Hi everyone. Anyone on here who has been prescribed methotrexate. I’ve been on hydroxychloroquine for 10 years now. Last year I had a flare up when we had the 2 really hot 🥵 days. After ringing my own drs who told me to use antihistamine cream, medication, cool showers etc, which I’d already done, also sent photos of the rash which she couldn’t see properly and to see how I went. Over the weekend I’d had enough itching and scratching that I rang out of hours who prescribed me a 5 day course of steroids which really helped. No more problems as such until just before Easter this year and I had another flare up. Saw my dr this time as I had to go for something else. I showed him rash on arms and he said it looked like I’d an allergic reaction to something. I asked if it could be a flare up of lupus, again gave me about 3 weeks course of steroids and looked on my records. Hadn’t seen anyone since May 19th last year at hospital so he advised me to ring them. Had an appointment this Thursday 15th gone. I was having a flare up too with the heat although I use sunscreen, hat, and uv cardigan too. Also a uv umbrella ☂️ too.
Dr has prescribed me methotrexate starting tomorrow Monday, just one day a week. Still to carry on with hydroxychloroquine. Also folic acid for 6 days a week, so don’t take on the day I take methotrexate. I’ve also a course of 4 weeks of steroids.
just wondering is there anyone here on methotrexate and how has it affected anyone.
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elizabeth-57
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I have been on Methotrexate for years and it is my life saver. Controls my Lupus really well with no side effects. It doesn't work for everyone but it's got to be worth a try.
I switched to methotrexate last October from mycophenolate and it’s been a lifesaver. Really helps control my joint pain. No issues. I’m on 20mg once per week and folic acid the other six days.
Hello Elizabeth-57. I’ve been taking Hydroxychloroquine for a while now and had a bad flare up and my GP wanted to put me on Methotrexate as well. After seeing my Renal Consultant, he said he has never mixed the two together as they don’t know what the effects are wouldn’t recommend doing it.
I inject 15mg methotrexate each week and although it makes me feel a little off the day after it works really well for me. I certainly recommend giving it a try and see how you do. I recommend having a nice dinner so you aren't taking the tablets on an empty stomach and try to drink plenty of water. I hope it works well for you. Just give it a chance to work and your doctor can make tweaks if needed.
I'm on Methotrexate and have been since 2019. I was started on a low dose..12.5mgs n I've gradually increased over time. I am now taking 17.5mgs weekly n have recently switched to injectable form. When I first started the tablets I did have mild side effects for about 24hrs..bit of nausea, slight headache n slight visual disturbance. That only happened on the first dose though n I've been fine ever since.Like others have said it's been a game changer for me. It's really helped to control my rashes which were a constant before despite me being on another immunosuppressant at the time (cyclosporin which didn't agree with me at all) . I would certainly recommend it n I hope that it suits you n you can get some quality of life back .
I take folic acid too six days per week. Good luck 💜🌈xx
I took methotrexate for about 10 years. Switched to mycophenolate now as it stopped working.Methotrexate really helped. I absolutely could not drink alcohol while I took it though as it made my liver function tests go crazy.
Hi, I have been on a methotrexate 20mg, Hydroxychloroquine and steroids for years. I couldn’t handle the tablets but injections have been a complete game changer for me!
Hello, I take 12:5mg methotrexate weekly, I always take it after food with plenty water and before bed time. For the first couple weeks the day after taking it I felt yucky but that passed and I now function reasonable well. Good luck
I also have had bad skin flares and find the only thing that controls those is Prednisolone at varying levels depending upon whether we catch the rash early enough. I also take hydroxychloroquine and have taken methotrexate until last year when I had a sudden big drop in kidney function. So methotrexate was stopped and replaced with Azathioprine. I'm not sure whether I've had reactions because of the symptoms I get anyway. However, I have been happily taking Azathioprine for a year now but that didn't stop my rash starting on my forehead around March time. So I promptly upped my daily Prednisolone dose and asked for an early appointment with my dermatologist who sanctioned dosage, within reason, and will see me more regularly if I feel the need. If you haven't yet seen a dermatologist I would ask for a referral and have access to that specialist care. Lupus rashes can scar.
