Did Everybody See This?: From the Daily Telegraph 2... - NRAS

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Did Everybody See This?

AgedCrone profile image
27 Replies

From the Daily Telegraph 23 September 2017

I wonder how long it will take to filter through to anyone who needs it?

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AgedCrone profile image
AgedCrone
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27 Replies
allanah profile image
allanah

Cool..more options are great !

keeta profile image
keeta

Spose we will have to jump through more hoops to get it 😊🤗

wishbone profile image
wishbone

Alas, yet another immune suppressor so no use to me. Think I need a minor miracle to happen in the pharmaceutical industry to find a RA drug that suits me.

It looks like good news for some of us though.

Jules13 profile image
Jules13

My mother saw this and gave it to me. Obviously I'm clueless as to what it actually means because I'm only 8 weeks in to my first ever drugs. Anyone have the will to explain how this works?

helixhelix profile image
helixhelix in reply toJules13

You've been given traditional disease modifying drugs (DMARDS). These tend to work in a non-specific way, which ends up calming your over active immune system and inflammation. And they are drugs that generally come in pill form, tho' some can be injected. And are pretty cheap.

There are an increasing number of newer drugs called biologicals which are made from living proteins taken from cells. A bit like vaccines really. And they target very,very specific bits of your immune system. We have ones now that target T cells, B cells and IL6. They have a much shorter shelf life, have to be kept cool, and are horrendously expensive - like about £10,000 a year.

This article is about the newest one on the block.

Jules13 profile image
Jules13 in reply tohelixhelix

Blimey. Which I'm sure is why the NHS in the U.K. try and give people the pill form of Dmards... because of the cost?

Are you in the U.K.?

Does the NHS give biologics to newly diagnosed people or is that usually when the patient stops reacting to the dmards?

helixhelix profile image
helixhelix in reply toJules13

For biologics, in the U.K. you have to have tried and failed on DMARDs including methotrexate. But that's not all, you have to have active disease that scores over 5.1 on the DAS scale (disease activity score) that takes into account your blood test results how many wonder & swollen joints you have and how you say you feel. Basically you have to be in pain and the system is evil and medieval.

Jules13 profile image
Jules13 in reply tohelixhelix

Hmmmm. Good to know.

AgedCrone profile image
AgedCrone in reply tohelixhelix

Biologics also depend on any other medical condition you may have. If you have had, or still have cancer, the choice , for me anyway, was restricted to only two!

Hobson's choice!

phil_54 profile image
phil_54 in reply toJules13

Hi Jules13

I have been on MTX for over 2 yrs now and my last review the consultant said she thinks i now meet the criteria for biologics i attended an appointment with specialist nurse who took me through a 90 min interview told me all about how biologics work the whole history and then completed a questionaire regarding my medical background at the end of it i had to give some blood samples 8 tubes in total and now have to wait up to 2 weeks for the results so it will be a fairly lenghty process as she mentioned it could be up to 16 weeks before i start them so in answer to your question i would say no and that it would be when the patient stops reacting to dmards which i think is a little unfortunate given that its not just a straight forward change over, the only other thing is there is no guarentee as they have to apply for funding for Benapali as other posters mention they are incredibly expensive

Sorry to go on a bit just giving you my personal experience regarding biologics same as you it was all new to me until recently.

Good luck

Slightly_ginger profile image
Slightly_ginger in reply toJules13

The NHS and NICE, Tend to only give biologicals after a specific treatment plan has failed to produce benefits, in layman's terms going through all the DMARDS One by one Inc. Oral and intravenous methotrexate. And also varies from trust to trust as to how quickly they react to this.

What's the name of this drug?

Gnarli profile image
Gnarli in reply to

Sarilumab apparently, but what the manufacturers decide to call it is anyone's guess

J

in reply toGnarli

it's called Kevzara in Canada. Here is a link to side effects, etc

rxlist.com/kevzara-side-eff...

Downtime profile image
Downtime in reply to

Pretty much the same as all the biologics. It's a question of risk versus reward as usual with all these drugs.

Eiram50 profile image
Eiram50

Interesting- let's see how this pans out....

dwsurquhart profile image
dwsurquhart

So my read on this Sarilumab is the same as Tocilizumab. Both are an IL6 receptor antagonist. By reading about both of these drugs, the side effects are extremely similar as well as what it targets.

Could it be that they have just rebranded Tocilizumab?

in reply todwsurquhart

here is a comparison between Tocilizumab & sarilumab

rheumatologynetwork.com/acr...

dwsurquhart profile image
dwsurquhart

I spoke with my rheumatologist about this. He is going to read up on it and get back to me. I will keep you informed of what he says.

AgedCrone profile image
AgedCrone

I guess as usual it will be down to which area Health Authority you come under ....like Biologics.....as has been said on this site you can get funding in one area but not another! Unfortunately no matter how hard a Rheumatologist presents a case, if the PC.T say no - you can't get funding -even if a drug has been approved by NICE for use in the NHS.

A very unsatisfactory system.

Sweetheart0377 profile image
Sweetheart0377

Thank you for posting this I missed it x

Hessie5 profile image
Hessie5

Can't believe I just found this. This is my next biologic! Thank for posting, cant find any good reviews though ☹️

AgedCrone profile image
AgedCrone in reply toHessie5

Let us know how you get on.....I haven't read anyone here has been on it.

Hessie5 profile image
Hessie5 in reply toAgedCrone

Shall do! Still waiting though. My Dr said it is very expensive

AgedCrone profile image
AgedCrone in reply toHessie5

Need not price should be the criteria. When you say "your doctor " do you mean a GP or a rheumatologist? If the latter try pushing him to apply for funding. ....I don't know what the qualifying need is for this drug, but presumably your DAS comes into it somewhere?

If the former get referred to a Rheumy....I don't think GP's can actually be the primary prescriber for Biologics.

Hessie5 profile image
Hessie5 in reply toAgedCrone

It was my rheumy who applied. Went to see my GP as my prednisone ran out and he commented on this from my notes on the system. His reason is that everything else failed my markers are high with raging inflamnation and he feels stuck! So here’s hoping.

AgedCrone profile image
AgedCrone in reply toHessie5

So your Rheumy has applied & been refused? You say you have already tried ?Biologics ....I understand the number you can try differs under different Health Authorities?

I'd go back to see your Rheumy & ask him why he was refused funding & at least try to persuade him to prescribe something to make you more comfortable ,& to appeal the refusal. You can't be expected to just take Prednisolone forever.

If you don't put up a fight he will presume you have accepted the refusal .....& not do anything further to help you.

If this fails, ask your GP to refer you to a different Rheumatologist who may have more success.......I'd do anything if I was in the terrible pain RA causes.

I know it's very difficult to upfront disagree with your doctor, but needs must sometimes .

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