Info onActemra

[MarksPoint]

Hi everyone, I was diagnosed with GCA Dec 21 and put on 65mg Pred. Then March 22 I started Actemra weekly injections.

I have been very fortunate so far as I tapered and stopped Pred in Dec 22 but still taking Actemra shots - fortnightly now. My question is how long have others had to take Actemra after cessation of pain and no flares? Since being on Actemra my cholesterol has shot up to 7.2 ( I have Microvascular Angina which needs low cholesterol levels) and I am always terrified of getting infections, already had covid and a bad fungal skin infection that just won't go away, but apart from those 2 side effects I am fine (sort of).

My Rheumo is not particularly forthcoming with ongoing care advice so I hope the wonderful people on this site can help me. x

[Grammy80]

I'm very happy for you that you could get off prednisone so quickly. I have GCA and was only diagnosed because I lost sight in one eye! I have been on Actemra and Prednisone since September 2019. Right now, I'm taking 3mg per day and my weekly injection. It took me from 2019 until February of this year to get to 10 mg, down from 80mg.

I'll still continue to taper and see if I get to -0-, but my rheumatologist's plan is to keep me on the weekly injections of Actemra. At one point in my treatment, we stopped the Actemra when I got cellulitis and resumed without a hitch. Meds vs GCA? I have a friend in Maine who has maintained remission of GCA on a monthly injection and another in New Hampshire who has done so on just 1mg of pred for 23 years. What I'm saying is your symptoms should drive your treatment to maintain remission. I always look at it like we and our docs do our best to 'manage' GCA and keep it as quiet as possible.

Have you talked to your cardiologist regarding your cholesterol? He could best advise you there, I would think. Yes, it is a delicate balance....but so worth your sight. My best💞

[MarksPoint in reply to Grammy80]

Thanks for your reply Grammy, and so sorry to hear that your sight was badly affected. I realise that so far I have been relatively fortunate and for that I am extremely grateful. I guess time will tell whether I can successfully leave the Actemra behind or will have to stay on it, though it does tend to cost rather a lot of money. We shall see. Along with the meds I have completely changed what I eat and drink in an effort to keep my immune system happy and well nourished.

I wish you all the best going forward. xxx

[Grammy80 in reply to MarksPoint]

It really upsets me that people have to choose between meds and $$. Believe me the US medical system is in a 'world of hurt' and has many drawbacks and pitfalls. I'm old enough to remember when money didn't buy better health!

You sound great and mindful of your overall condition. I may not be the strongest gal on the planet but can keep very busy, including painting. I just try to encourage people with GCA to be patient...sounds like you are doing fine!!💞

[Rugger]

In England, Actemra is limited to 52 weeks' of injections for GCA. Therefore, I expect you won't get many replies from the UK, as we have to stop the Actemra and carry on with pred or a DMARD or nothing......!

I was 'lucky' to have 2 years of Actemra during the height of the pandemic and it enabled me to reach zero pred. My Rheumatologist started me on Methotrexate, but 6 months later the inflammation resurfaced. The MTX was stopped and pred prescribed again. If I had been able to continue with Actemra, who knows how long I would have needed it to remain pain free? We are all so individual.

All the best.

[MarksPoint in reply to Rugger]

You are so right about how different we all are regarding our treatments. Thanks for your reply...I hope you don't have to take much more of Prednisone...I call it a WMD - A weapon of Mass Destruction !!!

[DorsetLady PMRGCAuk volunteer in reply to MarksPoint]

Not in my case -it saved sight in left eye after I lost sight in right - so a Wonderful and Miraculous Drug.

All a matter of perspective…..

[Rugger in reply to MarksPoint]

I call it a life-saver and agree with DL!

[PMRpro Ambassador in reply to MarksPoint]

And it gave me my life after 5 years of undiagnosed PMR and still makes life better after 14 years

[Sharitone]

I have had Actemra for 18 months, though a recent pause to deal with infection. I haven't had real PMR pain for a long time - but plenty of others, which probably has more to do with the pred I had for 3 years. Nor have I had any GCA-type headaches and I don't think any recents images have shown any LVV either. Inflammation levels are good, too. However, My consultant has not said anything about stopping, or what comes next and I am not due to see him until October. So the long and the short of it is, I can't really answer your question and I guess it is all down to the individual rheumy!

[PMRpro Ambassador in reply to Sharitone]

" Inflammation levels are good, too"

You mean ESR and CRP? They are low because of the way Actemra works it stops IL-6 causing inflammation but doesn't stop the process of making IL-6 if the autoimmune part of PMR/GCA is still active.

[Sharitone in reply to PMRpro]

Yes, so I understood, but medics only seem to go by the ESR and CRP results. So I don't know what kind of a marker the rheumy is using for continuing Actemra.

Also I guess it means that blood tests won't be definitive on whether my 2-month-old pneumonia has finally cleared up?

[PMRpro Ambassador in reply to Sharitone]

With Actemra either you go by the patient's symptoms or one member of the forum from Germany says his rheumy uses calprotectin to monitor inflammation.

[Sharitone in reply to PMRpro]

Thank you, that's interesting.

[Preacherball]

I have been on Actemra for nearly two years, along with pred. I am down to 3 mg. and tapering. So far so good this time. But I have had issues with infections in the past, so we'll see. The plan via my rheumy is to continue on Actemra weekly injections for 6 more months, and, assuming I'm doing ok, then going to every other week. I'm not sure if I'll then reduce further, like once/month, but the goal is to be completed at the 3 year mark. We'll see. Fortunately, I am receing Actemra at no cost through the Genentech foundation.

[MarksPoint in reply to Preacherball]

Can I ask which country you live in...regarding Genetech.

[Rugger in reply to MarksPoint]

Preacherball's profile shows he is in the USA.

[Preacherball in reply to Rugger]

Yes, that's correct, U.S.

[PMRpro Ambassador in reply to MarksPoint]

Since you are in Australia, LemonZest11 has been through the process to obtain Actemra.

[MarksPoint in reply to PMRpro]

Thanks for info on Lemon Zest, I have just contacted Genetech and IU await their response. Roche Australia were not interested in helping. Fingers crossed.

[PMRpro Ambassador in reply to MarksPoint]

Hers was a complicated story - maybe read her past posts on her profile?

[nallufl24]

I have been on Actemra for 17 months now. I stopped having any kind of pain or discomfort almost immediately after the first infusion. I was able to get off prednisone in 7 months with no problem although I had a lot of withdrawal symptoms. I’ve not had any type of infection not even a cold. I can’t say I’ve been particularly careful although I stay away from my grandkids if they’re ill. My cholesterol is also very high which is upsetting. Anyway i will be getting off Actemra in October which will make almost 2 years. Hopefully I can stay well but only time will tell.