Moving from methotrexate to biologic

[NormalAuntFanny]

I'm probably going to move from meth to a biologic (humira), am seeing my specialist next week, as I'm finding the fatigue getting too much despite it working very well apart from this.

Has anyone got any experience of changing and how was it for you?

Hi I'm just about to start Methotrexate pills, I wish I could of had hunira first but it's so expensive that you have to try methotrexate first, but by all means I've seen biologic medicines are meant to be so much more effective, good look my lovely ❤️

I was on methotrexate but the tablets and then the injections made me so nauseous I asked to come off them

I was already on hydroxychloroquine and humira and I feel my RA is well controlled now. The humira definitely made a difference for me. Good luck

I'm on Methotrexate and then on to biologics. I kept taking MTX (injections) and went on to Humira, which didn't work.

I then went on to Baricitinib, which worked for a bit, then stopped. This gave me bad infections.

I'm now on Rituximab infusions now (take 7 hours at the hospital, two to three times a year) and it's been a game changer. Rituximab makes me absolutely exhausted and I am susceptible to infections again, but it's so effective.

I have never been taken off MTX or Hydroxychloroquin.

Biologics have made me very tired.

I couldn’t take methotrexate or some of the others as I had reactions. I was put on Benepali, which worked for me from the first injection, never had any issues with it.

Thanks for all the messages, seems like some mixed experiences, I had thought biologics were better tolerated than methotrexate, at least that the side effects were less tiring.

Have had some blood tests and just waiting to see if I have TB before seeing the specialist next week when I'll find out what I'll get.

Having a bit of a flare up this week so hoping for a change for the better.

I have tried a lot of DMARDS (methotrexate, sulfasalazine, leflunomide (twice)) and 4 biologics. I reacted to all the DMARDs - hair loss, low cell counts. I reacted 2 or 3 biologics - humira being one - again super low cell counts.
But overall I found the biologics far easier to tolerate. So far zero issues after 3 months on the latest one.

Humira has been linked to nervous system illness such as MS or Guilleme Barr.

I've unfortunately been either allergic to many of the treatment drugs or they've had no effect on me so I moved to biologics pretty quickly in the 21 years I've had IBD.

First was infliximab, lasted 2.5 years before it started to wear off between 8 weekly doses. Moved onto Adalimumab and stayed on that for about 6 years but constantly fighting infections and supporting it with steroids at least twice a year.

The NHS took me off the branded humira onto generic once the patent ended and I ended up hospitalised due to incompatibility and they then couldn't put me back on it as I'd built up resistance.

I'm now on ustekinumab and about 2.5 years in with no side effects and disease completely controlled. I will not move off this one unless the effects start to wear off, I'm on 8 weekly self injections and can honestly say it's the most stable my condition has ever been.

Good luck in your biologic journey, happy to answer any questions you may have.

Well I saw the rheumatologist this morning (yes Saturday!) and have got my prescription for humira and collected it already from the chemist. Amazing how you can get something so expensive for free, thank you french health system. Apparently it's 7000 dollars a box in the US.

You sound like you've had a real journey @Fakingitnotmakingit, I am a bit concerned after reading the massive patient leaflet about the many side effects. Do you remember how it felt when you started it?

@NormalAuntFanny I don't remember having any side effects with humira, it was truly a great medicine for me and kept everything under control for a few years.

The NHS has to be cost efficient and when the patent restriction ended our hospital moved all of their humira patients onto the generic version in cost saving exercise, if they'd left me on it I'd probably still be on it today, I was very stable disease wise when on it with no nausea or other effects.

One thing I have noticed with the biologics is my ability to put on and retain weight. I'm the heaviest I've ever been and can eat and drink what I like with no issues, which is a novelty after so many years of having to watch what I have.

I was diagnosed with juvenile rheumatoid arthritis when I was three, having been exhibiting symptoms since I was less than a year old. The disease was very active and uncontrolable during my childhood and I had multiple severe flares and spent months in hospital. I was on methotrexate from the age of about eleven and it pretty much ruined my teen years. I'd finish school on Friday, have the methotrexate injection straight after and spend the rest of the weekend projectile vomiting and suffering from a severe migraine, hoping the symptoms would have abated by Monday morning in time for me to go back to school. I don't even remember it making much difference to my RA. The only thing that really helped ease rheumatoid flares in my child and teen years was high dose steroids which worked like a miracle but are hardly ideal for a growing child. I started biologics in my early twenties and it was a revelation. I haven't had a single major flare since I've been on them and I have found the side-effects very minimal and managable, I hope they work out as well for you, I can't praise them highly enough!

@Everlore your experience sounds very similar to my dds. She was diagnosed with JIA when she was 8/9 (she is now 24) and was put on mtx tablets. Sadly these made her stomach really sore and it would go rock hard, and they'd knock her out. She went on to the injection and it did seem to help, but the weekly injection at the hospital was hard on her.
As she got into her teen years her weeks were injection on a Friday and feel sick all weekend then back to school Monday where she was having huge issues there, so not a great week either. It really affected her mentally.
Sadly, she has tried everything there is available. They either didn't work or had a reaction to them. She is currently on just paracetamol and Naproxen.

So far so good @Everlore just had a headache but no other symptoms.
Not actually working yet but already feel good for not having had meth this week - feel about 10iq points cleverer already!