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Thread: MTX has helped in some areas, but not in others.

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    Default MTX has helped in some areas, but not in others.

    After being on and off with the MTX ( liver issues), I have been back on it since May.
    It has really helped me with the Sjogrens symptoms, like dry mouth and dry eyes, those two issues are almost resolved. I had really bad hairloss, before I started MTX, now it is gone.
    I was hoping for pain relief, in my joints, muscles and tendons, but no luck, the pain is still a high 6 on the scale, sometimes even more.
    I will see my rheumy on Oct.1st and ask him for other pain killer options, since all the usual ones, like Hydrocodone, Tramadol and others are giving me the itchy willies. Do you think, I should ask for a low dose Morphine? I can't handle this pain any longer.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    I'm hoping you get a good answer from either here or your doc. I'm on my 4th dose of MTX and the side effects are horrible. I stick with making myself sicker in the hopes to be better in a couple months. I think I would be disappointed if all I get is relief from dry mouth and dry eyes, and hair loss. The fatigue and joint pain has to go in order for me to get back to work... I've got all my eggs in this one MTX basket right now, and that basket just keeps getting heavier since I'm not feeling any relief yet.
    I am on methylprednolosone to help with the joint pain until the MTX kicks in, and phentermine for the fatigue, and to combat the steriod side effects. The phentermine is great for my fatigue, and has been great for helping me stop eating everything in sight from the steriods. The steriods helped make my joints functional again, but I still have some pain and stiffness daily. It does help significantly on the level of pain daily.
    How long have you been on MTX?

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    Quote Originally Posted by Abbyrition View Post
    I'm hoping you get a good answer from either here or your doc. I'm on my 4th dose of MTX and the side effects are horrible. I stick with making myself sicker in the hopes to be better in a couple months. I think I would be disappointed if all I get is relief from dry mouth and dry eyes, and hair loss. The fatigue and joint pain has to go in order for me to get back to work... I've got all my eggs in this one MTX basket right now, and that basket just keeps getting heavier since I'm not feeling any relief yet.
    I am on methylprednolosone to help with the joint pain until the MTX kicks in, and phentermine for the fatigue, and to combat the steriod side effects. The phentermine is great for my fatigue, and has been great for helping me stop eating everything in sight from the steriods. The steriods helped make my joints functional again, but I still have some pain and stiffness daily. It does help significantly on the level of pain daily.
    How long have you been on MTX?
    Hi Abby,

    Are you on the MTX pills or shots? If you are on the pills, ask your rheumy for the shots, they are much easier to tolerate. I am on the shots and the only side effects I have, is the day after the shot, I am very weak.
    I am back on MTX for about 4 months now. It is the 5th attempt, I usually have to stop after a few months, because of my liver.
    Well, I am going to tell my rheumy, if I don't get more relief from it, I don't want to take it anymore. Why put poison in your body, if it doesn't do much good.
    Last time I was on the MTX, I have had significant pain relief from it, but it was a higher dose, the doc doesn't want me to go on that dose again, in order to not put to much strain on my damaged liver.
    The only thing that takes care of ALL my pain, dryness and hairloss, is steroids, too bad we can't take those for ever.
    BTW, four weeks of MTX, is not long enough, to feel the full effect of it. So hang in there, it may get better, with a little more time.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    Abbyrition (09-06-2013)

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    I'm on pills. My side effects from the MTX are weakness the day after, and half the following day. (I take them Wednesday night with supper, then Thursday morning I start taking the folate. With the new folate the doc perscribed it seems to help the nausea. By Friday mid morning I seem to be my normal Lupie self again. The doc mentioned shots last time, but I tolerate the "idea" of pills better than giving myself injections, so if the weekness is the same with pills or shot, I'm going to try to stick it out with the pills. I would always second guess myself that Inwas injecting it correctly, and thwt would be particularly harmful at the moment as I'm not getting the positive reinforcement from the MTX to know I was doing it right.

    Thank you for the kind words and encouragement. I was beginning to feel a little defeated, in particular yesterday being my day after MTX day, and wondering why am I poisoning myself for no results. So, encouragement needed & welcomed!
    I know it's hard on the liver, but from what my doc says that it may take 6 months to see results and get me back to work, do you even get any benefits only taking it 4 months at a time? Once you build it up in your system does it just stay there so when you stop and start again you don't have to wait as long for the effects to kick in? If you don't stay on the 4 month rotation, what's next for you? My doc says if MTX doesn't work we go to Cellcept.

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    Abby,

    Like I said, when I took the MTX before, it helped me a lot, but I was on 15mg, now, to not damage my liver to much, I am only on 8mg. That is not enough to take care of all my problems, so why take it. You know what I mean?
    The injections are a piece of cake, they will show you at the doctors office, but if you tolerate the pills, there is no reason to go to the shots. Like I said, the day after the shot, I have slight nausea and bad weakness, the day after that, I am back to normal.
    I mean, I know, it is helping in some areas, but not in the pain department.
    What is really weird, some people start loosing their hair from the MTX, my hairloss stops, from taking MTX. My rheumy said, it's because the Lupus is causing my hair to fall out.
    Give it more time, it could work as well for you, as it has for me before.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    Abbyrition (09-07-2013)

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    I just wanted to reply to your question about the morphine for pain relief. I have found it to be very helpful. I take 60 mg. Two times a day. I started on a lower dose but I have been taking it for quite some time. It is worth a try. I know when the pain is somewhat controlled you can try to lead a more normal life. I am having a bad flare right now so nothing seems to be helping me right now. Good luck at the docs.

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    8mg Mtx/week is very low...it might not be enough to take care of symptoms. I know it is always a balancing act with the liver.

    When I went on Mtx we started with 10mg/week and worked up to 25mg/week.

    I was having trouble with side effects - just like you said - feeling bad the following day to day-and-a-half. My doc suggested splitting the dose so I take half the dose one day and half another. Also, we backed off to 20mg/week - so now I take 10mg Monday night and 10mg Thursday night. It works GREAT for me - I sleep through any side effects, and feel my best the next day. He also has me taking folate every morning (800mcg). Some people advise against taking Mtx twice a week, but if you read the literature and look up the proscribing advice, it all indicates that it can be taken once OR TWICE a week, as long as the weekly recommended dosage is not exceeded, and it's not taken MORE than twice a week.

    I have been on this regime for about 18 months and all my liver and blood tests look great.

    Just something to consider, and maybe ask your doc about, in case it also helps you.

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    Abbyrition (09-28-2013)

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    Thanks SleepyInSeattle. I did let my doc know about the nasty side effects. He replaced my folic acid pills with a med called Leucovorin. (a different kind of folate) and for 2 doses, I haven't had side effects! However, he added cellcept in my cocktail this week, so I may have all new side effects to deal with. (I haven't started them yet... Tomorrow).

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