Starting Actemra for PMR, RA and GCA looking for others currently using Actemra?
Question posted by Nitrobunny on 19 Sep 2016
Last updated on 13 March 2022 by darrendog
Hello! I am starting Actemra next week. I was Dx with PMR in 2004 and in January of this year and landed in the hospital with GCA and the worst headache of my life. I also have RA. I switched rheumatologists and my new one recommended I research and consider starting Actemra. I would like to know if anyone has been successful in managing their conditions with Actemra and any advice anyone has would be greatly appreciated. There are two studies out this year with fantastic results. I'm hoping others may report the same.
I was diagnosed with GCA because of my blood SED rate was sky high and feeling of locked jaw and my left eye had a large blood vassal plus very very fatigued
my rheumatologist gave me high does of prednisone 90mg don't remember how many times a day
then wined me off and for over 3 years every week I take my Actemra
I so its @4 yrs since I was diagnosed and soon Ill be 65
next visit I will my doctor might lessen the dosage however I get stomach poops and sounds and my head aches on top of my head otherwise you would not see or no I have a problem I can work and a normal function as far as work play and eating and relationship with my wife
hope this helps someone.. darrendog message created 3/2022
Votes: +0
DD
ddove1
7 Dec 2017
I have been on the pre-filled syringes for Actemra since my Enbrel stopped work (on it for 15 years). Started the injections June or July of 2016. It took a little while to work (about 2 months). I do not take anything for pain, not needed. Do the injections every 2 weeks. It has worked well for me so far. Oh I have RA. Had it since Spring of 1975.
Votes: +0
LI
LionessLady
7 Dec 2017
I just had my second episode with GCA, and my rheumatologist recommended I start Actemra this time. I am still doing the blood work, so haven't started yet, but would also be interested to see if this will control the flare-ups. How are you doing? Are there a lot of side effects with this?
Votes: +0
CO
copshop
18 Aug 2017
I don't have anything to add on this one, Nitrobunny. I did want to wish you, and all of our companions on here, all the best. I'm sending well wishes and prayers that you get through, and improve and feel better. Copshop
P.S. i think its good to see some advances in treatments happening. To those that don't know... your rhumi is so important. You need the best you can find.
Votes: +1
NI
Nitrobunny
19 Aug 2017
Thanks Copshop! I'm doing pretty well despite having to stop Actemra 10 months into it. It worked well however I developed a severe reaction to it after the last infusion and vasculitis that went away after the Actemra was out of my system. Actemra was amazing while it was working well for me and allowed me to get my prednisone dose down. For the moment I'm taking a break from everything except prednisone and see how I do.
Best~
BL
Bli
19 Aug 2017
I notice that everyone mentions Actemra infusions, I give myself sub cutaneous Actemra injection once a week, very easy, a pre loaded Actemra Syringe. So far I do not have any side effects. Thanks to the Actemra I was able to reduce my prednisone from 30mg to 5mg.
LM
Lmpa65
18 Aug 2017
I have been on Actemra for about 1 year. Mostly it has been great for me. I was having flu type symptoms about 2-3 days after my infusion. My doctor added Leucovorin which is high dose folic acid and those symptoms of joint pain, muscle aches and fatigue subsided. I have infusions every four weeks. I have Cogans Syndrome a form of vasculitis and have been without a flare since starting the Actemra. Good luck to you with your new treatment.
Votes: +1
BL
Bli
18 Aug 2017
Hello I was diagnosed with GCV in June 2015. By February 2016 I was unable to reduce my daily prednisone below 30mg without my symptoms returning. I started Actemra in April 2016 and was off Prednisone in February 2017. My GCV is under control, all my bloodwork is normal but unfortunately I now have PMR. I'm still taking Actemra 1 time per week and back on 5mg of Prednisone daily since April, the pain dissapeared. It is now August 2017 and for the past week I'm cycling between 5 and 2.5mg of prednisone, aches in my neck and thighs has returned, I will take my time not to have a relapse. How did the Actemra work for you?
