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Question about methotrexate

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Posted 9/13/2008 11:23 PM (GMT 0)
I was diagnosed with SLE in 2002. I have tried most typical treatments (cytoxan, cellcept, prednisone etc) and had some significant remissions. To ward off prednisone side effects (including nightmares, sweating, and mood changes) we decided to add methotrexate (IM injections) in order to taper the prednisone... The MTX has been wonderful in getting rid of my symptoms (pleursy, joint pain, etc), however I have noticed two things: First, I am extremely tired- not mentally but physically so much that I can hardly stand up for a few minutes at a time and Two (what I am much more curious about) is that no food seems appealing at all. Not even remotely. I have been on MTX for a few months and this started a few weeks ago. Has anyone else experienced something similar?

Thanks
sharky
Posted 9/14/2008 12:48 AM (GMT 0)
Hi Sharky!! Welcome to the forum!! Do you have your injections once a week? How much MTX per injection? Lots of us have used the once per week pill form. I was taking 20mg/week . . . so that is a pretty mild dose. I did experience sleepiness for a day or so after each dose . . . but the fatigue actually lifted a bit with the MTX. You sound like you might be going into a flare . . . but I'm not experienced with the injection form of MTX so I'm hoping some of the others who have used injections will post. Glad you found us!! Blessings!
Posted 9/14/2008 12:56 AM (GMT 0)
I do once weekly injections and take 8mg zofran. I am what would be termed at "pharmaceutical cheap date" (ie a little bit goes a loooong way) so i am maintaining on a 7.5mg dose. We actually think it may be adrenal fatigue so I am scheduled to do the cortisone test next week to see what the deal is...

The mtx has made a WORLD of difference for me, and my cell counts are still good so I am hoping to continue it- possibly with a TINY bit more prednisone...

sharky
Posted 9/14/2008 1:16 AM (GMT 0)
Ohhhhhhhh . . . I missed the prednisone taper. I haven't had to use pred except for some quick tapers . . . but here is what I understand about it . . . which may be helpful to you. Our adrenal glands make cortisol which is equivalent to about 7 mg/day of prednisone. When we take prednisone/steroids for an extended period of time, our adrenals stop (or slow) making our own supply. Once we taper down under 10 or so, our bodies start to push the adrenals back into action. That's why the low end of the taper has to be w-a-y s-l-o-w-e-r. It gives your body a chance to start producing its own again. The end of your taper may take a very long time . . . and you may be stuck at a low dose for a long time. Ginny and Lynnwood are really helpful with the prednisone info. Hopefully they will see your post. Its good that the doc is checking your cortisol levels. Blessings!
Posted 9/14/2008 1:25 AM (GMT 0)
If it is helpful I have been on prednisone ~7 years... I was tapering ~1/2mg per month
Posted 9/14/2008 4:07 AM (GMT 0)
What dose right now?
Posted 9/14/2008 8:37 PM (GMT 0)
Be sure and take plenty of folic acid with MTX. I hope you feel better soon.
Posted 9/14/2008 10:50 PM (GMT 0)
I was done to 2 (its a MIRACLE) mg and was doing fine for 6 weeks then all the sudden the bottom dropped out. I am taking the daily 1mg folic acid that is recommended as well.
Posted 9/15/2008 2:07 PM (GMT 0)
It doesn't sound like the MTX is your problem, but just in case....You can take more than 1mg to help with the side effects. I take 5mgs.
Posted 9/23/2008 4:23 PM (GMT 0)

AlwaysRosie said...
Ohhhhhhhh . . . I missed the prednisone taper.

I haven't had to use pred except for some quick tapers . . . but here is what I understand about it . . . which may be helpful to you.

Our adrenal glands make cortisol which is equivalent to about 7 mg/day of prednisone. When we take prednisone/steroids for an extended period of time, our adrenals stop (or slow) making our own supply. Once we taper down under 10 or so, our bodies start to push the adrenals back into action. That's why the low end of the taper has to be w-a-y s-l-o-w-e-r. It gives your body a chance to start producing its own again. The end of your taper may take a very long time . . . and you may be stuck at a low dose for a long time.

Ginny and Lynnwood are really helpful with the prednisone info. Hopefully they will see your post.

Its good that the doc is checking your cortisol levels.

Blessings!

I am so glad that all of you are willing to reprint or speak about things more than once.  It is easier for me to remember things if I hear them more than one or two times. 

Thank you

Hester

Posted 9/23/2008 4:33 PM (GMT 0)

I've been taking mtx for quite a while now, and I still have mild nausea and fatigue a few days after taking my weekly dose.  I take 15mg/week.  I've noticed that some weeks are much better than others, though, with respect to the nausea.  On a good week, I simply won't have an appetite.  Occassionally, the day after I take it I'm severely nauseated, but can manage light food and plenty of fluid.  The nausea and fatigue, I'm hoping, will disappear in time.  I've been taking mtx for a little over a year now.

Mtx has made a world of difference for me as well.  I hope it does for you too.

El

Posted 9/23/2008 11:05 PM (GMT 0)
I agree that more folic acid may be needed. I take 3mgs per day and the very first day I started doing that the fatigue vanished and I have not had any problems with the mtx since.
Sj
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