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Any others starting Methotrexate? I'm SCARED!

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Rheumatoid Arthritis
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Posted 6/24/2008 1:40 AM (GMT 0)
My rhuemy told me to take folic acid every day. Why would you wait until 4 days after the injection that makes no sence to me. But yes folic acid has been tested at 5 mgs per day and it does not effect the efficacy of mtx at that dose but does reduce toxicity. If you goole Methotrexate and folic acid you will find a clinical study on the efficacy of mtx when folic acid is used. I would not wait four days I would take the folic acid every day.
Wow, he started you on a high dose most of us start at 10 mgs oral and build up slowly to 20 and only go to 25 if its helping but not enough.
Sj
Posted 6/24/2008 1:44 AM (GMT 0)
Yikes!! Yeah probably why it kicked my tush then huh? ugh.... I think I'm in trouble again this week.
So your taking 5mg of folic acid a day??? Yeah I wonder why he has me waiting. Hmmmm.....
Off to google....lol
Posted 6/24/2008 1:46 AM (GMT 0)

Check this out

“People taking methotrexate should also take folic acid 5 mg weekly, as this reduces mucosal and gastrointestinal adverse effects. Folic acid can also lower homocysteine levels raised by methotrexate (associated with pro-thrombotic action). Folic acid should be started 2 days before starting methotrexate. Note: it does not reduce the efficacy of methotrexate.”

 This should you should start it 2 days before.    hmmm.... 

Posted 6/24/2008 2:04 AM (GMT 0)
You will find all kinds of recommended dosages and schedules. I did a lot of searching before going from the 1mg a day my doctor prescribed (which she told me to start 4 days before taking the first dose of mtx) to the 3 mgs I am now taking and found that lots of research has been done at up to 5 mgs per day. I went up to 3 without telling my doctor but when I told her at my next appointment she immediately asked if I wanted her to write a new script at that amount-Its cheaper to but it at GNC so I just do that.
Posted 6/24/2008 2:36 AM (GMT 0)
I'm going to try and take a little before injection this week and then the rest after and see if that helps.
If this hits me hard again my doc said he would reduce it but wanted me to stay the same this week
and let him know. I'm just scared...I don't want be knocked down like I was again....
Posted 6/24/2008 7:54 PM (GMT 0)
Hi guys,
I'm new here but i wanted to add my two cents i was on Prednisone for 21 years and have finally got off it Yeahhhh i did a few years back inject MTX and i felt horrible for 3 out of the 7 days after taking it and yes i lost a lot of my hair i went from lovely long hair to a very short and spiky look so no one could tell it was falling out... this worked well ater 19 months of feeling crapy i decided that after my knee replacement that i wouldn't restart and i didn't went through tons more meds trying to get the balance as for most of you i'm sure meds would work for a while then stop working.
i now take Azulfidene, Rituxan for my JRA the first couple of treatments with the Rituxan worked well but the last one i did had no impact at all so they decided i need to go back on MTX and against my better judgment i did i'm on my second month 6 pills on a Thursday and apart from feeling a little queasy and a bit foggy i can handle that all seems to be going in the right direction i will be getting my next rituxan treatments in Aug. hopefully this will work better now! as for taking the shot of MTX i would ice the area to be injected and it seemed to help good luck
Posted 6/24/2008 8:19 PM (GMT 0)
I take 1 mg daily of the folic acid.. except for the day that I take my MTX and the day after.. on those days, I double my dosage.. as well as double my dose of B Complex Vitamins.. my rheumy and my Primary told me to do this.. I also have to take prilosec (due to my GERD) and they said to double my dosage of that on those days as well.. since I've been doing that, I feel a lot better.. I also take my dosage at night.. so I sleep through a lof of the side effects.. good luck
Posted 6/25/2008 8:27 PM (GMT 0)
After reading all the comments and visiting a relative who is on MTX, I made an appointment for next Wednesday July 1 to get started. I am not severe yet but I can see this RA stealing my happiness.

I have taken Carlson's cod liver oil every day for the last 4 years.

I have found that it eliminated my knee pain (auto injury) and I have not had GERD since starting it. I used to take Prilosec and have not in 4 years.  My GERD was so bad I could not stand to wear a bra.  Very painful!

I plan on starting Folic Acid on Tuesday and continue with the cod liver oil, Lemon flavor is the best.  It is a little pricey but worth every penny. I hope this sharing has helped someone reading this.

Post Edited (Bonnie Sue) : 6/25/2008 2:48:16 PM (GMT-6)

Posted 6/25/2008 11:30 PM (GMT 0)
Good Afternoon MTX Boardies,

It's Kathy here, the O.P.

Today I passed my motorcycle riding skills test! I have a "fully hot" motorcycle endorsement on my driver's license for the state of Florida. It's true that I need to polish up my skills and wait for monsoon season to pass but hubby and I are going to head for Key West. We've lived within striking distance forever but have never gone. It's time to do something weird and random and FUN.

