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?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

artron9 | @artron9 | Feb 28 9:13pm

Why are most of these responses nearly nine years old?

artron9 | @artron9 | Feb 28 9:15pm

In reply to @artron9 "Why are most of these responses nearly nine years old?" + (show)

I got it! Sorry for my confusion!

artron9 | @artron9 | Feb 28 9:19pm

In reply to @jeff97 "My experience is very similar to yours. I was diagnosed in late June 2024 with PMR..." + (show)

My dr said to try 20mg from a low of 5mg. I suggested 7mg. That did not help so I went to 8 then 10. Now I am at 12mg today. Lets se what tomorrow brings? Did I mention that I am also injecting Actemra weekly?

jeff97 | @jeff97 | Mar 1 7:30am

In reply to @artron9 "My dr said to try 20mg from a low of 5mg. I suggested 7mg. That did..." + (show)

You did mention the Actemra. That should help control the inflammation from the GCA. Let us know how things go.

artron9 | @artron9 | Mar 2 6:47pm

In reply to @artron9 "I was diagnosed in Sept 2024 with GCA. I started off with 60mg of Prednisone after..." + (show)

I'm artron9 and today"s update has me moving up to 20mg for the next 2 wks. My dr is suggesting this dose since I developed headaches when I got down to 5mg. I worked myself up to 12 mg and the headaches were gone. When I picked up my next Pred prescription, I saw that the dr wants me to up dose to 20. So today I started 20mg for the next 2 wks and then drop down to 15 for the following 2 weeks. I may have been ok at 12mg but for now

artron9 | @artron9 | Mar 27 8:07pm

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

jeff97 | @jeff97 | Mar 28 2:55am

In reply to @artron9 "Hi I am artron9. been a while! .Still trying to manage GCA I am at 15mg0f..." + (show)

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.

DadCue | @dadcue | Mar 28 6:32am

In reply to @artron9 "Hi I am artron9. been a while! .Still trying to manage GCA I am at 15mg0f..." + (show)

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.

ropnrose | @ropnrose | Mar 29 7:57pm

In reply to @artron9 "Hi I am artron9. been a while! .Still trying to manage GCA I am at 15mg0f..." + (show)

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!)