View Full Version : Methotrexate: Pros and Cons
12-07-2009, 11:03 AM
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. :hissyfit:
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...
12-08-2009, 01:27 PM
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!
Diagnosed with SLE Oct. 2007 and have gone through a crazy rollercoaster of symptoms
12-08-2009, 04:36 PM
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
12-08-2009, 05:21 PM
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. :unsure:
12-08-2009, 08:14 PM
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......
12-10-2009, 10:40 AM
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.
12-14-2009, 07:40 AM
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.
12-26-2009, 11:58 AM
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.
01-21-2010, 10:37 AM
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.
01-22-2010, 07:22 AM
I hope this helps. http://www.clinexprheumatol.org/pdf/vol22/s35/s35_pdf/14rau.pdf
It helped me feel better about it
01-22-2010, 07:25 AM
I had some of the same fears - my rheumatologist told me that many people do very well on it and little kids take it. Sometimes your blood does not like it, but it can be stopped immediatly. As long as you are taking your blood often and watching your body you should be fine.
I start MTX some time this week myself
01-22-2010, 11:23 AM
i have been taking methotrexate for about 11 months now...roughly... almost as long as my diagnosis, they started me on it right away. when i first started taking it, it made some of my hair fall out... like, it thinned out alottt. but now that my body is adjusted to it... i really have to like, effects from taking it. and i have to say that it really helped me, when it comes to my kidneys and such. my kidneys went from a level 4 in severity, to being perfectly normal.
you have to look beyond the side effects, it actually is a very positive drug in my eyes.
01-26-2010, 08:22 PM
Thank you all for discussing this. My doctor is starting me on cytoxan, which is not the same, but is similar. I've been somewhat concerned- but after reading this - and doing other research and hearing other stories - I'm feeling a little more upbeat. I'd rather have lots of good days and react well than spend life like I am. (I have far more CNS stuff going on right now).
Love and light!
01-27-2010, 08:45 PM
i am glad you are seeing your rheumy to discuss your plans about mtx...please let us know what you decide. Like girlindallas said, mtx can be stopped at any time. I get regular lab work run, and my rheumy assures me that if they discover any concerns with my numbers, we can immediately stop the mtx....it does not require tapering like steroids do.
ASHLEY-----hey girl....so good to hear from you...hope you are having a great semester.
01-28-2010, 07:13 AM
So...I'm still thinking about it. I see the rheumy February 9th, and I really should have a firm decision by then, shouldn't I?
After reading all of your comments, I'm much less concerned about the side effects. My hair is super thick, so while I would hate for it to become thin, I could probably deal with it. Same for the fatigue the day after mtx...I've kind of resigned myself to that.
What I can't seem to get past, though, is the fear of it causing lymphoma. Is the treatment really worth the risk? I guess one of the questions in my mind that maybe some of you could answer is this: how much of a difference does mtx make in your life? What can you do with it that you can't do without it?
For me, I hate that I can only do one evening thing a week, if that. I always have to make choices and I miss out on a whole lot because of lupus/Sjogren's, and I hate that. But then I remind myself that I am working full time, and I'm fortunate to be able to do even that. Should I even ask for more? Shouldn't I be satisfied with what I have instead of chasing after something that could make me even worse? How would I deal with it if six months or a year after taking mtx I ended up with lymphoma, and died from that, not the SLE/SS?!?! How do you make this kind of decision?
Sorry if I sound like I'm whining here, I just don't know...every time I think I have the answer, I second or third guess myself, and I don't want to talk to other people about it. My parents are worried about me as it is, and they're really my only family. My friends try to understand, but they can't because their lives are so different from mine. I don't talk to my colleagues about it, because they totally don't understand. My minister and church friends would be there for me, I know that, but things are so busy for everyone. It's weird, I have such a great support system, but I don't let myself ask for support. At my age (41) I enjoy being independent and not asking others to do things I can do for myself. I could call the social worker at the lupus organization, but I don't want to do that yet. There's a different lupus support group meeting the first week of February with a different social worker, I may ask about it then. Ugh, I just wish I KNEW what the right thing to do is!!!!!
01-28-2010, 08:28 PM
I wish that I could tell you that MTX is totally safe and wonderful, but I can't. It does have some very serious side effects, and I know that Jeff says "I'm sorry" each time that he gives me a shot because he hates seeing me curl up in a little ball afterward and he knows that I feel sick all night.
The reason that I stick with it is that I read that it can actually slow the progression of RA and other AI diseases. I watched my mother and my aunt become more and more crippled by RA. They also succumbed to dementia. My cousins and I were told that it was Alzheimer's, but the more that I read about Lupus and Sjogren's causing dementia, the more I think that was the real culprit behind them both losing their minds. Going down that road myself really scares me, so if MTX will slow down the trip toward what they experienced, I'll go for it.
Long before I had any clue about AI issues, I had a doc remove one of those pesky sores that I used to get. She was baffled when the lab reported T-cells in the sample. She thought that I had something called lyphomatoid papilosus, and was concerned that I could someday have lymphoma. Now I think that those sores were from the AI issues. I haven't had a single one since I started taking the plaquinil and MTX. Hopefully, this is a good thing.
You will have to make up your own mind about this, but this has been my reasoning.