Good morning. I have been approved for actemra starting this month.
I have had GCA since October 2018. Started at 60prednisone. Reduced to 9 by July 5 2020. Then lost 1/3 of my eye sight in my right eye overnight on July 6. Up to 50. Now at 39.
My question: what rate did you reduce your prednisone once you started actemra ?
I have my meeting next week with the nurse to learn to inject myself. No one has mentioned yet what to expect with the prednisone. I will have one shot every two weeks.
I would appreciate hearing about others experiences. Thank you.
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alvertta
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In the trials they took 6 months to reduce from the starting dose, about 60mg was usual, so they would be aiming for something like 10mg per month, maybe more at the start. I have seen the table with details but I can't find them.
As far as I can gather it depends a bit on the doctor - some wait a few weeks before starting to reduce the pred dose, others reduce from the start.
Hi I went quite quickly down from 35 mg and then 1 mg per month from 10 mg , now on 3 with the occasional day on 2 as I have been advised to stay on low dose as recently stopped methotrexate. The injections have made a great difference, have been on them 10 months and they have extended them to at least April next year due to covid. If there’s anything you want to ask please don’t hesitate
Usually you only get funding for 12 months of injections in the UK but they have increased the length of time due to covid, I now have blood every 2 months , they do liver function and fbc, they also do crp but not sure why as the actemera
negates it so doesn’t reflect if inflammation present, so far I’ve not had cause for concern
Ok. I have to ask about how long. The government is covering the cost except for $66 Cdn per year. I can go for blood work once a week if I want. I had a flare in July 2020 and lost 1/3 of the sight in my right eye w no symptoms and we ok blood work. So now I am paranoid. Going every week. So far all ok. Thanks for the info.
I’m not surprised you are worried, sight loss is so frightening, I do hope actemera works for you, I really struggled with the illness and the medication prior to actemera, but it’s really giving me a decent quality of life which I couldn’t imagine prior to starting it
Looking forward to that. I was in such a good space until July 6. Good ESR and CRP. able to swim, kayak, walk. Then boom. Overnight the eye went. When I was at hospital my numbers were just a bit elevated. Opthamologist was surprised. So. GCA can be a big surprise. No headaches. No flashing lights. No locked jaw. Boom. Eye going.
I went from 40 mgs to 10 mgs in about 3 months upon my Rheumatologist’s advice. This was easier than it has ever been. 5 mgs drops until 20 mgs. 2.5 mgs until 10 mgs. I am now being hampered by the shortage of gastric resistant 1 mg Prednisalone. Ro-Actemra seems to take care of withdrawal symptoms. I am also happy to discuss my experience with this drug. There is a small group of us.
I started on pred 15mg July 2019 within a week I had lost some of the sight in my right eye and put on 60mg started methotrexate in Dec 2019 got down to 35mg pred but flare put me back on 40mg, started on weekly ro-actema 8 weeks ago down to 15mg 10mg alternate days had my first 10 yesterday in a lot of pain having lost some sight at the beginning it is a worry, at the hospital for blood tests Monday the first since I started the Ro-actema
I am on Actemra 162.5mg every 2 weeks. I get labs biweekly, CBC dif, comprehensive profile, ESR, CRP, Lipids., depending on the labs whether, I can have the shot or not. They will teach you all of that. It has given a better quality of life. I initially was started every week, but could not do every week, because, my platelets would be too low. I also hated the shots!! because I am on insulin, from being on predisone so long, we decided to give my shots in the leg. I literally, hated it and decided to go off, it was awful, I stayed off for approximately 6 months and tried other things, which did not work. I feel much better on Actemra, except for the first two nights after shot, it is difficult to sleep, I feel speedy, so I have a 5mg diazapam for bedtime, which works like a dream for me.
Tapering is easier on Actemra. Just listen to your body!! if one thing, I have learned, dont ignore the subtle changes, and report all, it may keep you from going into a flare or have to go way up on predisone.
I had already reduced to 10 mg when I started Actemra (last week of October 2019) and stayed on 10 mg for a month; my rheumatologist gave me a taper schedule going down 1 mg every 2 weeks but that was too much! I stayed at 9 for 2 weeks and then at 8 for6 weeks - every time I'd try ( even the DSNS) method, I'd be sooo sick! Then did tapering by .5 - I am at 4/3.5 now (should be at 3.5 by the third week of October) and now understand how important it is to listen to your body and take it slowly. The wise people of this forum certainly know what they are talking about when they say that it's not a race to the finish line...and I tried "racing" too many times.
BTW - another wise person on this forum told me Actemra is now available via an "epipen" injection.
When I started Actemra, I had a red injection site "welt" that went away after a few days; I also felt "off" and tired the day after. My nose was also very runny! The nurse in charge of my Actemra protocol suggested I have the injection in the evening and take Benadryl - that way I was able to sleep off some of the "off" feeling; however the Benadryl didn't prevent the welt. I was off Actemra for a month because of illness/infection. When I started it again, I had no problems and the "off" feeling only lasted the first time I had the injection - fine now, except for the runny nose! (Also seasonal allergies)
Actemra has been a game changer for me. My rheumatologist has put in a request to extend the treatment for another year, but is confident I wont need it for the entire time.
My white blood count and neutrophils are low (all the more reason to isolate in these unprecedented times) - my rheumatologist told me this is because of the Actemra - so depending on how low they are this time, I will be having the injection every 2 weeks. All other blood tests have been normal, thank goodness!
Ha ha! Was thinking about you today. After my first shot, we stopped off at the Bay in Oakville to do some shopping for a winter jacket...I was fine, as fine as I could be.
Now for the things I forgot to tell you.... And all these things resolved over a few weeks except for the runny nose. Reactine helps if I remember to take it!
I had an itchy scalp and itchy palms, a runny nose and of course, the red injection site spot - about the size of a 50 cent piece. I’m going to inject in my thigh this week and see what happens.
Since being ill this summer, I’ve been getting really sore muscles in my legs and sometimes in my arms - sore enough that I need to soak in Empsom salts, use the heating pad and take Tylenol. I’m going for a Doppler ultrasound on Friday to check circulation. I read online that Actemra can cause sore muscles... Does it ever end?
You will see that your CRP and sed rate will go down when you have your next round of bloodwork. And give it 3 months ...ever so gradually I started feeling so much better. I hope it works well for you as well!
Ok. We shall see. I cannot take reactine. I have a really bad reaction..shiver, shake. So I will just have to bear it. Anyway. Feeling ok so far. A bit hot and sweaty. But that’s pretty usual w prednisone. Thanks. K.
Had shot 1 today. Easy in. No pain. And so far just feeling tired ( that might be the 5 hours in the car driving to and from the clinic). No other side effects. Fingers crossed. They sent me home w 3 shots so enough for the next two months. Talk to Rheumatologist on Wednesday re reduction in prednisone.
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