1. < Polymyalgia Rheumatica (PMR)
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Adjusting to life with temporal arteritis

Posted by MLeeB @MLeeB, Mar 21, 2016

Would like to hear from people that have gone thru or going thru temporal artritis. I am now going on my 5 month after being diagnosed. It is getting better but very slowly. Is this normal?

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liz26 | @liz26 | 1 day ago
In reply to @hughebo2 "@liz26 The process is slow because the inflammation needs to be controlled. Some people struggle with..." + (show)
Profile picture for hughebo2 @hughebo2

@liz26 The process is slow because the inflammation needs to be controlled. Some people struggle with this process and even relapse while tapering from prednisone. Your rheumatologist helps with the management of this through routine blood tests and monitoring your tapering. You may want to talk to your rheumatologist about adding a steroid sparing drug. Yes, they are expensive but are covered by some insurance programs. While all drugs have side effects, I was eager to wean myself off prednisone asap so introducing the Rinvoq early made sense to me. Sleep management is much worse when you are on high doses of prednisone. Your sleep will improve as you taper to lower doses.

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@hughebo2
Thanks so much for sharing what worked for you. I will be having a conversation with my rheumatologist about rinvoq and others. I understand tapering down from Prednisone is a slow process.
Be well.

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jsm789 | @jsm789 | 1 day ago
In reply to @maddboat02 "7 plus years diagnosed GCA via biopsies on both temporal region. I am not a believer..." + (show)
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7 plus years diagnosed GCA via biopsies on both temporal region. I am not a believer of being diagnosed with GCA without biopsies as there are so many other issues that could exhibit same. I was not exhibiting “text book” symptoms. Although it was rough until diagnosed, infused monthly (x 5 yrs) Actemra was the best treatment for me. My insurance (Medicare + Capital Blue Cross) covered all infusions. No other drugs accompanied the infusions ie, Prednisone, or the other drugs mentioned in the various blogs. I am in remission (2 years) and getting routine blood work follow-up. Going off Actemra did not present any adverse reaction for me although it was tapered.

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That's great to hear. I've been taking Actemra infusions for several months now and am attempting to taper off Prednisone completely. When I get down to 6mg, I begin having headaches again. My rheumatologist believes my GCA is gone since my inflammatory markers are normal. But it feels like it's still there to me, just being masked by the Prednisone.

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jeff97 | @jeff97 | 1 day ago
In reply to @jsm789 "That's great to hear. I've been taking Actemra infusions for several months now and am attempting..." + (show)
Profile picture for jsm789 @jsm789

That's great to hear. I've been taking Actemra infusions for several months now and am attempting to taper off Prednisone completely. When I get down to 6mg, I begin having headaches again. My rheumatologist believes my GCA is gone since my inflammatory markers are normal. But it feels like it's still there to me, just being masked by the Prednisone.

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@jsm789 At 6 mg you are getting close to the point where secondary adrenal insufficiency can show up. According to google, "Headaches are a recognized part of glucocorticoid withdrawal syndrome, alongside fatigue, dizziness, and muscle aches."

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dbyrne | @dbyrne | 3 hours ago

I was diagnosed with GCA 3 years ago this past July. Was tapered off prednisone, then began Actemra shots every other week. I am now tapered down from the shot to once a month. I am in clinical remission, but my Dr. wants me to continue with the once a month shot. Had to switch to Tyenne because my state took Actemra off all the Medicare drug formulary’s & forced you to switch unless you got an exception, which I tried but was denied. Took Tyenne once, had no reaction. Then the Dr. called & said notification was received, they ran out of Tyenne, so back on Actemra once a month. Good luck to you on this GCA journey.

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kobellava | @kobellava | 2 hours ago
In reply to @jsm789 "That's great to hear. I've been taking Actemra infusions for several months now and am attempting..." + (show)
Profile picture for jsm789 @jsm789

That's great to hear. I've been taking Actemra infusions for several months now and am attempting to taper off Prednisone completely. When I get down to 6mg, I begin having headaches again. My rheumatologist believes my GCA is gone since my inflammatory markers are normal. But it feels like it's still there to me, just being masked by the Prednisone.

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@jsm789 I got down to 6 mgs last week on my second taper but after a few days my blood pressure was getting low, getting very dizzy every time I took a few steps. I went back to 6.5 and it stabilized my blood pressure. I think my problem is my adrenal glands. Your headaches could be Prednisone withdrawal but it's hard to say. I hope you get it figured out.

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