Stop Actemra for good?

[Greytree]

I am down to 4.5 mg of Prednisone. Started at 15 a couple of years ago. Have had about a year of monthly Actemra infusions (monthly infusions not weekly shots). I don’t feel different after them. Why shouldn’t I stop taking them? I still have some heaviness in arms/legs and some minor pains on occasion. Just wonder if they are still needed. I will ask doc but wanted thoughts from the good folks here first.

[Grammy80]

I'm sure someone with a more scientific background will get more technical; I'll share my story and what I know in layman's terms. ( Anyone out there, feel free to correct me.)

In August 2019, I woke blind in one eye because I had been told for about a year. I had the flu..my headaches and jaw pain were sinusitis!! I love that one~! My starting pred was 125mg daily, then I was switched to 80 mg of methylprednisolone in September. Because of previous medical issues (diverticulitis, stomach bleeds, ulcers), my rheumy held off on Actemra. I was started on weekly injections in October 2019.

I believe IL-6 is one of the things that contribute to our immune system working overtime, and Actemra attacks IL-6. Doing so enables us to get off steroids sooner and smoother. I got down to 15mg in the fall of 2022, but because of an infection, I had to stop my Actemra. Shortly, my symptoms returned and I had to return to 40mg of Pred. I am now down to 3 mg, and at my last visit with my rheumatologist, I asked him what the plan was if I got to zero. He said to remain on the weekly Actemra until he reevaluates down the road. I have a friend who does monthly injections to maintain.

I don't feel any different when I take the injection, but from personal experience know I wouldn't do as well without it. I think because chronic conditions are not strangers to me, I don't mind taking medication that gives me positive results. I appreciate the harm pred can do, and has, after three and a half years, but if I had to take one or two mgs of that for the rest of my days...I wouldn't mind. I want to maintain this quality of life though it is much different than when I was 79~~!! I'll take it.💞

Sorry, this was soooo long~!

[Greytree in reply to Grammy80]

Not too long, I appreciate every word! Thank you.

[LemonZest11]

Hi there, much like Grammy, when I tried to stretch out my actemra shots in order to stop eventually, I flared. I was down to 2mgs of prednisolone and figured now was the time to attempt to cease with the actemra, and if I had to take 2mgs pred for the rest of my life, I was prepared to do that. I upped the pred, restarted the Actemra and now, a year or so later, I am enjoying my 9th week without pred, after an extremely slow taper, and using the actemra shots three weekly. It is clear to me that Actemra plays a huge part in the control of my inflammation. Others on here know why, they have the medical knowledge as to why it works so well for many of us. My next challenge is to attempt to space the actemra out a little more to really test whether I am in remission. So, having said all of that, if I was you I would discuss this with my doctor because you might be unaware of the role that it is playing in your ability to feel well on your low dose of prednisolone. Hope this helps.

[MarksPoint in reply to LemonZest11]

Hi, can I ask you what is the dose of Actemra you now take every 3 weeks please? I managed to stop Pred 4 months ago and I am taking 162mg Actemra jab fortnightly and so far so good.

Unfortunately my rheumo is very slack with info, I had to suggest to her that I could take fortnightly instead of weekly jabs and she immediately agreed. Why oh why had she not suggested it in the first place ? Especially as it costs me a pretty penny now that I have been on it for over a year. Anyway, the money is secondary but efficacy and a lesser amount of harmful drugs in my system is my way to go. Since Actemra my cholesterol has nearly doubled and I have cardiac issues, plus the fear of little if any immunity scares the s**t out of me. Thanks.

[LemonZest11 in reply to MarksPoint]

Hi MarksPoint, I am on the same dose jab as you, 162mg. The reason I take it 3 weekly is because I get neutropenia when I have it weekly. Still happens, but by 3 weeks my neutrophils have increased and all is good. We tried fortnightly and then she put me on 3 weekly, and things have been fine. I’d give it a go if I was you, but best to check with your rheumy first. I’m about to attempt to stretch it further, bit nervous but I need to try. By the way, you might be surprised about your immunity. When I got covid I was absolutely fine. My Rheumatologist was amazed but with anything that has gone wrong, I seem to be able to get through. So might you 🤞.

[enan-illuc in reply to LemonZest11]

Hi Zest, I am also on Actemra,162mg every two weeks, and when my Doctor tested my blood said I have had Covid. I never knew I had Covid and I think it was due to my Actemra shots. I have no problems with Actemra (but I still do not like giving myself the shot).