On the cusp of being an empty nester I DIDN't want to set up shop on my couch and knit. Because if I was going to learn something new I sure don't need anything knitted in south Florida and I was looking for something that was outside my comfort zone. Yamaha Mama! Kathy has Harley boots.

I feel like a MTX success story. It didn't happen overnight nor was it free of incident. At one point I went back into see my doctor feeling like I had week long flu or maybe a date with the front end of a Mack truck. My rheumy jumpstarted me with a steroid shot and increased my MTX one more line on the syringe. I'm up to .8 and holding. And feeling great.

It's not the years in your life, it's the life in your years.

Head's up young people!

Kathy (model year 1954)
Posted 6/26/2008 4:40 PM (GMT 0)
Ok I'm really nervous today. Tonight I have to give myself 2nd injection. (YIKES) I'm just really scared that its going to knock me down like the first one last week. I have to call my doctor Monday and let him know how I did with it. He said if its rough he will decrease the dosage, but wanted me to keep it at the 25mg again this one. :-(
Posted 6/26/2008 8:25 PM (GMT 0)
LBJ, The only thing to do at this point is drink some extra water, take some folic acid, and then do the same tommorrow. I do think that will make a difference. My first dose was the worst the second was still bad but everyone after that got easier. Good luck and let us know how it goes.
Sj
Posted 6/26/2008 10:29 PM (GMT 0)

SJ-

Thank you for the advice!!   Fingers crossed!!!   :-)

Posted 6/28/2008 4:26 AM (GMT 0)

This is a very interesting thread.

I've been on MTX for a few years now.  Started off with just a few pills of MTX and a high dose of Pred, but quickly escalated up to 8 pills per week (I was in a VERY bad way).  I've not had a single hint of any side effect even if I take the pills on an empty stomach.  It took a looooong time - several months - for it to start working and thus taper off the Pred.

Long story, but had to add Enbrel.  Am still on the MTX but basically due to some diet and exercise I've lost weight to the point the rheumy slowly reduced the MTX dose and I'm down to 5 pills now.

I have some questions though to the people who take more than 8 pills:  I've been inundated with information from my very knowledgable rheumy for the past several years and don't understand a lot of it and place quite a bit of trust in her (see the next paragraph below), and I could have sworn she said 8 pills was the maximum you could take in pill form.  For those 9+ people - what mg are each of your individual pills?

And I agree with Journeyman's post in the middle of page 3, and think that most doctors are suspect in their motivations and their knowledge.  But I think if you can find the right doctor then it is going to work.  I really don't think there are many truly good doctors out there though.  I trust my current doctor because she diagnosed me instantly and put me on medication that immediately started improving my horrible situation and has worked with me competently and caringly ever since.  Although diagnosed around age 34 or so, I suspect that I've had arthritis since about age 15; that it was symptomatic enough to be correctly and fairly easily diagnosed starting around age 23 and yet up to this point and after my symptoms were frustratingly explained away and one docotor actually laughed at me; that the quacks who examined me between the ages of 24 and 33 were completely incompetent and one guy even possibly flirted with malpractice after barely glancing at my swollen knee and suggesting "exploratory surgery" when the x-rays looked fine (I grabbed my x-rays from this doctor's office and took them to the only doctor I've ever believed to have any intelligence - a podiatrist I saw decades before - it was the smartest thing I've ever done!); and I believe that he and my current rheumatologist that he referred me to are both saints! 

Posted 6/28/2008 1:32 PM (GMT 0)
Hi leeloo67- Thanks for your input on MTX. I love knowing what its like for others who are on it. I can't answer your question about the pill form since I'm on the injections, but that's great that you get no side effects!! I'm hoping as I continue with these injections that my side effects go away!!! LOL I'm also glad to hear that you have great doctors! That is so important when we're dealing with things wrong with us.
I wasn't too sure about my doctor there for awhile a few months ago as I was upset with something he had told me. So I went for a second opinion and 2nd opinion doctor actually made me feel alot better about my doctor and basically told me I was with the best doctor I could be with. So it was nice to have that reassurance. And now I believe after my scope I had last week, that him and I are back on the same page again!!


