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Scared to start Methotrexate

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Old 08-28-2002, 08:02 AM   #1
Join Date: Jul 2002
Location: Austin, TX, USA
Posts: 110
MegHurts HB User
Post Scared to start Methotrexate

Its hard to explain how I feel. Before I went to my Rheumatologist the first time, I was on a bunch of different pills trying to stop the pain but nothing worked really well. I was starting to think I was crazy because everyone raved about Celebrex & Vioxx and all these other pills. I just kept thinking to myself, "why arent they working for me?"

Now Im about to start Methotrexate and am scared to death! With Plaquenil, I wasnt so scared because I had hears wonderful things about it, but then I had an allergic reaction to it and now Im scared to try something strong like MTX. I guess I know I need to take it and I hope that it makes me better, but Im really having a hard time with this one. I havent even gotten my prescription filled yet. Im sure I'll stare at those little pills and pray that they will make me feel better again.

My fiance is supportive and would do anything, but he cant understand my fears about the medicine. I think he thinks I'll be better magically and we wont have to worry about this forever, but truth be told Im terrified that I'll end up taking MTX and a bunch of other meds too. I dont want to be a slave to medicine my whole life.

Im scared because of the side effects (and the after effects) and at the same time Im scared of having to go through the 'adjustment phase' while they figure out which dose is best for me. Im scared of what my moods will be like and how my fiance will react.

I just know that when Saturday night comes around (ugh, only 3 more days), I'll probably cry myself to sleep after taking them and hope I wake up feeling okay.

I have so many questions about it still though. Like how much Folic Acid should I take? And when should I take that, before or after the MTX? Will it upset my stomach too? How will I know if Im taking enough? Some people say they take as much as 5mg, whereas my Rheumatologist only prescribed me 1mg. Is that enough?

I know Im struggling to accept that I have to be on MTX. My doctor didnt want to prescribe the sulfa drug for me because my family has a history of sulfa drug allergic reactions. So perhaps this is the best next step for me, it just seems so toxic. I mean, its so powerful that you only have to take it once a week... just a like a chemo drug... that scares me.

I guess its just one of those days when I feel overwhelmed with it all..... thanks for letting me vent some....


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Old 08-29-2002, 06:55 AM   #2
Join Date: Apr 2002
Location: Northern Virginia
Posts: 440
Hellokitty1973 HB User

Hi Meg -

Try not to get too crazy about this medication (or any other for that matter). I know it all seems to scary and unknown right now. What has made me relax more and more lately is realizing that tons and tons of people are taking these drugs for all different autoimmune disorders and most people are doing great. (Ironically, my cousin was diagnosed with Lupus this year - and she's only a few years older than me. She just started on MTX, too.) Certainly you always have some people who don't respond well, but I think those are the ones who were too far into the disease when diagnosed or those who are progressing quickly.

I too am afraid of being on medicine for the rest of my life, but you know what? There are so many other treatments on the horizon - those that are more effect and have less and less side effects. That's what keeps me going. I know that in 5 years or 10 years, there WILL BE better options for us. And, it really sounds like you have a great chance of putting this into remission and putting it to rest!

So, as easy as it is for me or anyone to say it, try not to be too upset. You may suffer little to NO side effects from the MTX at all! And I am confident you will feel better very soon - all of us will!

Post this weekend after you take your first dose and let us know how you made out. I definitely think taking it before bed is a good idea!


Old 08-29-2002, 09:17 AM   #3
Join Date: Jul 2002
Location: Austin, TX, USA
Posts: 110
MegHurts HB User


Thanks for posting. I think I was just having a rough time dealing with all this and sometimes I feel totally alone in my battle. I know that my family supports me, but its ME that is going through this, not them. I have to live with it day in and day out and sometimes I think it just gets me down.

Im thinking about making an appointment with a therapist so I can "dump" on someone other than my loved ones. I just have a lot of feelings about this that make me feel confused. And I know that the meds can cause some of mood swings, so that might just be part of this. But if thats the case, I definitly would benefit from a therapist. I dont want to drive my family crazy. Ya know?

Anyway, thanks for posting. Sorry to vent. I'll post on Sunday when I wake up and see how I feel after the 1st dose. Thanks for listening! Its greatly appreciate... more than you know.


Old 09-24-2002, 01:00 AM   #4
Join Date: Sep 2002
Posts: 3
EmilK HB User

I have had JRA since age of 2 and have taken Methotrexate and currently use Naprosyn. Never have I had any problem with either drug, so don't feel scared. The only thing that scares me is hip replacement which sooner or later will be neceassary ;-)

Old 05-17-2009, 02:52 PM   #5
Join Date: May 2009
Location: Miami, Florida USA
Posts: 1
jamm47 HB User
Smile Re: Scared to start Methotrexate

Has anyone used this drug for Bilateral Meniere's Disease? I just started my MTX on Friday 10 mg, taking 1 mg of folic acid every nite. ITs hard to tell if I have any side effects from this since I usually have migraine type headaches all the time. My biggest question is this? If you take the drug ONCE a week, does the drug keep working the other 6 days? If I were to get side effects how soon would they occur? Thanks for sharing any information. This MTX was used on meniere's patients back in 2000 with great results so my rhemo thought since I have tried everything else under the sun, I might give this a shot.

Old 05-18-2009, 02:57 AM   #6
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idunno HB User
Re: Scared to start Methotrexate

I too was reluctant to take mtx. I have had a year, 48 sessions of chemo for colon ca . They used 5flourouracil. It is similar to meth. I am now on 20 mg weekly of meth. I take it in two doses . One on Sat night and one on wed nite. I know the feeling of chemo ,yes there are vague similaraties. Lips and tongue a little tingly. Eyes a bit gritty. slight nausea the second day after I take it,but really nothing too bad at all. I take 5 mg of folic acid on sunday , 15mg of leucovorin monday and 5mg of folic acid on thursday. In four months my blood tests have shown an 80% reduction in inflammation. My liver and kidney functions are fine. I have been a ca survivor for over 11 years and there don't seem to be any long term side effects from that chemo. I'm trying to regain some of my old lifestyle that has been taken from me by ra and poly neuropathy. The meth is helping with the ra and lyrica is helping with the neuropathy so I feel the risks are worth the quality of life for me. Ron.

Old 05-18-2009, 04:49 PM   #7
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Re: Scared to start Methotrexate

I've been on MTX at 20-25mgs/week for the past 5 years with much success. I have RA. I do a self injection once a week and take 2 mgs of folic acid everyday. I have had problems with MTX causing stomach ulcers in pill form so that's why I went to the injection but recently got an ulcer from the injection as well. MTX slows cells division so the stomach, where the lining of the stomach replaces itself frequently, is at greatest risk for complications. I do mine at night so that if I get a tired feeling, I sleep through it. I usually get a bit of a "high" the next day with tons of energy.

As for it being a great anti-inflammatory, it has helped a lot and is well worth trying. The only thing stronger is steroids and they have way too many side effects, some that can be fatal. MTX at these doses has very few at these levels and can be taken for years. If it bothers your stomach, ask to go on injections. They are done with an insulin syringe and the fluid is painless. Hurts less than a mosquito bite.

good luck................Jenny

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