Starting 10mg methotrexate injections tonight after resisting for 4 years.
I'm now in a bad way with sore fingers, toes heels, elbows and hip. I've been diagnosed with Psa although I've never believed it even though I have seen the elbow enthesitis on a scan.
I've decided if this pain hasn't healed by itself in 4 years it's not likely to so accept my pain is triggered by immune system.
Really nervous about this drug but I don't have any other option. I just hope it works as steroid injections don't anymore.
I'd love to hear any success stories as I've heard a lot of negative stories.
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Cheylann
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Sorry to hear what you’re going through! I’ve been on methotrexate (MTX) injections for nearly a year (with week long holidays following COVID-19 vaccinations), and I’m at that point that I look forward to my injection day. Before starting MTX, I was trying to manage RA pain and inflammation with ibuprofen—a lot of it—and not succeeding. (I can’t take Plaquenil due to retinal issues, and sulfasalazine didn’t seem to help at the dose prescribed.) My rheumatologist raised the dose gradually, and it did take several months before I was at a therapeutic dose and feeling like I could function better. (At the starter dose of 10 mg, MTX wasn’t doing much of anything that I could feel.) As time has passed, I’ve had windows when I feel less restricted in some of my joints. I recently had to stop it following a booster and felt like I’ve been flared up, but I’m injecting MTX again, and it’s starting to improve.
Around November, I started to notice hair thinning—nothing scary but concerning. My dermatologist recommended topical minoxidil, and that (after switching from once/day to twice/day) has helped a lot. My rheumatologist also doubled the folic acid dose I take on non-injection days.
My ability to function in work and life generally were significantly impaired, and I had painful physical changes in my hands. I didn’t want to deteriorate further (permanently), so I was very open to trying MTX. I didn’t know anyone on it and hadn’t heard much about adverse effects. Doctors I trust have also reassured me that the medical community has been able to observe patients taking MTX for many years, so I feel more comfortable knowing that it’s been around for a long time and people have been taking it for a long time.
A medical correspondent (ABC) in the US, Dr. Jen Ashton, likes to remind patients to do a risk-benefit analysis, to ask something like :
What’s the benefit of doing this now?
What’s the risk of doing this now?
What’s the benefit of not doing this now?
What’s the risk of not doing this now?
For me the risk of not taking MTX eclipsed the other questions—I was in a lot of pain, losing more function, and other things weren’t working—and the benefit of taking it has been significant.
I hope that you can find a provider who is patient with your questions and concerns—it’s important that you’re heard and that they’re addressed with compassion.
Thank you so much for your response.I really appreciate you sharing your journey with me and am greatly encouraged by it.
I know 10mg is a very low dose but it's a comfortable dose for me to get my head around.
I'm going to give it a go and like you hope in time I get some relief from all this pain.
I too take large doses of codeine and paracetamol as cannot take ibuprofen. I spend my time icing my joints, rubbing voltarol gel into them and all this does is give slight relief for a short while.
I am at my wits end and suck of living like this s that's the only reason I'm taking this dreaded scary methotrexate.
Sometimes it helps me to think of a new (scary) thing as an experiment that I can stop anytime if it becomes too much in any sense (side effects, stress, whatever). I try to keep in mind that there’s new research happening all the time. (I’m kind of excited about vagus nerve stimulation.) One day at a time, as my gram would say . . . All warm wishes!
vnsdaith.co.uk/ I had a piercing done last Sunday in Manchester (I think they have clinics all over). My head feels loads clearer, and I seem to have increased energy. I would definitely give it a go. Tracy is lovely too, and it only hurt for a few seconds, and nothing since. She knows what she is doing and has ‘proper’ equipment to find the right spot. I would recommend.
I was actually thinking about Setpoint Medical’s experimental implant. Are you saying that you get piercings for vagus nerve stimulation? I’ve heard of tens units for VNS, but I haven’t tried one.
Yep. The piercing itself goes across/ through (?) the vagus nerve. My brain feels awake! Many have it as a migraine treatment; I was hoping it would help with brain-fog. Which it does! I also feel energised. Have to be strict with myself so I don’t overdo things 😂.
Hi, thanks for this info - I didn't know daith piercing for VNS was available. I'm thinking of having this done - could I ask you a couple of questions please - ie does it matter which ear it's done in and did you take your own jewellery or get it at the clinic? Do you think it helps you? Many thanks!
