Methotrexate- your experience

Hi! So I've been placed on methotrexate in an attempt to reduce my "stuck at" prednisone (20mg) level. The new rheumy is a bit puzzled because some of my symptoms are Lupus relevant ( needle pricks , occasionally butterfly rash, breathing/pluersy) . Apparently, accurate test result are tainted due to prednisone usage ?

Now having been on Meth, for 3 days I'm experiencing extreme fatigue and pain in new places (back right side, calves,forearms) I've cheated, in my mind, by taking my opiates, & slapping on a lidocaine patch. Please share your experience, explain if worthwhile to push through. I'm confused, having a disappointed moment. Plus my hair is increasingly falling out :( I'm not terribly vain, but, as a former hairstylist it's saddening to add more negatives at this point. Almost, 1yr in PMR diagnosis. Thanks for being here for each other; I'm most definitely grateful!! 😘💕💛

27 Replies

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  • Hi klairv0yant

    You say you've been on 'Meth for 3 days'? Methotrexate?

    Have you been taking it daily? At what dose? It's normally a once a week drug, please let me know!

    I can tell you more about Methotrexate in another post as I'm currently on it & have been before.

    Mrs N x

  • Sorry I didn't say I took it daily, just day 3 of it in my system. Once weekly + folic acid daily.

  • Yes - methotrexate is never given daily as far as I know and you could become pretty ill with overdose. Since it is the weekend - if you ARE taking it daily, please stop until you have seen a doctor unless the dose is a very low one - 2.5mg was used daily in a study so might be acceptable but weekly was found more clinically effective.

  • Day three of it in my system- it is prescribed weekly for me. Thanks for concern, sorry for confusion

  • That's OK then - apparently it is a not uncommon problem when the doctors haven't explained clearly!

  • Well, seeing I've stumped two physicians with my symptoms, confusion and trial/error are the course I'm on 😁

  • I'm currently on Methotrexate again, having stopped it for Surgery & Chemo, I was on 18mg of Prednisolone and having difficulty reducing & the MTX enabled me to get down to 7mg

    It can cause extreme fatigue in some people, usually the following day, l took mine on a Sunday but never made any particular plans for the following day, so l could take the day as it came.

    Some people suffer from nausea & l did myself at first but l dealt with it & it passed within a month.

    It did do what it was prescribed for & l got down to 7mg whilst on it, so for me it was a success & after Chemo my PMR appeared to be under control at 5mg but it did flare again & that's why l'm back on Methotrexate as a Steroid Sparer.

    There are other members of this group who've had a different experience with Methotrexate & l'm sure they'll post a reply.

    With regard to your hair, mine was affected by the high dose steroids & became very thin at the front but improved as l dropped the Prednisolone dose until l started Chemotherapy.

    I do hope you start to improve, this is not an easy drug to take but if you can tolerate it can be very beneficial.

    Best Wishes

    Mrs N

  • I wonder why you are on Folic Acid every day? I have been on Methotrexate for two years and take Folic Acid once a week, never on the same day as Methotrexate.

    I hope you feel better soon.

  • It depends on the doctor. Some give it just once others use a lower dose daily except the mtx day.

  • I'm on Methotrexate 20mg & take Folic Acid 5mgs on the other Six Days.

    It's the second time I've been on it & protocol was the same each time.

    Taking Folic Acid is to try & ease the side effects.

    Are you living in the U.K? I'm wondering if its just a personal thing to each Consultant.

    Best Wishes 🌺

    Mrs N

  • I live in the USA. I started Sunday - 10mg of Metho.(once daily) and 1mg folic acid (per day)

    . I'm wondering if I've caught some bug . There where 3 out of four members of the family I help with flu last week.

  • Ah, maybe that's the cause? I was started at 10mg to make sure I could tolerate it then after two weeks went to 20mg.

    I found it best to eat lightly on MTX day & I really didn't like the smell of cooking, so be a bit mindful of that. Hopefully you'll pick up in a few days.

    I used to work with a guy who was on it & he went down to working a four day week as he was missing out on his weekends with his family. So he took it on a Sunday & didn't work Mondays & was free to do whatever he wanted, which was mainly resting.

    I'd been stuck at 20mg Prednisolone for far too long & the MXT did help me reduce, so fingers crossed it'll work for you too. I've just taken mine a couple of hours ago.

