Hi new here. Does anyone take Methotrexate. If so please could you let me know your experience??

Hi everyone

I am a newbie here - please be gentle. I would like to know if anyone on this site takes Methotrexate and if so please could they help me by telling me what they think about it.

I was diagnosed in April of this year after ignoring symptoms for roughly 2 1/2 years. I kept putting off going to the docs for as long as I could. And to be honest was worried what the doc might say or find. I didnt have time in my life to be ill (3 wonderful young children - mothers out there can appreciate this sentence lol) and was scared coz i never felt well.

My lupus was originally found through a ANA anti-DNA positive screen. And everything went from there and seemingly down hill from there too.

I am on various meds ie Hydroxychloroquine and steroid injections - but nothing has worked. The consultant doesnt seem happy and has asked me if i am willing to go onto Methotrexate. I am a bit lost and I dont know what this med is and what it will do. Someone said its a Chemo drug!!! I am losing loads of hair already without this! HELP TOTALLY LOST. And more importantly why they want to put me on it??

So if anyone has any advice I would really appreciate it. Thank u x

12 Replies

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  • Hi. I was diagnosed in May 2010 and also am a mum. Methotrexate is a chemo based drug but in much lower doses than is used for cancer. I have taken it for 3 years and am now on the top dose of 25mgs. I elected to self inject as the tablets got a bit harsh on my tummy as I moved to a higher dose. Its the worst of two evils really but it is common to wean patients of steroids while putting them on Methotrexate of similar. Methotrexate works by suppressing the immune system and therefore reducing the lupus activity. It can be very effective. Steroids can have bad lasting side effects so docs will not use long term if they can possibly avoid it. You will be given folic acid to counteract side effects and I also have anti nausea meds. 2 to 3 days after I feel nauseous, headachey and fatigued. You will need monthly blood tests at GPs for full blood, kidney/liver function and inflammation. It will also leave you immune compromised and prone to infection. On a positive note you will hopefully feel a lot better a couple of months after starting it. I take it on a Tuesday night so I am on good form for the weekend. Life is very different with lupus but it can still be a happy and fulfilled place. Make sure you educate friends and family to create a strong support network. Good luck x

  • Hi I have had lupus for nearly twenty years and have tried all sorts of pills and potions over that time but once I started taking methotrexate I never looked back. I take 15mg weekly I have to take folic acid to help my liver cope as I have trouble with my liver but have never felt so good and live a full and active life now. I also take steroids and from time to time if needed go to hospital for an infusion of I.V. steroids. I have lost my hair several times but that is down to the lupus not the drugs, doesn't really worry me it saves a fortune and I am a biker so it does not get mucked up inside my lid. ;-) I have a collection of crazy bandanas. Yes methotrexate was originally used to treat some cancers which does sound terribly daunting but then if you think about it there are drugs on the market used for other conditions which were used as rat poison so chin up love we are not doing too bad. It is a daunting thought but the doses we take are smaller and cancer drugs have to work on the immune system same as lupus drugs so don't be scared, give it a go. Methotrexate has basically given me my life back I would certainly recommend it.

    Good luck whatever you decide

    Madmagz x

  • Hi I've been on methotrexate for a few years plaquinel , naproxen oramorph you name it . I found that it didn't do anything for me just made me feel not myself. So I have decided to take nothing as I hate the way thee fixation made me feel, not everyone has that feeling and the medication works for them but did not for me, I'm struggling to hold my job down I work 44 hours a week can not get any help with disability I struggle to walk far . But I just have to keep going . I hope it helps you as I say no to people are the same it helps joint pain so they say xxx

  • U seem to have the same sense of humour as me lol. I am loosing loads of hair. If it goes it goes. Cant do anything about it if its gone. At least I wont pay a fortune to cover the grey ;-). Thank you for your help. Definately cheered me up xx

  • Thank you for your replies. It doesnt sound so daunting when I hear that you both have has such an improvement with it. I am willing to try anything to 'feel' like me again. Thank u xxx

  • I must admit that it is my sense if humor that keeps me going most of the time, being a biker I am surrounded by men who shave their heads - including my partner so when I get this look naturally it is easier to cope with. One day on a bus I had my leathers and long boots on with a bandana that had a skull and cross bones on it. A little boy kept looking at his mum and at me she looked at me and was obviously embarassed. I smiled at her as he came out with...... "Mum why is that lady dressed like a pirate?" I love kids so was ready with an answer for him, I bent down to his level and with a very serious look on my face told him that it was supposed to be a secret but my Dad was Jack Sparrow and lived on a great big ship in the middle of the sea! His eyes and mouth opened so wide and he was amazed and said "Oh wow that's great!" I told him he must not tell anyone as it was a secret then just got back up. His mum looked so relieved it was great. I would definitely try the methotrexate as nothing ventured nothing gained, if it doesn't work you can always stop but you won't know unless you try it.