Now to talk about my MTX injection Thursday night. This one seems to be going much much better!!! Friday I started feeling funky at work about 2pm. As the hours were going on the stronger it was hitting me. But I was able to stay at work and get home. about 8pm last night I got super tired and felt like I had been up for the past 24hours. I went to bed and slept pretty good last night. My husband let me sleep in this morning so just got up about 9am. I don't feel too bad here this morning. I'm able to function and play with my 2 year old son here so that's a good sign!!
This one was nothing like last weeks!! So I'm pretty excited!! Hopefully today will continue to be a good day.
Posted 6/28/2008 1:45 PM (GMT 0)
LBJ,
Thats great. I'm glad this week isn't as bad as last week. As I said before, for me, each week just got better even when I was in the process of increasing the dose-hopefully that will happen for you as well. It took a few weeks before I saw definite improvement from being on MTX but by week 8 I was completely off prednisone with no recurrence of symptoms so for me that was a major improvement. I hope it works as well for you.
leelou I agree there is nothing like haveing a good doctor. I think my current rhuemy is the only person on earth that could have convinced me to try this drug.
Sj
Posted 6/28/2008 2:52 PM (GMT 0)
yes i have been on methotrexate, and now on to different medication. At first it worked great. I felt liie a new person. Then as time went on, it's effecte became less. Your Dr. will moniter your blood work very closely. You will be fine. Believe me, you do not want to wait. I did thinking nothing worked, and now i'm worse off than ever. Please take care of yourself.
Posted 7/1/2008 9:10 PM (GMT 0)
hi i was on mtx for 3 years it helped some till i got autoimmune hepitis so im back on predizone. im not a good speller but i try tongue
Posted 7/4/2008 12:32 AM (GMT 0)

This may sound silly, but I have a question about the pills.  Are they horse pills??? LOL   I talked to my GI Monday night and had asked him a question. Well I found out I am going to be on this longer than 12 weeks.  He said he just isn't sure if he is going to keep me on the injections or change me to the pills.   I hate stabbing myself weekly but I also HATE taking horse pills.  So if the pills are huge, I'll just keep sticking myself.   yeah

Posted 7/4/2008 12:34 AM (GMT 0)
LBJ-they are tiny smaller than baby aspirin, I take all six of mine in one swallow.
Not silly at all in my mind I had built them up so they were bigger than those chalky calcium pills.
Sj
Posted 7/4/2008 1:52 AM (GMT 0)
Thanks Sj!! I feel better now!!!! LOL
Posted 7/16/2008 12:37 AM (GMT 0)
Hi Arthritis Boardies,

This thread has been such a blessing to me. It truly helps to see how others are doing and how you are handling your improvements, setbacks and side-effects.

MTX has been a really GREAT choice for me and has allowed me to get back to my life with some zip in my step.

I'm just returning from a very active 2 week family reunion that included swimming in the Atlantic and hiking part of the Appalacian Trail. Thank you Rhemy and MTX. I kept up with people half my age and didn't even breathe hard.

I started MTX near the first of the year and am still noticing improvement.

If you are just starting this treatment be patient. Stretch before you exercise. Take up a new hobby. Do something wierd and fun.

Keep the faith!

Kathy
Posted 7/16/2008 12:44 AM (GMT 0)
Kathy, I feel exactlly the same way. I love the fact that I am off the prednisone and still feeling better than I have in years. I can do almost anything now and no pain. I have only been on mtx since april so about three months and my rhuemy thought I would just be starting to feel the effects at this point and I still only take 15 mgs.
Sj
Posted 7/16/2008 6:30 AM (GMT 0)
When I first started MTX., my Dr. also had me on Humira. The combination seemed to work well, but the side effects were more than I cared for. I just felt tired and like I had the flu all the time. I also had severe female problems when I was taking them both. Now that I am just taking MTX. they are less but still there. I would get cramps with my cycle so bad that they mimiced labor pains. I would just cry and shake for about 2-3 days. It's better now. Regular Folic Acid isn't enough (according to myDr.) I take Leucovorin which I guess is somewhat different. Give it a little more time to work...it took about three months for me when I first started. I do have some issues with my hair falling out, but I don't know that it's the MTX.
Posted 7/17/2008 5:32 AM (GMT 0)
I have arthritis in my ankles ,can barely walk what works good on ankles,Dr said fusion,i dont want that,,,im so tired all the time and weak,,it wears me down this pai,,I trie mtx and didnt help me celebrex they can throw that stuff away,,dint help me now on aleve until i see a NEW remutgist soon
Posted 7/22/2008 5:24 PM (GMT 0)
sjkly- Your not going to believe this, and I didn't think the day would come for me to say this (LOL) but I think this stuff is working.
I'm still not all impressed with its side effects. Ok but I'm back down to 20mg of prednisone and my joints are feeling pretty good
and my bowels are ok and my stomach isn't a mess like a few weeks ago when I came down to 20mg. Hmm...
I think this is a sure sign that it is doing something. Now if the dang side effects would just go away!!!
Its so weird but every day around 2pm-3pm I start feeling sick to my stomach. It doesn't last too long usually by time I get
home from work its gone. I'm really trying to stick it out. I see my GI Friday so we'll see what he says. This week
will be the 6th injection. I'm going to bring up reducing the dosage some and see what he says.
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