Page 1 of 2 12 LastLast
Results 1 to 10 of 16

Thread: Methotrexate: Pros and Cons

  1. #1
    Join Date
    Mar 2009
    Location
    Michigan
    Posts
    211
    Thanks
    18
    Thanked 7 Times in 3 Posts

    Default Methotrexate: Pros and Cons

    So on Friday I saw my rheumy again and the day I knew would eventually come has now arrived. She said it's time to consider taking methotrexate.

    I've been reading a ton in the archives this weekend, about your experiences with it...what reactions you have and how you schedule your doses. That has all been incredibly helpful. But here's the one thing I am stuck on: I know that MTX can bring on lymphoma/leukemia. I have Sjogren's Syndrome, along with SLE and the rest. In fact, the Sjogren's is so active that one doctor called it "Advanced Sjogren's". Three times over the last three years, blood work has indicated possible lymphoma, and I went off to the specialist. Each time, thank God, I was fine. But because it seems I have a tendency to go in the direction of lymphoma, or lymphoma-like symptoms, I'm terrified that I will get lymphoma. It feels like it's just a matter of time, and MTX will make it happen sooner. Yet I also know that the type of lymphoma that comes with MTX is usually treatable. However, that doesn't do much to reduce the fears of trading lupus, which is awful but somewhat liveable, for lymphoma, which could be much worse, and kill me.

    The rheumy said that most of the patients she's had that get lymphoma have two things in common: they have had lupus for a long time and the lupus has been out of control. I'm not sure where I fit. I believe I had lupus for about 10 years before I was diagnosed, and it's been active more than not since I was diagnosed, although I did have a period of remission from May - October.

    So for those of you who are on MTX, how did you weigh the risks and benefits? How do you deal with the fear? Or, for those of you not on it who had the choice, why did you decide not to do it? Also, for those of you on it, do you feel it's worth it? Are you feeling so good with MTX that in your case the benefits truly outweigh the risks? Any thoughts would be really appreciated! I have until my next appt March 12th to decide, but it's driving me crazy in the meantime...
    Love...faith...joy...hope...strength...
    Lupus, you have no chance!

    Love and hugs,
    Cheryl
    (mom to my little Chihuahua, Brandi)


    Diagnosed with SLE, Sjogren's, Reynaud's, Celiac, and arthritis November 2006.

  2. #2
    Join Date
    Jan 2009
    Posts
    2
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    oh boy, I could have written your post...

    sorry I can't give you any feed back on MTX, my rheumy is also suggesting I go on it and I too am resisting...the side effects just scare me so much

    I just had a scare with lymphoma as well, so I'm not real thrilled to read about the MTX causing lymphoma? I didn't know that before.

    Anyway, I hope you get some responses, though I still really wish I didn't have to go this route. I'm on prednisone now and feeling better, but waiting on blood test results.

    Good luck with your decision!

    --kristin
    Diagnosed with SLE Oct. 2007 and have gone through a crazy rollercoaster of symptoms

  3. #3
    Join Date
    Mar 2009
    Location
    Lebanon, Pa.
    Posts
    802
    Blog Entries
    4
    Thanks
    26
    Thanked 82 Times in 57 Posts

    Default

    I was started on the methotrexate 9 weeks ago and it still has me worried that it will cause something else. My rhuemy wanted to put me on cell-ceph first but the insurance company turned him down 3 times and the other meds were not helping with the swelling and pain in my joints so here i am just waiting for the other shoe to fall as they say. So far the only reaction i have is nausea and some hair loss. I will keep you posted. Bonita

  4. #4
    Join Date
    Dec 2009
    Location
    Ontario, Canada
    Posts
    6
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Unhappy

    I may need to research methotrexate. My reumy wanted to start me on it Jan 18th. My appointment has been moved up to this Friday though as I am and have been in a bad way for the past few months.. really bad this past month though.

  5. #5
    Join Date
    May 2007
    Location
    Seaside, Ca.
    Posts
    3,871
    Thanks
    196
    Thanked 948 Times in 732 Posts

    Default

    Hi everyone,
    I'm sure that there are others that know more about this than I do, but I've read that MTX is supposed to actually slow down the progression of the AI diseases.
    My rheumy in S.A. seemed to want me to take it mostly for the RA that I have. I've read that there has been great success with slowing the progression of RA and preventing further bone and joint damage if the disease is treated vigorously as soon as it's diagnosed. I also have the complication of having Avascular Necrosis, which keeps me from ever, ever taking steroids. For me, steroids would simply disintegrate my bones.
    I was also very worried about taking MTX, but it seems to be working for me. I had problems with the oral form, so now DH gives me an injection once a week. I also continue to take Plaquenil daily, along with folic acid, mega-doses of vitamin D and my regular vitamins. I've been on this combination since June, and I've noticed that my scalp psoriasis has cleared, my rash on my face is a bit clearer, I have lots more energy, and I feel almost normal for most of the week after my shot. Unfortunately, I still have lots of joint pain and back pain, but I think that part of this is AVN and my rheumy thinks that I also have some disc degeneration in my back.
    So, I think that I'll continue with the MTX as long as I'm seeing some good results.
    Hope this helps......
    Hugs,
    Marla

  6. #6
    Join Date
    Mar 2009
    Location
    Michigan
    Posts
    211
    Thanks
    18
    Thanked 7 Times in 3 Posts

    Default

    Thanks for all the feedback, it's really helping. Marla, I really appreciate that you shared how much better you feel since taking MTX and that it's worth it for you. I needed to hear that. I'm leaning now towards going ahead and taking it that I've had some time to think. While I'm still terrified about the possibility of lymphoma, I'm starting to think that I may be even more at risk if I keep going into flares all the time...that uncontrolled lupus/Sjogren's may be just as much of a risk. Not just of lymphoma, but whatever else can be affected by the disease activity. I didn't realize that MTX can also slow the progression of AI - that alone is so encouraging.