    Good luck, I hope we see positive updates

    Madmagz x

  • Hi there, I too had the exact same doubts as you. I was diagnosed (officially) in January this year and the rheumatologist recommended methotrexate as well as the placquenil too. I was not getting enough relief just with the placquenil and was in a lot of pain (inflammation). The best thing ever for me was going on methotrexate.....and I feel it has given me some of me back. I have been on it now 6 months and I have had to increase the dose (now on 8 weekly and probably have to go up to 10 tabs weekly) but although I felt a little nausea at first it has been a great help. The fatigue can still hit but not in the same way as previously, the joint pain is less with the meds and the flare ups are occurring less and are much less intense. I find that I am being monitored so regularly (monthly) so if there are any problems they can sort it out early. For me I wasn;t managing before going on the methotrexate as things were getting too bad. This is helping to control it and for me the positives outweigh the negatives as I want to live my life now....for today and to enjoy each day. It's a hard decision and I hope you reach a conclusion that is good for you xx

  • Hi I am on Methotrexate and have been since Feb of this year......previously I had been on a high steroid dose,weaned myself off the steroids (under doc's orders) as the Metho built up....(it takes about 12 weeks to kick in)...my joint pain is much,much better...it is still there some days,but bearable with over counter pain killers, I still get VERY VERY tired though, and last week had a steroid injection (rheumy nurse has told me to ask my rheumy at next appt (Oct) for Plaquinel as she said this and Metho work very well together (she is frightened to ask as she thinks the Doc might think she is telling him how to do his job!!!) I now work 3 days a week (8 hour days) and on the day after my last shift I have to sleep for most of the day. I am still extremely stiff in the mornings, and find it hard to bend down, also by the end of the day I find walking upstairs difficult, but on saying that I do feel a lot, lot better than I did, so am sure the Metho is doing something...hair loss, yes I have noticed some, so has my hairdresser, but I still have lots left, so really the benefits are outweighing the cons. Good luck, I believe that everything is worth a try!

  • Thank you for your reply. I have decided to try Methotrexate. Think the symptoms i am getting outweight the negative side effects.

    Dont worry too much about the hair loss. I have lost about 1/2 of mine before the Methotrexate. If it goes it goes lol there is always a cool bandana out there for me somewhere.

    Thank u x

  • Hi i was also diagnosed in 2010 and was first put on methotrexate. This drug makes me feel very sick cant get out of bed somedays i feel nauseated frequently and have vomiting somedays too. I've questioned if this medication is the best for my condition and i always get that its a pretty safe drug with minor side effects altho we all have our own tolerance to certain meds. I hate this drug i feel horrible with it i stopped taking it for 5 months on my own because it made me feel that bad

  • Hi I was diagnosed in 2010 with mixed connective tissue disease and was put on methotrexate to start. It has helped with the inflammation and pain but the side effects are a bit harsh for my system it has made me nauseous vomit and not have too much of an appetite I just recently talked with my doctor about different meds but he tells me this one is working and it beats taking steroids

  • Hi, I was diagnosed with Rheumatiod Arthritis in 2000. I managed to keep the disease relatively inactive for many years thru strict elimination diet. See Barbara Allen, or the Padderson Program. However x-ray's last year showed my foot and hand bones had finally started to erode so I started taking Methotrexate. We'll I have to say it's made a massive difference in my quality of life. I have much less pain, greater mobility and fewer flares.

    On the down side I am much more fatigued now and most days need a nap for and hour to get thru, but I can eat most foods again and walk 5 times further so I'm sticking to it. I've been on 20mg/wk for 6 months now, and still feel tired, but the increase in mobility and dietary explosion is worth it it think.

    Good luck and I hope you find some relief.

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