Hi, steroids together with mtx is a game changer on a positive note! But…… many experience hair loss and thinning hair. Not bald patches but definitely a change! Lots of hair on pillow, floor, shower plug hole etc. Folic acid also helps with the hair loss so it’s important to take it! Its a balance. Illness or some hair loss. No brainier!!
I was on methotrexate for several years, taking only 1 time a week also. The first of this year I had to come off of it. It had started to effect my kidney function.
I’d just like to say thank you to everyone who replied to my post. Your responses have helped me. Took my first dose of 15mg methotrexate this evening with my tea. Next Monday is my second dose, then the following Monday if everything is ok I go to 20mg. Start the folic acid tomorrow morning for 6 days. I will be having blood tests at my drs every 2 weeks for 6 weeks, then every 3 months. I have also a telephone consultation on 3rd of August with rheumatology nurse to see how things are. Fingers crossed 🤞 it all works for me.
In the 10 years I’ve been diagnosed with lupus, this is the worst flare up I’ve had. Haven’t been able to sleep properly for a week now with the itching I’ve suffered and the hotness I feel with it. I did ask the dr last week at the hospital if the hydroxychloroquine wasn’t now working as well as it did in the beginning and he said it could be. I’ve to still take hydroxychloroquine everyday as well as the methotrexate.
I haven’t messaged you all individually, so once thank you everyone for all your lovely advice and for taking the time to message me, it is so much appreciated.
I was started on methotrexate when I was 14 but it made me feel sick constantly so I asked to stop, my mum had I similar problem but kept eating them as it kept her rheumatoid arthritis at bay. 💊Cause the meds are very strong you will have to have blood tests monthly I think before they can give you more meds. That's all I can tell you don't know if it much but hope you stay well and healthy ❤️🧡💛💚💙💜
Hi Elizabeth. I was diagnosed with Lupus SLE almost a year ago. I was put on Hydroxy like you and I had light skin colored rashes all over both arms. I got pretty good at managing the "itching attacks" and was going to stick with it because my joints and body felt better than it had in a few years. I carried ice packs around and even stuck my itching arm out the car window riding down the road. Lol. However, after about 6 months, it was winter and I was outside. It was overcast and I was wearing tons of sunblock and a hat. The next morning my face, mostly eyes, were so swollen. My rheumy told me I was having side effects from the hydroxy (and not an allergic reaction), which I've learned is different. He took me off Hydroxy and put me on methotrexate and I've been on that for 12 weeks now. All skin issues have cleared up but I'm hoping the joints and body get better soon. I miss the good feeling of Hydroxy but sure don't miss the itching and eye swelling. I am still not convinced the Mtx will help, as I haven't noticed any joint improvement yet, but maybe I'm expecting too much too soon. I wish you luck with your medication adventure. It's amazing to read the different paths so many people take. It's like menopause - there's no handbook!
Thank you for your reply. I’ve now been on methotrexate for 3 weeks. I take the dose on a Monday so today has been the 3rd week, I’m also on a 6 week course of steroids. Itching and rash has calmed down a lot, although am extremely tired and possibly I’m still catching up on the sleep I lost through the flare up I’ve recently had. I’ve not noticed any improvement yet either with joints and muscle pain.
You’re right it is like the menopause ……. doesn’t come with no handbook! It’s a case of learning to live with it!
Who is your rheumatologist if you don’t mind me asking? I attend Chapel Allerton rheumatology department. I’d love to meet up with others who live in my area for a coffee, chat and support too.
Wish I could meet up with u but I'm in South Carolina in the US. This sure is a club none of us wanted to join but it is comforting not being in this alone! Here 4 u!
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