I have had four infusions of Actemra. I am down to 4 mg of prednisone with no real pain. I really would like to stop the Actmera due to the side affects. At what point is it okay to stop it?
When do you stop Actemra : I have had four... - PMRGCAuk
When do you stop Actemra
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DorsetLadyPMRGCAuk volunteer
I think that’s something for your doctor to advise….
In UK [and some other parts of the world] Actemra is only authorised for a limited time, usually a year -so the question isn’t often asked….
PMRproAmbassador
You do have to bear in mind that the Actemra may be the reason you are down to 4mg - and stopping it may well mean the 4mg pred is no longer enough. But it os something you must discuss with the doctor.
What side effects are you experiencing? I'm a bit tired but really can't complain about anything else.
I have pain in my upper stomach that I never had before. I have reflux but it does not feel like that. I have an appointment with my gastroenterologist later today. My triglycerides are high, they never had been before. I know it is a side affect. The stomach thing has me worried the most. No fever or anything so not sure what is going on.
Yes, lipids going up is a common effect. Some people get gastric problems too. Hope it settles. I suspect the higher dose all at once with the infusions probably has a role to play. It was the injections that were trialled and approved for GCA and that is a much smaller amount at once but US insurance is sticky about reimbursing the injections.
With our US insurance I don’t understand, why wouldn’t they want me to do it myself and cover the cost? They would rather pay someone once a month to do it.., I don’t get it. I also heard they will only cover it for a year. Our Heath care system is not the best!
I really don’t understand only paying for the infusions also. The cost of the monthly infusions is more than the price for injections, because now you have to use a medical facility and a nurse. Mine will pay for years, not just 1 year.
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Not sure the year applies in the US - everyone I know has had it longer than that. It is only a year in the UK and Australia.
As for insisting on in hospital and infusions - very illogical!
I checked the shots for insurance...my co-pay would be 4k a shot so....but I was told they could not get the shots anyway. I wanted them to know if the plan was to start with infusions and move to shots there is no way I could cover it. I have not started yet....but I want to take dosing slow if possible.
wow, that’s pretty high. With my insurance the injections were going to be $1600 every 4 weeks. That’s a far cry from $4000 an injection but was still too high for me which was why I chose infusions. I’m not sure why they would switch you from infusions to injections. I’ve been on Actemra for over a year
My personal opinion is the injections are better because you are giving a lower dose each time. The once a moth gif me is 500mg.
if you are not on Medicare the TCZ company has a copay scheme to make up the difference. I’ve been on shots for 3 years and pay only $5 month out of pocket.
I do self inject Actemra for GCA (large vessel type) - so the situation is a bit different. I reduced pred within less than 5 months with the help of Actemra. After 1 year I increased the injection intervals to 10 days and then 4 months later to 14 (as advised by my rheumatologist). So that is a way to taper Actemra (maybe that can also be done with the infusion). After the 4th Covid jab (and some other things occurring all at the same time) it got a kind of flare (or side reaction of the vaccination) and am now on weekly injection intervals again. I agree with DL and PMRpro that this is something you have to discuss with your doctor and then devlop a stategy.
thank you. They may tell me I have to wean off the Actmera too. My doctor prescribed it for possible GCA. I don’t have any head pain any longer. I see him next month so we will discuss.
I have GCA/LVV and I am on the self-administered injections, well really more like an epipen. I inject 3 weekly, started at weekly, then 2 weekly and now 3 weekly, this might be an option that your doctor could consider.
thank you for your note. I could get the prns but they would cost 1,700 a month through my insurance. The infusion I get once amount costs me 20.00. This is the only reason I do the infusions.
Someone is making a lot of money. My provincial government pays $1600 Canadian for a year of weekly injections. The murky world of Big Pharma plus insurance companies!
I totally agree with you!!!
I’m in Canada also and the Alberta Blue Cross covers the weekly self injections of Actemra. I pay $8.00 only.
wow that is great! I wish we could get our act together!
That’s good, but I wonder how I don’t have to pay anything. Consider ourselves lucky I guess!
