Does anyone who is on Actemra find it lessens fatigue?

[Kt1943]

The last time I posted I reported that my rheumatologist had taken me off Actemra as I was recovering from being very seriously ill with severe sepsis. I had been on Actemra infusions for over a year and am on 5 mg prednisone which I have also been on for a long time. I find that I am very fatigued …. Wake up exhausted. This seems to be worse than when I was on Actemra and I am wondering if it would help to go back on it. Just wondered if any of you on Actemra noticed you felt less fatigued once you started it.

[PMRpro Ambassador]

I know a couple of people said Actemra made them feel back to normal - but I don't think I could say that.

But only 3 months after sepsis you perhaps are expecting a faster recovery than I would. I know a young woman I knew had pneumonia and said it was a good 6 months before the fatigue after that wore off. Having sepsis at 80 is a major illness event.

[Kt1943 in reply to PMRpro]

Thanks for the reply. I was hoping to hear from you and know what your experience was. Yes, I think you may well be right about expecting too much after sepsis. It was certainly a major illness event and I am so grateful to at least be back to being able to do all the transfers into my wheelchair and all that!

[Grammy80]

I've been taking Pred and Actemra since 2019 (States) on the GCA train. Honestly, I don't know where to give the credit or blame for the way I feel at various times ~! I just think, GCA.

Right now, I'm back on 60mg of Pred per day and my Actemra epi-pen weekly. I'm adjusting again and sleeping well, a little less shaky each day and at the computer more.....feel the brain fog is just not as heavy. But...I may want to do a few things one day.... and then the next day, sit in a chair and three hours pass while I sleep. I cannot pinpoint a reason. When I feel good....I grab it. When I'm tired, I sit. I'm thankful I can do that.....However, when GCA hit, I was living alone in a different part of the country....and I behaved that way anyhow!💞

I've wondered about the impact of a monthly IV vs a weekly injection, maybe PMRpro will fill me in~!

[PMRpro Ambassador in reply to Grammy80]

I think that the monthly approach is less good for PMR/GCA. It possibly takes a bit longer to build up the effect at the start but once all the receptor seats are occupied the weekly dose fills up new unoccupied ones steadily so there are never enough available to allow an inflammatory effect. In the space of a month between infusions, enough new receptors develop to allow some effect and some symptoms reappear. A few people have said they feel less well in the week before the infusion is due. I am up to 2 weeks and 3 days between injections - and the last couple of days feel different.

They never trialled the infusions for GCA.

[Grammy80 in reply to PMRpro]

Thanks PMRpro !! I recall when I started the weekly injections, my rheumatologist told me it would take a few weeks to get 'into my system,' or it seems, take hold. Though entering year six, I still do it weekly, but it seems I have a stubborn prednisone-loving GCA. I have PMR friends in the States who take Actemra. After weekly, the next step seems to be every other week. "I am up to 2 weeks and 3 days between injections .' What is the purpose of that? or the goal? It sounds like a steroid taper; what is next? Thanks again💞

[PMRpro Ambassador in reply to Grammy80]

I can't get the pred lower - so I'm seeing how low I can get the Actemra. 2 weeks between injections is a common alternative so now I;m seeing if I can get to 3 - Lemonzest did the same. The longer you have between injections, the lower the dose and the less the side effects become.

[Grammy80 in reply to PMRpro]

I see....what side effects do you have? Do you think they harm you? I've been very fortunate and haven't had any...at least I always attribute it to pred or GCA. Maybe it is my 'mindset' about medications also since I've had to medicate daily since I was 15 years old.....I'll say it first....that was back in the dark ages, I know. If every two weeks give you good QOL.....why stretch? Can you get it in Scotland? 💞

[PMRpro Ambassador in reply to Grammy80]

I have none that I am aware of - but there are no doubt some and the potential is there. You should always aim for the lowest effective dose. I don't know if I will get it in Scotland but the lower the dose, the more likely it is.