Hi. No, kept my earring on. She does some tests and checks to see which is the best spot. My right ear had the greatest reaction (she uses a detector!) so I had that one done. Everyone is different. It hurt for a few seconds when she put the earring in, and absolutely nothing since. She knows her stuff. Head feels loads clearer. Worth a go x
If you go to the link I posted, see which location is best for you. She’s done loads of research on it, and it’s a medical as much as a cosmetic piercing. If you go to a ‘normal’ piercer it’s rather hit and miss and doesn’t always heal well. She’s a forerunner in this procedure. I would recommend.
I was asked recently about starting mtx but im only 24 and was diagnosed last year with palindromic rheumatism. But my rheumatologist said you cant really drink whilst taking mtx and cannot even think about getting pregnant whilst still on them. I have been taking sulfasalazine for a while now and still suffering with a lot of pain daily. I don't know what to do & feel so alone
I’m so sorry that you’re going through this. Does your rheumatologist understand your concerns? Maybe it would be good to make sure that they do? Sometimes getting a second opinion is also helpful. The impact of a medication decision on a patient’s mental well being is certainly an important consideration. None of us benefit from worry. Can you reach out to your rheumatology clinic to talk things through?
Hi Cheylann! I started my treatment for PsA a little over a year ago. I am currently on Consentyx and methotrexate pills. Don't be afraid of the treatments! Methotrexate has been around for a long time and there is so much information about it. It's nice to wake up one morning and find that your joints don't feel as bad as they used to. Also, there are lots of other options, so if this doesn't work, try something else. You've found a great resource in these lovely people -- I have found that having information from people who have experienced PsA/RA and the treatments have been the most helpful. I hope you have a good start, and relief quickly!
I understand what you mean! I wish there was a blood test to definitely identify PsA, but as you know, there is not -- blood rule out rheumatoid arthritis and gout -- PsA is identified by symptoms. As I researched and read everything I could get my hands on, I started to come to acceptance that PsA was what I had.
I’ve been on mtx for 25 years am fine on it, a bit of nausea at the start but with folic acid that gradually went. I did have to add a biologic a few years ago but I’ve got RA not PsA. 10 mg is a good low starting point with room to increase if needed. It can take a few months to work so persevere with it. 🤞🏻For you.,
Why are you so frightened is it the connection with cancer ? if so that is not really helping you. My friends husband a pharmaceutical Oncologist said to me years ago that the name should be changed as its not been used as a usual treatment in Oncology for many years and when it was it was at 1000 of times the amount given to RA patients. Yes it might not suit you it didn't me so it was changed but it is a gold standard treatment for RA in many countries. Its an old drug but that doesn't mean its a bad one and if it doesn't help then you might qualify for another. Is all you can really do is be open minded and give it a go. Fingers crossed and please try not to worry as that can actually cause you to make matters worse, The way in my view to look at it is that if 10% of people get side effects then 90% don't and even then often they go away as the body gets used to a medication. I really do hope that things improve for you. x
I had seven very successful years on Mtx….. I would’ve been quite happy to continue on it but it just stopped working.I found when I was on 25 mg I took it after dinner at night ….making sure I had had plenty of water to drink during the day…….and I had no trouble at all.
Also took Folic Acid every day except Mtx day.
I knew nothing about it when I started taking it…& I’m sure that 50% of people who do feel nauseous & unwell when they start taking it….is because they are expecting to.
So try to find something to take your mind off it tomorrow morning…don’t just sit there waiting to feel rotten.
Fingers crossed you are one of the lucky ones & that it really helps you.
Another fan of Methotrexate here. I started on 15mg tablets back in 2019 and am currently on 20mg Metoject. No problems apart from a "hangover" - tiredness and a bit fuzzy-headed - the next day. It's been great for my joints (along with other DMARDS) and I really missed it when I paused it for 3 weeks recently - couldn't wait to resume it.
I describe it as my best friend. I’ve been on it for 11 years now and it’s given me my life back. I went from being in permanent 24/7 pain to none! A few small issues getting used to it, but nothing serious.
I hope it does the same for you, so well done having the courage to start.
(A small negative is if the disease has caused physical damage in last 4 years, then MTX can’t change that and remove that type of pain. Hopefully your pain is due to inflammatiom, which will vanish.
Thank you. I have lots of inflammation seen on scan and change in my feet.Well, no going back now. Took my first injection last night. So far so good. I am tired but that is because I'm continually woken up due to throbbing in my elbows.
