Hi everyone, I was shocked to hear I had to start on Methotrexate today. I know all the negatives but would like to know from other Lupies what your symptoms were before taking it and how has your health improved since taking it. Also it would be helpfull to know how long you have been on it and how long it took to work.

Many thanks my luppie friends.

30 Replies

  • Hi.

    i was diagnosed with SLE lupus in may.. i started methotrexate in July. (20 mg)

    I had swelling on my hands and feet and a lot of pain. Also marks on my hand.

    The swelling has completely gone and pain has slightly reduced. . Generally i feel better however as you can understand, with lupus one can never feel better. .

    It started working after 2-3 months

    I hope you feel better


  • Hi Pearl 123,

    Thanks for your comments it helps to hear form you.

  • Hi Friendly2013

    I was diagnosed in 2100 July. I was put on methotrexate in November due to joint pain and my bloods were all over the place. I was on steroids at the same time because of the pain but since stopping the steroids methotrexate has kept me mostly on the level. My bloods are almost normal my joints only hurt if I flare or don't rest enough. I seen to have been lucky, I don't seem to get too many symptoms other people get. I'm also of the opinion that if it makes me better I will put up with the symptoms. It's completely up to you, but it works for me.


  • Hi Moira,

    Thanks for the reply it's good to hear something positive.


  • Hi. I remember well the moment that I was told that I needed Methotrexate to bring my SLE under control or I would become very ill. Having had mild Lupus for some 20 years, I didn't take the warning seriously. I was nervous of such a seemingly toxic drug and didn't get behind it at all. I now wish that I had because during that 'messing around' period, the disease really got a hold and I am still paying the price now, 2 years on. The Drs don't prescribe these DMARDS unless they really feel they are warranted.

    Have confidence in your treatment and best of luck x

  • Thanks yes some drugs I've had I call necessary evils. I am Definately going to give it a good try. I have lansopros and anti sickness tablets too. Bit of a step into the unknown.

  • Have been on Methotrexate for couple of years after really bad side effects of Azathroprine and steroids....i get on fine but have had dose lowered as feelings of nausea, now on Methoject, very easy once a week self inject, really seems to keep the worst of Lupus at bay, having been really quite poorly its a definite improvement.

  • Thanks for the reply. It's quite positive from your story. I start mine on Monday fingers crossed.

  • I've been on MTX for 10 years in varying doses and both tablets and injections. It has worked wonders for me, decreasing my pain and fatigue, so much so that I have refused other alternative 'fancier' drugs since. But it took about a month before I started to feel an affect and then about 3 months total until I could return to school. For me the worst side effect is the nausea but that varies with dose and even depending on the day that's in it. At high doses with tablets I get it within the 24 hours following it but at lower doses it's very very mild most of the time. With the injections I got no nausea at all despite the much higher dosage but I couldn't keep it up psychologically so I stopped taking them. There are strategies that can help with this, for instance I take mine with dinner so I sleep through most of the nausea and any residual nausea in the morning just means I don't eat breakfast or maybe eat it later. You can also ask to be put on an antiemetic (something like Zofran). I was put on that for a while and it worked well.

    Another side effect that affected me a lot at the start but has since tapered off is the hair loss. Again this is dosage dependent (higher doses means more hair loss) but I never lost it all and now, aside from an overall decrease on volume it's not noticeable.

    There's also a query about it causing chronic neutropoenia (low neutrophyll count) but no one is sure and they don't really fancy taking me off my meds to see what's going on and I'm in agreement. This seems relatively rare though.

    I will caution however that my experience does not guarantee your experience. For one, everyone's SLE is different and responds differently to different treatment. For another, based on your picture I seem to be younger than you so it might just be that my body deals with it differently. Personally I would recommend this drug as an option to anyone based on my years of experience but if it's not working for you tell your rheumy and work with them to find an alternative.

    I hope you feel better, sorry about the essay! x

  • Hi many thanks for your reply. I usually tolerate medication well so maybe I'll be lucky.

  • I am so glad so many have been helped by Methotrexate...just to say, I didnt find this drug helpful at all...I felt sick and fatigued on it. Day of taking it and two days following were the worst. I tried it for 6 months and found no benefit at all. I can see that so many have been helped, so it is worth a try...Good luck xx

  • jane martin i had the same still do been on it nearly 5 years tierd ,sick flu like cant get warm i am on it for chronic psoriasis which i have had 27 years it does help that as i have kept out of hospital since going on it but wish somtimes i had never gone it on it for life now and i am 40 so the future is blood tests and drugs happy days

  • Thanks for the reply. I wish you luck with your health.


  • I have been on Methotrexate for over a year. To begin with orally/ tablets which I must say I really struggled with. They upset my tummy so much it was interfering with my other meds. It was suggested that I take it injection form to by-pass the gut. This has worked and suddenly my lupus skin flare up which this time round had been in bad flare for nearly 2 years, has suddenly started to heal. The side effects I get with the injection are fatigue and some sickness which is manageable. Life is so much easier now. I do the injection once a week and like the pill form take folic acid every other day. Forget the fact it's a cancer drug and most of the negatives. I must admit I was feeling the same when I started taking it but have found the injection most effective and takes me seconds to do once a week. If you go on discoid lupus UK facebook page you will see there are lots of people taking it for both discoid and SLE etc. I would highly recommend the drug. Hope this was of some help. Gentle hugs fellow lupie x x x x

  • Hi lol Lou,

    Thanks for you reply. Seems a bit of a mixed bag I was hoping for relief from all the tiredness but you never know. Pleased you recommend it. I start Folic acid only taking it once a week on a Friday then methotrexate on Monday. Have anti sickness meds at hand and my G P wants me to take something else to ward off stomachs ulcers. I thing it's Lansoprasol.