    Take Care & hope you feel better soon. 💐

    Mrs N x

    Let me know how you get on x

  • My increase is 2.5 per week, after a month on Meth. Decrease prednisone from 20 to 17.5, I'll stick with it! Glad it has worked for you 😀

  • Yes that was my first thought like Penelope above. My rheumy is emphatic there should be three days at least between taking my weekly methotrexate and folic acid. It can make you feel pretty ill having them too close together I understand. I would seek further advice from your GP or rheumy to clarify is my advice.

  • Some doctors use it as a lower daily dose.

  • Understandable

  • I was told to take 5mg Folic Acid the day before taking methotrexate, and another 5mg Folic Acid the day after taking methotrexate, so that is what I do. I haven't really noticed any difference in the effectiveness of Prednisolone since I began taking methotrexate - I've had to increase dose rather than being able to more easily decrease dose, which is the aim :(

  • Sorry :(

  • I was on Methiotrexate once weekly by injection. After a month my main side effects were nausea on the night I injected and hair loss. My rheumy recommended me then to take folic acid every day but the injection day, this did stop the hair loss. I personally found it a help in reducing my steroid dose. I did notice the day before and day of the injection I was very stiff and felt in me the effect tailed off after 5 days. You also have to have frequent blood tests to start with. I think the problem with a lot of drugs is you feel the side effects instantly but it can be weeks before you get the benefit.

  • Thank you

  • I was on weekly methotrexate for 6 months and lost my hair and was sick the whole time. I felt so nauseated and hypoglycemic feelings and the only way to feel better was to eat. I literally thought I was dying so I did not care that I was eating way too much. I went so far as to give my son all my passwords and financial stuff so he could take care of it.

    One day I decided to stop the methotrexate and within a month I felt like a new person.

    All of us are different I share my experience so if it starts happening to you you won't wait as long as I did. Oh and my hair came back thicker and curly.

    Go figure......

  • Well thank you. As I've been surprised with hard hit. Plus, having had a A Nissen fundoplication- so vomiting is impossible and quite painful. Frankly, so exhausted, frustrate and fighting to stay positive. Information is power, for that I keep going!

    Oh, and my appetite has decreased and changed: protein craving - thank goodness it's off the sugar addiction I've been fighting.

  • I truly understand the wanting to stay positive and not fall into the pit.

    At first before I found this forum I was on the doctors plan of get off prednisone quickly. Well that did not work for me and I truly was despondent but then I did the self talk to myself.

    We have to come to terms of what our limitations are and be grateful we did get wonderful experiences prior to all of this.

    I am lucky as I am a planner. I never planned on being ill but I did plan on getting old. So, I started hobbies earlier in life to keep me going when I was older.

    I am an avid bird watcher which is really fun once you figure out how to identify birds. Then I also have been collecting stamps so now I can start working on that project. Lucky me I can paint and I write songs.

    What I am saying is you have to change your focus from what I miss about my life to what can I do to challenge myself and have fun while I work on getting better.

    Once I changed my thinking about all of this and gave myself permission to have fun my life has changed. Yes my illnesses will still limit me but it won't stop me.

    Pleas know it is not easy to accept our limitations but what a load off of me once I did.

    God bless...

  • How did I not reply, I'm sorry - I, too, have hung bird feeders in my yard and my bird book is on the table. Wow the grosbeak, woodpeckers and finches are wonderful to see. Oh, and tons of hummingbirds - heaven forbid I forget to feed them such scolding I receive lol

  • How are you doing? Are you taking methotrexate? We have a lot of hummingbird some gold finches n house finches.. morning doves and toewees.. We can't put up feeding stations as we had too many rats.. so lots of hummingbird feeders.. It is nice my neighbor has a feeder up which is 15 feet away n just perfect.. we will sit on my side of the porch n watch them..A short time ago we had a baby on a branch n watched mom feed it..that was way cool..

    I think I have gotten past my flair but it is disappointing to go back up on pred.. got down to 10 n now for a week at 18.. not going to let it get me down just hate that it has slowed me down again... I hope you are doing well

    Linda

  • I do take methotrexate- I've been having a time of it, get to 10mg , and the migraines, muscle pain right back. See new rheumatologist next week. Lupus has been suggested, but someone said verifying its actuality difficult when person is on prednisone ? I claim ignorance to it all :)

  • Lupus is a real tough one to diagnose.... Hope they can figure it out...

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