    Bonita, please do let me know how you're doing as you continue taking it. I hope the side effects subside for you. Isn't it frustrating when the insurance companies decide what meds you can take?!?!

    Lissa and coop_mom, let me know what you decide. I'm also wondering why now there seems to be such a push for us to take MTX. You both were asked to consider it, and I know another person from my lupus support group who was also told to decide if she wants to go on it by her next rheumy appt. The cynical side of me is wondering if there's another reason we're being so encouraged to take this...but I hope it's just that they're finding it successful with us lupies!!

    I also talked to a friend from my lupus group this week, and her 13 year old son is on it, a high dose, and has been for a year. Although she too is afraid of the possible effects, if she's put her son on MTX, and he's done okay with it, maybe I shouldn't be so afraid of it.

    Right now I'm leaning towards taking it, but I want to wait until after the first of the year to call the rheumy and let her know.
    Love...faith...joy...hope...strength...
    Lupus, you have no chance!

    Love and hugs,
    Cheryl
    (mom to my little Chihuahua, Brandi)


    Diagnosed with SLE, Sjogren's, Reynaud's, Celiac, and arthritis November 2006.

  7. #7
    Join Date
    Dec 2008
    Location
    Atlanta
    Posts
    3,115
    Blog Entries
    1
    Thanks
    27
    Thanked 80 Times in 69 Posts

    Default

    hi brandici,

    so sorry for the delay in responding to your thread. I have been out of town a good bit, and have been sleeping when at home.

    My rheumy started encouraging me to take mtx when the Plaquenil just was not giving me much relief. I have always resisted steroids, and just did not want to continue with them. She strongly encouraged me to try the mtx, so i agreed. I continue to have the fears about mtx and its potential damage, but i will attest that the benefits (at this time) are worth the risks. Like Marla, i take the injection once a week, and usually have several good days. I always have pain, but that may be as much from the fibro as the lupus. My dr. watches my blood work very closely (when i first started taking mtx, i got blood work every 2 weeks, then once a month.) She assures me that if we ever see a problem, the mtx can be immediately discontinued - it does not require tappering like steroids.

    In the beginning i was afraid to start mtx, but now i am afraid of stopping. I don't want to go back to where i was. I am now functional, and can deal with the daily pain. Before, i was worthless, and in total misery every minute of every day.

    It is consolling to me knowing that the med can be stopped if any problems are detected....

    Good luck in making this tough decision.
    Phyllis

    share a smile today

  8. #8
    Join Date
    Dec 2009
    Posts
    1
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default Chemo

    This week My doc said she would like to start me on the Mtx and is giving me a month to decide, I am new to this site thanks to my sister who found it, I also am concerned about the side affects ( hair loss, exhaustion and nausea) though I already have a couple of those daily, I was diagnosed years ago with Lupus now RA maybe one maybe both I am having alot of tests next week to narrow it down since I am with my 4th Rheumatolgist, I feel good about this one but I am very concerned,I have taken steroids and plaquenel and now just nsaids and prednisone,I heard Plaquenol causes delerium? but I am suffering pain I have never experienced before (crippling) I have a very demanding job and this is very hard to deal with, gee Im sorry about the WAH WAH. any help and advice is welcome and thank you all.

    Vickie

  9. #9
    Join Date
    Mar 2009
    Location
    Michigan
    Posts
    211
    Thanks
    18
    Thanked 7 Times in 3 Posts

    Default

    Hi Vickie, and welcome!! You might want to post a hello message in the new members area so that we can all welcome you - not everyone visits this forum all the time and I don't want you to feel overlooked. I'm so sorry to hear about all you're going through and hope the doctors find something to bring you some relief. I've been on prednisone more times than I can count over the last few years, and I've been on Plaquenil since I was diagnosed in 2006. I've never had problems from the Plaquenil though.

    I think I've made a decision about the MTX...my typical lupus pattern is to go into flares often during the fall and winter, especially October - November. I tend to do much better in the spring and summer, except for mid-June when the stress of the end of the school year hits. For all of this, I think I want to wait and keep handling this on my own without MTX through the spring and summer. Then, go on it in August to boost me up for the fall. If it will give me more energy during the week and help stop the progression of AI, that sounds good to me. I naturally have more energy when the days are longer and the temperatures are warmer. (Not hot, but warmer than this freezing Michigan winter weather!) Anyway, that's kind of where my thoughts are for now. I have one appt. with the rheumy in Feb and another in March...not sure why I have two, but I'm not going to complain, lol. Hopefully she'll agree with me, or give me compelling reasons to change my mind.
    Love...faith...joy...hope...strength...
    Lupus, you have no chance!

    Love and hugs,
    Cheryl
    (mom to my little Chihuahua, Brandi)


    Diagnosed with SLE, Sjogren's, Reynaud's, Celiac, and arthritis November 2006.

  10. #10
    Join Date
    Jan 2009
    Posts
    179
    Blog Entries
    1
    Thanks
    0
    Thanked 11 Times in 7 Posts

    Default

    I hope this helps. http://www.clinexprheumatol.org/pdf/..._pdf/14rau.pdf
    It helped me feel better about it
    32 YO Wife, Mother and Advocate
    Lupus - Subclavian Bypass May of 2009. Ectopic Lentis, Scoliosis(not lupus related)
    Current medications: Aspirin, Plaquenil, multi vitamins, folic acid, Methotrexate, Tramadol PRN

    You can find me on facebook at www.facebook.com/sororenotis
    Please tell me you are from here and who you are if you add me there.

    I work full time and Leader for International Autoimmune Arthritis Movement
    http://www.iaamovement.org/

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •