Good morning ! Am about to start on 15mgs of Methotrexate ( rising to 20mgs after 2 weeks ) this is for Rheumatoid Arthritis . I’ve been on pred for PMR since March 2020 - started on 20mgs , now on 5mgs and have been told by my consultant to carry on at 5mgs . Any advice from those who have/are taking Methotrexate please 😊
Methotrexate : Good morning ! Am about to start on... - PMRGCAuk
Methotrexate
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Geordieland
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DorsetLadyPMRGCAuk volunteer
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Good luck with MTX and RA
Morning Geordieland I’m fairly new to Methotrexate- started on 15mg August 1st this year after 6 years just on prednisolone for PMR now seronegative inflammatory arthritis.So far I’m really happy trying MTX - down to 2mg Pred daily (like you on 5mg Pred for a bit) and no aches at all! Had some nausea and mouth a little sore after about 3 weeks but folic acid then increased from 5mg once a week to 6 days each week- not on MTX day which helped with that. Was a bit concerned as hair seemed to be falling out much more - that has settled down in last few weeks- started taking biotin about 6 weeks ago.
No advice but I would say give it a go , I was very loath to take it however atm I’m really pleased. I know my PMR and/or inflammatory arthritis seems to fluctuate for no apparent reason so may just be having a lull anyway. Taking the MTX with food and drinking plenty of water seems the main thing. Strangely l haven’t suffered from fatigue, seems everyone is different. At least you can stop it immediately if it doesn’t suit.
Wishing you all the best.
Thank you so much for your reply ! So much bad press for methotrexate but my arthritis is really painful so I’m going to give it a go 👍
I was very upset at the thought of taking it, MrsNails with her information was a godsend as were all the other contributors.I managed very well with tiny doses of Pred only until last year when things seem to shift for the worse. The health unlocked nras forum is very good for support and advice too if you haven’t already gone there.
Hope all goes well.
🤞🤞🤞 will report back after a few weeks 👍
Methotextrate is the gold standard treatment for RA.
I notice your avatar refers to my neck of the woods - do you live here or had to emigrate to another part of the world?
No , sadly moved to the south east after teacher training - been a soft southerner for 47 years 😩 ! My sister still lives in the Northeast tho so I get my fix whenever I can 👏👏
Morning - l’m on MTX - now at 25mg by injection plus 6days of Folic Acid - l would say now it’s totally unremarkable re Side Effects & l’ve got down from 15mg Pred to 10mg since the Summer. When l was on tablets l always took them after lunch & choose a day that suited me & kept the following day ‘free’ so if l was tired l had no commitments.
Drink plenty of water & Good Luck 🍀
MrsN
If you have any questions - just ask….
Thank you 👍 just the sort of reply I needed to put my mind at rest ! My PMR seems to be manageable at 5mgs but my RA definitely isn’t so I feel I need the methotrexate to help me out . Have chosen my day - I take my alendronic on a Thursday so have chosen a Monday to spread the “ joy “ through the week ☺️ Love this site and thanks again for the advice !
Do you have Osteoporosis and were put on AA after a Dexa scan?
Hi ☺️ Yes I have osteoporosis as well as a slight curvature of the spine and some spondylitis - lucky girl 😜
My appointment to start MTX is on the10th January - do you think I should delay it for a little while. My younger sister’s funeral is on the 6th January. I feel not too bad but shocked as was unexpected. Don’t know why the font changed!
Oh Terri so sorry about your Sister (RIP) how awful for you. You can always ring & ask them to push it on a bit or is that just the planned date etc
Once Again - so very sorry about your sister.
Hugs
Angela xx
Thank you Angela. I wasn’t keen anyway so can’t help thinking I’m using it as an excuse. I’ll keep the appointment if I feel okay and perhaps delay the start of taking MTX. Will I be given a dose there and then - I get the impression you can plan when to take it.
Thank you once again once again for your kindness.
I was reading DL’s post how disabled people get treated re benefits. My Sister wasn’t a pushy person by any means and wouldn’t ask for anything, plus they didn’t need it. Eventually, after encouraging her, she applied for a Blue Badge. as she genuinely needed that help. They refused her first time and the second time nearly a year later, they insisted she go for an assessment. Ironically the assessment is the day of her funeral.
How you’re feeling okay. 🌺
Terri x
Oh Terri that’s so very sad about the Blue Badge - honestly it makes your blood boil when that was really all she wanted……
Is it an appointment with the Nurse? Are you having Tablets or Injections?
Have you had your Baseline Bloods & Chest X-Ray done?
I think it is - have to go to another hospital where I don’t see Dr Mackie. Got the impression it was a specialist nurse clinic. Doctor says she wants to start me on tablets before the injections, due to my sensitivities to meds, and build up. I was nervous about it before recent events.
No Baseline bloods taken or chest x-ray - although did have a chest x-ray recently that GP requested. Think I’ll go with the flow if I can. It’ll be the finality after the funeral that will hit home.
🌺
Much the same for me - I applied for attendance allowance in 2020 and they arrived to assess my husband on a good day and listened to him about what he could do alone! Mostly fiction ... Then told me I should encourage him to drive the car so he "kept his independence"! Apart from the fact he couldn't get to and in and out of the car alone, he wasn't strong enough to turn the wheel and he couldn't walk anywhere at the time. I went through the performance again this year - and they rang to arrange the assessment one Monday for the following week. I said they were welcome - if he was still alive. He died on the Friday late afternoon - and we got up early on the Tuesday for them arriving, it had been a BH weekend so other than the online death notification no-one had been told but they must read the site. They didn't even phone to tell us they weren't coming. I was not a happy bunny,
So sorry to hear all of that. Unfortunately it happens and even worse keeps happening. What an insult - disgraceful treatment. So sorry.
So sorry to hear about your sister, Terrie. How long had she been ill?
So many unbelievable things happen these days - people wait so long that they are nearly dead anyway before they get the necessary help.
Thank you Constance. My sister had a lung illness that would get her eventually but she showed no sign of anything happening that did. She started with a cold a month ago that she couldn’t shake off. Couldn’t wait to come and see the house but kept away with her ‘germs’. Tried to get a drs appointment- told to get a covid test and take paracetamol! Taken into hospital a week later with breathing difficulties - oxygen levels too low to treat lung infection - pneumonia next - found clots - gone within 4 days. They put a DNR on her - she knew what was happening and asked to see me - that has helped me a lot, she died of a lung illness and clots. 🌺
😕👎
Imagine it had been you who needed help! Your OH could never have coped. It doesn't bare thinking about.
Would have been chaos Constance. The boys do pull round when needed but it’s short term. 🌺
Sorry to hear about your sister - sure it won’t be a problem to delay MTX in circumstances.
Thank you DL. I just feel shellshocked at the moment. 🌺
Yes I’m sure you are…my thought are with you.🌸 and all your family.
Thank you for your kindness. 🌺 All happened too quickly.
Sometimes it does, I lost my sister a couple of years ago, she wasn’t in the best of health, but it was arthritis - not anything life threatening. So yes it is shock.
Sorry you lost your sister too. 🌺
So sorry - awful time of year to deal with it all too. I'd be waiting to try something new, too complicated to decide what might be due to what.
Thank you Pro, There’s never a good time, as you know, so might see how long a wait it will be if I cancel. I thought you could decide when to take it so was going to keep the appointment if that was the case. Or should I delay it by a month say? I’m all over the place really. Thanks for you’re input. Hope you’re okay. 🌺
I'd go to the appointment - I've had a couple recently and more to come and to be honest, it has helped, both ways round. They have been very kind and considerate about the effect his death has had on me medically, and that makes me feel better about having a whinge, if you see what I mean.
I do agree. I don’t give in easily but sometimes you need those treating you to know how you’re feeling. After all you still have it to face. It’s harder for you. Especially on your own and the time of year. Will be thinking of you for sure. 🌺
Good to get it all planned - l still have a reminder on my phone for my MTX Let us know how you get on 🍀
I found MTX quite helpful. I started taking it as I couldn’t taper past 17 mgs of Pred. I’m sure your Rheumy is checking your bloods every two months, this is necessary to check if the MTX is affecting your liver. You’ll also need a high dose (5 mgs) Folic Acid tablet every day although not taken on the same day as the MTX. If you find it’s making you really tired, take it last thing at night, I found that helps. Apart from the tiredness, the only other side effect I had was some hair loss, but that settled down after a few months.
I’ve just come off it now and I’m down to 1.5mgs Pred. It’s taking a few years to get here but I’m hopeful the end is in sight.
I know some people have a lot more side effects and I’ve been lucky. Wishing you all the best, hope it helps you.
