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Adjusting to life with temporal arteritis
Polymyalgia Rheumatica (PMR) | Last Active: Mar 29 7:57pm | Replies (239)Comment receiving replies
Hi I am artron9. been a while!
.Still trying to manage GCA I am at 15mg0f Prednisone for the last two weeks and going down to 10 next wk. I feel pretty good! Also i just found out that I am at stage 3a Chronic Kidney Disease. This doesn't help! But i guess that at 82 things start to break down and we have to handle them the best we can. I am really not complaining but then again I guess I am.! I hope to eventually get down to 5 mg without headaches but that is down the road a bit! I am also on Actemra and i am not hearing too much about this drug? I know some of you are on it but i am not seeing much regarding its positiveness or negative experiences? Are some of you taking Actemra? Do you see any positive results that can be attributed to this very expensive medication?
I dont see any change in my physical concerns yet but who knows since it is suppose to be a benefit to those with GCA? I would love to see your thoughts! Artron9
Replies to "Hi I am artron9. been a while! .Still trying to manage GCA I am at 15mg0f..."
All is well from my perspective after being on Actemra for 6 years. No side effects or serious infections that required me to stop Actemra. I have been off prednisone for 4 years. I took prednisone for more than 12 years.
I currently do a monthly Actemra infusion but I started out doing self injections. My only concern is that my symptoms return when I attempt to go 2 months between Actemra infusions. I haven't been able to discontinue Actemra. My rheumatologist thinks Actemra is a better option for me than taking Prednisone for the rest of my life. I would have to agree but I would still like to be able to stop the Actemra infusions eventually.
Sorry about your kidney disease diagnosis.
I've been taking Actemra infusions for three months--every 4 weeks. I noticed an improvement in how I felt, within the first month. The main benefit for me is the ability to reduce my prednisone dosage by 1 mg., every 2 weeks, without issue. I am currently at 8 mg. This is the level I was at in early December, when I had a flare. Along with the flare, my GCA symptoms returned. They improved when I increased my prednisone the first of January. Now, I only have minor joint aches upon waking, but they subside as the day goes on. I have 3 good weeks a month. Energy level is very good during those 3 weeks. A few days before my infusion appointment, I start getting more tired and a little more achy. About 3-4 days after my infusion, I'm feeling really good (for the next 3 weeks!)
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Artron9, I have been taking Actemra for 8 months, and it has been very beneficial for me. I haven't had any side effects, and it has allowed me to taper the prednisone from 60 mg down to 5 so far without any issues. I will stay at 5 mg for the next month.