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Thread: Just a bit of support really regarding MTX

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    Default Just a bit of support really regarding MTX

    Hi everyone

    My Rheumy put me on MTX 10mg once a week for my sjogrens as it is getting really bad - I am to have bloods done monthly to be monitored and I see him in 2 months for an update.

    I have mild hair thinning from the disease itself which is kept under control with steroids which always cause excessive hair growth with me. I am really nervous of this drug - I took my first dose the other day and had mild nausea which lasted about half an hour, I had severe chills in the night as in I was so cold I couldnt sleep despite being wrapped up. The next morning though I felt fine.

    Just really scared all my hair will fall out - is it a foregone conclusion that I will lose my hair on this dose? I do have a lot of hair and the hairdresser said in a recent flare, it had thinned a bit but you would never guess it.

    I shouldnt have read the side effects - I really shouldnt and I wont again but cant help being nervous.

    How did you all get on with it? My second dose is due next week - is the first dose any indicator of how you will feel with future doses? If so, I feel fine today.

    Sorry for all the questions, just looking for some reassurance - I couldnt take Imuran, whats the difference between Imuran and MTX?

    Thanks in advance.

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    First thing that you can do is breathe. Most likely none of the things that you have read are going to happen. Actually, the first dose is where you usually experience the worse side effects. Each week gets easier and by the 3rd or 4th week it is like any other med. On these low doses you don't lose hair, few people vomit although some have upset stomachs the first couple of weeks. If you continue to have stomach problems they will usually change you to the injections instead of the pills and that fixes that issue.

    No need to panic. This isn't the dose they use for cancer and that is the dose you were reading the side effects about.
    Mari

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    Corella (10-06-2012)

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    Thank you so much.

    I have only had mild waves of mild sickness which pass quickly, one thing - I have just finished my housework and I feel totally wiped out so am just going to relax now. At least it is only once a week - that is something.

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    I have been on 25mg/week for about 6 months now....at first, I had some mild problems with it - mostly fatigue/general ickiness. Doc told me to break the dose up and take it two days a week (12.5mg each dose, Mondays and Thursdays) instead of all at once, and that works well for me. I take it in the evening, after dinner (when my stomach is full). I have not had a problem with nausea, and usually by the time I watch a TV show after dinner I am feeling drowsy and go to bed. I sleep through any fatigue/unpleasantness, and wake up the next morning feeling pretty good! In fact, I usually sleep best on my Mtx nights.

    It has helped me feel a lot better - it is really weird how taking "poison" twice a week can make me feel SO much better, but it does. My energy levels are 90% of normal now - something that hasn't happened in probably 7 years.

    I have lost hair....it continued slowly thinning for several months, and now it seems to have stabilized. My Rheum said that's pretty normal. it's not so much that anybody but my hairdresser and I would notice it, though. I don't love it, but it's an okay tradeoff for feeling so much better!!!!! We're planning to try dropping my dose a bit after a full year, and hopefully some of it will re-grow then. In any case, I think it's worth it to feel better.

    The other side effect I have had, unfortunately, is ACNE. It's not listed as an official side-effect, but my Rheum said he sees it a lot. I am still trying to learn how to deal with it effectively. My regular doc suggested a prescription cream but my insurance won't cover it and it's $217!!!! So for now I am trying different OTC things to see if I can get it under control that way. I am 44 and shouldn't have to deal with this, LOL....it's like being a teenager again, only without the benefits of youth... :-P

    It's usually only 2-3 zits at a time, but they're big and painful - and of course, UGLY. *sigh...*

    But again - way better than the disease!

    I guess we have to make some trade-offs. I drink lots of water, eat very well, and completely avoid alcohol, because I know Mtx is hard on my liver. I get bloodwork done every 2-3 months to check that my body is handling it all okay.

    I was very afraid to go on this medication, but it's really been a blessing so far. I hope you find the same thing. The first few weeks are the toughest, and then it gets better as your body gets used to it. Some people really CAN'T tolerate it, but there are alternatives. I guess you just have to see whether it's the right thing for you. All the medications have side effects - it's just a matter of finding which one works best with your own body chemistry, with the best benefits and fewest side effects.

    Best of luck....!

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    So glad it is working out well for you Sleepy!

    Corella, you need to remember that she is on 2 and a half times the dose you are though. The side effects for her will be greater than yours. At 10mg there are very few side effects so you really have little to worry about, at least most people don't. If you do then you will go back to your doc. As sleepy said, it is much better than the disease either way.
    Mari

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    I loose hair, when I flare( nice rhyme), with or without MTX. When I took MTX before, for six months, I did not have any bald spots, just alot more hair in the drain, but like I said, I had hairloss before MTX, just from the Lupus itself.
    I take my shot, it is now at 25 mg, on tuesday night, the next day, I am very weak, but by thursday, I am back to normal. I don't have nausea.

    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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    tgal (10-06-2012)

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    Yeah - just to be clear about the dose, mine definitely is high this first year - I had autoimmune hearing loss, so they really needed to hit me hard with something. If I can stay healthy on the 25mg/week, we'll keep that up for about a year - hopefully sending the autoimmune stuff into some kind of remission or partial remission - then the plan is to back down on the dosage until we find a balance between symptoms and dosage. Hopefully I can get down into the 10mg/week range and not have further hearing loss or other symptoms.

    I am also on Plaquenil, if that info helps at all. I had been on the Plaquenil for about 6- 7 months when the hearing loss occurred, so apparently the Plaq alone wasn't enough.

    Everybody's different!

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    Well I think I have been very lucky - I had a slight wave of sickness which passed and felt very cold and tired at times through the day but feel totally normal now. I think considering I am on steroids and have been for 7 months and now this, I can only think that my immune system is running overtime - when the entire office went down with flu, I was literally the only one not affected - I never get colds.

    Anyway, aside from feeling chilled again in the night - nothing to report.

    Oh a question for the ladies - I had my brazilian wax and leg wax done yesterday, does anyone know if I can continue this on MTX? I do it on steroids and they suppress your immune system, just wondering about MTX? I hate shaving and dont get on with cream.

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    being male........
    i will not comment on brazilian. lol

    but i will comment on mtx.
    when i was on amounts over 20mg i had hair loss.
    but i am currently on 10mg and have no extra hair loss.
    just slow even thinning from age.

    other things that may help side effects..............

    i take mtx in the morning, then eat straight afterwards.
    food on top of mtx does not effect the mtx.
    but it reduces the effect of mtx on the stomach.

    i use folic acid the day after mtx.
    please speak to your doctor about this.
    mine insists on it.

    side effects usually are greater, when a medication is new.
    asyour body becomes accustomed to the medication, the effects are usually less.

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    Corella (10-06-2012)

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    I took mine in the evening with my meal - feel totally fine today.

    My Rheumy didnt prescribe Folic acid, he said he might later down the line if I get side effects but otherwise not. I do take Biotin each morning though and have done for a while.

    Wonder why some prescribe Folic acid and some dont?

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