Benepali gets the boot

General
1

Morning everyone,
Had a rheumy assessment yesterday and sadly after nearly a year on this (for those than don’t know, it’s a biosimilar to Enbrel) and it’s astonishing clear this biologic is no longer doing anything for me.

Out of the 68 joint count, 48 are very unhappy, excessively so and another 5 are grossly swollen. So there’s only 15 of those 68 joints that aren’t giving me hell, I think. As I’m not totally sure till I get I get the letter that it’s ‘plus 5 swollen ones’, or whether of the 48, 5 are swollen. Being a lawyer such preciseness is important to me sadly:rofl: Not that it actually matters at all really. The main thing is that I feel just bloody awful and thankfully there’s evidence as to why I feel I so bloody awful.

One of the most challenging progressions is that this hell of a disease has settled somewhat too long in my sacroilliac joints now, which I find overly challenging on all counts and more than a pain in the behind. It hates me sitting, it’s not great with me lying down either. It likes me to walk, but the other ‘affected’ joints aren’t too happy with too much walking though. I want to go and find a zero gravity flotation chamber and just bob about in that for a while. Gosh that would be bliss wouldn’t it? That or a big swimming pool all to myself.

And I had forgotten what the fatigue issues were really like when this disease is so uncontrolled. That’s been challenging too along with the brain that’s turns into treacle. And along with the incessant need for tears. Being of the Celtic persuasion, and female, tears and the ability to cry them is fairly standard for all sorts of reasons, joy and anger too, but I’ve reached ridicuous proportions these last few weeks. And rheumy yesterday, got cried all over too. So did the lovely woman on the Tube who gave up her seat for me on my way home.

We worked out yesterday that I initially was a good responder to Benepali. then wasn’t and then finally got a really good 3 months out of it, January to March and then it just gave up, packed it bags and took a hike. Or rather packed it bags and just sulked.

So next up is Imradi (the biosimilar to Humira). In the UK it takes a little time to get the ducks in a row NHS funding wise, so earliest I’ll start this is probably July. Meanwhile I go back to residing in ‘prednisolone land’. Thankfully I do quite well on pred, certainly emotionally. So expect Pollyanna type posts and responses over the next few weeks that I do understand can be intensely irritating but they’re certainly better for me anyhow than the incessant tears. And sadly for my bank balance internet shopping might become more attractive too.

I was offered to go on a trial for Tremfrya (I think it is, probably mis-spelt it). However that would entail a monthly round trip of 400 odd miles to see the rheumy team and of course the possibility I’d be given the placebo. Sadly work wise (I work full time or at least try to) it probably wasn’t a great idea. It’s a pity as I would have liked to be have been involved in trying to get another drug for us, NICE approved. Indeed it would have been just fabulous to be just ‘involved’. But hey ho.

The thought process yesterday is that since I was a ‘responder’ to an anti-TFNa, it’s likely another anti-TFNa will work better. From my own research that seems the present current thinking treatment wise, worldwide. If it isn’t, do please let me know.

And wish me luck. I certainly need it right now.

1 Like
2

How incredibly frustrating! It seems like it’s high time that you get a good response that sticks from a medication. I hope you do enjoy the prednisolone while you are waiting for the next medication.

My understanding was that you will likely get a good response but it may not be as good as the first biosimilar.

3

Thank you. I live in hope presently.

But since the first biologic reponse wasn’t good, this one had better be. I can’t imagine if it’s supposed to be a ‘lesser’ response though, that they would bother to prescribe it at all. Cost wise here given the NHS, if nothing else. Are you sure about that? I had thought the thinking was if you respond at all to anti-TFNa one (but then stop as I’ve done) other anti-TFNa meds might work much better. But if you never responded to the first anti-TNFa one in the first place, you’re then unlikely to respond to any other anti-TFNa meds and need to try the interlukin (spelling???) ones like Cosentynx etc instead.

I’m not interested in having a ‘lesser’ response to the next one than I’ve had on the first one. That makes no sense to me and merely wastes time as my disease progresses at what seems like an alarming rate presently. Gulp…

Also since entanercept/Enbrel/Benapali have the same ‘mopping up’ circulating effect whereas adalimumab/Humira/Imraldi attach to the protein I was told whilst they don’t yet know why yet, people who don’t sustain a response to one, most likely sustain a response to the other.

Any further thoughts?

4

Hey I’m on my third biological. How they inhibit tnf varies. They fail because they fail to inhibit tnf. Its sorta like fly fishing. A Royal wulff is almost always successful for a bit but to really catch fish you need to match the hatch. I have multiple caddis patterns. Elk hair is the most durable and generally the best but for reasons I’ll never know, when the strikes slow down, changing ti the same pattern done up with peacock feathers works. My theory is they smell different…

And sometimes if I’m fishing for dinner because I’m on the trail I’m not above catching a grasshopper or grubbing up a worm till the hatch gets going. Not at all unlike doing a predi dose for a while…

5

Good to know Mr Lamb thank you.

Always wanted to learn fly fishing…Just standing there, whooping the line over and back on a river, sounds like being in paradise, especially out where you live. Mind you on pred it might get overly frenetic and not be at all serene. That picture in my mind of me on pred being ‘super duper Pollyanna’ fly fishing (or better still, learning fly fishing) set off some proper giggles. I keep that one and take it out and giggle again when needed.