[LemonZest11 in reply to enan-illuc]

That's incredible! I knew I had it but symptoms were mild. Might have been a milder strain and/or being vaccinated, but my immunity remained intact, which was good to know. I don't like giving the jabs either but it's a small price, AND, it's been working!

[MarksPoint in reply to LemonZest11]

Thanks for replying, LemonZest, my neutrophils are low and getting lower but no-one has said that I have Neutropenia yet. Unfortunately I had an extremely bad dose of Covid inb November.........shocking in fact, was hospitalised but only for a day. My hubby who is fine also got the bad dose too, it lasted full on for 4 weeks and was horrible. I guess that's why I am a bit nervous about my immunity. Anyway, I will speak to my doc about 3 weekly and see what she says. Thanks again. x

[LemonZest11 in reply to MarksPoint]

Poor you! This Covid thing and its severity seems to be the luck of the draw, and, as you said, your well husband also experienced a bad time. Hopefully that is behind you. The neutrophils return to normal by the time I have the 3 weekly jab, so I'm hopeful for you. Take care. X

[Greytree in reply to MarksPoint]

MarksPoint - The lack of immunity majorly frightens me, too!

[PMRpro Ambassador in reply to Greytree]

I've been on Actemra for a year - I don't even think about any lack of immunity and haven't had anything as far as I am aware. Including Covid.

[Greytree in reply to PMRpro]

I have had only 3 of the covid vaccines. Last one about a year ago. I’ve been worried about getting a bad reaction.

[PMRpro Ambassador in reply to Greytree]

I'm far more worried about a bad reaction to Covid!

[Greytree in reply to LemonZest11]

LemonZest11 Thanks so much. Quite helpful!

[LemonZest11 in reply to Greytree]

I’m glad. We’re all in this together!!

[MarksPoint in reply to LemonZest11]

You will never know how grateful I am to have you all. Thankyou !!!

[Rugger]

I was on weekly Tocilizumab injections for 2 years and although "I didn't feel any different after them" (on the day of the injection), I felt very much better than I had done after 4 years of PMR and 1.5 years of GCA-LVV. TCZ enabled me to taper the prednisolone to zero over the time I was on it. My UK NHS 'ration' of TCZ ran out and my Rheumatologist started me on Methotrexate. However, after 9 months of being on MTX and 6 months off pred, I developed PMR-like pains and I am now back on 5mg pred and off MTX.

In summary, I am sure that Tocilizumab targetted the cause of my GCA-LVV (IL-6 as Grammy80 says). I would go back on it tomorrow if the NHS allowed. The only way you will know if TCZ is needed is to stop it and see! Let us know what your doctor says.

[Greytree in reply to Rugger]

Thanks, Rugger. I think I have felt the same all the way through this no matter what level of prednisone or Actemra I am on. It’s not like I feel awful or that I feel great. I will let folks know about the doctor’s response, but so far the doctor has had little involvement. I am somewhat afraid if I ask him the question (when I ask him), he will just order it stopped with no rhyme or reason.

[Rugger in reply to Greytree]

In that case, don't even question stopping the Actemra! Get to zero pred as I did and as PMRpro suggests, then discuss what next and wait and see. Be thankful that you can stay on it for as long as it's needed - I presume. All the best.

[Greytree in reply to Rugger]

I think you are right, Rugger! Mums the word when it comes to my doc. That is certainly his approach to me. (-:

[PMRpro Ambassador]

If you still have PMR then you will need either Actemra or some pred to manage any inflammation - and at 4.5mg you can't know. Even Actemra doesn't cure anything, it manages the inflammation due to IL-6. If the PMR is still active and producing IL-6 then the symptoms would return. I would say get to zero pred first if you can.

[Greytree in reply to PMRpro]

Ok, thanks. I assume (I wish it were not simply an assumption) I still have PMR. Again, I feel pains here and there at times, but they are not that bad. I move slowly. When I feel the worse is if I have done a lot of stressful things. After, I just want to get into bed - and do so.

[LemonZest11]

There you go, PMRpro has explained it simply and accurately. You just don’t know what Actemra is doing for you at this stage, but if you stop it, you just might find out!!

[DeepThought2]

I fully agree with PMRpro and others - I would also try to taper off pred and then - if everything is ok - try to increase the period between infusions - that’s the way my rheumy is handling my GCA.

[Greytree in reply to DeepThought2]

Sounds reasonable. Thanks, DeepThought2!

[LemonZest11 in reply to DeepThought2]

And mine too.