Another Actemra question

[Darcy2000]

I realize this is a question for my Dr but not seeing him for a month .Feeling heady and pressure in head and hopefully this side effect wanes .Has anyone who has been on Actemra has their dosage reduced to once every 2 weeks instead of once a week and if so

So did it help with side effects .Definitely don’t want to feel like this for a year ..only had 4 doses 48 to go🙁

[alvertta]

I am Not on it yet. But doctor told me I Will start in September every second week.

[SheffieldJane]

I have had my sixth injection and do feel a bit weird sometimes. You shouldn’t be cast adrift on a drug like this for a month. Don’t you have a Rheumatology Nurse? Mine is pretty clued up on these questions.

[Chrisellie]

Sorry injections were every week for 12 months .

[LemonZest11]

Hi Darcy, I had my 18th injection today and I am feeling great. I have the most horrible shoulder which is unrelated to PMR but apart from that, absolutely fine. I am on 5.5mgs pred at the moment. I haven’t had any side-effects that I can put down to Actemra. I’d call the doc, you shouldn’t have to wait if you are concerned.

[PMR2011]

4 doses is early days. It took about 8 doses (weekly) for me to feel better. Yes headache is a side effect. Stay well hydrated before your shot. Inject in evening before bed and you sleep through worst of it. Tylenol can help. Every other week does work for some. I’m currently every other but tapered to that from weekly after 2 years. Hope you sort it out!

[Darcy2000 in reply to PMR2011]

Thanks very

Much will hang in there

[PMR2011]

Yep weekly for 2 years. Then this year every other. Had PMR for 6 yrs then got GCA. (I’ve always been a little stubborn, apparently my body is too!). We’re the inflammatory arthritis symptoms in your hands? The confusing bit is Actemra can cause joint pain. When I was on weekly my thumbs were nearly useless. Much better now I’m on every two weeks. Hoping to go monthly in Nov or stop haven’t decided yet.

[PMR2011]

I had a trigger finger too. Was off Pred (or very low dose at that point) but thought I’d was residual from higher dose Pred. Still have it mildly. I do think Pred plays havoc with our connective tissue and we don’t really realize it until we have an injury!

[PMR2011]

Boosting would do it. There is no way to be ergonomically correct when boosting! I don’t think I could have cared for patients this past 10 years of PMR and GCA. Just glad was in management and more recently Safety. Still working full time!

[mngirl]

I have been on actemra two years. My experiences have been good. My crp and sed dropped within three months (6 shots biweekly) I have dropped to 5mg pred I can’t seem to get lower though. I have tried various ways I was on 4mg for 45days all the time I had a headache. I dropped to 31/2still headache then 3. Headache got much worse decided to go back to 5. Headache went away. Actemra got me to 5. But I think I will have to try aDSNS. I do think either pred or actemra affect muscles. Maybe both. I also think actemra gives an inaccurate crp and sed result. Even when my symptoms were bad my numbers were within the normal range. But on actemra they are at the very bottom of the accepted range. I am sure it has been good because I kept flaring before I started it

[PMRpro Ambassador in reply to mngirl]

The ESR and CRP levels do not apply when Actemra is being used because of the way it works by stopping the way that IL-6 exerts its inflammatory effect so the proteins that make those figures rise aren't produced in the liver - at present the only monitoring option is by the symptoms. It also only works 100% for about half of patients with GCA, there are 3 different mechanisms that produce the inflammation in GCA and Actemra only works to stop one of them. If you have one of the others going on, then you will need pred ongoing although at a much lower dose. These factors are perfectly clear from the study documentation - but a lot of doctors seem totally unaware of them. If you need 5mg - you may need 5mg for longer. But it may also be an adrenal problem: Actemra has no role in the return of adrenal function and that takes time.

[enan-illuc]

Hi Darcy,

I am on a two week schedule for my Actemra but I began this way. I have not had any side effects and I think it is very effective even though it is not weekly. I have been on Actemra for about three years. I hope this helps.