Salumibab

[venezia1]

At a recent scheduled appointment I had a new rheumatologist. He seemed excellent and listened to my woes about my recently diagnosed fibromyalgia, which is impacting very badly on my life. He then was looking at the plan to put me on Actemra, and said that this other new drug called Salumibab was actually having better results than Actemra, and he would be putting me on it shortly. Has anyone any experience with thus drug?

[PMRpro Ambassador]

Is the name you have quoted correct? I know there is a drug being looked at for GCA but this isn't bringing anything up. Ustekinumab is part of a study in Dublin I believe.

It is certainly not yet approved for GCA - not even trialed as far as I know.

[venezia1 in reply to PMRpro]

The brand name is Kevzara - injections at 150mg and 200mg. I'm sorry! I just checked the spelling and I got it wrong - its Sarilumab. "It is used to treat moderate to severe rheumatoid arthritis (this from the print-out the doctor gave me) - it attaches to a protein called interleukin-6 receptor and blocks its action."

[PMRpro Ambassador in reply to venezia1]

Thanks - so theoretically it should work like Actemra as it works in the same protein. There are 3 or 4 different ones coming on line - and maybe that will bring the price of Actemra down too.

[piglette in reply to venezia1]

I must admit I thought Sarilumab was for rheumatoid arthritis as a substitute for Methotrexate. I could be wrong of course.

[venezia1 in reply to piglette]

Well yes - I thought I had explained that?

[piglette in reply to venezia1]

I thought you were saying it was a substitute for Actemra not a substitute for a DMARD?

[venezia1 in reply to piglette]

It is in the same family as Actemra. A search on the internet seems to confirm that it is thought more successful than Actemra, so fingers crossed!

[PMRpro Ambassador in reply to venezia1]

For RA - not been trialed in GCA...

[SheffieldJane]

I couldn’t find that drug on the Internet venezia1. What has led your doctor to a diagnosis of Fibromyalgia, on top of GCA and possibly PMR. Can I ask what the distinguishing symptoms are?

Why was Actemra being considered for you?

What current dose of Prednisalone are you on?

All the above questions make it hard to comment on your post. I am really sorry that you are struggling.

[venezia1 in reply to SheffieldJane]

I have just apologised to PMRpro - I got the spelling wrong. It is Sarilumab!

To answer your questions in order...my Gp diagnosed fibromyalgia a few weeks ago - my rheumy thought it might be PMR. I've had RA for about 10 years and GCA for about six, and tried various things including Humira and methotrexate with little or no improvement. The distinguishing symptoms recently have been extreme nerve pain, all over my skin, an increase in the pain in my joints and great difficulty in sleeping. Awful headache, too, all the time. Fatigue which has floored me for days at a time. Both my GP and rheumy did the pressure points test and came up with the same result - 14 out of 18, so were pretty sure its fibro.

My rheumy wanted to put me on Actemra but has been waiting to fulfill the requirements of a certain number of swollen joints - the new doctor didn't bother with the fact that I might be under by one or two and went straight ahead with ordering the necessary tests in order to prescribe Sarilumab.

I'm on 7mg pred having reduced over a long time from 80mg when I was diagnosed with GCA. I hit the buffers every time I try to get to 6.5 even by the slow method.

I just feel that this latest thing - call it fibro - is almost the worst I've experienced as it is impacting on my life so severely. I've had to cancel days out, evening events and all kinds of plans for my day-to-day living as I'm so weak and in pain. My daughter is getting married on Jura, in the Hebrides, where she lives, in June, and I am so worried that I waon't be able to make the journey from Cumbria, never mind enjoy the wedding. I think perhaps I'm depressed as well.

Hope this answers your questions and I look forward to your comments.

[SheffieldJane]

I am sorry venezia1, I hope you didn’t find my questions intrusive. I was just trying to understand what you were going through. There is always the chance that someone reading your story will have the answer to your central question about Sarilumab and whether anyone had experience of it.. I was also curious about the Fibromyalgia diagnosis, as I was given it in the early days of PMR ( March 2016). I wasn’t given anything like the thorough examination you had and I have always felt that it was just added in to mop up symptoms that weren’t typically PMR. I quickly moved to a Rheumatologist who is a leader in the field of GCA/ PMR and it has never been mentioned again. You have clearly been through an awful time healthwise no wonder you are depressed. I can so empathise about the wedding looming and your role as mother of the bride with the attendant expectations you will put on yourself. A number of us have had similar situations, everyone turns up after a lot of heartache and everything goes well in the end. You have the additional problem of a really challenging journey that you will have to do well in advance, in order to have time to recover. I took 10 mgs of Pred to get me through my wedding and found a quiet area to mind my grandsons sleeping in their prams while the party carried on. It is much worse anticipating these things when you are depressed. It is hard to realise that everybody loves you and just wants you there in whatever capacity. Coincidentally my father in law was born on Jura and his father worked in the distillery there. “McKenzie” was their name.

Stay with us and see if it helps. It has helped me loads.

Your doctor sounds as if he really cares and wants to get you well. Let’s hope that you start to feel the benefits soon!

[Hessie5]

Hi Venezia - hope you don't mind me asking how you are coping with Sarilumab? My Rheumatologist has just recommended this for me. I am a bit hesitant as can't find much positive feedback online! Appreciate any feedback you can add. Hessie

[PMRpro Ambassador in reply to Hessie5]

It has only been approved for RA since 2017 and isn't yet approved for GCA - so I doubt you will find much online since patients won't be started on it as first line, just when they have tried other biologicals and failed.

[Hessie5 in reply to PMRpro]

Thank you!

[venezia1 in reply to Hessie5]

Hi - I can honestly say it is wonderful for me. It appears to have no side effects other than a slightly increased likelihood of infections - I've had two colds since the summer and had none for several years beforehand. And of course you have to stop the injections if you have an infection, which is a nuisance. I've now dropped almost completely to 5.5 - the lowest I've ever been since starting pred. So I hope it works as well for you!

[Hessie5 in reply to venezia1]

Really grateful for your reply. So glad to hear it’s helping you too. 😌 All the best, Hessie