Votes: +2
JA
janjan4075
12 March 2017
i Started Actemra In Jan.2016 after being on large dose of Pred for 4 years for PMR AND GCA and after failed methotrexate treatment. I begin to improve after 3rd IV Dose. I was able to reduce prednisone dose from 40mg to 10mg. I was having no flare ups, energy level was increasing and I felt really good. IN June of 2016 ..after dose 6 ... I had sudden onset abd pain that was a ruptured bowel. ( The number one side effect listed for Actemra). Because I had such a big improvement of the RA problems on Actemra it was decided by me and a collaboration between my internist, Surgeon and RA specialist to remove most of my colon and do a permanent colostomy. It was a very easy decision for me. I am now back on Actemra. The Pred dose is coming down again and I am relatively pain free. The colostomy is not a problem to manage. Bottom line, I am happy to be back on Actemra . Be sure you discuss all the side effects of this drug and what your options are if the treatment fails with your Rheumatologist. Know All the pros and cons. Good luck to you.
Votes: +3
NI
Nitrobunny
12 March 2017
Oh my goodness you've definitely been through the mill with this. Thank you for your response!
That is precisely what I am scared to death of although I have to say if faced with the same thing I'd do the exact same thing you did. So far I've been pretty fortunate but every twinge of pain in my abdomen stops me in my tracks. I'm by no means a hypochondriac, more like the opposite, I generally ignore pain for the most part because of a history of cancer and autoimmune issues but I know the ruptured GI issues are nothing to mess with. Did you have any warning at all about the rupture? Did you run a fever? What was the pain like?
Thanks!
JA
janjan4075
12 March 2017
Nitrobunny.. In the past.. pre PMR GCA ..a routine colonoscopy found a very early very tiny carcinoid which resulted in a partial colon resection. That led to IBS... so I tended to ignore abd pain. However.. the pain from rupture was gradually intensifying and caused pain in my right shoulder area . I ignored it for about 12 hours. DON'T do what I did! Don't worry about being a hypochondriac . If you have abd pain for any reason that last longer then a say an hour.. call your MD. (in my case it was my primary internist) I am so grateful for Actemra.. Happy that you have positive results too. jan
NI
Nitrobunny
13 March 2017
Thanks so much for your response Jan! At present the occasional pains I get come and go pretty quickly but it's good to know that the pain can travel, I would not have associated shoulder pain with a ruptured bowel but of course there are so many instances where pain travels. Thanks again for your time and consideration, I will definitely heed your advice.
My dad is getting ready to start taking Actemra at the suggestion of folks at Cleveland Clinic. It is still considered experimental in the US for PMR/GCA but we are hopeful it will help. He has been on prednisone for about 15 months, starting at 60 mg, only down to 40 now. He has extreme osteoporosis only diagnosed after 5 broken vertebrae and now congestive heart failure, also missed diagnosis. He likely won't start the drug until after the first of the year. I'm praying for a miracle because things are looking grim. Would love to hear about your experience Nitrobunny.
Votes: +1
AD
adnoira
12 March 2017
Hi! Did your dad tried Prolia? I have PMR and RA started on prednisone 4 years ago, 55mg a day, my bones were so bad I broke 3 ribs coughing. That's when my doctors realized the osteoporosis was bad so they gave me Prolia. Is an injection you use every six months. On the first year of use I went from red to green on bone density studies. I take Ultracet for the PMR and Celebrex for the RA and down to 5mgs of prednisone, This mix keeps me pain free. PMR is related to high levels of stress so if you are very stressed you get a lot of pain because your ligaments get inflamed and swollen. I am visiting an acupunture center and the stress has gone down a lot with acupunture.The doctor that puts me the needles blocks the cortisol production which is the thing that causes inflamation.
NI
Nitrobunny
12 March 2017
Hi! I'm so sorry I didn't see this before but I'm happy to share my experience with Actemra.
I started the Actemra infusions and still get them at the full dosage every four weeks and it has been life changing. The first two doses were about half what I'm getting now a s I didn't have any side effects. I went to the full dose at the third month and that's when I started to notice the difference in how I felt. My sed rate went down to 1. My GCA and PMR are in check which is life changing and my RA while not in remission is far better than it was. I am stronger, my endurance is almost back to normal and the balance problems I had are gone. I'm tolerating it very well and I'm doing the best I've done in years. The only drawback is I am very tired for the first couple of days after the infusion but it's not a bad or sick kind of tired. I can literally feel the difference in the inflammation soon after each infusion.
I start to degrade around the third week and by the time I'm scheduled to have the next infusion I'm a little more achy than I am earlier in the cycle. I'm down to 5mg of prednisone and still weaning off of it completely.
I hope your father started it and is doing equally well!
