Your experiences with taking methotrexate | Lupus Forums at The Lupus Site
  1. As you can see we have transferred to new forum software which is much more stable and will eliminate problems that we had with the old software.
    *** To login you will all need to reset your passwords. To do this simply click login (top right) then click the forgot password link. You will receive an email with a link to reset your password. You can then use the forums as normal.
    Dismiss Notice

Your experiences with taking methotrexate

Discussion in 'Medications' started by Tired, Jan 13, 2019.

  1. Tired

    Tired Member

    I recently had to come off of plaqenil, which has controlled my symptoms fairly well for the past couple of years. My doctor mentioned that the next two drugs to try would be sulfasalazine or methotrexate. I'm allergic to sulfa drugs, so that leaves methotrexate as my next option. I was wondering what your experiences with methotrexate are...did you experience any side effects initially? Did you have your labs checked more frequently for low platelets, WBCs, etc?

    Thank you for your input. :)
  2. Jessica1

    Jessica1 Moderator

    Hello Tired,
    I've been taking methotrexate for ten years and have fortunately never had any side effects. I take folic acid every day which is to prevent side effects, I'm aware that not everyone is prescribed it daily but it's clearly worked for me. I have my bloods tested every two months which has only been a recent change from monthly. They were tested every fortnight for my first few months though.

    I hope you get on ok with it and I wish you all the best.
    Tired likes this.
  3. Lori ODonnell

    Lori ODonnell New Member

    Hello. I had terrible side effects from the shots. Pills may be better. Nausea, loss of appetite and lost all my hair. I was not told about folic acid or prenatal vitamins until a hair dresser told me 6 yrs later. Within a year, all my bald spots were gone and I have all my hair back. The drug itself (methotrexate) was not a miracle worker for me but others do not have side effects and seem to do ok.
  4. Lori ODonnell

    Lori ODonnell New Member

    Why stop plaquenol if it works? I have been on it for 14 yrs. 2 pills a day. Works good.
  5. Tired

    Tired Member

    I can no longer tolerate the GI side effects. I was starting to think that I had UC or Crohn's from all of the diarrhea. I was taking it with food, doing all of the right things...but it didn't matter. I was still sick with it, all the time.
  6. Shalee

    Shalee Shalee

    Hello tired
    I am on plaquinel and have been now for just over 5 years is seems to help I take 1 tablet a day I also started taking methotrexate in January 2018 I started on 20mg dose in tablet form didn’t look forward to Friday’s as took in the evening and experienced nausea for a day or two afterwards put up with this for about 10 months hoping the nausea would go away but no luck so started on injection the nausea is gone I still have my days when pain is more annoying than normal but overall it seems to be working for me, I take folic acid and vit d everyday except the day i have the injection still taking 1 plaquinel a day and blood test every month and all seems to be fine, my Rhuematologist upped my plaquinel to 2 a day but my LFT results went up so he dropped it back to 1 again and it evened back out again. I wouldn’t say that methotrexate has been a miracle worker but it definitely has help ease a lot of the discomfort I experience I would say it has probably worked to about 60% which has made a considerable difference to me in general.

    As with anything just because one thing works for one person it may not be the right fit for someone else I can only comment on my personal experience and how this medication has helped me but hey if it’s works it’s great but if not back to the drawing board until your find something that does I wish you all the best
    Tired likes this.
  7. Tired

    Tired Member

    It looks like I will be starting out at 7.5mg once per week. Prescription strength folic acid daily as well.

    For those of you who have taken methotrexate in pill form, what worked best for you? Did you take it at night so you could (hopefully) sleep through some of the side effects? Or did you spread your doses throughout the day? With food or without food? I've heard some say it should be taken on an empty stomach, while others have said it doesn't seem to make much of a difference.
  8. Jessica1

    Jessica1 Moderator

    I usually take mine after lunch but that's only because I take other meds at that time. I'm really fortunate that I seem to tolerate everything so others that have had side effects will probably be better help to you.

    It's good that you've been prescribed daily folic acid though, I'm sure that will be beneficial to you. Please let us know how you get on....all the best :thumbsup:
  9. keebler

    keebler Moderator

    I was on the pill form quite awhile. I always took after a good meal. Didn't have much side effects for me.
    Im on the shots now.
    Good luck.
  10. Shalee

    Shalee Shalee

    Hi tired when I was on the 20mg of methotrexate tablet I used to take them on a Friday evening after dinner and was advised this by my Rhuematologist as I work a couple of days a week and just encase of side effects.

    With me it was better to do this as the tabs gave me bad nausea which lasted all day Saturday and into Sunday, so changed to injections which I administer myself on a weekly basis without any side effects.

    I hope the tabs work for you as it is a lot easier to take especially if your out and about they are also a lot cheaper as with the injections methotrexate comes in 5 x 1 ml ampules which lasts 10 weeks whereas the tabs I used to get come in 50 x 10mg tablet which last for 25 weeks.

    Best of luck
    Tired likes this.
  11. sagehen

    sagehen Junior Member

    I could not stay on Methotrexate. The pills were causing my kidneys to bleed. I do not think most people
    have this issue with the drug.
  12. Tired

    Tired Member

    I work night shift, so I've been taking it after my shift (and food) once weekly. I've been lucky that I've had at least 1 or 2 days off after taking it, which is good because it feels like a really bad hangover...night sweats, sleeping all day, hot and cold flashes seem to be the norm. Only after the 1st dose did I have dizziness and nausea. I'm hoping it stays the course after I bump up my dosage next week to the 15mg.

    Thank you for all of your input!
    Jessica1 likes this.

Share This Page