GCA symptoms

[pomeranion]

I have been suffering with PMR for going on 2 yrs. now. Developed GCA after cataract surgery within 4 days. Finally recognized by great Rheumatologist. I'm being treated with 8mls. liquid prednisolone twice a day. So far so good. Dr. recommended slow taper 1mls per week. Will start tomorrow. I hope I can keep to new schedule. Any suggestions welcomed otherwise will keep posting.

Thank you.

[SnazzyD]

hello, what is the concentration of the liquid?

[Koalajane in reply to SnazzyD]

I believe 1ml equates to 10 mg

[pomeranion in reply to SnazzyD]

1 ml. equals 3 mgs. Therefore, I am taking 8mls.twice a day for a total of 48mgs. per day.

[SnazzyD in reply to pomeranion]

How long have you been at this dose?

So does that mean they want you off Pred in 16 weeks if you are reducing by 3mg (1ml) per week??

[Grammy80]

Hi, I have GCA as well and was diagnosed in 2019. Just wanted to say that I found the support here just wonderful.....so glad you are sharing your story and allowing all of us to take the journey with you. I'm not familiar with mls. and liquid steroids, so I'm of no help medically. My suggestions to you are to listen to your body and be very kind to yourself. If you are happy with your rheumatologist...that is a big plus. I do love mine and trust him.

My best.💞

[pomeranion in reply to Grammy80]

Thank you. I pray everyone can find a knowledgeable support system like this.

[DorsetLady PMRGCAuk volunteer]

No experience of liquid prednisone, but usual advice would be that reducing every week might be too quick..

and did Rheumy advice whether it was better to reduce each dose by 0.5mls [if that's possible] or reduce the early dose by 1mls in first week, and later dose by 1mls the next week and so on….?

[pomeranion in reply to DorsetLady]

Rheumy advised the 1mls first week and later dose 1mls the next week. Starting today.

HAPPY THANKSGIVING

[DorsetLady PMRGCAuk volunteer in reply to pomeranion]

Ok…good luck.. and Happy Thanksgiving to you. You may be okay on weekly reductions initially, but as you get lower might need to stay at each dose a bit longer. Just keep your eye on things,..

[singingloud]

So you are taking a total of 20 mg daily of prednisone that’s liquid? Are you also on pills of prednisone at the same time? If so how much?

Usually when one has been first diagnosed with GCA they are on a total of 60 mg a day. Then tapered slowly so as to mot lose your sight.

I live in the USA but have not heard of this way of treating GCA.

Listen to your body and take care.

[pomeranion in reply to singingloud]

Thank you.

[Groda]

I too developed CGA symptoms 4 days after cataract surgery. I do wonder if there is a connection, especially now that I know someone else (you) had the same experience.

I had both eyes done 2 weeks apart and it was after the second one that I started the symptoms (without knowing anything about Vascular diseases). I did not get diagnosed until I was in the hospital due to relentless fevers for 6 weeks. I was unable to eat properly because my jaw would not let me. It was too painful to chew or open my mouth. The biopsy proved positive for CGA. Has anyone else had this h appen after cataract surgery?

[DorsetLady PMRGCAuk volunteer in reply to Groda]

GCA and/or PMR can be triggered by any sort of trauma or stress - be that an operation, an accident, a virus, a vaccine, mental stress etc … but it’s usually the final straw to an immune system that is already under strain, maybe without you realising it.