    Good luck with your health.

    Gentle Hugs back Mary xxxx

  • I also was on Methoyrexate, 3 pills once a week. Folic acid also but now just plaquenil for quite some time. One tablet twice a day 200mg. In the beginning I was constantly exhausted. Slept on and off for a long time. Aside from joint pain and a lot of muscle pain. And the flare up I would be on steroids which definitely helps. But can't be on that long either. I woke up one morning they rushed me to the hospital. terrible pain emergency operation on perforated colon and intestines. They r not really sure what caused it. It's like a stroke but in the colon. Dr. Said I was a ticking time Emil. Playing it bomb. So bad that if I didn't get there when I did I wouldn't seen the next day. 8 days in the hospital with all kinds of tubes and 2 transfusions later finally was able to come home. This was in August and it took and still is taking a long time to get back. So now that's why I'm just on the plaquenil. but all the medicines take sometimes 3 months to finally kick. Don't overdue anything any thing rest when you need it and avoid good and bad days or weeks if your lucky but give it time. I hope u feel better soon. Of course depression comes with it too. Don't be afraid to let your dr. Know if it happens.REST hope u feel better soon. Patience if possible?

  • Thanks for your reply, sorry to hear you've had a rough time. I am taking steroids as of yesterday and start the methotrexate on Monday. Of course there's Folic acid to take on a Friday. From what most people say the Methotrexate will take time but is generally well tolerated. I'm quite hopeful. I do get periods of depression but I've learnt to recognise why and although I take Medication to help I kind of sit it out till it passes.

  • Im just getting the dosage correct at the moment, it didn't seem to do anything at first and i didn't have any trouble with it, I'm now on 8 tablets a week and I think its starting to work. Having bloods done every fortnight. I was scared with all the negative associated with this drug but haven't yet had any problems and hope you are the same. Good luck xx

  • Many thanks for your reply tmh66. It seems by all the replies I've had it's not such a difficult drug to be on once you've got it right. I start my steroids tonight so hoping for great things ahead. Also hoping I'm not disappointed.


  • I was diagnosed with Lupus in 2008 and was advised to take Plaquenil once a day. Two years ago I was put on Methotrexate together with folic acid to help with fingers locking at night. This medication helped immediately and just a couple of weeks ago my Rheumatologist has taken me of them. I am still taking Plaquenil and 500mg Naporoxene every day together with 10mg Amitriptyline at night. So far all is as good as one can expect with Lupus.

  • Hi jjrice,

    You've had a positive outcome grey news. I've been on plaquinell for at least 6 years maybe 9. It feels like this is quite a step up medication wise. I am heartened by all the replies I've had onward and upward for me.

    Many thanks

  • Big thanks to everyone who answered my post. Each and everyone of you have been a great help to me. I can't tell you how good it feels to have the support of this group.

    You are all my new best friends.

    Good luck everyone. We can get through this lupus thing together. Xxxx

  • I was diagnosed in 1997. Been through ALOT of different drugs. Methotrexate was one of the bad ones for me. Made me worse. I didn't respond well at all. However with Lupus we are all different and will respond differently to drugs. Hope it works well for you.

  • Hope you now have the right drug for you. Thanks for your comment. Next Monday is my first day.

  • Hi there, I have been on Methotraxate for 3 years now beginning with 12mg and rising to 20mg. I did find the first several months very trying but then I was in the grips of some serious inflammation and flare-up at the time. It has keep me quite mobile as i was having much difficulty before, as you said it's a necessary evil. When i take it I am completely wiped out the following day but once i did not take them on time (due to the chemist not having it in) and could bearly move so it was a wake-up call. I still suffer with swollen joints quite often but as I am allergic to steriods there's not much choice out there the thing is most of the side-effects you get any way with S.L.E, so I'd give it ago. Good Luck :)

  • Thanks for your comment. I am committed to giving it a good try. Thanks for the tip of feeling wiped out the next day I won't be alarmed or put off by that if it happens to me.

  • Hi , I was on Methotrexate for 8 years with no side affects and my Lupus was fairly well controlled. Then 2 years ago my lungs started to have a reaction to the drug , so now being put on all sorts of medication trying to find something that will surpress this vile condition. As far as i can remember it took about 6weeks to start having any relief, but saying that everyone is different. Hope that helps and good luck.


  • Thanks for your reply and sharing your story. I am hopeful at the moment.

    Good luck with your health, hope you're all sorted out soon.

  • Hi I have been on Methotrexate for about two years along with Folic acid a couple of times a week to help my liver process the methotrexate as I have a few problems with my liver. I am so glad that I was prescribed it as it has made a huge difference to my life compared to other drugs that I have taken to try to get my symptoms under control. I have had chronic fatigue for years, my skin has been in such a bad way I have spent time in hospital wrapped up in bandages that are coated in soothing creams and ointments, I have been bald for years and from time to time have lost some of my toe nails when my skin has been bad. I also suffer a great deal of pain in my muscles and joints. Since taking methotrexate I have seen a huge improvement in the fatigue and my skin, I have started doing two half shifts at work a week, my hair is showing signs of coming back and although I am still in pain I manage to cope better. I do however have to be very careful about picking up infections so make sure I protect myself and do all I can to go out when I am least likely to catch infections and I eat healthily too.

    I hope it works as well for you as it has for me, good luck

    Madmagz x

  • Thank you so much for a very positive reply. I started Methorexate last night so it will be a while before I feel the benift. I am on steroids but only for the last week. They are to improve things in the short term.

    Good luck with your health.

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