MTX no longer working. What are best alternatives?

[MsEm]

Hi, just thought I'd post to see if anyone has been through similar situation to me and what their story was with med switching. I've been on MTX since being diagnosed with RA nearly 8 years ago. Generally it's worked pretty well in that time, although I was shifted onto the metojet version around 3 years ago which has been really good. However, recently flare ups have been more frequent and much more painful, to the point of being debilitating. I have always been told that I would probably switch onto another drug if MTX stopped working. But, I'm not sure what the next 'go to' drug is when MTX doesn't work. The earliest I can see my NHS consultant (who is ace) is early October, so I have a bit of a wait and trying to manage symptoms the best I can. Would be interested to hear if anyone has been through similar and what seems to the best/better/more usual alternative drug. Thanks 😊 xx

[RA22345]

I was offered Leflunomide when mtx stopped working for me and subsequently a humira similar biologic. There are pathways to new meds which may differ between health authorities, but you should be supported in moving to the right one.

[MsEm in reply to RA22345]

Thank you! Really helpful 😀

[helixhelix]

i think the NICE pathway is exactly that - Leflunomide and then if more control is needed an anti-tnf biosimilar biologic

[MsEm in reply to helixhelix]

Thank you for this! I hadn't realised there is a set NICE pathway. Very helpful to know 😀

[helixhelix in reply to MsEm]

Here you are. It would be great if everyone got everything recommended!

nice.org.uk/guidance/ng100/...

[MsEm in reply to helixhelix]

Aww, thank you! Super helpful 👌

[AgedCrone]

As you can’t get to see your consultant for a couple of months, I’d give your Rheumatology nurse a call and she will help explain which meds you are likely to be offered & some advice on how to cope whilst you wait.If you are lucky she may even be able to bring forward your October appointment.

[MsEm in reply to AgedCrone]

Ah, I wish! Totally agree this would be a sensible step to take and I have called them. But rheumatology nurses in my hospital basically can't do much except advise on taking painkillers and suggest visiting A&E, which doesn't sound like a feasible thing to do! They won't even deal with appointments, unfortunately. They're very nice but so overstretched I think. I will try again with the appointments line and see if there are any cancellations. Seems a bit mad but also that's the state things are in these days, I guess!

[JGBH in reply to MsEm]

Hi, why not try phoning your rheumatologist’s secretary and asking for an email address? You could then explain exactly what is happening, asking for advice and stating the RA nurse was not in a position to advise you further. Don’t hesitate to mention your pain levels are debilitating. I do so whenever I have a difficult time coping. Good luck.

[MsEm in reply to JGBH]

Thank you, JGBH! I have done so, and the nearest appointment they could offer was October. But will try this route again. Maybe persistent calls will help make them take note!

[JGBH in reply to MsEm]

Clearly an appointment for October when you’re struggling so much is unacceptable… So, yes keep on phoning until you get an appointment as soon as possible. One has to be so persistent..

[Mall]

I remained on methotrexate and had other drugs added. Currently methotrexate with benapali a biologic.

[MsEm in reply to Mall]

Interesting! I didn't realise you could mix and match like this. Thanks for this! 😍

[AgedCrone in reply to MsEm]

Yes, sadly these days rheumy nurses are very over stretched…but you could always try! They will be able to speak to your rheumatologist.

Many people mix & match many drugs…depending on their condition, but it’s what their rheumatologist chooses.The doctors use their experience to prescribe what they think will suit every individual patient. There is no..” Next we take X”

I have been very lucky,& have always had doctors whe preferred not to mix & match…they decided that would suit me..but it would not suit everybody…..& their choices mostly worked out.

It’s very much a case of test results & your rheumy’s years of experience.

Hope things get settled for you soon.

[MsEm in reply to AgedCrone]

Thank you so much for this!

[Chockyuk]

Hello 👋

I’m same as Mall (above), stayed on Mthx and had Sulfsalazine added in, (not wanting to jinx it) but has been amazing! It’s taken about 9 months, but my ESR is finally under 20, it was 149 for ages.

Hopefully you will get something suitable, I’m assuming most of us will chop and change over the years until we find the right medication for us.

I hope you get it sorted soon 👍👍

[MsEm in reply to Chockyuk]

Thank you! 😊 I didn't mention that I'm also on Sulfsalazine. It definitely worked for a good few years, but as you say it is an ongoing and changing scenario with drugs. Such is our lot!! 😆

[rmros]

With RA I believe that you could be eligible for biologics if you've failed on two conventional DMARDs, one of which must be methotrexate (unless contraindicated).

So if you've already tried something else as well then probably a biologic, but they might keep you on the methotrexate as well - it's meant to help the biologic and prevent developing antibodies to it and that's been the case with me. (I'm on my third biologic as the first two stopped working after 9 months. Then they gave me methotrexate with the third one and it's still working touch wood some 2 years later).

What dose of MTX are you taking? Is there a chance it could be increased or are you at maximum dose?

[MsEm in reply to rmros]

Thank you, rmros! This is really useful to know. Love this forum, you're all so knowledgeable and helpful! I'm on 22.5mg MTX which I'm told is a pretty high dose. Thanks again for sharing your story too! 😊

[rmros in reply to MsEm]

Yeah I think that's near enough the highest dose unfortunately - I'm only on 12.5mg methotrexate, with a biologic, so there's scope for increasing if needs be.

Whatever they do next I hope it works - biologics really can be very good and very easy when you find the right one.