Morning. Mtx will take a few months to ‘kick in’. I take Amitriptyline now (7pm) which helps me sleep more soundly and does help with pain. No other pain relief ever worked for me. I have paracetamol on standby if I need any extra, but if I get pain now it is usually because I have done too much. ‘Rest and pace’ needs to be your mantra; this is not a battle you can win x
Btw, I have been taking Mtx for 11 years. Started on 10mg and worked my way up to 25mg over several years. Have been on 25mg for 6 years now. I did try the injections for a while but they freaked me out and made me really poorly, so stick with the tablets. We are all different!
Make sure you take Mtx with a ‘big’ meal. Also I take cyclizine about an hour before (anti-sickness). I also take folic acid every day except Mtx day. Good luck.
Just remember NOT to take folic on your Mtx day. I would also give Amitriptyline a go. It took a while but now I am pain free 🎉. Stress was the trigger for me I think ☹️.
Going to try the amytriptelene. Need to get a new prescription. I'm scared it makes me too tired but have heard it's good.Yes patience is key but I no longer have a choice. Praying this mtx works.
Amitriptyline made me very sleepy and I couldn't tolerate it but then my doctor suggested starting at a low dose and increasing it after a while and it made such a difference and has made a big difference to my neck pain. Give it a go, you won't know what it can do for you unless you give it a go 😊
Be prepared, you may have to try different times of taking your amitriptyline. I did with my evening (higher) dose, too early & I fell asleep in the chair, too late & I could hardly get into bed. My morning dose is half my evening dose & thankfully I got that right first time. I do hope it helps you as well as it does me, with the added bonus of a restful & restorative sleep.
I suppose it depends on need, & I need the relief during the day too. I take 25mg morning & 50mg evening. I started at 10mg evening & 5mg morning, the dose was increased each month until the most beneficial found. It's quite normal to start on the 10mg evening dose you've been prescribed.
That sounds a high dose. Doc prescribed 10mgs this morning and said there is evidence at low doses it works for joint pain for some people however it's an anti depressant.I'll give it a go.
Yes, it's a repurposed med, originally developed as an anti-depressant. For neuropathic issues, the reason I’m taking it, doses are up to 75mg daily, the dose I take, but with care 100mg can be prescribed, if it's needed. Initially though 10 to 25mg is suggested.
From experience you need to try out a few times, I think it's an individual thing, what's right for one isn't necessarily right for another. When I first started it I took it at 8pm, with my other meds I take with my evening meal, but it was too early & I was asleep in the chair well before bedtime. It took a few goes to find my best time.
You may have sorted it now Cheylann but the folic acid dose we take, 5mg, is only available on prescription. I think he'll only find 400µg, so you'd need to take 12 for the equivalent dose, or thereabouts (1mg=1000µg).
It's intention is to resolve side effects. I started on just one the day after MTX, that was increased to the day before as well when I had some hair thinning following an increased dose of MTX. My previous Rheumy preferred all her MTX patient to take it 6 days.
Hi. I am a success story. I have been on methotrexate for 20 years this year. I was started on mxt tablets, I can't remember the strength, and hydroxychloroquine sulphate. The strength of mxt had to be changed along the way and eventually I dropped off the hydroxy. I was on 20mg mxt and was changed to injections at some point, then after several years I went back to tablets. I have been on mxt 17.5mgs for at least 8 years now and apart from the occassional flares I live a 'normal' life and can manage most things, although my husband does most of the housework. Bless him. I have never experienced a moment of nausea with mxt during my 20 years on it. I hope you have a similar experience to me and your life is changed for the better. Wishing you all the best.
Thank you so much. Your story encourages me so much.I took my first injection last night. So far so good. No side effects I'm just tired but that's to do with continually being woken up with throbbing elbows.
I've been terrified as never quite believed my pain was triggered by my immune system as my bloods are always normal.
Another long- time MXT user here (9 years). I’m a big fan.It changed my life for the better. I had nausea, slight hair loss etc to start with but I stuck with it and everything is fine.
At one point I was on 22.5mg. I had Benepali added to my cocktail of meds, which had helped and is allowing me to reduce my MXT. I’m currently on 15mg and have a plan with my Rheumy to reduce this in the next month or so.
I tried reducing without Benepali initially but had to increase again as my RA was not controlled. I had forgotten how bad it was pre MXT!
Give it a good try, it will take months to settle but it’s well worth it! X
This is all encouraging, thank you. I’m on just Salazapyrin now and doing ok, I think - until the next flare. Now I’ve added RA to my AS, and at my age, I’m more worried about the future and getting much worse. The Rheumatologist has said it’s time for a biologic so maybe she’s right.
