Adjusting to life with temporal arteritis

@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.

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.

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.

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.

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.

@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.

@kobellava Sorry to hear about your condition. I was on 1.5 mg ready to go down to 1 but had a relapse. Now I'm up to 2.5 mg and will see ophthalmologist Fri to figure out a better time frame for weaning off Prednisone. (I was getting weird headaches throughout the day, then about 3:30 am got severe pain around the temporal artery, iced and took baby aspirin, finally fell asleep. Reported to ophthalmologist and rheumatologist so they could tell me what I needed to do.) Any way we'll see what happens. GOOD LUCK! Temporal Arteritis has NOT been fun

@istraz34 Thank you, very sorry about what you are going through too. My relapse in March started around the temporal artery. Got progressively worse over a couple days and was moving into my jaw. Couldn't take the pain any longer so I increased Prednisone to 20 mgs, gradually over a couple days because I was at 5 so was trying to see what level would take away the pain. This time when I got to 6 it was awful with fatigue and the low blood pressure so went to 6 1/2 and was fine. Starting to struggle with the fatigue again at 6 1/4. I hope you have the pain under control. Best of luck to you too and wishing you well. Let us know what the doctors say.