Preparation for Actemra infusion?

[Greytree]

I will have a two hour infusion with Actemra (Tocilizumab)Monday morning. It is the first time I’ve done this and I’m supposed to have one each month. Are there any suggestions on how I might prepare myself so I won’t be made sick by the Infusion? What questions do I need to ask? I’m on 13mg Pred. Started on 15mg in Oct. Have PMR and doc suspects GCA. Am in US. Thanks.

[winfong]

Why are you assuming you would be made sick? I had these for several months, and it was mostly just boring. The infusion itself is pretty straightforward.

[Greytree in reply to winfong]

I saw online that people can react to it the way I react to Vaccines, like a 24 hour flu. When I asked the nurse if it would make me sick, she said the doctor had a prescription for nausea and also itching that I would be given.

[Greytree in reply to winfong]

Were the infusions helpful? Did they allow you to get off prednisone or whatever?

[SheffieldJane]

Take a book or iPad maybe. My experience of Actemra injections would not lead me to expect feeling sick. Good luck!

[Greytree in reply to SheffieldJane]

Thanks!

[Greytree in reply to SheffieldJane]

Were the injections helpful?

[PMRpro Ambassador]

Yes - as winfong says, why are you assuming you will be sick? It isn't chemotherapy. The injections don't make me sick - just a bit tired 24 hours later.

[Greytree in reply to PMRpro]

The nurse told me it is a form of chemotherapy, the same used for cancer but just a lot smaller doses. I’m glad to hear from folks that they have not had a problem with it.

[PMRpro Ambassador in reply to Greytree]

It is a biological drug and it is sometimes used in chemotherapy for cancer- but the usual understanding of chemotherapy is the use of cytotoxic drugs that interfere with rapidly dividing cells which is what causes the illness/side effects that commonly go with chemo. Methotrexate is cytotoxic, that is why your hair falls out although that effect can be mitigated by giving folic acid.

TCZ interferes with the production of IL-6, a cytokine that is often produced in large quantities in chemotherapy as it is in severe Covid, and is what makes some people dangerously ill. Using TCZ there stops that cytokine storm as it is called - so it is used in chemotherapy but isn't a cell destroying drug in that sense. It is thought it may have a role in stopping cancer cells growing - but that isn't proven.

mayoclinic.org/tests-proced...

Someone on another forum was making a song and dance the other day about pred being chemotherapy - on the grounds that using chemical products to treat something was chemotherapy. In the widest definition yes it is - but so is using paracetamol for a headache!

[SheffieldJane]

Actemra is the only drug apart from Prednisalone that has been proven to be effective with our conditions. I took it for about a year. I was able to reduce my GCA dose of 40 mgs of Pred to 10 mgs really quickly and this reduced my overall steroid burden. It is a drug that is more effective for some people than others. On the minus side I experienced more infections like UTIs, nasal infections, Blepharitis and a couple of times when I needed antibiotics ( this meant I had to stop the injections until significant infections cleared up.).It is a positive that you can just stop them without ill effects.After getting to 10 mgs of Pred I didn’t notice tapering being any easier than before. I stopped Actemra when I still had a number of doses left because I developed lower abdominal pain and the symptoms of IBS and UTIs that seemed to be related to Actemra. I think some of my difficulties were the ill effects of long term Pred use being compounded by another immunosuppressant drug. Although I have been Actemra free for 3 months, I am still troubled by the abdominal symptoms ( nothing significant showed during a colonoscopy) a persistent eye and nasal infection although they all seem milder.

I have no proof that Actemra was the culprit and I do not regret taking it. Some patients have had a completely smooth journey and have managed to get off Prednisalone entirely. I am currently on 6 mgs of Pred alone. I hope this helps.

[Greytree in reply to SheffieldJane]

Yes, I greatly appreciate hearing about your experience with it. Thank you.

[nallufl24]

I never feel anything after my Actemra infusions. I was able to get off prednisone and felt alive again

[Greytree in reply to nallufl24]

Wonderful! how long did it take? Thanks

[nallufl24]

I started Actemra in December 2021 while on 35 mg pred. I was on 5 mg by April and took my last pred 3 weeks ago

[Greytree in reply to nallufl24]

Impressive. Thanks so much for the info.

[nallufl24]

The rheumatologist told me that they last all month and i have to say that I feel they do. I don’t get any type of symptoms before my next injection. Of course I don’t know much about PMR as I have GCA

[Greytree]

I hope that works out well for you! I’ve been confused also about injections versus infusions. There is one you can give your self every month (or every 6 months?) and you just press it on your skin and it shoots in immediately. Because I don’t have drug insurance Medicare requires I go to the hospital every month for the 2-hour infusion. Do you do the injections yourself?

[PMRpro Ambassador]

They are used quite a lot in RA. The infusion dose is based on weight - so whether they are more than the injections depends on your weight. I would get less dose per month - injections for 30 days would be approx 650mg whereas the infusion for 75kg would be 600mg. The infusion is up to 800mg/month.

actemrahcp.com/ra/dosing-an...

[Greytree]

Thanks for all the details. I will report back here tomorrow after it’s done, as long as I’m still standing. (-: I am feeling better about it after what I’m reading here.

[Greytree]

I’m sorry it took so long. Jeez. My doc thinksI have GCA as well as PMR. Maybe that’s the difference. Plus I am in Nashville Tennessee where hospitals and healthcare companies abound and include the many-armed Vanderbilt Medical Center.

[Greytree]

Made it through first infusion with no problems whatsoever. Nurse did a blood work to start with since I hadn’t had such in awhile. And, then, in the same port she started a saline drip. Next the actemra was ordered from the attached Vandy pharmacy. That took about 20 minutes to get. It was added to the saline drip going in my arm. From there on it took an hour. Thanks for all the comments and advice from everyone! I read and mused. I was told I can drive myself in the future since there was no reaction on the first dose.

[Grammy80]

I've been on Actemra injections for about three years. I purchased a small insulated zippered piece, no bigger than a fat wallet, used for insulin pens or injectables. It has packs I put in the freezer to keep it cold; Amazon, of course.It is about 4 X 8 inches and fits into a carry on. Hope it helps some...

[Hadley1234]

Hi i am in England and they found PMR and GLA and LV 3 years ago, i want put on 50mg of Prednisolone and put on Tocilizumab injections which i had to inject in my stomach, but i had a rash where the injection went , so now i have an infusion every 4 weeks, i have changed to Hydrocortosone instead of Prednisolone as the Vasculitis dr said they were more gentle, i have weaned down to 20mg now , and the pain is better but have servere tiredness, which seems to be a problem to get better ....so i think you are on a low dose

[Greytree in reply to Hadley1234]

Thanks for the response and info, Hadley1234. I didn’t know the infusions might go on that long. Need to talk to my rheumatologist about that and the Pred dose.

[PMRpro Ambassador in reply to Hadley1234]

"Vasculitis dr said they were more gentle"

Whatever THAT is meant to mean! Some people find the side effects worse - and they are weaker so you need a higher dose. Corticosteroids are corticosteroids!

[Hadley1234 in reply to PMRpro]

ive no idea just saying what the consultant said to me......i dont think there is so much weight gain and moon face with the hydrocortisone.

[PMRpro Ambassador in reply to Hadley1234]

No real need to gain weight with pred if you are careful with carbs. But the risk of both is there.

[Hadley1234]

i have had no side effects with Tocilizumab infusions every 4 weeks for 2 years