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Needing info on Methotrexate

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Rheumatoid Arthritis
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Posted 8/23/2010 11:50 PM (GMT 0)
My rheumy doctor's office called me last Thursday and said the doctor had
looked at the mri of my hands (had done 4th June) and wanted me to start
Methotrexate and that they would send me info on it, I received the info
today and well this medicine has me scared! and I've been thinking of
opting out and waiting to see what he saw on the mri (which was painful)
of my hands and I see him in October...
So how many here take this medicine and how many have decided not
to take it? I have asthma and that's one of the reason's I don't want to
take this medicine...what do y'all think..any and all replies would be appreciated...
regards..and soft hugz
Posted 8/24/2010 12:52 AM (GMT 0)
If you search for starting methotrexate on this sight the first thing on the search page is a thread titled "Any others starting methotrexate. I'm scared). In that thread you will see stories from a bunch of us starting methotrexate.

I was the one that midway through the first page seemed to have hijacked the thread and poured out my worries and fears. Now I love it.
Posted 8/24/2010 1:13 AM (GMT 0)
ahhh yes....I think everyone of us on MTX has stood in your shoes terrified. After reading the leaflet my doctor gave me when she prescribed it I refused to pick it up.
Well my husband finally talked some sense into me. I was in such bad shape he said you can live in pain like this and get even worse or take the risk.
I started taking it.
Meanwhile I did further research and learned that this drug has been around for RA 25+ years and is very successful with few serious side effects actually happening. Almost everyone with RA is put on it. It is successful with helping almost all people.
I myself experience no real bothersome minor side effects either that would cause me to go off.
The one and only really bothersome thing to me is that I am a social drinker and I am no longer allowed to be on MTX. It is supposed to be so hard on the liver that you are not supposed to drink. It is important to keep yourself very hydrated as well.
BTW- I am fully functional again and I have MTX to thank for it.
All the best to you in finding peace with what you need to do.
Posted 8/24/2010 5:45 AM (GMT 0)
Yes this med is soooo scary and I questioned ever taking it ,but have been on it for 4 years this year with no adverse reactions (touch wood lol).

My Rheumy put it in perspective when I questioned taking it - that the disease will kill me quicker than this med - so here I am still taking it and finding that it works great for my AS (not for my CD worse luck).

Good luck with your decision Charteaux and pop back in to let us know how you are going.

Take care

Jo

Posted 8/24/2010 6:00 AM (GMT 0)
Hi Char, the benefits far out weigh the side effects. I also have asthma and it has never given me a cough but I'm told to be alert if I ever develop a dry unproductive cough etc etc...The worse part of it is on your liver, I couldn't tolerate it with some other meds but then my rheumy switched combinations and I positively love it now. Completely wiped out most of my swelling. I could get jeans over my knees again!

Even when I had surgery I was allowed to stay on mtx, I would hate to come off it now. But I stood in yourshoes and felt quite ill when I first started it. I can fully relate to your fears but its definately worth a trial for a couple of months. Its funny now some of the new meds I'm on have far worse side effects than mtx so now I feel fairly blase about it!!! None of us like taking these toxic meds but they give us back a real quality of life. Worth a try, Char, best wishes, golitho
Posted 8/24/2010 7:18 AM (GMT 0)
Methotrexate is simultaneously a saving grace and a nightmare. I've been injecting MTX weekly for about 10 months now, and although it helped my arthritis immensely, I found it makes me too tired, and I hope that eventually I'll be able to stop taking it, and rely solely on biologics. Some people however, have no discernible issues on MTX whatsoever!

good luck,
Posted 8/24/2010 4:11 PM (GMT 0)
I guess I'm afraid because this is the first medicine for me that has quite a few side effects
that are very serious side effects, and that I'm afraid that my daughter will get this from me
and I hope she will be okay, she already has a heart condition (Aortic Stenosis, open heart surgery) to deal with.
Fear sure can make us feel and act stupidly eh....that one little word...I'll be talking this over with my pm psychologist...
Thanks for the replies they help....I'm also looking at natural remedies, seems like ginger, tumeric and boswellia
seems to help for some...lots of things to consider while waiting to see the doctor...
Healing Hugz
Posted 8/24/2010 6:50 PM (GMT 0)
Hi Chartreux,

My rheumy just gave a script for MTX to me yesterday. I was diagnosed with RA earlier this month and have been on prednisone for two weeks. The predinisone did help, but I know I can't stay on that long term. I am also kind of concerned about the side effects as I have never taken a drug that has such nasty side effects. I am planning on taking my first dose Friday evening. That way if I do get side effects, I have until Monday to get better. I really can't miss any more work for a while. I have my fingers crossed that this will help with the pain for both of us.
Posted 8/25/2010 12:35 AM (GMT 0)
If you are fatigued from MTX-how much folic acid are you taking?
I had side effects, I upped the folic acid to 3 mgs/day and all the side effects disappeared.
Posted 8/25/2010 8:09 PM (GMT 0)
I took 7.5mg/week MTX for about six months last fall/winter and stopped because the costs outweighed the benefits for me. My arthritis is sporadic and appears to be Crohn's-related, so it came and went a lot on its own. When I took my dose each week, it knocked me out of commission for 1-2 days--mainly through extreme fatigue/weakness--which was just unacceptable (as a PhD student, I can't afford to lose that much time), and it appeared to have no real impact on my arthritis. Because of the effect such a low dose had on me, I refused to try a higher dose to see if it would be more effective.

I'm also a social drinker, so not being able to enjoy wine with dinner had a negative effect on my mood on top of everything else.

That said, had I been dealing with debilitating arthritis pain every day for months or years (as opposed to the occasional bout I have lasting anywhere from a day to a couple weeks), I would have been more likely to stick to it. Also, when other treatments such as Remicade are paired with MTX, they tend to be more effective.
Posted 8/25/2010 8:16 PM (GMT 0)
We have not been able to get my arthritis flare under control and it's been over a year and a half now. The only thing that really worked was mtx.  The pills aggrevated my Crohn's, so we did the injections.  The possible side effects never scared me because I'm so used to taking scary drugs for Crohn's.  I absolutely loved mtx but had to stop it because it elevated my liver enzymes.  I had no side effects other than that...no tired feeling, no hair loss, nothing.  I cried the day I found out I had to stop taking it.  I hope it works well for you!

Posted 8/25/2010 11:51 PM (GMT 0)
Hello, I am on methotrexate four a week and have been since 2001. I don't usually feel too swift the day after but am used to that. It makes me tired. I have not lost any hair. I also do remicade every eight weeks. I have had some problems with it and I am closely monitered by the RA doctor. That is very important. If you have a good doctor it makes all the difference in the world in my opinion. As for it making me scared not so much anymore. I call the doc right away if I am experiencing something new and different. I don't like taking it however, I am still walking and I know the pain has lessened some. Good luck and it is totally up to you what you do.
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