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My fathers GCA is getting worse with high dose prednisone treatment.

Posted , 8 users are following.

marinak
marinak

Can someone recommend a rheumatologist with GCA specialty/experience in the Southern California area?

Desperately need help as he now has blindness in one eye. 

 

0 likes, 15 replies

15 Replies

  • Sheilamac_Fife
    Sheilamac_Fife marinak

    Posted

    Sorry I can't help with a rheumatologist as I'm in the UK but I feel your anguish! How dreadful for you both!

    What dose has he been given?  It sounds as if it needs to be ncreased. Some people need truly massive doses to cope with their GCA. Poor man! How terrifying. It's all our nightmares.

    i hope someone comes on soon with a knowledge of Californian Rheumatologists.

    sending love and good wishes

    Sheila

    • marinak
      marinak Sheilamac_Fife

      Posted

      Thank you for you advice and kind words. He's been on 60 mg prednisone tapered down to 40 mg now. It's been one month since he lost eyesight; trying to save the other which is blurred. 
  • Anhaga
    Anhaga marinak

    Posted

    What is his high level dose.  Just yesterday I was doing some reading and sometimes the dose may be started at 60 mg but temporarily increased to 80 if response is not adequate.  Have you taken your father to the hospital emergency department?
    • marinak
      marinak Anhaga

      Posted

      Started at ER 1 month ago when he had numbness; thought he had stroke but MRI neg. He then started on 60 mg prednisone one month ago; now at 40 mg and not improving. Complains of extreme muscle weakness. 
  • ksrkelly
    ksrkelly marinak

    Posted

    Hi there. Not sure where in So CA your dad is. I see Dr. Stephanie Greger in Ventura, CA.
    • marinak
      marinak ksrkelly

      Posted

      We are in Orange County area, but I appreciate your response. Thank you. 
  • EileenH
    EileenH marinak

    Posted

    Unfortunately, marinak, there are very few people on this site in the USA - it is a UK based site and most people are in the UK. There are maybe half a dozen US contributors but they are all over the place.

    How long has he been diagnosed? How long has he been on pred and at what dose? I hope you took him to the ER as soon as the loss of vision started? 

    If he wasn't seen and treated until he already had visual symptoms it is possible that the optic nerve was already damaged so badly that nothing could be done to save it. The problem when GCA affects the blood supply to the optic nerve is that some of the nerve can be damaged due to lack of oxygen supply. That is why the treatment for patients with visual symptoms is started at a very high dose in an attempt to reduce the swelling in the arteries quickly and restore the blood supply in the hope it is before too much damage is done. It is effectively like a stroke or heart attack affecting the optic nerve. 

    If he has already been put on very high dose pred (60mg at least, often 80mg) then they can only try an infusion at an even higher dose and as soon as possible (as much as 100mg for a few days may be used sometimes). However, I'm very sorry to have to tell you that the vision in that eye is unlikely to return, the hope with very high dose pred is that the vision in the other eye can be saved.

    • marinak
      marinak EileenH

      Posted

      Vision loss occurred within a 1-2 day time period; very sudden.  He went to ER because of numbness/weakness;thought it was a stroke but MRI neg. He was started at 60 mg prednisone at that time, (1 mos ago), and is now at 40 mg.   We know vision loss is permanent. We are trying to prevent loss of sight in other eye. Our biggest concern now is his extreme weakness. We expected that high dose of prednisone that he's been on for 1 month to improve his condition but he appears to be getting worse. 

      Thank you for your response. 

    • EileenH
      EileenH marinak

      Posted

      A great deal of the weakness may be due to the pred dose itself - that is one of the listed side effects. However, the pred is only dealing with the symptoms of an underlying auotimmune disease which remains active and in itself can cause symptoms very like flu. The high doses of pred are used to reduce the inflammation and swelling which is the cause of the poor blood supply to the optic nerve - not to make you feel any better.

      If you want doctors who have treated GCA - and really, that will include most rheumatologists attached to a large hospital - then get an appointment with the Mayo.

      However, if the visual symptoms are stable I doubt there is a great deal what can be done beyond what is already being done. The systemic symptoms are likely to remain to some extent as long as the underlying autoimmune disorder is active. There is at present little other option besides pred although a trial using tocilizumab (Actrema) is underway and it is rumoured that the results are very good in getting the GCA into remission. There are a few doctors, including at the Mayo, who are using it but it is currently still off-label use and that means that funding in the US may be problematical. One lady was told by the Mayo that she was to be put on it - she is faced with the possible $17,000 annual cost and her insurance would not cover it because of the off-label use. It is approved for use in RA, it would be covered for a diagnosis of RA but not yet GCA although it is thought by insiders that this may happen within the next 6 to 12 months.

    • EileenH
      EileenH marinak

      Posted

      Sorry - I misread the time he'd been on 60mg - as Sheilamac says, it would have been more normal with visual symptoms to keep him at the 60mg for a month before reducing at all.

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

      One of the links in the first post here is to the "Bristol paper" which is an article by top UK experts aimed at GPs to improve their knowledge about PMR and GCA. They give their recommendations for reduction from 60mg in GCA - a month at 60, a month at 50 and so on.

      Maybe you can discuss it with the current doctors on the basis of that? Experience tells us however that that may not work - one rheumatologist actually insinuated that GCA was "different" in Europe!

    • marinak
      marinak EileenH

      Posted

      Thanks for the link. I think it is very useful information. I will ask his rheumatologist about this.
  • artfingers
    artfingers marinak

    Posted

    I would get a referal from your local hospital or from your own physician is usually best.  For me, (I'm in Michigan), I have actually called my insurance company (Blue Cross Blue Shield) and they were able to refer me to some highly regarded folkds - then I did internet research on them.  I wish you the best!  My brother is in California (L.A.) and I could ask him but he doesn't see a rheumatologist though.  Good luck!
    • marinak
      marinak artfingers

      Posted

      His insurance will cover a 2nd opinion but I am looking for a Dr who has experience treating GCA so I can request that specific Dr. for authorization. 

      Thanks for taking the time to reply. 

  • Sheilamac_Fife
    Sheilamac_Fife marinak

    Posted

    IT sounds like he has been reduced too quickly. 20mg down in one month seems a lot to me. Maybe needed longer on the higher dose. 
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