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Methotrexate

Tara444 profile image
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I have been taking weekly injections of methotrexate. I am wondering if anyone else is experiencing the following side effects: loss of appetite, feeling like I am coming down with the flu but then it passes and returns. This happens a few times a week.

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Tara444 profile image
Tara444
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FamilyHistorian profile image
FamilyHistorian

I’ve not had MTX injections but currently on 20mg and have been for many years and not suffered any adverse reactions. But we are all different

BonesY2K profile image
BonesY2K

hi Tara444

Feeling your pain.

I began my RA journey on 15mg MTX weekly and Hydroxychloroquine daily along with reducing dose of daily prednisone.

All my joints were intensely painful, hands becoming almost unusable. Theoretically MTX was supposed to help in fact as steroid reduced symptoms worsened huge “concrete riding hat” style headache, brain fog, constant weariness, low mood, huge constant mouth ulcers- MRX increased along with over subsequent months until I was taking sub cutaneous MTX @ 25mg.

My hair was falling out, I could barely string words together or spell, mood was so low with constant aching weariness- no life etc. the line that it takes a long time to turn this disease around was used frequently - in the end I called both GP and rheumatoid help line with request for urgent support!! I stopped taking it and with weeks head was clearer, headache disappeared and I had more energy -MTX is not really for me it seems. It does however support the continued effectiveness of biologics.

After a MTX break and a few successful months on Imraldi alone the effectiveness wained. I have since taken between 7.5 and 10mg MTX (with folic acid 6 days a week) alongside a new biologic (plus other meds) .

After a few months my hair had stopped falling out and started to regrow- I have found 10mg or below works for me. Less headache and ulcerating at 7.5mg.

I now have weekly biologic Tocilizumab which seems to be mostly managing inflammation. I also use etoricoxib and paracetamol to manage pain and inflammation. I had to retire early (58) but now can drive again, walk dogs, puppy sit, baby sit grandchild, have new allotment and spent yesterday pruning trees in the garden. Life is out there and I am loving it enthusiastically (with some days/weeks that are more flares) My friend who got it much younger is managing to maintain/ excel in her senior leadership role in education. We are all different but most of us get to a point where life is manageable and enjoyable again.

😏Hang in there but do not stay quiet about side effects. There will be a cocktail that works for you.

Sending huge love and luck to you😘 xx

JenniferBut profile image
JenniferBut

Hi 🤗Mtx can be a bit rough on your body, I felt pretty average when I started. Increase in pain, felt sick on and off etc. I moved to injections and feeling sick stopped pretty much. Remember your RA can also make you feel rubbish at times too. The meds don't always put us in remission I am understanding.

Jen