Flare up after stopping MTX

Escoufle

Hello, After 7 years in virtual remission, no symptoms, I tailored my MTX down to 7.5mg and was told I could safely stop and monitor how things went. I stopped in November, all fine to begin with. By early March I had CRP of 25 and beginnings of pain in my thighs (front /back) and upper arms. I have tried managing pain with paracetamol (doesn’t help); with nurofen (helps a bit but it’s a risk because I have o take RIvaroxaban). A short 4 day course of steroids to block pain while we drove to South of France gave welcome relief but once I stopped, pains came back, now affecting hands too. It’s reallly painful to sit or stand up, get down onto mat for pilates. I can still do most movements, but less fully, and I have to push through the pain. Is it Isley that a week or so of Nurofen twice daily could ease the flare up (CRP last week was 18, with no pain meds) or should I be thinking of resuming MTX ? I can’t contact my rheumatologist as I am out of UK until September - or rather, I can email her on her university email but she can’t reply, and communication through the dedicated RA nurse is hit and miss.

PJoanne

Hello @Escoufle

Sorry to hear you are in a flare up and are in pain.

We are not able to give medical advice about starting or stopping medications, and it's worth noting that everyone responds differently to medications as well, especailly if you are aware of a potential risk due to other medications.

It's really best if you do persist in seeking advice from your rheumy team or find a way to be in contact with your rheumatologist that works.

Hope you feel better soon.

all the best Joanne

helpline_team

Hello @Escoufle

Thank you for your posting. I am sorry to hear that you are experiencing more pain after tailoring down and stopping your methotrexate. As Joanne has already advised in her posting to you we are not medically trained and cannot advise on whether you should be resuming methotrexate, this is a disease-modifying anti-rheumatic drugs (DMARDs) and treats the underlying cause of your condition and reduces inflammation and this is certainly a conversation you should be having with your health care professionals. I understand it can be difficult to get through to the rheumatology team but this is the correct place to get advise on your medication.

If you are not able to get through to them then you could try contacting the Patient Advice and Liaison service (PALS) at your hospital. They provide a point of contact for patients and can help you with health-related questions and resolve concerns or problems when you're using the NHS. I have put a link below where you can check the contact details for PALS at your hospital. I hope this is helpful. I have also put links below to our information on Rheumatoid Arthritis and methotrexate which I hope are helpful to you.

https://www.nhs.uk/nhs-services/hospitals/what-is-pals-patient-advice-and-liaison-service/

https://www.versusarthritis.org/about-arthritis/treatments/drugs/methotrexate/

Kind Regards

Dawn, Helpline Advisor

Escoufle

thankyou to Joanne and Dawn, I was just hoping someone might have experienced the same thing and share their decision. MY husband is retired consultant oncologist, and I did consult my rheumatologist before travelling, on what to do if a flare up persists, so I have advice and I have meds. I was just curious about the experience of others. I will have a look at PALS. 👍️

jamieA

Hi @Escoufle

I know we are all different so my experience may not be of much use to you. I have psoriatic arthritis and take sulfasalazine, methotrexate and the adalimumab biosimilar Amgevita. In 2023 I asked my consultant if I could reduce my drug intake and she reluctantly agreed to reduce my sulfasalazine from 3gms per day to 2gms. I subsequently had a flare about 4 weeks after the reduction and was put back up to 3gms per day with a knowing 'I told you so' from my consultant. During the last two and a half months I've had firstly an upper respiratory tract infection immediately followed by a gum infection/tooth extraction and then a throat infection - all requiring antibiotics. That's meant I've had to come off both MTX and adalimumab for much of that time - though not sulfasalazine - and have been going through an extended flare. My CRP was measured at 23 when under drug control it's usually less than 1 - but that may be due to infection rather than inflammation. What appears to happen with me is that it takes about a month after the reduction in medication before I have a flare. Hopefully since I've just restarted my MTX and Amgevita in a months time I'll be stable again - though I have to come off MTX again next week as I'm having my covid vaccination. I must admit I try to avoid taking opiods as it leaves me with a severe case of constipation.

I hope your situation resolves soon.

Arthuritis

@jamieA Hope you feel better soon. I have found a tablespoon of extra virgin olive oil with each meal avoids the nasty constipation (which also occurs with dairy products as during digestion they form opioids, hence the satisfying feeling of cheese!). Salads also seem to cause constipation without olive oil.

Arthuritis

@Escoufle I have been through a similar event, although my remission was no drugs, no remission but paying very close attention to what you should not eat, ie, that tingly feeling sometimes hours after a bite of something not allowed without MTX should be paid attention to.

You cannot drop the MTX immune suppression without having to give up certain food items that stimulate flares.

These links might give you a better understanding,

ZOE podcast

leaky gut UCL research

Lily, Austrian, autoimmune sufferer who got off drugs and into remission after paying attention to what foods were triggering her autoimmune and that the drugs were suppressing that trigger. Can’t continue eating trigger foods if you are off the meds. My own experience was similar with that trade off.

https://youtu.be/IInW8hp9Ybg

fred890

Thanks for sharing, Escoufle, it’s so helpful to hear experiences like yours, especially for those of us thinking about reducing meds. What you describe lines up with what many have seen: the meds suppress the immune activity, but if the underlying triggers (whether food, stress, infections, etc.) are still active, flares can sneak back in. Your CRP trend definitely sounds like early warning signs. If you're carrying your meds and have some level of prior plan from your rheumy, it might be worth easing back in sooner than later, especially to avoid the flare escalating. Wishing you a quick path back to stability.

Arthuritis

@Escoufle It seems I made a typo in my post above and can’t edit to correct it.

” I have been through a similar event, although my remission was no drugs, no remission but paying very close attention to what…”

should read

 I have been through a similar event, although my remission was no drugs, no symptoms and no RA activity as checked by hospital imaging, but paying very close attention to what…

@fred890 Has good advice on taking MTX before you have a raging flare that might take months to calm down. What you eat really matters, so ticking down MTX also means removing trigger foods that require MTX to suppress the immune response (flare).