Is my vision at risk

Posted , 5 users are following.

Diagnosed with GCA and PMR today. Have been in low doses of prednisone for 6 months as it took so long to reach diagnosis. My main concern is if my vision is at risk

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9 Replies

  • Posted

    Without knowing a lot more detail it is impossible to comment - symptoms, dose, why did it take them so long, have they put you on a higher dose if they have decided it was GCA, why did they decide it is both...
    • Posted

      Widespread inflammation in my blood vessels, stiffness head neck shoulders hips and hamstrings. It took so long as liver inflammed and blood tests showed getting worse. I think this threw a spanner in the works. Had MRI and CT scans but PET scan revealed widespread inflammation throughout blood vessels Aorta etc. temporal artery biopsy showed giant cell arteritis. Saw specialist today and diagnosed with both PMR and GCA
    • Posted

      And what dose of pred have you now been put on? Have you had any visual symptoms? Of any sort.

      Those are the criteria as to whether your sight is at risk. 

    • Posted

      Positive biopsy is the clearest proof of GCA.  I have had GCA since September 2016. Started out as PMR in July and the got worse with fever and two times eye symptoms. First something called scintillating scotoma and then a couple of weeks later the same eye turned dark for a couple of minutes. I was immediately put on 60mg pred and when the biopsy was done a week later there was no sign of giant cells. This disease is different for everyone. After I had a flare up in December, I am now using Eileen's method of DSNS to reduce the pred. I have full support for this from my rheum. 

      GCA should react very fast to the high dose of pred that you will be getting now. Good luck!

    • Posted

      I had s biopsy on the left side aabout 6 weeks ago which came back negative however the one I had last week on the right side was positive. Specialist said this is possible as not always conclusive if negative

      No vision problems to date but was just wondering if it's possible

      Taking 25mg pred at the moment

    • Posted

      Sorry that's supposed to say 15 mg of pred not 25

    • Posted

      Barb, 15mg does not seem to be enough to combat GCA. When I was diagnosed with PMR I took 10mg daily first, but after initially great improvement of my PMR symptoms, I got strange headaches, fever, nightsweats, this increased to 15mg and then to 20mg until I got the eye problems at which moment the diagnosis became GCA and I was put on 60mg prednisone daily. I got down to 25 in 3 months and then GCA was back. Now I follow a slower path to reducing pred called DSNS (Eileen's) and am now moving to 22.5mg. I feel good though and do everything I want, while being a little more sweaty and get fatigue when under stress.

      Could be a lot worse, but, then again, this disease is very different for each of us.

    • Posted

      25mg would be a relatively low starting dose for confirmed GCA - 40mg is usual, even higher if the patient has had any visual symptoms at all. But 15mg is a PMR starting dose and the consensus amongst experts is that those doses are NOT enough in GCA. They may well be - but they prefer to err on the side of safety to reduce the risk of visual loss since once it has gone, there is no way back. However, many doctors feel that if the symptoms the patient has are managed that is a high enough dose. But yes, theoretically it is possible at that sort of dose. 

      You obviously have widespread large vessel vasculitis so I would have thought they would have upped your dose. Do make sure you are monitored for cardiovascular problems since the aorta involvement does put you at risk for other things.

      I don't know where you are - but I do know one lady who was initially told she DIDN'T have GCA because of the negative biopsy result. That was by someone who is held to be an expert in the GCA field. She persisted and asked for further investigations and a PET-CT showed a similar result to yours. The consultant obviously wouldn't admit to her face he'd made a serious error there since he sent a prescription with a minion and didn't even follow her up despite her request for that. She had a heart attack - and as a result has moved to a vasculitis expert in London who did express some surprise at how she'd been not-managed.

  • Posted

    Hi barb2540, first calm down, please think of all your symptoms, then post them. Please believe me there are members on this forum who know far more than your doctor. I am not one of them, EileenH is, she has helped me tremendously. Hang on, it will be okay!

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