My ex-brother in law teaches fly fishing in New Mexico as part of cancer therapy I believe, for people recovering from or enduring cancer treatment. Always thought what a lovely thing to do for both parties.

I’m still sort of gutted I’m not going to do the trial from Tremfrya (or however it’s spelt). I’m so, so curious about the science of how these biologics work. Interestingly the said brother in law above was a research scientist for the big pharma companies - think his speciality was HIV before he retired. I must catch up with him one of these days. I’ll get him to teach me fly fishing and also get him to explain how these biologics work.

I wish it wasn’t because they ‘smell’ different. What a good analogy. I wish it because there was capacity to know what bit of my immune system is insane and therefore what drug would best help me as against what bit of yours was and which drug worked better for you. I wish it was that precise and consequently that ‘easy’.

I wish from the very bottom of my heart I never got this disease. However then I’d have never got to meet all of you on this page either. And I’m really glad I have got to meet all of you guys, when it means I can giggle about fly fishing on pred. Who’d have thought, who’d have ever thought!:rofl::joy::rofl: Just perfectly brilliant.

6

Being on pred can be good thing fly fishing especially during the Mayfly Hatch (which is just getting going) or for Greyling during their evening feeding Frenzy.

You know there are a Bunch of Bens Friends Folks doing just that in August… (Community Help With Summer Fund Raiser For New Communities) Granted we turned it into a fundraiser for new communities and raise awareness of Ben’s Friends, but mostly its a just a get together.

2 Likes
7

Yes I know but I can’t be there, so incredibly sadly.

8

Next Year!!!

9

I’ll start an account with the lottery then. :heart:

10

Three months of benefit from a medication is so unfair! Doesn’t it take almost three months to even know if it’s really working?? I hope the next one can more than make up for it and last twice as long as anyone thought it would.

Humira is now paying for my methotrexate because it’s been shown to prolong the success window (and the revenue stream) for the Humira. It’s a drug that needs it’s own drug!

Anyway, I’ll wish you lots of luck because until they can figure out exactly which medication works for which person, it seems like luck is a huge factor in getting the right treatment. Fingers crossed for you!

11

In my experience that’s for DMARDs mostly, if not up to 6 to 9 months even. For biologics the usual starting trial is 3 months but many people for whom a particular one works, usually respond faster than that, many appear to respond positively in a couple of weeks as you’re reading from others’ comments on this thread and other threads.

Initially I was a fast responder to Benepali and I literally was running for the train within 2 weeks. Then I had to skip a dose and went right back to be a slow responder. Try never to skip a dose in the first 12 weeks. Finally though I got those three months of pure bliss (after about 4 months of achingly slowly seeing it work better). Rheumy told me often biologics don’t get up to full efficacy till around one year though too.

My appointment with rheumy last week coincided with me being on Benepali for 11 months. To have a 53 out 68 joint score badly affected obviously means Benepali gave up the ghost. To feel as rotten as a I do now certainly told me it was doing nothing for me anymore.

It’s said the Humira types of anti-TFNa do better with a DMARD in comparison to the Enbrel types. Although it seems to be a moveable feast advice wise now , much more than 3 years ago when this first hit me. Imraldi is a Humira type and it’s likely my presription of it will be without a DMARD too as I mxt hates me so I’m not to touch it again, sulfasalazine initially loved me but made me incredibly ill for two months last autumn and me and no doctor wants me to go through again and I’ve no intention of letting leflunomide near me.

However I’ve changed my mind about doing the trial of Tremfrya (spelling) and emailed the rheumy that I would so love to be included if possible. So I’m waiting to hear. When I sat and thought about it, it seemed utterly idiotic not to jump at such a chance.

12

Does anyone stay on MTX alone…no biologics or are we all destined to run the course of hoping, helping and switching? Did you start out only on MTX and then begin the journey that you are enduring? I feel bad for you in your suffering and fear that I am just behind you a few years!

13

Many people do actually. It all depends on the level of your disease progression mostly. Some people’s disease is slow other people’s is faster. Mxt hated me and consequently I hated it so I didn’t stay on it more than a couple of weeks. The DMARD that worked for me was sulfasalazine and it worked well too until it just stopped. Hence then qualifying (in the UK our disease progression is measured etc) for funding for biologics as in Benepali. Sometimes those can be a little hit and miss until you find the right one for you as in marry up the right bit of your immune system with the right biologic. Biologics are more sophisticated too, so tend to do a better job overall. So frankly I’m glad I’ve hit them so to speak. :smiley:

14

I’ve been taking Mtx since 2012. It never was enough on its own. But I started Humira in 2014 and have been on it ever since, though I’m now on its biosimilar Imraldi as the switchover is NHS policy.

Are you thinking that biologics necessarily involve chopping & changing? That’s not so, though of course we’re more likely to hear from those in that frustrating situation than from people who are doing okay without needing to try a new biologic.

I was okay-ish on Mtx, tons better than before starting treatment. But then the early years of Humira were a revelation, really good result. The truth is that this is a progressive disease and it may get more complex or result in damage as the years go by no matter what drugs we take. The aim is to slow disease progression right down.

Funny isn’t it … when I am suffering I feel I want exactly the right sort of empathy & good luck with that 'cos I can barely identify what that means myself! But much of the time I could get quite huffy if described as ‘suffering’! So, you know, as time goes by life with PsA can be just fine … just, well, a little variable.

1 Like