I was diagnosed with Temporal Arteritis 3 years ago I learned that blindness and stroke was a possible outcome if it was left untreated so I started on 60 grams of prednisone, tapering down over 18 months. My symptoms were gone in 2 days after taking Prednisone (jaw claudication and tender scalp) but a week later I woke up with vision problems and called my doctor. He said to go to 80 grams for a week then 70 grams for a week then back to the 60 gram tapering schedule he gave me initially.
Two months after finishing my last dose my blood work showed elevated CPR again so I went back on prednisone for another 18 months. This time, the doctor added Methotrexate with the Prednisone. Before my original diagnosis I was in excellent health and very fit and active for a 63 year old. Now I felt like I had aged 20 years in just 2 years. The doctor’s told me they don’t know what causes these autoimmune disease and they don’t have a cure and can only suppress the symptoms with drugs. I had no energy and felt sick for 5 days after taking the weekly doses of Methotrexate and all I could do all day is sit. So I decided to spend my time reading and researching my condition and other autoimmune diseases.
One of the most important things I learned was the importance of vitamin C, not just because I had GCA, but for everyone, healthy or not. I'm taking high dose vitamin C to control my inflammation and I believe it is keeping my CRP low, which is my main goal at this point.
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Mark506
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It is so good to hear a positive story even though it takes years to transpire, well done. Keep your chins up everybody, let's look forward to better days.
Hi Mark, Good to hear you are GCA free your story is similar to mine except I am only in year two and now on 7.5 pred with MMF tried AZT but bad reaction. Also on vit C. I am 69 now but like you seemed to age overnight. Although unlike you I went blind in right eye even after being on 60 pred for three days. Wish I had seen this site a year ago!
Well done on getting into remission. So good for others' morale to hear there is light at the end of the tunnel.
I'm a great advocate of Vit C, been taking it for about 15years, started when my husband was chronically ill and I didn't want to bring any 'nasties' back from the office. It worked, haven't had a cold for years.
However, it did absolutely nothing for my inflammation and subsequent GCA. Undiagnosed for 18 months culminating in loss of sight in one eye, so I would urge you not to rely entirely upon it to control any inflammation. Nor to lead others to think that way, could prove to be a dangerous path to follow. Pred is the only drug that's proven to work.
As I've said in another post, think my GCA has been in remission for somewhile, but am still on the (very) last legs of my Pred reduction - just started the 1mg to 0.5mg drop. And still on the Vit C.
I'm not suggesting at all that someone replace their prednisone with anything. If my GCA returns I would go back to prednisone in a minute. I'm saying for me, adding high dose vitamin C helped my side effects while on prednisone and has helped me control my inflammation now that I'm off prednisone.
I'll mention also that vitamin C is like prednisone. You have to take the right dose. When I was diagnosed, I started at 60 mg of pred. which immediately improved my symptoms. Had I taken 5 mg., I doubt that it would have done anything and I would be saying this prednisone drug doesn't work. Vitamin C is the same, if your body needs, say, 30,000 mg and you only take 2,000 mg. you will find it does nothing as well. Everybody's body is different and each person needs to find out how much vitamin c your body can use. For me it's 55,000 mg/day, whereas a completely healthy person, like my wife, only needs 10,000 mg/day.
Willing to accept that Vit C may help to control your inflammation, but as an old cynical campaigner with a torn and bloodied T-shirt maybe not totally convinced.
However its good to hear how others cope with GCA, there's always something new to learn, and as said in my previous response hope to join you soon in remission.
Would just add -- need to be careful of any doctor who prescribes 5 mg to start for GCA.
I started at 100 mg.s by injection, in the hospital where I was biopsied.
First week home, 80 MG's a day. Opthmalic exam showed some loss of peripheral vision, which remains.
End of the first month, was at 70 MG's and then lower. Had a difficult time w high doses of prednisone. My cheeks and chest were bright red.
Was diagnosed w Cushing's syndrome ( due to medication). Have had some very good doctors, unfortunately not good rheumatologists , who know this disease.
Have a very good ear nose, throat doctor who actually studied GCA and has tried to give some guidance, -- which, I very much appreciate. Seeing another rheumatologist end of next month. She has written a paper on GCA.
I think, it was into the first year that I found this blog. Some good advice.
For me--- it was -- ah -- well -- there are others who have this disease and are struggling with it, also. Some good exchanges. There is good information, here, on many aspects of the disease ( including Cushing's Syndrome) and living with it. Would urge you to look through it.
Pred reduction is good. I understand they are calling it "dead slow ... stop", which is apt and after a few years of experience, I am in agreement with.
Hi Mark, I also have GCA with some vision loss. I have also tried methotextrate which helped with the inflammation. I am currently taking a low dose medrol, no methetextrate at present. I am taking alendrate (sp?) to help keep my bones strong. I also take a low dose coated baby aspirin.
I like what you have said about Vitamin C and will try it.
Glad you are researching. I am, too. Would you keep us posted with any information, which might help?
I agree, it is a long struggle with both GCA and prednisone.
If you are on Facebook there is a very good group - Vitamin C & Orthomolecular Medicine For Optimal Health" where you can find good information from experienced users. Good luck.
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