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Any others starting Methotrexate? I'm SCARED!

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Rheumatoid Arthritis
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Posted 2/12/2008 11:06 AM (GMT 0)
Hi Board Members,

I usually cling to my board members over in Ulcerative Colitis but today I'm branching out.
My GI sent me to a rheumatologist for a going over. We started with 2x per day Celebrex
for joint pain (hands, hips, knees) with no real relief.

Then he gently and thoughtfully talked me through the possibility of Methotrexate using a
syringe since the once a week pill load could have a negative effect on my gut.

Is anyone else out there going through something similar? I did a search on the board and
don't even see Methotrexate as a topic in the last six months.

The stuff I'm reading on the internet is a bit scarey. Am I going to lose my hair????

Rot Gut
Posted 2/12/2008 1:16 PM (GMT 0)
hi rot gut. welcome to our posts. i am surprised you didnt see any mtx posts as of late, but we have one now! i have been on mtx for oh my .... it will be three years in february! time passes so quickly. there are many members on mtx so i hope they come out of the woodwork and post too!. for me i too was scared about the mtx and that is how i found HW! searching looking for answers and i found great ones here! i have had a rather easy ride with mtx. i generally take it friday nights before bedtime and often sleep off the side effects. i have been off mtx for a few months now since i had minor surgery, but can not wait til next week when i start my meds again. my mom is also on mtx for about 9 months now and she too is doing just fine on it. her dose is much lower due to age and organ functions. i built up to 20 mg and take the pills. they have not caused me any problems other than they were not enough by themselves and i also started enbrel over the summer. that combination definetly helped me. i am not crazy about the shot thing so mtx is in pill form for me.
when you start it your doctor should monitor your blood levels and gradually increase it. again for me bedtime gave me the least amount of side effects and make certain you take your folic acid! it too will decrease the side effects of the med in your system. good luck and keep us posted on your progress. you can also join our moanin posts were we generally just support each other in life and our trials and tribulations living wiht arthritis. take care yally
Posted 2/12/2008 11:53 PM (GMT 0)
I'm glad you started this post because at my last appointment my Rhuemy started seriously talking about methotextrate and I really don't want to take it but would love to hear everyone else's experience.
(Only one swollen finger-I should not need stronger meds-the shoulder finally got better so maybe the plaquinil was just slow).
Sj
Posted 2/13/2008 3:46 AM (GMT 0)

Hi rot gut,

I too am on MTX and have been on it since the summer of 2007.  I seem to get a little more tired for a day after I take it.  I started out taking the pill form and have been injecting for the last 3 months.  I take 20 mg and have not had any other major side effects.  My liver function tests were a little off but I get blood work done monthly so we keep a good eye on it.  If you have any questions feel free to ask.  This is a great post you will get a lot of support.

Take care

Raven

Posted 2/13/2008 8:16 PM (GMT 0)

Hi there,

How are you doing?  We all sure know how scary it is to start methotrexate, like yally, that's how I found this forum as well. I was seriously freaked out at the thought of taking this drug, but everyone was so supportive, it helped so much!    When you read all the side effects, it is very scary.  But, please keep in mind, that those are listed for dosages ALOT higher than the ones we are prescribed.  I can honestly tell you, that the first few doses I got a little queasy, felt a little tired the next day, but that passed very quickly.  After a couple of weeks, I could take it with no problems what so ever.  Nope, never had any problem with hair loss, either, but I think that the folic acid is supposed to help that.  I also found that drinking alot of water helps quite a bit. I really like de-caf green tea myself.

Take good care, and please let us know how things go!

Jody

Posted 2/13/2008 11:11 PM (GMT 0)
Hello Again Board Members,

Thanks for the feedback!

I managed my OWN first injection though hubby said he'd take the job. I went off to school a while later and had a wierd, queasy, out of body hour. It passed quickly. It's been 4 days now and no other side effects worth mentioning.

The folic acid is in my kit too and now I'm waiting to see if my continuing doses arrive in the mail.

I got quite a jolt when I picked up the first batch and my prescription plan didn't cover it. I'm glad it was relatively cheap.

Looking forward to feeling better! Please DO write more in this forum as I plan to stay tuned for other folks experience. Hope to see some stories where we all live happily ever after - and not in pain.

