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Medications for Temporal Arteritis/Giant Cell Arteritis (GCA)
Polymyalgia Rheumatica (PMR) | Last Active: Jul 7 8:52am | Replies (353)Comment receiving replies
I was diagnosed at Mayo on 2 May 2017. I am coming up on 1 year and it has been a long road with 6 more months. I had the biopsy on 3 May and had the diagnosis of GCA. The biggest problem has been the swelling and the weight gain. i was started on 60 mg. of Prednisone and am now down to 6 mg. I had one relapse going from 20 to 17 1/2. I had to go back to 20 mg. and then went to 10 mg. - 1 mg. at a time for 2 weeks between each step. I will be having a ACTH Stimulation test at Mayo on 22 May. This will tell me if my adrenal gland is going to start working again. This was suggested by my Endocrinologist in Orlando before she moved to Texas. The Endocrinology Department at Mayo is handling this for the Neurology Department. I like to look at the bright side since they diagnosed me before I went blind.
Replies to "I was diagnosed at Mayo on 2 May 2017. I am coming up on 1 year..."
Hi @captainkenny, I have no medical training or background but did find a paper on National Institutes of Health site that infers the adrenal gland function is not related to GCA under the Results section of the abstract.
Hypothalamic-pituitary-adrenocortical axis function in patients with polymyalgia rheumatica and giant cell arteritis.
-- https://www.ncbi.nlm.nih.gov/pubmed/12621591
John
Thanks John, Appreciate the prompt reply with information source.
@captainkenney - I have never had a rash and my husband said he was glad they never had to put me on Methotrexate. The Prednisone stops the adrenal cortex from producing cortisol and sometimes the adrenal cortex does not restart making cortisol when Prednisone is removed. I am down to 5 mg of Prednisone and am on a very slow taper. 1 mg a month.
your case sounds very similar to mine....started on 60mg in Feb. this year, am now down to 10mg starting today...I had a relaps about a month ago and had my dose increased for two weeks during that time. I didn't go blind but my eyesight has really gone downhill and my eyes constantly water which is a real nuicance and I still feel the pressure in my head...;my PMR is still an issue but heaps better than it was......I am nearly 64
Hello @robynann -- welcome to Connect. I'm glad you found us. Connect is a good place to ask questions and share your experiences with treatments. It sounds like your Giant Cell Arteritis was diagnosed this past February. Hopefully your PMR will continue to get better. I don't have GCA with my PMR but my first episode of PMR lasted about 3 years and went into remission for 6 years before I had another episode that lasted a little less than 2 years.
In addition to the prednisone, have you had to make any lifestyle changes to help treat the GCA? Eating healthier and more exercise helped with my PMR. I'm sure others here can share changes they have had to make to treat GCA.
John
@robynann - Have you been to your optometrist or ophthalmologist? If you look at the side effects of Prednisone you will see that it sometimes causes cataracts or glaucoma or worsens these conditions if they are already present. I was seeing my Optometrist every 6 months until my last visit and she has moved me to once a year. I am now on 4 mg of Prednisone. I was diagnosed 2 May 2017. I am 75 years old.
question Can Temperal Cell Arteritis affect just one of the eyes and not both?@
Hi Peach @peach414144 -- I think it can affect one or both eyes if left untreated according to a few references I've found.
-- https://www.hopkinsvasculitis.org/types-vasculitis/giant-cell-arteritis/
John
I was diagnosed s few years ago and it went into remission. It came back two years and the rhumotlogist started me on 10 mg. This worked a little while and I got to 5. Then crp and sed rate went back
back to 10 . Have gotten down to 7 until yesterday ....!!
Yeah!!! Crp dropped 5 points so now going on 6 for 1 month then 5 and redo blood work in 2 months. So happy!!!!
Connect
I was diagnosed with GCA three months after you. I started with 40 mg Prednisone and now down to 10 mg. Three weeks ago started going to Rheumatologist who added Methotrexate to see if it would relieve my rash/itch. Is the adrenal gland function somehow related to GCA?