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Biopsy Results Negative Rheumy and GP still Calling it GCA & PMR

Posted , 9 users are following.

MKSimpson95
MKSimpson95

So here is the thing going through my mind- what if it is something else?  I was started on 20 mg pred for 5 days then increased to 60 mg for last 16 days.  Double Biopsies done day 11 (16 if you include the 20 mg) I have had a headache every single day.  It does come and go and is better at the end of the day.   But Tinnitus persists- I have a continuous radiator going off in my head since before any prednisone.

The following all ended when put on 60 mg or greatly reduced at 20mg.

Arm pain

Shoulder pain

Waking at 4am in pain

Hip pain

Not being able to lift legs

Not being able to put on socks

Not being able to lift arms

Weight loss has slowed☹️

Not being able to get out of a chair without something to grab on to

Had 2 rounds of bloodwork one in August and again in September they were bothered elevated Esr 78 then 95 and C-Reactive - 2.4 then 3.1(normal .0-.5) and I am 60

I saw the GP This past Friday she is leaving all up to Rheumy who I see this Wednesday next.  Go to ophthalmologist on Tuesday.  

So not sure if I am just paranoid or just still getting used to all this.

Thoughts?

0 likes, 21 replies

21 Replies

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  • MKSimpson95
    MKSimpson95

    Posted

    Oh also this all started mid July 2018....
  • lynda62707
    lynda62707 MKSimpson95

    Posted

    Thoughts?? I've got so many I can't even think right now.

    For now I'll just say, my latest ESR is 90 (much like your's), I too have an appointment for possible eye surgery on Tues..... Lot's of double vision right now!

    And lastly, I too have bad headaches daily....

    I need to process your post before I respond further but, thinking of you kid....and sending you hugs and good thoughts😘💕

  • MariGrace
    MariGrace MKSimpson95

    Posted

    Sure sounds like what I have gone through (minus GCA).  20mg was a miracle, however, things got worse and I went to 60.  Have bounced up and down and at 10 now and should be on 20.  Am tolerating some discomfort.

    My rheumatologist visit is coming up.  The doctor is o.k. with the level of prednisone I think I'm needing. My blood work is always elevated - no matter what. 

    If you have regained some mobility through the prednisone treatment - that is so good!

       Thankful you are getting to see the Opthalmologist.  

    This disease has a 'getting used to' curve.  I'm at 22 months and have not adjusted.  My body keeps coming up with new challenges that require different doctors.  

    Hope you get some resolution soon and that you are able to keep your body mobile. Once one has experienced the PMR 'body freeze' - and then the relief - it cannot be forgotten.   Prednisone is my friend. 

    Thinking of you,

    MariGrace 

    • lynda62707
      lynda62707 MariGrace

      Posted

      Hi MariGrace, boy what you said about different doc's is sooo "right on"!

      Started with my primary...from there went to pulmonologist--to Reuhmatologist--to cardiologist, to neurologist-opthamologis--to (still unseen) hematologist!!

      Wfewww...talk about whiplash! Who Knew??

      So many daily changes/challenges! Thank heavens for this forum and all these great folks!

  • nick67069
    nick67069 MKSimpson95

    Posted

    I did not have GCA, but follow this forum for 3 years and learned from other posters - I have to agree with your doctor's diagnose, based on your symptoms. The fact that biopsy was negative does not mean much. Only positive  biopsy is conclusive. Negative means that they have missed the area where GCA. Also being on prednisone may give negative biopsy.

    Since you risk losing sight from GCA, I would suggest to follow /stay on high pred dose. It takes time and everyone responds differently, so please be patient. Usually after 4-6 weeks of high dose, taper starts; hopefully you don't suffer too much from side effects of prednisone in a mean time.

    • MKSimpson95
      MKSimpson95 nick67069

      Posted

      Thanks Nick- yes just trying to reconcile it all in my mind...3 weeks ago I never heard of PMR or GCA.  I guess I am still in the denial stage.  Plus still working full time and trying to figure out what my new reality is going to look like.  

      I will definitely be following the advice of the Rheumy I guess I just want to make sure there was not something else it could be.     Will keep all posted-

      Thanks Lynda and MariGrace for your kind words!

      I hope everyone had a great night sleep tonight and good news at all appoinythis week!

      Best 

      //mk

    • Kdemers
      Kdemers MKSimpson95

      Posted

      I am coming in late on this but do not worry about the biopsy being negative. Mine was too. If symptoms are lessened keep up with prednisone.  Thank goodness you are on Prednisone and your eyes are being checked.  GCA with the headaches is so painful, and can potentially be very dangerous.  If persists maybe an  neurological MRI could be called for.  My doctor did that to see if possibly something else was wrong with me.  We discovered I had had a small stroke.  Do all the research you can. I am taking an antiviral based on the theory that the zoster virus might be involved.  This is not accepted treatment by all rheumatologists, but mine went with it.
    • MKSimpson95
      MKSimpson95 Kdemers

      Posted

      Thank you Kdemers.  I am anxious to hear next steps.  I have read about the zoster connection also.  I have not had the vaccine yet and apparently there is a new “safe” vaccine available. GP has a note in to the Rheumy depending on what the next protocol is.  

      All the best for a good nights sleep!

    • lynda62707
      lynda62707 MKSimpson95

      Posted

      I'm with you MKS...until June this year, I'd never heard of pmr/gca either.

      When my Reuhmatologist informed me I had pmr, I was only concerned with the word 'steroid' and KNEW I was headed down a dark path! Afterall, aren't steroids what gets guys banned from baseball, builds up bodybuilders to grotesque muscles, and cause mammoth "road rage"?? I sure didn't want anything to do with all that!!

      Unfortunately (or fortunately) the prednisone miraculously worked and now has become part of my journey.

      I too, am still in a slight state of denial.

      So I get you completely.

      Let's just all keep on being there for one another!💕

    • EileenH
      EileenH lynda62707

      Posted

      Totally different sort of "steroid" Lynda - pred is a synthetic corticosteroid, similar to the cortisol secreted by the cortex (the middle) of the adrenal glands and which is essential to life. Body-builders use anabolic steroids - synthetic versions of testosterone, also a natural and necessary substance,

      But like so many other things the devil is in the detail: the dose. Small amounts of many things are good - excessive amounts are not. And it doesn't matter whether they are natural or synthetic - sometimes they are good things.

    • lynda62707
      lynda62707 EileenH

      Posted

      Thank you Eileen, as usual, great information! That does, indeed, help at least clear one thing up for me.

      I won't be so worried now about having to sign up for "Mr. World" competition, or running someone down on the freeway!😁.

    • nick67069
      nick67069 EileenH

      Posted

      just to add to that - prednisone has the opposite effect - it reduces muscle mass and that is why it is very important to walk or do whatever you can to preserve the muscles.
    • ptolemy
      ptolemy lynda62707

      Posted

      Thanks so much Lynda for giving me a laugh. I was imagining us all looking like Mr Muscle! Perhaps that is what I really need.
    • lynda62707
      lynda62707 nick67069

      Posted

      YIKES!...that REALLY makes sense (at least in my case). My body seems to be getting progressively "wobbly"! Not liking it at all! It doesn't even feel like there's EVER been muscles in certain areas...so attractive!!

    • lynda62707
      lynda62707 ptolemy

      Posted

      Lol Ptolemy...I aim to please! I still maintain, laughter is the best medicine!😁💕

    • Kdemers
      Kdemers MKSimpson95

      Posted

      Not so sure about the vaccine and will ask doc in 

      Colorado.

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