[Boxerlady]

I was originally on Methotrexate and Hydroxychloroquin. After flaring and having Methotrexate increased to 25mg by injection with no effect, I was assessed and as my DAS score wasn't high enough to qualify for biologics, I was given Sulphasalzine which has been great. There are lots of options so hopefully you'll find the right one for you quickly.

Meantime, I'd make sure that your team knows that you're struggling by phoning the nurse helpline or the consultant's secretary as they might want to see you sooner and/or give you a steroid injection to tide you over.

[MsEm in reply to Boxerlady]

Thank you Boxerlady (love the name!). I was kind of hoping the nurse would suggest I come in for a steroid injection to tide me over too. Hmm... no such luck!

[Doodlereggie]

Hi.Like others say I believe there is a drug nowadays for everybody on ra.I have had ra for over 23 years.initially only preds at that time,then tried methotrexate but side effects rotten.then azathioprine,then hydroxythorapine,then last year biologics,and now JAK inhibitor.The JAK is amazing and at 78 got my mojo back!I understand you have to have moderate to severe ra now,but it used to be only for severe cases,and have tried two other drugs which did not work,as they are very expensive.My crp has gone from 78 to 7 in 6 months and that says it all.The meds today are a miracle,so don’t give up.Ask your rheumy what is available to try,the scope is there if you have a good rheumy as I do.Good luck and keep us posted.x

[Hisue in reply to Doodlereggie]

I’m on a JAK inhibitor now, too, after years of suffering & joint damage on various dmards & biologics. Finally some pain relief!

In USA 30 tablets retail, cost $6-8,000/mth.

Preposterous.

[MsEm in reply to Hisue]

OMG! That's insane! I know the NHS has its issues, but at least medication is affordable. In fact I also have an underactive thyroid so that condition (which is infinitely easier to manage than RA) qualifies me for free medication. I can't understand though why RA doesn't qualify us all for free medication. The inequalities in health care globally is so depressing!

[Hisue in reply to MsEm]

I have good US medical insurance but it only covers 80% of prescriptions. A kind RPh helped me get patient assistance for the balance $ and consequently, she saved my life.

The rheumatologist office should have done this for me. They’re too lazy & filling out required assistance forms takes time & “time is money”. Disgraceful.

[MsEm in reply to Hisue]

Goodness, yes it is disgraceful. But heartening to know there is kindness out there. So pleased it has worked out OK for you, Hisue 💫

[MsEm in reply to Doodlereggie]

Wow! That's amazing you've got your mojo back and at 78 with these meds. Honestly, I can't tell you how happy that makes me knowing you're living a mojo filled life in your 70s. I'm in my late 40s, a pretty positive person but I do kind of dread how things might turn out as I age. So this is a brilliant post to read! Keep rocking, Doodlereggie! 🤩

[oldtimer2]

There is excellent guidance on the NRAS treatment pages of the website. If you've read that, you will be in a good position to discuss your treatment pathway with the professionals.

nras.org.uk/information-sup...

Your review appointment is quite a long time to wait in pain - it would be worth contacting the specialist rheumatology nurse before then for advice and possibly even an earlier assessment.

[MsEm in reply to oldtimer2]

Brilliant, thank you! I've also ordered the medication booklet from NRAS. Sadly the rheumy nurse couldn't do anything for me. I think they're do stretched and always advise a visit to A&E which is a bit bonkers to be honest. I will be calling again for any cancellations and possibly even to see if I can see my consultant privately, even if it does cost a whack, just to get the ball rolling.

Term is starting up soon and I can't imagine juggling the pain with teaching my classes, yikes!

[medway-lady]

Lefludamide put my RA into remission for years. It doesn’t suit everyone but was great for me better than the biologics by a country mile. It had tone stopped because of CKD which wasn’t due to the LEF.

[MsEm in reply to medway-lady]

Ooh interesting to hear this. Thank you!

[medway-lady in reply to MsEm]

I’d warn you though after about 4 days after 5he first dose I was in agony could barely lift my shoulders and cutting up anything was hard. Then after another few days say by day 10 I woke up and all pain and swelling gone. I could sit on the floor and get up. Went back to dancing and rambling etc for years. The world got colour again and life was normal.

[BeachsideVia]

I started MTX a few months ago, stayed on it for 6 months. I injected myself, no problem. My hair started to fall out after 3 months. I also started having bad flares again. I decided to stop and not take another DMARD. I have modified my diet, no gluten, no dairy, I make my ginger turmeric tea in the pressure cooker. I have a new integrative medicine doc and asked to start low dose Naltrexone (LDN). I have been on it for a week, have 2 more weeks of increasing dose. I really don't notice much yet. However since I stopped the MTX I have not had a flare (they were bad, in my knees, ankles, could not walk my dog). I do have aches all around, my OA in my left hip is bothering me, and I irritated my herniated L4L5 disc ( moving things in my courtyard before this hurricane). I had to get a steroid shot for it. Just mean to say, I still have lots of disability, but I pray I am out of that RA flare up loop. I also have osteoporosis and my previous treatments (5 years prolia, 1 year reclast) have not really helped. I am focusing on keeping up with proper supplements, and plan on starting appropriate weight bearing exercises (I am avoiding like the plague!)

[MsEm in reply to BeachsideVia]

Goodness, this sounds full on for you. So sorry to hear about the flares. Fingers crossed the latest set of meds will start working soon. X

[BonesY2K]

would defo push for a biologic!