Genentech maker of Acterma has a patient foundation that will cover what your insurance won’t it’s not hard to qualify I’m in the US and on my 9th infusion. I just paid my $226 deductible and they waiting was covered for the year. I have a question, are any members vegetarian or vegan? I am reading a book called “What’s Missing From Medicine” and it’s strongly recommended. Thoughts? GCA since 7/21 diagnosed 3/22 very lucky to have my sight!!
I heard the Year thing too. Do I guess if your not better after a year… though luck
If you want an answer to that - post it as a new thread or almost no-one will see it here. A study some years ago found that a strict vegan diet reduced joint pain in half of patients with rheumatoid arthritis but even the slightest reintroduction of animal protein reversed the effect and it only worked for half but they couldn't work out why, At the time, being vegan was still very hard work so once the diet wasn't being supplied to their door, very few continued with it as they couldn't cope, Much easier now.
The year limitation only applies in general to members in the UK and Australia unless members in the USA have a very restricted insurance cover and I don't know of any in the US whose insurance stopped it after a year.
Thank you
I have been a vegetarian for 30+ years, but do understand that going vegan is a lot more tough
It's a walk in the park these days compared with then - whether the modern vegan eats healthily is another matter!!! Both my daughter and her daughter are vegan. I shouldn't eat too much wheat so many of the vegan options aren't a good idea for me and I really can't summon up much enthusiasm for soya products.
Sorry to hear that.
I have had PMR for almost seven years. With the help from Actemra I too am down to 4mg of prednisone. I started on Actemra IV infusions once a month for a year and then switched to Act pen injections. With my insurance it cost about $20 an injection. I felt great and my Sed and CRP were finally under control. I did this for another 18 months. At my rheumatologist appointment six months ago he said it’s time to stop the Actemra cold turkey. I was nervous and tried to ask for a taper plan but he insisted I just stop. He has me do tests for Sed and CRP every two months. I an happy to say I have been fine. CRP is slightly up but still in the normal range. I am in the midst of some very stressful times and still doing well. I asked if I should try to taper my prednisone but he suggested I stay at four during the cold months and maybe try in the spring. He is fine with me staying on low dose Prednisone for ever. Hope this helps. Good luck.
thank you and this is good news. I hope to get off the Actemra at some point. I am going to reduce my prednisone by a half mg next month.
one option might be to have them decrease the monthly dose of Actemra or have the infusion at a longer interval such as every other month. My rheumatologist thinks I may be a “lifer” as it’s been 12 years. Once I am on Medicare I will have to switch from injections to infusions for it to covered. My rheumy has already said it will probably be the absolute minimum dose just as a maintenance and we can stretch out the interval if needed.
I live in the U.S and take weekly injections of Actemra for GCA. I have been doing this for about 18 months. I am on 2 mg of prednisone, and plan to continue on that low dose for awhile yet. My rheumy, who I think is very good, has said I'll continue for a total of 3 years on Actemra, so another 18 months or so for me. I believe this tracks with the length of the studies of patients on Actemra for GCA. Not sure of the plan yet when I get to 3 years, but he's alluded to some type of taper off Actemra, every other week, once a month, etc. Fortunately I receive the Actemra at no cost from the Genentech Foundation, gene.com/patients/patient-f.... I'm a 67 year old male, mostly retired working PT, with medicare as primary insurance. Actemra is very expensive and not much is covered on most medicare prescription drug plans. The Genentech Foundation uses only annual income, not total assests, for qualification. So, if you're retired, you probably would qualify.
thank you very much for this information. I am going to look into it for sure. I would much rather do weekly injections than one big dose a month.
My story is similar to Preacherball. Live in USA on medicare and medicare supplement. I've been on Actemra around 3 yrs. Genentech covers cost completely. My rheumatologist arranged for Actemra for me. We are not low income. I do weekly injection. Quickly went off prednisone recently. Hope you get help.
thank you. I am looking into this.
My Rheumatologist goal seems to be off prednisone first then taper off Acterma the last 6 to 8 months. I would love to be free of steroids.
new too
Very interesting. I’m on Actemra and 4mg of pred. Reducing one quarter mg a week. My rheumatologist is very keen on getting rid of the prednisone but I never want to go back to those headaches again…so I am very cautious.
