesday, I have almost decided not to do it, but would love to hear others experiences on this.  The Rheumy's reasoning for wanting this is that as I am not responding too well with the reduction in meds, she wants to add some other medication to the mix to help.  Thanks Sharon

0 likes, 12 replies

12 Replies

  • Sheilamac_Fife
    Sheilamac_Fife sharon61808

    Posted

    Sounds like you need to reduce more slowly. Of course I don't know how much you started on. Were the reductions more than 10%?

    My feeling is they are panicking too soon. If the inflammation is still there, you can't reduce. The GCA and PMR are in charge, not you and certainly not the docs. They take their own time to fade away. There are no textbook rules around reduction schedules except that it shouldn't be more than 10% at a time and you need to settle on the new dose long enough to make sure it is ok. And if it's not, you slip back up to where you were last comfortable.

    Hopefully one of the experts will be along to advise you soon. 

    Good Luck in your journey!

    • sharon61808
      sharon61808 Sheilamac_Fife

      Posted

      Thank you this is also my feeling.  I stated in December on 75 then down to 60 then down to 50 all holding, but when dropped below 50 pain returned.  I really do not want to put my body through anything more to stress it.  Cheers

       

    • iellen32
      iellen32 sharon61808

      Posted

      I am following with great interest your discussion , having myself GCA.

      You are under professional care and getting the support you need now.

      Sharon, I wish you the best outcome.

      Everything will be in your favor.

      Keep your best positive attitude and your hope alive.

      xxxxxx🌸

  • nick67069
    nick67069 sharon61808

    Posted

    I have no personal experience with GCA, but from what I have learned, I tend to agree with vascular surgeon, results from biopsy may be misleading since you are on high dose of pred for last 3 months. I don't know it it is worth doing it.  Doing MRI may be more sensible test, not to confirm GCA, but to eliminate any other couse of your pain.  Though choices... Good luck!
    • sharon61808
      sharon61808 nick67069

      Posted

      Thanks Nick, I decided not to go ahead with the biopsy, not sure what my rheumy will think, but am having an MRI in a couple of weeks to see if everything else is OK.  All the best.
  • maureen63465
    maureen63465 sharon61808

    Posted

    I had a biopsy about 3 weeks ago and post op wish I hadn't. It normally takes about 20 minutes but mine took about 45minutes. That wasn't too bad but the after effects have left me with a numb area in left temple and a nerve pain when I lay on my left side in bed. Like you mine was booked after I had started Prednisalone so with hindsight totally unnecessery 
    • sharon61808
      sharon61808 maureen63465

      Posted

      Thanks for this Maureen, your honesty helps, this is just the way I was thinking as well, so decided not to have the biopsy.  Will have the MRI in a week or so to check that there is nothing else underlying.  All the best with your recovery.
  • JanSP
    JanSP sharon61808

    Posted

     I was thought to have GCA based on severe headaches, neck and jaw pain and high SED in June 2009. That was before I had PMR too. I was started on 60 mg. of pred immediately. I was then scheduled for a biopsy the very next morning. I was told taking prednisone would mess up the biopsy results if not performed soon after the dose. I don't know how soon that means but my biopsy was positive. I'm now dealing with my fourth GCA flare, 25 mg. pred down from 80 (60 didn't handle it this time, .8 mg meth and Actemra. I'm so blown up this time I can hardly breathe. I saw a pulmonologist last week and was told my lungs are fine I just don't have much room to expand them with all this abominable abdominal weight and a scoliosis. Good luck Sharon.
    • sharon61808
      sharon61808 JanSP

      Posted

      Thanks for this Jan, I decided not to have the biopsy as I am too far along in the prednisone treatment and really did not want another pain in my head so to speak.  Wow you have gone through a fourth flare, I feel for you and wish you the best. 
  • snapperblue
    snapperblue sharon61808

    Posted

    What question do they think the biopsy will answer?  Do they doubt that you have GCA?  If not, what is the point of the biopsy? How would it help the rheumatologist select another medication?

    If anything, assuming it is done right, the ultrasound may be better than a biopsy because it samples a larger area. Does the GP have a problem with the ultrasound?

    A positive result on the biopsy can confirm a diagnosis, but a negative result tells you nothing.  You can have inflammation in another part of the artery that was not present in the piece the surgeon removed. Or, as surgeon pointed out, the prednisone may have reduced the giant cells so they are not detected.

    You still have the symptoms of GCA, right?  Is your GP driven by a goal of  reducing your dose of prednisone?  I have PMR, so I am not aware of the dose and duration typical in GCA, but your GP might just want you to get off prednisone to avoid real side effects, but sooner than you should given your GCA.

    • sharon61808
      sharon61808 snapperblue

      Posted

      Yes I totally agree with you, I decided not to have the biopsy, as all the symptons for GCA are still there, and the ultrasound which I had done early December, 2015 when I was diagnosed with PMR showed definite thickening in the artery.  It is not my GP but the Rheumy who wanted to check this as she is thinking of adding another medication so that I can reduce the prednisone.  As it is they are both away this week and my headaches returned with a vengence on the 45 so I went back to 50 and they are settling down.  Quite the journey isn't it, especially with both.  Thanks for all your help. 
  • beatrice74480
    beatrice74480 sharon61808

    Posted

    Sharon at the moment I sympathise with who have PMR,I was diagnosed three years ago,was put on pred and fely well and energetic whilst on it, tapered down on slow reducing method until ESR 7 and it was declared bye bye PMR. \however, after a month of no Pred  the aches and pains started and cutting the story short I decided to take 1mg of pred alternate days for a couple of weeks, it seemed to relieve symptoms. Another blood test  and ESR had gone to 12,and the Protein one showed 16 proving inflamation. My new Rheumy has been so thorough as my hands swell and are very painfull, had more blood tests and feet and hand Xrays and scans , he told me to keep off pred until I see him nxt week,Its been a painful journey with a none related shoulder problem, however I really feel symptoms are not related to PMR. Before getting PMR I was a fit and healthy 70 yr old I wish I could say the same now, Hoping to get pain relief for shouldder or injection but really do get very tired,  We are all trying to get well again but its very hard, Good luck 
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