Actemra fatigue

[Blackcatlover]

I’ve been giving myself my Actemra injection every Monday morning at 7:00 am. By 10:00 I feel like a freight train has hit me- not sick just really tired. I’m thinking maybe I should inject at night. Anyone else feel like this? Is it alright to inject at night?

[Grammy80]

When I was taking it...I did not have that reaction. I was a Tuesday gal and sometimes it was in the morning and sometimes late afternoon. There are times when I am overwhelmed with fatigue and will just lay down and sleep three hours after only being up for 5 hours after having a 8-9 hours sleep the night before???

I don't know? I'm kind of at a point where I'm 'rolling' with what happens. Just when I get something figured out....it changes. I hope you can just rest if you are tired. xo

[Blackcatlover in reply to Grammy80]

Thanks so much. I have no choice but to rest. The fatigue is overwhelming but just lasts for a day. Hope you are doing well.

[MrsNails]

Do you have a Rheumy Nurse Helpline? As they should be able to give you advice like that, it would certainly seem a sensible way forward.

Good Luck 🍀

[Blackcatlover in reply to MrsNails]

I see my rheumatologist on Nov 9. He is away and I hate to call his service and talk with someone else. Will probably just learn to rest. Thanks for your reply.

[alvertta]

I gave myself my second Actemra shot yesterday at noon. And feel nothing. I am waiting. From the first one I did notice fatigue as the days went along. Nothing on day 1. But later in the week more and more tired in the afternoon. Maybe try it at night and see if you can sleep thru the side effects.

[Blackcatlover in reply to alvertta]

Thanks for your reply. I gave myself my fifth shot today. I think I will try a late afternoon injection next week. Good luck with your journey. So far my numbers are much better.

[PMRpro Ambassador in reply to Blackcatlover]

The CRP and ESR are meaningless when you are on TCZ - it stops the production of the CRP and that is also what raises the ESR, It doesn't mean the autoimmune bit is inactive.

[Blackcatlover in reply to PMRpro]

That’s what’s so scary about being on this med. it must do some good. I could never get below 15mg of Prednisone before the Actemra. I know it’s a Prednisone sparing drug but do I just go by symptoms to know how I’m doing. I always ache because of terrible osteoarthritis. I’m 75 and have headaches from the Actemra and always worry about other things going on. Very confusing. Thanks for your clarification.

[alvertta in reply to PMRpro]

Good to know. Rheumatologist did not say that.

[PMRpro Ambassador in reply to alvertta]

He may not know - some haven't read all the documentation!

[Blackcatlover]

Don’t know why but I can’t open any of my replies.

[PMRpro Ambassador in reply to Blackcatlover]

What do you mean?

[Fran_Benson Partner in reply to Blackcatlover]

Are you able to open them now?

[Blackcatlover in reply to Fran_Benson]

I can open them now. Couldn’t open them for about four hours.

[SheffieldJane]

I also have tremendous fatigue. My injection is 11am every Friday morning. I was told to keep it to the same time and same day each week by my Rheumatology Nurse. However, I didn’t really feel much different skipping two doses due to being on antibiotics. My fatigue did not feel as if it was directly connected to the injection itself. I experienced this kind of fatigue with Pred alone ( PMR low dose) and I am beginning to think this maybe to do with my Adrenal function again, or simply the effects of GCA/LVV which I have only had for a few months. If you think it will help to take it at bedtime, I don’t imagine it will do any harm. Check with your prescribing doctor or the pharmacist though.

[Blackcatlover in reply to SheffieldJane]

Thanks. I’m on 4mg of Prednisone and had bouts of fatigue when tapering to this level. I had my adrenals checked and they were working. This fatigue happens once a week after my injection. Have only done six injections so maybe this will get better. Be well.

[PMRpro Ambassador in reply to Blackcatlover]

No - if you had a synacthen test it showed they were CAPABLE of working. Not quite the same thing.

[Swannrise]

Not sure if my answer will help! I just started "monthly" Actemra infusions.. Not sure what it does, but my rheumatologist wants me off prednisone, told me it will help to wean me...

.. Anyways the fatigue, you're talking about!? Omg.. This is the worse! I can't find a catalyst for the fatigue.

Lack of sleep? Too much sleep?

Weather changes?

Diet?

All I know, it comes out of nowhere.. Will last a day, then I'm fine.. Other times it will grab me for days.

It sucks like a giant straw.

Hoping actemra infusions will help.

Hoping you figure it out also!

Hide the straws! 🤬🤬🤬

[Blackcatlover in reply to Swannrise]

So sorry you are experiencing the same thing. It’s probably a combination of all of those things plus this terrible disease. I’m going to go on with what I need to get done six days a week and rest on injection day. Hide those straws!🥴

[Chrisellie]

Yes I also had a tired phase on the injection day. I injected around 12.00 midday and felt very tired about 3 hours later. You could slowly delay the injection until you were nearer bed time I suppose . Not sure if it should be taken during the day in case of side effects, perhaps check on that one.

Tocilizumab works by blocking production of a cytokine called interleukin-6.

[Blackcatlover in reply to Chrisellie]

Thanks. I guess the fatigue from the injection is par for the course. I think I will shoot for a later injection time. Good idea. Midday would still give me my morning. Thank you.

[misha453]

I had headaches the first 2 months I injected Actemra and then they went away. My Rheumatologist said to inject on the same day but didn't mention it had to be the same time so I have moved my injection both earlier and later from midday without any issues to suit my schedule.

[Blackcatlover in reply to misha453]

Thanks. That helps.

[jarn]

What am I Missing? Have been injecting every Friday morning, since March, and have not noticed anything like this. But I (touch wood) have no other medications/ailments, so that may play a part. With GCA/PMR have had the fatigue from that, not the drug. Hope you find the answer.

[Blackcatlover in reply to jarn]

I’ve only been injecting for six weeks. I think my body is going through an adjustment period. I’ll get there. Thanks for replying.

[GratefulBailey]

I’m at month 11 of Actemra and the horrible fatigue (for me) dissipated by month 3. I also have my injections in the evening. Tapering revved up that “brick wall” fatigue for a few days though.

Good luck....

[Blackcatlover in reply to GratefulBailey]

Thanks. Good to know the fatigue may disappear. This should be a disease for young people not old people. 🥴

[PMR2011]

Absolutely. I very quickly determined best time of day to inject is Friday eve. Would sleep through most of the fatigue and post injection headache. Though hydrating well before injecting helps the headache. And if the fatigue carried into the next day (Saturday) I wouldn’t have to work and could rest. PMR for 6 yrs then GCA for 3. Have been on Actemra 2 years and off Pred for 1. Currently on every other week injections. No longer have the fatigue.

Once I’d been on it several months, shifting injection time or day slightly has not presented any problems.

[Blackcatlover in reply to PMR2011]

Thanks so much for your reply. My goal is to move the injection to later in the day and every ten days. Seeing my rheumatologist in two weeks and will run this by him. You give me hope. Thank you.

[PMRpro Ambassador in reply to Blackcatlover]

In the clinical trials for GCA there was very little difference between weekly and 2-weekly tcz injections in terms of getting off pred - so I do wonder why they opt for weekly.

[Blackcatlover in reply to PMRpro]

I agree. When I see my rheumatologist I’m going to see if I can go ten days between injections. The half life of the Actemra is eleven days. I’m shooting for every two weeks eventually. Thanks for your reply.

[Blackcatlover]

I agree. The half life of Actemra is eleven days. I see my rheumatologist next week and will ask if I can inject every ten days. My goal is to get to just two injections a month. Thanks for your reply.