4 Strikes (Biologics) and You're Out

[Dingaan]

I have seronegative inflamatory arthritis and have been on biologics for the last 10 years. Prior to starting biologics I could hardly walk and was in a lot of pain especially in my knees. Spent nearly 2 years on crutches and was on disability. I started with Enbrel and within days my symptoms improved massivley. I was able to walk without crutches and my strength improved each day. I started leading an almost normal life and was so relieved thinking this was how I could live the rest of my life.

I was then changed from Enbrel to Benepali (Biosimilar) and was told this was the same drug just cheaper for the NHS. Looking back I am convinced this was when things started to go down hill for me. The stiffness started to come back in my knees and then my hip to the point I needed all 3 replaced.

After the replacements I was then put on Rituximab infusions for a few months and this didn't help. My feet and ankles started to get inflamed and walking started to get difficult. I was then put onto Orencia which I have been on for the last 6 months which hasn't helped. I hardly leave my house as walking is so painful for me.

I saw my Rheumatologist 2 days ago and he suggested we try Golimumab. During our discussions he said this was the last Biologic we could try as the CCG (Clinical Commissioning Groups who control funding and make decissions) limit biologics to 4 and if not successfull won't fund anymore.

Has anybody heard or have experience of this?

I'm hoping like mad Golimumab works because if it doesn't I was under the wrong impression we could try other biologics until 1 worked for me. The alternative is for me to get worse or have to pay privately which will hit me hard.

I look forward to hearing your comments.

PS: I am also a bit annoyed that I was put on Rituximab as the success rate for seronegative patients is low. When I asked my rheumatologist he said he has to follow the drug pathways the CCG decide so has no choice. 1 out of my 4 chances wasted on top of the move from Enbrel to Benepali.

[allanah]

I've had Enbrel, Rituximab, Humira, Remicade and now on Tocizilumab...... have the rules changed or is it different doctors or areas will do different treatments. If this tcz stops working I would also be stuffed!

Most of the biologics worked well for me apart from a severe anaphylaxis to Remicade in my case( other people are fine in it) but they just lost their effectiveness. Hope others know the answer xxx feel better soon x

[Dingaan in reply to allanah]

I believe the rules are different with the regions I was told. It is worrying. If I get worse then can see a lot of expenses racking up, joint replacements, specialists, hospital visits, disability, medications, productivity, etc. So seems a better deal for them to get my disease under control.

[Nessa28]

Hi there , when I was put on Humeria I was told I was allowed this one and if it didn't work I maybe allowed another treatment but that was the trusts policy . I'm about to go on bio similar and like you are zero negative . I'm in a full flair at present and I am concerned that this is the start of a clever body fighting back . As has been said every trust has a different policy and everything comes down to cost . Hope what you're on now works for you 🤞

[Dingaan]

I'm on Methotrexate, Sulfasalazine, Hydroxychoroquine, Prednisolone, Naproxen, etc. I think my Rheumatologist is doing the best he can but is ruled by the CCG and their decissions.

[helixhelix]

How alarming for you. Especially if the change from Enbrel sparked all this off.

I don't think you can pay privately for these drugs as they are restricted. My understanding is that they can only be prescribed through the NHS. Which sort of makes sense as otherwise people could pay for a few months amd then the NHS would have to pick up the pieces.

Do question your doctor hard anout whether he/she is sure this is the best for you. And then think as positive as you can. If it doesn't work there may be some form of appeal process, ut don't think about that yet.

I really hope this is your drug.

[fossil321]

Good evening Dingaan, I was on Enbrel from 2008 until earlier this year when I had to change to Benepali. On Enbrel I was fine, for me it was the best drug ever but I have started to notice that I am aching more and more. So in view of what you have said I will have a go at trying to convince my consultant that I maybe need to go back onto Enbrel! I do not need to deteriorate! I have had RA for 32 years since I was 36 and take the Benepali and hydroxychloroquine which controls it to a certain extent at the moment.

[Dingaan]

There are a few discussions here about the move from Enbrel to Benepali. I understand biosimilars to be similar but not exactly the same as the drug they copy. From now onwards if something works for me and they try convince me to try something else I will refuse.

[crashdoll in reply to Dingaan]

I think you’d be right to refuse. Also if the new drug doesn’t work (although obviously I hope it does!), I’d also argue it was unfair to put you on rituxumab. The respiratory dr wanted me to come off humira and go onto this but rheum said it’s really nowhere near as effective for seronegative patients. I don’t see why you should be penalised as surely your rheum should be aware.

[VeronicaF]

it stupid and not cost effective because if cheaper ones don't work, how much will it cost NHS for operations and so on.

like they trying to do the cheaper ones cheaper by cheaper brands but then people can't cope with side effects and have to come off them to go on more expensive ones.

it doesn't make sense

people are more likely to go into remission on good brands and then come off all drugs, that makes more sense.