Thanks for your reply 👍 the more info I have the better 😊
I've been taking MTX for 4 years. The only advice I'd give is to take it at night close to bedtime, because I found that it knocked me out with fatigue if I took it during the day. I set my alarm for 10.30 p.m. to remind me.
Thought I might take it after my evening meal 👍
I am on 7.5 mg MTX pills. The first week it really wiped me out. I slept all week. It got better from there. Now it's just another few pills to swallow once per week. As for helping, I can't really tell much difference. Good luck.
Thank you 😊 will report back after a few weeks 🤞
I was given MTX to balance Pred a few months ago when I had a GCA double vision flare…the main thing I noticed was that my steroid weakness/ wobbly limbs reaction to the drugs got more so. Obviously it’s for a different condition. (Currently 10mgs a week, 8 mg Pred)
Thank you - it seems it really is “ how long is a piece of string” so many different reactions for different conditions ! Watch this space 🤞
That was probably because MTX potentiates ALL pred effects, not just the good ones! It was what happened to me, things appeared that are always ascribed to pred but which I had never experienced before: muscle and joint aches , constant hunger and weight gain, bruising got worse, the fatigue was unbelievable by week three. And my hair fell out in clumps right from the start!
Oh blimey - yes I forgot the hair thinning, that too... luckily I had a lot to start with. Oh it's all a joy, isnt it. (The weight gain just seem to go on and on...I try cutting the carbs but I stress, I am only human...)
I have been taking methotrexate for RA since 2004. I take 17.5 mg once a week. I take it right before bedtime. According to my rheumatologist, this is so I will be asleep and not be bothered by any side effects, like slight headache or nausea. I take 2 mg. of folic acid every day, 1mg. morning and 1 mg. evening, to protect against stomach irritation. My RA has been very well-controlled with the methotrexate, and I have not had any serious side effects. When I began taking it, I noticed some hair shedding, but that stopped. I have blood tests every three months, for sed rate, liver enzymes, and CRP, and they have been normal until I got PMR two months ago, when CRP was high. My rheumatologist advised me to stop the methotrexate when I have had a cold or sinus infection that persists. Because it suppresses the immune system, it can delay recovery from infections. I have held off on it for a few weeks several times over the years, and restarted with no problems. For me it has been excellent. Good luck.
For RA as it does for about a third of patients and that is why it is the first line approach for RA - but obviously hasn't had much effect for the PMR has it? And that is my beef with it - there is as yet no study that shows it has a beneficial effect in PMR or GCA. Prof Dasgupta, founder member of PMRGCAuk and a world-renowned name in the GCA field, is of the opinion it has no role in the management of GCA. It might work for one of the versions of PMR - I'm far from convinced about the others.
Thank you ! That’s really useful to know 😊 the more info I have the less apprehensive I am about taking it - All the best with the PMR
I have no problems with it,I'm sure their is but I don't look for the negatives.
👍👍 good attitude
Thank you, Geordieland
I was the same, very anxious about it, but it have been on it for 9 weeks now and feel great, haven’t started reducing yet. But so far it’s made a big difference to how I feel and back to working full time at the moment.
I am so very sorry for the loss of your sister. I lost my son this year and the pain is almost unbearable at times. PMR and RA on top of everything else is hard to get through. I wish you the best going forward. Let us know how the MTX works out for you. 🌹
Hey, i understand your fear, i was extremely concerned but read so many good outcomes on this feed. I started methotrexate 2 months ago and have had no serious side effects. I do take folic acid 7x a week. Only thing ive noticed is my hair falling out but a small price if i can feel better. I have inflammatory arthritis from my covid vaccine, tapering off prednisone down to 2 .5 mg. Also on hydroxychloroquine. Give it a try and see how you respond. Eat a good meal and take it at night. Good luck!!!
Thank you 😊
Hey! So I started on 15mg Methotrexate in March with 5mg of Folic either side of my Meth day for RA. Felt a little woozy for the first couple of weeks but that soon wore off as I got used to it. Have to say it’s been an absolute god send to me. Before taking it I could barely walk, since taking it, I can now go back out on walks and almost running again (shoes dependent of course) I can’t recommend it enough! Hope your first couple of weeks have gone well!??
Thank you ! Have taken my second dose today and have been feeling a bit like I’ve got seasickness - nothing too bad tho 👍 Will definitely give it a good go tho as would love to lose the AR pain 😊👍
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