Will they change my biologics?

[Aperson99]

Hi there,

I started on Benepali and it was a wonder drug for 6 months, but after having to take a 2 week break, it never started working again. 2 months on and even with my MTX dose increased it’s like I’m taking no meds at all.

I will ask if it’s possible to try another biologic, my question is, is this something the consultant is able to do easily and readily, or if it has stopped working does that block me out from that treatment type? It’s such a disappointment to have it suddenly not working after just a 2 week break I’m keen to get back to the way things could be.

Thanks for your help!

[helixhelix]

It is something that should be able to be done easily.... you have shown that you respond well to anti-tnf drugs so a decent consultant will be happy to try you on another.

They might want you to wait another month, as even second time round it can take a while. But shouldn’t refuse to swap you. So stick to your guns.

[Aperson99 in reply to helixhelix]

Thanks v much for your reply. That is reassuring. She is a great consultant so I’m hoping she will change. I’m on 3 weekly blood tests to monitor my MTX and looks like she is giving me some time to respond to the new dose. With rheumatology it seems a slow burn to confirm if a drug really isn’t working. Maybe another MTX change again if still not working. It’s mad how temperamental our bodies are with some drugs, you really just don’t know. If it works again I think I will try and do everything I can in life as you never know when they will stop working! Thanks again.

[allanah]

Hi.i think he could discuss that with you, I've had mine changed. Goid luck let us know how it goes xx

[Aperson99 in reply to allanah]

Thanks v much - I definitely will do. I’m hoping for a new biologic in time for the summer. Got to have a target to hope for!

[Aperson99 in reply to allanah]

So it’s been 3 months and I can report back - hopefully to help other readers. So I went from 4 to 6 MTX tablets. Nothing changed until 6 weeks when the swelling on infected joins slowly reduced. However, I also had (finally) my root canal done and the dentist said there was a lot of pus there in the abscess, about the same time. My joints and pain is right down now and speaking to the Rheumatology nurse I said could an asymptomatic abscess be stimulating my immune system making the meds work less. He said it could be a contributing factor. I suppose the message I have learnt here is to always make sure your teeth are good, but that doesn’t help in a pandemic and I’ve been waiting over a year for a tooth to come out, let’s hope that doesn’t get infected too!

[allanah in reply to Aperson99]

Good news x

[Aperson99 in reply to allanah]

Thanks, good news rarely comes and I’ve learnt things can suddenly change at any moment with rheumatology diseases…teaches u to live for the now!

[allanah in reply to Aperson99]

On that I really agree! I do what Ican when I can, when I cant I watch a movie !! But yes somedays i push and go for a walk or drive to change the scenery which helps me x

[Whezziewhoozie]

Hi, the process of asking to change over is pretty straight forward, but I would start the sooner rather than later. I am in the middle of changing from Cimzia to Benapali. But I have had to have the x rays and bloods again that I had to start biologics. Then I will have an appointment with the biologics nurse. Then the prescription will have to be written and the home care team will have to deliver. Then someone will have to come and teach me how to give it. Not that I don’t know but apparently all the injection pens are a little different. So it’s about a month or so process.

With COVID I am expecting it to go on for a while, as I got to the point of desperation, it was not easy to get a response from the RA Team. I contacted them in September and I had my appointment in December where they decided to change the biologic. I am waiting for the next step

[Aperson99 in reply to Whezziewhoozie]

Thanks v much for that, I hope things are moving along for you more now. Its taken 6 weeks on a MTX dose increase to see any slight reduction in the swelling, but I do fear its only temporary and sometimes a reduction where you can still be impaired as I aam now, means it may not be enough for a medication change. Treatment is such a slow process to see if things work or not... Covid does not help!

[Smelliott]

Ah, you see, this is exactly the sort of thing I'm currently worried about. I hope you get something sorted soon!

[Aperson99 in reply to Smelliott]

Thanks very much. I have noticed a bit of reduction in my swelling now after about 6 weeks since the dose increase to MTX. I'm on 15mg, but was on 20mg, so maybe MTX might be what is needed to work with Benepali, but usually the MTX dose taken with MTX isn't 20mg typically.

[Wobbies]

Take heart the same happened to me and I was immediately changed to a different biologic, so I am sure you will too.

[Aperson99 in reply to Wobbies]

Thanks very much - its so reassuring to hear messages like this as sometimes it can wear u down this disease.

[Wobbies in reply to Aperson99]

It does wear you down especially as it all seems so much trial and error. Good luck and when you fond the right drug, which will probably be the next one, the world will seem a better place. xx

[kerryhannah]

Yes I echo others here. I was on Benepali for a few years but recently was changed to Cimzia as it started to not work as well for me. No issues to change and was done by telephone consultation. All sorted through HaH and had a nurse come out in full PPE etc to show me how to use it. The injections are the same pretty much but they have to show you and also be there for the first injection I guess in case of any issues? Good luck x

[Aperson99]

Thanks very much for that. I'm going to keep my fingers crossed, I have my next telephone consultation in April and see what they say then. Its good to hear stories like your own.