3 times in the last 18 months I went to 0 pred. The first was after 6 month taper while on Actemra. There was a supply shortage of Actemra (one year ago) so I was unable to get it for awhile. I felt good being off both prednisone and Actemra. Overly optimistic. Had bad flare last March. Back on prednisone and Actemra. Did faster taper of prednisone to 0, flared in July, while still on Actemra. Tried third taper to 0, with Actemra, flared again, though caught it early and not as bad. So, low dose of prednisone, 2mg, with Actemra, and I feel good. I have atypical symptoms for GCA, more sinus and throat, which I write about in my profile. Strange disease, as you know.
I am sorry you had to go back after being off of both. My hope is that the “possible “ GCA will be over and if I have to stay at 3Mg if prednisone, I will be happy with it. I hope I can get off of them but not optimistic after reading many posts. One can only hope.. be well!
Well, I was at the time still a bit naive about the nature of the illness and thought after 6 months I'd surely be done with it. It has taken me awhile to adjust my thinking, but I still hope at some point to be done with it, just not sure when. In the meantime, I'm ok at 2mg and Actemra, as I have not had any reoccurence since last August.
‘…but I still hope at some point to be done with it, just not sure when. ‘
You will be clear of GCA, but when IT is ready to go into remission - which despite the introduction of Actemra [which admittedly does help you reduce the Pred more quickly] doesn’t necessarily mean the disease has got the message. Something some doctors don’t seem to get…and unfortunately place unrealistic expectations on their patients…
GCA and PMR are described as self-limiting diseases and can only be managed by the appropriate level of medication required on any one day until they go into remission.
It just seems that this business cannot be hurried, and we are all so keen to be “normal” again! Good luck!
Only half of patients are able to get off pred altogether even with Actemra - there are at least 3 different mechanisms that create the inflammation in GCA but Actemra only works to combat one of them. If the others are involved in your GCA, you will continue to require some pred to manage them. For many patients it is IRO 8-10mg so getting under 5mg is better than average.
Can I ask you how you knew you were flaring on just Actemra. Were your inflammation numbers still normal since Actemra seems to automatically bring down those levels. Or did you have symptoms of a flare by headaches, jaw pain etc.? I ask because I’ve been having some headaches and my doctor doesn’t think it’s a flare because all of my blood work is normal
Symptoms. My blood work remained basically in the normal range. My symptoms are rather atypical, sore throat, sinus, scalp tenderness. At first I thought it could be covid, but negative test. Then maybe just a viral infection. But when it doesn't get better as you would expect in a common cold, then I know something else is going on. I've learned by experience. Pred. clears symptoms in a couple days. Low dose of pred., 2mg, plus Actemra, seems to keep it in check for me.
"my doctor doesn’t think it’s a flare because all of my blood work is normal"
Why on earth do they not inform themselves about this before giving patients wrong info? It is clear from the studies that you can flare when n Actemra and the usual blood markers are not meaningful.
I don’t get it either. I told him about Actemra lowering inflammation levels and I asked him if I could relapse on just Actemra. He wasn’t really sure because he said they’ve only been using it for a few years for GCA. He’s is a vasculitis specialist. I wish I could find someone here who only specializes in GCA and not all the different vasculitis diseases.
How come I find out more here than from my doctor? I get so frustrated! My headaches seem to be lessening but I’m still concerned. If they persist this week I’m going to demand some action from him.
They DO know. There is plenty in the literature - if he doesn't understand the science, that is something else.
In the clinical trials half of patients were unable to get off pred entirely - i.e. if they reduced pred too far the GCA symptoms came back. That is because GCA has at least 3 underlying mechanisms and Actemra only works for one, it has no effect on the others at all, that is the nature of biologics. If the other mechanisms are active, they need pred to manage the inflammation they create.
DeepThought says his rheumy in Germany has been using blood levels of calprotectin (I think) as a monitoring tool. Not sure how it works - it is used in IBD versus IBS as a faecal test.
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