Methotrexate stopped working ?

[memyselfi]

I've had RA for about 3 years,
I was in a bad way at the start and prescribed steroids . I ended up on methotrexate which really helped with pain and mobility . I take 25mg once a week.
For the last couple of months my symptoms have worsened . I'm in pain all the time now. I can hardly lift a cup or brush my teeth with my right hand.
So I'm going to see my rheumatologist ( hopefully , Bupa are telling me they won't continue cover this as it's a chronic condition - whole other thread).
My question is , what's next ?
Steroids ?
More methotrexate?
Is this the progression of the illness or a temporary flare ?
I'm a bit scared to be honest.

The most likely course (and the one that finally got me feeling like a normal human being) is a shot of im steroids to tide you over and entry onto the biologics pathway.

You're quite likely to be started on Humira - you'll do some more bloods, get checked for TB immunity/HIV in the process, have a chest x-ray and then it's all systems go with a loading dose.

I can't recommend them enough if they decide to prescribe them.

Sorry if I'm stating the obvious but are you taking the methotrexate at exactly the same time every week? It does decrease the effectiveness if you don't.

I'm on methotrexate and have been for years. It generally does the trick but I had a flare up recently when it really wasn't working. I saw my rheumatologist who gave me a steroid jab as a quick intervention (which really helped), took bloods and said if it didn't calm down there are other options, including a weekly injection of something else (not steroids - can't remember what it was called) or increasing methotrexate dose. As it was I'm still on the same dose (20mg) and it's working fine again. So don't despair - it may just be a temporary blip. I hope you feel better soon.

@NeverDropYourMooncup that was it - biologics

I take methotrexate, but it never seemed to make any difference to my RA. I can't take steroids. However, biologics have been life changing. I had constant pain in every bilateral joint except my hips (where I now have post herpetic neuralgia after a case of shingles after my double knee replacement - what joy).

After two months about 75% of the pain went, I could move my arms, the constant pain in my wrist which would make me scream if unexpectedly touch, and my ankles felt normal again, after frequently being in tears thinking I would be in a wheelchair in another year.

I still take methotrexate, because from what the rheumatologist said, it will make the biologic effective for a longer time.

I've found that eventually RA drugs lose their effectiveness as the disease changes within you, and your body builds up a tolerance to them. You'll likely be given new medication either in addition to, or instead of methotrexate, and may have a steroid injection to tide you over while the new medication takes effect.

I quit methotrexate years ago as it was destroying my immune system, I was constantly ill with various viruses, and off work a lot as a result. The consultant told me not to stop taking it as it was helping the RA, but I literally couldn't function. Don't take no for an answer, you need something else.

I don't think any of us know what you'll be prescribed as it very much depends on the individual. For example I've never been prescribed Humera as mentioned in a PP.
I think I've been on 5 different drugs, as well as steroids over the years. I'm having flare ups again so I guess it's time to go back to my consultant too, if I can get an appointment that is!

Hi, I was diagnosed nearly five years ago. At first the mtx worked really well, then gradually it stopped being so effective. They switched me onto the injectable form and started adding in other meds. I couldn't tolerate hudroxychloroquine or sulfasalazine, both made me feel sick.

I started a biologic treatment a few months ago as my mobility was really starting to decline and my poor wrists were on fire.
I'm on a maintenance dose of steroids but when it gets bad I call my nurse and she prescribed a higher dose for a certain time.

If I were you I'd be on the phone asking your CNS for a meds review

I was in your shoes 7-8 years ago. Then I was moved onto biologics . Started on humira but it lowered my immune system to much and I was sick all the time. Now I'm on cimzia and it's brilliant! Couldn't recommend biologics enough. I live a pet normal life now. I get 3-4 good days, 3-4 ok days and then slowly stiffen up/get a bit more tired until the 14 days mark when I take my next jab. I just feel everything a bit more in the last few days (9-13). My joint deterioration has slowed down too.

I really appreciate all your responses .
I like to go into the consultation with some idea of what to expect.
I do take my methotrexate at the same time each week . I skipped a week at Easter because I had covid but my symptoms were worsening before then so I don't think that's caused my current issue.
I've had the steroid injection before and it did nothing, I felt very well on the prednisone tablets though so hopefully he'll take pity on me and prescribe those again.
This is just crap isn't it ?
The idea that this is just going to be how it is , for the rest of my life .
I'm wallowing now , I'll feel better once I get the ball rolling.
I've phone triage booked with Bupa for Monday morning because it's been over a year since my last consultation so I'm really pushing for them to refer again . I can't even imagine how miserable it must be for those waiting on the nhs.

Biologics

OP - do you have an NHS consultant? I think you're unlikely to get access to better drugs if you're seeing a private rheumatologist. You have to jump through so many hoops to be prescribed a biologic therapy. They're very expensive. Humira is over £700 an injection

Also, with the NHS you'll be given access to a nurse specialist who you can call and ask for advice, and who can prescribe steroids for you. Mine is worth her weight in gold

The way the NHS works, you have to do the drug ladder, with the best, most expensive drugs at the top. You have to prove that the cheaper/older ones have failed before you are allowed the next ones. It is a long, painful and frustrating process. I have several autoimmune conditions, one of them is RA. I have been through the prednisilone (caused osteoporosis, fractures), azathioprine, methotrexate tablets (destroyed my stomach, got a huge H Pylori infection) hydroxychloroquine, now on MXT injections and struggling with the nausea. I am 6 years in and I know I will have to carry on with the injections for at least a year regardless of pain/side effects.
You have an extra problem with private cover, so I would advise you to get into the NHS system asap.
RA is a horrible disease.

The private consultant could refer the OP on to either their own NHS list or that of a colleague - the referral could evidence the failure of previous treatments so she could potentially go straight to biologics, rather than having to start all over again. And there's no reason she can't stay seeing the private consultant until the point of an NHS appointment, thus ensuring there's no gap in care.

I went onto biologics (adalimumab, same as Humira but I’m on a biosimilar/generic version) after mtx stopped working for my psoriatic arthritis. It’s made a world of difference; I hardly think about it day to day as I have have very little pain or stiffness.

As mentioned, it’s expensive - so you prob don’t want to pay for it privately. but, I would still go for private care for your consultation to manage your flare/symptoms if it means being seen quickly. I had all my consultations (diagnosis through mtx treatment to biologics) privately, covered by work medical insurance. However, as that wouldn’t cover my biologic treatment costs, my (private) consultant referred me to her her own NHS clinic to issue the prescription. I now see her for my annual check ups under NHS.

@macaronip1e hi, I know it's a while since you posted this but I've been to the hospital today and the consultant says it's time for Adalimumab 😩. Do you get any side effects with it? I'm a bit nervous although I've been taking MTX for about 4yrs already.

hi @nokidshere ! In my experience you have nothing to worry about. Other than the self-injection - which is a little sore at the time - I have had no side effects whatsoever with adalimumab. Although it can take a little while to kick in, I felt improvement in symptoms within the first couple of weeks and now have far better symptom control (I have psoriatic arthritis) than I ever had when I thought the mtx was working well! I really don’t think about my PsA at all day to day - just sometimes get some aches and pains when I’m busy or tired. Hope it all works well for you.

@macaronip1e ahh that's brilliant thanks 😁 I'm glad you are getting on well with it, I have RA, PA, AS and psoriasis but hopefully I'll be skipping round the block soon.