1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

GCA vision loss and initial start dose prednisone

Posted , 5 users are following.

Missymia
Missymia

hello.

My Mom, who is 82 years old has suspected GCA. She has already lost vision in one eye, and is waiting for a temporal biopsy, which she will have this coming Monday. after reading about GCA and PA, I am sure she had symptoms of PA two years ago, but was not sent to a rheumatologist by her GP, as she should have been then. My worry right now is that she is not on a high enough starting dose of prednisone given her vision loss. She currently has developed vision disturbances in her 'good eye' now, and does not see the specialist again until Monday when she is scheduled for the biopsy. I am worrying that she will lose her vision in the remaining good eye. Her starting dose of prednisone is 40 mg once a day. She is small; weighing about 100 pounds. Is this a high enough dose to start given the vision implications? I tried to get her to call the doctor and ask, but she says no, she will wait to see them on Monday. (Today is Saturday). 

I'm in a different province so am not there, just talking on the phone. I'm scared

, and feel helpless. 

0 likes, 5 replies

5 Replies

  • mike39589
    mike39589 Missymia

    Posted

    Hello Missymia, 

    What a horrible situation to find yourself in. If you can't arrange for her to go to her local emergency Dept, probably the best thing you can do untill she sees the doctor on Monday is to persuade your mother to top up her dose to at least 60mg per day, which I think is the mormal minimum when sight is involved.

    I really do hope your mother gets things sorted out on Monday, and you can relax a bit. Then get her to change her GP!

    Let us know how things go.

    ​Mike

     

  • sue-dorset
    sue-dorset Missymia

    Posted

    hi Missymia,

    I was in a similar situation to your mother, having already lost sight in one eye before diagnosis confirmed (by Ophthamologist in hospital A&E). I also think Id been suffering from undiagnosed PMR for 18 months. I was started immediately on 80mg to preserve sight in other eye (40mg does seem low considering what's already happened). In my case, it was decided that biopsy was not required, case already proven. I was kept on that dose for two week until the doctors were sure the other eye was ok. Then reduced to 60mg.

    The problem with her good eye may be a reaction to the Pred, but it could be more serious.

    I know you are worried, and I don't want to add to that but from personal experience I would suggest your mother is not on a high ernough dose to be sure. Try and get her to increase to at least 60mg until her appointment.

     

  • Guest
    Guest Missymia

    Posted

    This is serious. You must help your mom preserve the vision in her other eye ASAP. She needs intravenous pred at 60-80 msg now. Sue is correct...no need for a biopsy..she has GCA. Treatment is high doses of pred for a long time. I was put on 60 msg for a month after bigger dose in hospital...then 50 for a full month,etc. please do not wait, ann11195
  • tina-uk_cwall
    tina-uk_cwall Missymia

    Posted

    Hello missymia, thank heavens your mother has a daughter who cares so much for her welfare, but as you cannot be with her it is no surprise that you feel scared and helpless. How long has your mother been on the 40mgs? This is an appropriate starting dose for GCA however, it is not unusual for patients who do not respond well to have their starting dose upped, hence my question.

    in England it is not unusual if a patient has already lost vision in one eye to be admitted into hospital and have an iv of steriods in order to save the other eye.

    also it is important to have the biopsy within 2 weeks of receiving the first dose of steriods because any longer and the giant cells may no longer be there as the steriods would have done their job and reduced the inflamation.

    i'm with you on this one though. If she is experiencing further eye problems then her dosage needs urgent reviewing and I'm sure her refusal to pop along to urgent care or whatever it is you call our casualty or accident and emergency is down to her feeling of not wanting to be a bother but she has to be because clearly she doesn't want to lose her remaining sight.

    i have to agree with all the others. If you cannot persuade her to visit casualty then she must up her preds to 60mgs minimum and now. Do keep us informed. I wish you both all the best, regards, tina

  • helen21602
    helen21602 Missymia

    Posted

    The ophthalmic consultant prescribed 60mg Prednisolone for me before any tests were done but immediately after I'd lost 90% of the vision in one eye.  My sight is now recovering and this removed the threat of vision loss in my other eye.  9 months on I'm now down to 10 mg and continuing to reduce this by 1 mg per fortnight. 
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.