[Jamiesons]

I'm currently taking Actemra every Friday. I find that it gives me a bit of a boost over the weekend, and if I'm lucky, this feeling can last until Tuesday. However, when I take methotrexate on Tuesday, the fatigue sets in, and my muscles start to feel heavy again, leaving me just waiting for Friday to come around. I jokingly asked if I could take Actemra twice a week instead of methotrexate, but I was quickly told no.

I'm also concerned because, in the UK, Actemra is typically only prescribed for 12 months.

[AliDeJ]

Hello. Personally I find that Actemra makes me very tired the day following my injection. It's an absolute "crash" sort of fatigue. It's hard to pinpoint the causes of fatigue, isn't it. I'm on 5mg of pred and I have good days and bad, probably due to a stuttering adrenal system. Perhaps that's why you are feeling tired too? Personally I don't think Actemra is a fix for fatigue...rather a cause of it. My rheumatologist has arranged a synathegen test "to see if its safe for you to come off steroids after 7 years". Maybe you should be having this?

[Grammy80 in reply to AliDeJ]

My rheumatologist has arranged a synathegen test "to see if its safe for you to come off steroids after 7 years". I don't quite understand. Why would the synathegen test be an indicator as to whether or not you could come off steroids? How are your symptoms? After five years on Pred and Actemra, in February of 2024 I got to 10mg per day; by June I was at zero without incident but by the first of August, GCA symptoms returned. I understand that isn't the case for all, and I hope not, for you. Would your rheumy see how you would respond in tapering to zero? Can you get an extention on the TCZ and remain on that? Maybe you wouldn't want to.

Recently I had an IV in the emergency room (States). Blood drawn prior; all levels were normal. The blood tests after showed elevated glucose, BP and HDL...they always spike for me on pred. My best...💞

[AliDeJ in reply to Grammy80]

Hello again. The rheumatologist reckons the GCA and PMR are in remission and says I can continue tapering to 0. I've just gone down to 4.5mg after being told to stay at 5mg until review. I taper by 0.5mg per month, if I feel well. I was almost off Pred Dec 22 but caught a virus with a bad cough and it all came back. Since then I've had a year of Actemra and reduced from 60 mg pred, but my PMR/GCA journey started 7 years ago. The rheumatologist said that after such a long time on steroids it may not be safe to come off them, hence the synathegen test (or whatever it's called). She said the test gives the adrenal system a poke and they can tell if it's still able to function. I don't have symptoms any more, except for head aches. I had a CT scan last week to look into those. The pred and especially the Actemra have caused high BP and high cholesterol so I really want to put this chapter behind me and get healthy again. Your journey sounds much more serious and complicated. I hope you soon emerge from the tunnel of fatigue.

[Grammy80 in reply to AliDeJ]

Sometimes, we all need a good poke!!! My taper was 0.5mg per month too....and it went smoothly. Tapering monthly helped me assess how I responded. Happy to hear they checked regarding your headaches too. Does something like Tylenol take care of the headaches? It works for me. You have a terrific attitude and I think that helps so much. You have all my best wishes!!💞

[AliDeJ in reply to Grammy80]

Thanks, Grammy80. If Tylenol comes up in discussion with my GP I'll remember your recommendation. Get well soon X

[AliDeJ in reply to Grammy80]

I've just discovered that Tylenol is Paracetamol...and no, I don't think it helps my headache. There, I've learned something!

[Grammy80 in reply to AliDeJ]

Me Too!! If Tylenol or Paracetemol helps....it is usually tension headache and not much of a concern. If persistent, it is worth checking.💞

[PMRpro Ambassador in reply to AliDeJ]

If you are on 5mg of pred then a synacthen test will tell you nothing - other than you are almost certainly NOT producing much, if any, cortisol because 5mg is loads to suppress it. You will be told you can't - but in fact if you continued to taper the pred dose VERY slowly, then the adrenal function could well return. But that isn't the key point about stopping pred or Actemra, it is whether the underlying cause of the inflammation has burned out.

[4Ruby]

I am on 3 mg Prednisone and Actemra reduced to every other week. Fatigue seems to be more related to tapering off Prednisone for me.

[luv2read]

Actemra has the opposite effect on me. I feel exhausted the next day. Weird how it affects people differently.