After a week spent at Mayo, I was diagnosed with GCA back in November. I started on 65 mg of prednisone and this past March started Actemra. I do not, nor have I ever had headaches. The only thing that I had was jaw pain. I had a temporal lobe biopsy done after the diagnosis which came back negative. But I had been on prednisone quite a while before that, so they assumed it would come back showing nothing. My life on prednisone, mirrors everyone else's. I never got a puffy face, but I have lost so much sleep, gained 20 pounds and my skin is almost see through with several unsightly moles and skin tags that have almost appeared over night. I am 57 years old, and look normal, but I look like I'm 80 without my clothes. I have never been vain, and believe me, I know vanity has no place here, but it is so hard to see my once healthy body, look like it does now. I am down to 8 mg of prednisone and hope to work my way down to 5 in a few more months.
My doctor went to a conference shortly after I was diagnosed and learned a great deal of information from a doctor who specializes in patients with GCA. He has since passed on that info to me. According to this doctor, she keeps her patients on 5 mg of prednisone, and suggests using Actemra to help with that. It was also suggested by the doctors at Mayo that Actemra will help me get off the high dose and keep me at a low dose (5 mg) without flare ups. So, what I am looking at for the foreseeable future, is 5 mg for two years. The Actemra is an injection I give myself. The only side effects that I have had so far, is extreme exhaustion within 24 to 48 hours after my dose, and now, swollen ankles which Furosemide (water pills), seems to help.
I just wanted to share part of my story, and believe me, there is more to my story than what I have written. It hasn't been the easiest ride, but I am grateful that I found this forum and now feel like part of the cheering sections for all of us that now live with this illness. Gos bless you all and thank you for listening!
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luv2read
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Thank you so much for sharing your story with us all , please keep us updated with your progress , finding out members experiences with Actemra will be especially helpful for those people who may be offered it in the future to help them make their choices.
Thanks for sharing this. I am covered in funny skin tags and warty things too. I thought it was age. Nice if they fell off. ( PMR 3 years 4.5 mgs Prednisalone). Keep us posted.
I'm using an over the counter cream with retinol and it took the funny bumps off my face. I'm in Illinois. Where are you? Assuming you are in the States somewhere. Welcome to this wonderful group. You'll get lots of encouragement and info. It's hard to watch your body change. I don't believe that's vain. I've been here 3 yrs 5 months with PMR now at 6.5 and am now just started looking like myself. I joined weight watchers online and have lost 14 lbs. There is hope! Wishing you well today 🥀
Thank you for the welcome from an Iowa neighbor! I too, am using a retinol cream but as of yet, I don't see any improvement. I have also started thinking about joining some kind of weight loss program. I need to investigate which has the best foods. LOL. I started yoga, which is challenging because of the shakes I still experience from the prednisone. Even at a somewhat low dose, I get the shakes so bad. I walk about 3 miles a day which helps my mind set in dealing with my diagnosis.
In August of last year, I was told I had PMR. Again, it took forever to get that diagnosis. I don't know if you have heard that PMR and GCA kind of go hand in hand. At least that is what I was told at Mayo. If you have not heard this, next time you see your doctor, ask, and if so, look up the symptoms of GCA. I just want you to be aware. I wish I would have known sooner, so I could have been more vigilant in recognizing the signs.
I get the shakes if I try and stay very still or do repetitive movements. When I used the hedge clippers the first few times after PMR whilst gardening I could barely get a cup to my lips. When I had a scan and x-rays I practically quivered trying to remain still.
No reader: My experience with PMR and Prednisone is a bit different than yours. I had a very good Rheumatologist who recommended taking turmeric extract to lessen the effects of Prednisone. I tapered off to 2.5 mg in about a year and 3 months. The turmeric extract really helps.
Hi pszak72, tumeric cannot be tolerated by everyone-it gave me terrible heartburn. Also, if you are taking blood thinners or antacids of various kinds it is contraindicated. It always worthwhile checking whether vitamins or other supplements and foods can be taken with pred or other meds. For example, I am on blood pressure drugs and am not supposed to have liquorice. Hypothyroidism meds interact with walnuts for example.
The median time for pred treatment for pmr is almost 6 years. The most important indicators of relapse are too higher starting dose and too faster taper. I hope the tumeric keeps giving you a hand. ATB 🌻
I have read with great interest your experience of GCA to date. Six years ago I work down through prednisolone and it took two years. Hope all goes well for you with your different medication.
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