Actamera: Hi everyone, Kentishgirl here, havn't... - PMRGCAuk

PMRGCAuk

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Actamera

Kentishgirl
Kentishgirl

Hi everyone, Kentishgirl here, havn't been on for a while, things have been going good, until last Wednesday!! My Rhumatologist tells me that Prednisone is not working for me😲two months ago, I had no sign of the two little buggers! No inflamation! gone! so he started me weaning down, then last Wednesday BOOM! I am at a level twice what is normal!!!

Now, he is recomend ing Acetamara😟 as you know in the States medcine are outrageously expensive, this will cost about $19.000 £14.000 plus! there is a chance it will be ccoerec cored by the manufacturer?, what scares me most is the drug itself! 1 shot a week! I have heard it very dangerous? with around 2000 deaths, that could be caused by it?

Have any of you troopers out there, been put on this ? anyone with experience with it, your input would be very welcomed,

Very scared in Washington State USA

Love to all

Kentishgirl

7 Replies
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PMRpro
PMRproAmbassador

What dose of pred are you on? What were you on? How quickly did he wean you?

I wouldn't be surprised if he doesn't understand how PMR works and has simply reduced your dose too far too fast. If you don't take enough pred to cover the activity of the underlying autoimmune disorder the symptoms will return. Taking a higher dose for a short time until the markers have fallen to normal does not mean the PMR has gone away - it means it is being managed.

If you want to know about experiences with Actemra type it (spelling it correctly) in the search box at the top right of the page.

You should get this

healthunlocked.com/search/p...

which lists 154 links where Actemra is mentioned.

Daisychain12
Daisychain12 in reply to PMRpro

What is this Actemra please? A PMR drug? And 2000 deaths?? Wtf??? How can they put this forward as a serious suggestion for us if people are dying on it! Xxx

PMRpro
PMRproAmbassador in reply to Daisychain12

It is a biologic drug that reduces the amount of pred in GCA required dramatically. In the USA some doctors have been wooed to use it for PMR - egos being polished probably "Look, I'm a brilliant doc, I got rid of your symptoms and that dreadful pred..."

I don't know where the 2,000 figure came from - last year the figure was 1,000-ish that had been reported as associated with Actemra. Some of them may have been directly due to its use but it is very unlikely all of them were. It has already been used for about 10 years for various forms of rheumatoid arthritis and there is a class action ongoing in the RA context. Not because it is any worse than any other biologic but because the data sheet doesn't mention the adverse effects related to cardiovascular events. Which some people took to mean it didn't have any so was safer. No, it is about the same as anything else. Many drugs can have life-threatening adverse effects in some patients. Even ibuprofen and paracetamol. And pred.

It isn't a PMR drug, no. It has only been through a Phase 3 clinical trial for GCA but since PMR is related to GCA it does work for PMR too. I don't see it being approved for use in PMR in general, maybe for patients who have serious problems due to pred, and there are some, or for people who relapse frequently despite careful use of pred or have PMR or many years, but it is too expensive for PMR at £12K/year for the cost of the drug alone - hospital administration costs more. But for GCA - maybe there is a role in certain cases. Which is what the UK decided on review.

Kentishgirl
Kentishgirl in reply to PMRpro

Hi PMRpro, thank you for your reply, it is the GCA that he is concerned with! specially the Arteritis, he says that it is very resistant to pred? I had a flare about 4 months ago, he jumped me up to 40 mgs, and continued blood tests, as the markers reduced, he started my wean, at the wednesday meeting I was at 10 mgs, and my marker was 17.8%.

This Doctor has a very high rating in his field, and has been a Rhumy for 40 years, he tells me, that if I continue on preds, it will result in more and more preds to keep the Arteritis at bay?

The scary thing for me, is is this my last chance ? if this fails what then? do I die? is there no other choice ?

Kentishgirl

PMRpro
PMRproAmbassador in reply to Kentishgirl

Don't be silly - you aren't going to die! Not yet anyway - it is inevitable in the long run!

I still think he is reducing you too fast, some people have to go very very slowly and it is quite usual to take 5 years or more to get off pred even for GCA. He is right that if you get into a yo-yo pattern with your pred dose it does get more difficult to manage the inflammation - but I'd say he is creating the problem by pushing too hard. My opinion.

But if you have the chance of Actemra for GCA - AND he can arrange funding without it breaking your bank it does make sense to try it. But whatever he tells you - it does not guarantee you will get off pred altogether, you may have to continue to take some pred as well as the Actemra. Nor does it mean you can't have a flare just because you are on it. I've come across doctors telling that to patients who were flaring. They obviously hadn't read the clinical trial reports - which make those facts quite clear. And because of that - I wouldn't commit to paying for it myself at IRO $20K per year. Even Actemra isn't worth getting into that sort of debt! But then - I never will have to.

Constance13
Constance13 in reply to PMRpro

Sometimes, like today - “for restful death I cry”.

However, tomorrow is another day and I might miss something interesting😂😂

PMR2011
PMR2011 in reply to PMRpro

Hi Kentishgirl, it does sound like you may have tapered too quickly. There is much info on this site on slow reasonable tapering. I did want to let you I have been on Actemra since January. It has worked very well for me. Weekly self injections ( one gets used to that part pretty quickly). No side effects, Prednisone currently at 2.5mg (shh, I just put my 5mg bottle away, hope I haven’t jinxed it!). I feel really good. Much more energy, no symptoms. I was diagnosed PMR in 2011 and GCA early 2017. In the States if you have private insurance the pharm company underwrites the rest with just a 5$ monthly copay. If you’re on Medicare it’s trickier. Hope you get it sorted out soon!

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