Haven't been around much lately. This has probably been the worst, six months of my seven years with pmr and final recent eye surgery for double vision 7.8
Have spent the last six months deciding on starting Actemra at the urging of my rheumatologist. Round and round with insurance (U.S.) appeal, re-submission then informed it was approved on Friday . A major shock. I had my first infusion Monday this week 8.12. Experienced nausea, headache, extreme tiredness overall, not well feeling about 27hours following. Guess this is possibly normal
My question is this. For those of you who have started down this Actemra/Prednisone reducing road, at what point, and by how much mg did you do reduce? I was on 20 mg. all 2024 after relapse and not holding inflammatory markers. Never expected before. Dr told me today via portal to reduction of 1 mg every week if feel okay. Does this sound right?
Thanks so much.
Janet
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JanetGarrettN
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None of the clinical trials were for the infusions, only the weekly or biweekly injections. My rheumy told me to wait 3 or 4 weeks at least after the first injection before starting to taper the dose and then to see how I felt - though he said slowly which is what your rheumy is also saying.
Some others on the infusions have found the effect seems to wear off towards the date of the next infusion and I wonder if this is the cycle of receptors meaning there are new ones coming online that are not being occupied by the Actemra (that is how it works, it occupies the receptors that the IL-6 must attach to in order to exert its effect).
I'd wait at least a couple of weeks and possibly until the second infusion before starting to reduce the dose - but there are no studies I know of that look at tapering with the infusions.
Thank you for your response pmr pro. I looked everywhere. Could not find a single thing on the topic. I had been working with the Genetech Foundation when insurance had denied. They have been extraordinary and they do have a department where I might find more information worth a try.Actemra is not FDA approved in the U.S. for PMR HOWEVER My doctor submitted articles supporting it's use and insurance reversed and approved it in two days.
This Rheumy has always been like many, in a rush in a meeting, in a rush to make taper. Actually, when his nurse called me yesterday, she said I was to reduce 5 mg per DAY. My jaw Hit the floor hear it. I told her that nowhere. Have I ever reduced anything by a day period then she said buy 1 mg at that point. I was not taking any more guesses and sent the doctor a message on the portal which is how I got to 1 milligram per week based on how i'm feeling. So I'm keeping in the back of my mind that is a minimum of 2 weeks For a taper to possibly rear its head that it is or is not good. I have also seen information that you referenced about the effects running out before the next injection, which for me, would be september thirteenth, about a week after the norm due to schedule conflict.
Well, I'll see if anyone else has anything else to say from their experience, and I'm just gonna take it casually. Why the hell would I rush at this point in the game?
"Why the hell would I rush at this point in the game?"
Quite!!!! It's your body and you have to live with it.
After about a month with the injections and for PMR I started to reduce from 19mg at a rate of1mg every couple of weeks - DEPENDING ON HOW I FELT. I think that was faster than Christian my rheumy had suggested but he left it to me. He has had quite a bit of experience with it in trials.
I'm in the States also and have been on Prednisone and Actemra for five years for GCA. I've taken the weekly epi-pen injections. My rheumy believes in Actemra even after zero pred. My doctors were originally hesitant about the Actemra due to various intestinal issues....but I've never had any reaction to it at all. Maybe because it is a lesser amount each week?
I don't believe there is anything 'typical' about these autoimmune disorders~~nothing. If you look at my recent posts, you will see I got down to zero pred and had a flare within one month. Over the past five years, my tapers were like a roller coaster ride, and I finally reached ten mg this spring. Your body chemistry, stressors, and life....will play a big role in your taper.
Kudos to your doctor for working so hard for you!! If you look at my posts, you will see why my decisions are strongly symptom-based. What exactly do I feel? What works? Even bloodwork is not a pure indicator of inflammation.
"Why the hell would I rush at this point in the game?" Right! Worry makes it worse....and doesn't help a bit....I agree. Listen to your body. Maybe they can counteract the nausea with something? I can understand the fatigue; it just seems to be a part of the program.
Thanks for your message Grammy80. I really feel for those of you who have GCA on top of PMR. My experience of not being able to raise prednisone to more than 25mg due to severe suicidal ideation which I experienced for 3 months earlier this year.I just can't imagine how everyone manages.I think listening to my own body makes the most sense rather than bei g guided by some steadfast, hard rule about a taper every week.
Deciding to continue power washing was probably not the brightest thing I could have done yesterday. I'm definitely paying for it. I slept for about 11 hours and was relatively sore in my back arms and hamstrings. So today I have taken it easy. Thank you so much for your input. I really appreciate it.