Hi Cheylann! Snap I had my first MTX 10 mg injection at 6 last night. I was scared too but hubby did it for me. Didn’t feel it until a couple of minutes after he’d done it the. Just a bit of a sting for 5 minutes. How are you feeling today? I woke up feeling like I’d drank a bottle of scotch! Throbbing head and I was also coughing and felt bunged up a lot so I took an antihistamine and the coughing stopped and blocked up nose has gone. ( I suffer from a lot of allergies so tried this first as May not have been the jab at all I guess.) 10.00am now and I’m not too bad at the mo. Slight headache, slight sickly feeling, tired but not too bad. Let me know how you are please we can compare as newbies 🥰 xx
Well I have to say I haven't had any effects I can blame on the injection. I'm very tired but that is because I wake up continuously throughout the night due to the throbbing in my elbows.
We need to stay in touch and compare notes. It will be interesting to see how the mtx affects us and when if any improvement takes place.
Wow that’s good to hear! Yes I sent you a private message so we can keep in touch. I had a steroid injection on Friday too so could be why I’m a bit rough as well with having the MTX jab the next day.
Hi CheylannHow you doing? I’m not too bad, got a bit of a sickly tummy but not as bad as on the tablets, had a little bit of acid yesterday but it cleared by lunchtime so that’s better than before.
Today I had a flashing zigzags in my right eye. I had this about a month ago but didn’t write it down so I’m unsure if it’s the MTX or not. I know it was around the time I last took tablets. So I’m going to log every day and compare after next weeks jab. All in all though much better for me than tablets.
Hello,I thought my tiredness was caused from all the pain I had been in but when this fuzzy feeling in my head continued until Tuesday, realised it must be a side effect. Felt like a zombie, not exhausted but almost out of myself.
I've had a few waves of nausea but it's bearable.
On Tuesday they gave me a steroid injection which is starting to help. My pain is getting less and the stiffness has gone.
I've never been on tablets so mtx is totally new to me.
I'm sure those floaters in your eye are from the drug.
Did you take folic acid? If so how much?
If this is all the side effects I'm going to get then I think it's bearable and I'm praying these injections work for this awful joint pain. However, the nurse did say 10mg is a very low dose. I guess patience is key.
Let me know how you get on and also what condition you suffer and where your pain is. It's really interesting to hear what others are going through.
Hi. I have RA and osteoarthritis and degenerative disc disease. My fingers get swollen and painful and stiff. My feet pain me too. Knee pain , hip pain, back pain. Easier for me to list what doesn’t hurt lol.After my MTX jab on Saturday I had 5mg folic acid on Monday as told and then again on Tuesday as I felt so sick. I’ve felt very tired, that’s been building up over the week. This morning I wasn’t too bad but had my 3 year old granddaughter as usual from 12 today. We both slept for 40 minutes at half 1. She’s no problem, very good little girl. But at 4.pm I just crashed! All energy gone, just wanted to go to bed.
So I really don’t know if this is the injection or the RA. Only way I’ll know is to have the other 10mg jab on Saturday and see how I am next week. My body doesn’t like a lot of medication I’ve had over the years 🤦♀️ Im allergic to a lot of stuff, my mm was the same.
Im due to go up to 15mg a week Saturday.
I hope you continue to be ok on the MTX and it helps you. Keep in touch 😊
I'm very tired too but then I'm always tired as don't sleep well as wake up continuously so don't know if tiredness is mtx or the lack of sleep. I just push on through the tiredness sometimes to my detriment. I've never been one to pace myself and hate resting. So, guess I'm the worst erso to have this condition as in the end I cause myself pain from doing too much. However, I did have that very strange fuzzy feeling in head for 3 days which was definitely the mtx. I haven't been told to increase my mtx. Guess they want to check that I tolerate it first.
As everyone says 10mgs is a low dose, I'm worried it's not going to work. Time will tell.
I've been on MTX for four years now, currently on 15mg dose by injection. It works really well for me. I was in a terrible state when I went on it with swollen feet, ankles, hands and knees. I now have no swelling and minimal pain in my knees (which I think is osteoarthritis/wear and tear which MTX wouldn't help with anyway). It is a bit scary when you read the leaflet - it's a strong drug and you have to be a bit careful with things like alcohol and immunity, but I would highly recommend it. My first time in rheum clinic I spoke with a lady in her 80s who had been on it 20+ years and it was her that encouraged me to try it. She could see what a state I was in at the time. I'm eternally grateful to her for her encouragement.
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