It is hard sometimes to accept we aren't the boss of ourselves~!!! It is only temorary~!!! So glad you slept eleven hours, I've often done that myself. When my tapering got serious, my rhuemy would have me stay on the reduced dosage for a month. I'm happy you are tuning in to YOU~! 💞
Hi Janet, I’ve been on Actemra injections for around 4 years now. My initial taper to 0 was over a long period of time, at least 2 years and my rheumy found that amusing but she backed me. I was off pred for just over a year up until around 7 weeks ago when blood tests showed that my inflammatory markers were through the roof, but I was feeling fine. At that point we were attempting to stretch my shots to 4 weekly, obviously a jump too far and with still active GCA, things went awry. As I mentioned, my initial taper was reasonably slow but since I have been back on prednisolone, the taper has been rapid … 25mgs down to 10 in 7 weeks. Bloods are good, I feel fine, so all going well. HOWEVER, the experts on here, PMR pro and DL, will tell you that Actemra masks inflammation in blood tests so I’m going to eventually have to go off Actemra to see what happens. This is long winded but just to say, do the taper at YOUR speed. Actemra definitely makes tapering easier but I wouldn’t say it’s faster. No need to rush. Ensure that you feel well before you reduce which will ensure that you can keep tabs on what’s going on. I’m an Actemra advocate, as people know, but it did mask a dripping tap of inflammation that eventually we discovered by accident 🤷♀️.
Hi, lemon zest.Thank you for your response. It was just a very brief comment in passing earlier this year. My doctor mentioned that using the Actemra, would help me get down/ off prednisone in a matter of months rather than the years I've been at it (since 2017). I did come off the end of November at zero, but within nine weeks had relapsed and symptoms and inflammatory markers. I can see the logic being on a small dose, a half or a milligram if that could make the difference between relapse or not. Unfortunately, my doctor doesn't subscribe to that thought process, but I can't worry about that until I get there. I hope things continue to go well for you. Take care.Janet
Hi Janet, I have been on Actemera infusions for almost two years. My first infusion left me feeling a little off so I took a Benadryl. I never had any side effects after that. I also have GCA. I was able to reduce my prednisone to 1mg by doing a slow taper, 1/2 mg every two to three weeks. Once the GCA started acting up, I had to increase my prednisone. I am on my way back down with prednisone to 3 1/2 mg. I did the very slow taper to reach this point. I will stay at this dose for at least a month or two before I reduce anymore. If after your second infusion you have side effects, make sure your doctor knows about it. How many mg of Actemera are they giving you? I am getting 500. All the best and let me know how you are doing… 🌻
You are aware that Actemra only deals with one of 3 potential causes of inflammation in GCA? Half of GCA patients need a low dose of pred alongside the Actemra to manage the effects of these other 2 underlying causes.
Thanks for your reply, Plains. It's nice to hear from someone who is on the infusion. I believe my dose is around 355. The nurse said it's by weight. I give so much lab work out of my right arm and have a lot of scar tissue that I wanted to try my left arm for the infusion. Couldn't find a vein in my left arm, even tried further down the left inside forearm, looks like I've been hit by our baseball! She said vein "blew out." So ultimately we ended up back at my normal. right arm. Half way through the drip, the needle backed out so it was restarted. Hopefully Friday 13th, my next appointment will go smoother, lol! It took me a lot to get to the point to accept trying this biologic. I think slow and steady will win the race.
I was on 40 mg prednisone when I started Actemra. Rheumatologist wanted me to reduce 5 mg every week which I did til I got to 10. He still wanted me to reduce 5 mg every week even at 10 but I didn’t. After listening to people on here I went very slow from 10 to 0. When I saw him again, he wanted to know why I was still on pred. I told him I was afraid to get off any quicker. He said ok, do what you want. All in all I got from 40 to 0 in 7 months. I had no side effects and Actemra seemed to help me almost immediately after first infusion. Not everyone reacts so quickly and as well as I did. I stayed on Actemra total of 2 1/2 years. I’m off of everything now. I feel well with no GCA symptoms but I’m wary. I know it can still rear it’s ugly head again.
Congratulations.It sounds like you have done very well with the two. Appreciate your input period I have read through all of the messages today and i've come to the conclusion that i'm just going to do this slower than he is advocating given That at nearly 7 years since diagnosis. Don't want to overshoot, and then have to raise it back up. There's just not enough Actemra/ PMR/ infusion data for the patient So I using my best judgment and opinions of experiences here. I hope things continue to go smoothly for you
I think there is a massive difference in how quickly you can taper depending on whether you have only just been diagnosed or been on pred beforehand for years. For the newly diagnosed it can be a walk in the park - for us, not so much. Especially getting adrenal function back up and running.
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