Happy Wednesday,

Rot Gut
Posted 2/14/2008 5:18 AM (GMT 0)
Hi- This is my first posting, I have found some comfort in knowing that I'm not the only one going through this!! I have had IBD (colitis/crohn's) I don't think the DR really knows which one, since after having my 1st child in 04', and after finally getting under control in Sept of 06' I thought I was in remission w/ the help of Remicade. I have also had horrible joint discomfort since the middle of Jan. and am barely able to walk at times. It's been affecting all of my joints from one to the others. I have been off work for a week as the discomfort and inflammation gets worse after working 12 hr shifts as a nurse. I saw a Rheumatologist today and he had an array of labs drawn, which I had a few done a couple weeks ago and all were negative. We're now checking to see if I am producing antibodies against the Remicade, or if perhaps I may need a higher dose of the Remicade (since this is used for arthritis too- I can't figure out why I'm having symptoms!) or whether I have a Lupus like syndrome from the Remicade. I'm taking an NSAID and of course 30mg of prednisoe twice daily now!! sad Not looking forward to having all of that again. Does anyone have anything similar going on or know of any other treatments besides the prednisone?? confused
P.S. Sorry for not really offering advice to your question, I just kind of went off on my own, but was excited to see someone having the same types of symptoms w/ IBD also. Thanks again, AKG
Posted 2/16/2008 5:38 AM (GMT 0)
I have been on Methotrexate for 20 years. My hair is beautiful you would think I was a LEO and my liver works just fine. I take 12.5 mg pills but for now the injectable. Financial/insurance reasons. It will make my joints sore for a day or two frequently. But, lots of water helps and folic acid for the side effects if any.
Posted 2/19/2008 1:45 AM (GMT 0)
I am on methotrexate and I have crohns as well.I take it by shot form,it has help both my crohns and arthritis.
Posted 2/19/2008 6:54 PM (GMT 0)
I have been on MTX for many months now and if you are a woman under the age of 35 be careful because it can (not always) make you have irregular cycles and prone to ovarian cysts.  For me  both ovaries just keep making cysts over and over.  I think I happen to be very sensitive to the MTX and its just enough to throw things out of whack.  Just something to think about. After all it is chemo that we are taking, obviously in a very small dose but I'm considering not taking it anymore.

Posted 3/1/2008 11:36 AM (GMT 0)
I have been on MTX for 2 years now. I havent had any side effects or problems from it. Good luck I hope it helps you as it has helped me :)
Posted 3/1/2008 12:29 PM (GMT 0)
Hi Board Members,

4 injections under my belt. The biggest problem so far?

Strangely, I had difficulty getting the last dose out of the vial. Took many tries to get the proper amount into the syringe without sucking air. They might be technically correct in saying there are 4 doses in there but DANG!!!

Who has a super secret method for overcoming this?

I am beginning to believe that the 2 month mark might be necessary for full impact. Feeling slightly better after only 4 doses. Still have hair too :)

Best of the Weekend to you!
Posted 3/11/2008 3:39 PM (GMT 0)
Methotextrate and Folic Acid

Hello all:  I just found this website because I just started methotrextrate in October, 2007.  I have gone from initial 4 pills weekly to 9 but have not seem any improvement (bummed).  My pain is mostly in my hands and feet.  I read that you are supposed to take Folic Acid which I have been taking.  However, I know the metrotextrate blocks folic acid so how much should I take?  I currently take 800 mcg (400 morning and 400 evening).  Is that the right amount?  Thanks, BBGSKIER

Posted 3/13/2008 12:23 AM (GMT 0)
Hi there,

I'm sorry to hear you aren't getting relief with the MTX, this also happened to me after being on it for awhile at 8 pills per week. I'm getting started on Enbrel now...but to answer your question about the folic acid, yes that is the right dose and some of us even take the Luecovorin (sp?) once per week since the folic acid was not enough in my case.

Best wishes to you!
Posted 4/5/2008 5:24 AM (GMT 0)
I was on MTX for about 3 years for my RA and I am no longer on it. I was able to "wean" off it and am now only on Enbrel. I had to have blood tests every 3 months to test my liver and I did suffer from fatigue and a kind of "fogginess" that I didn't like. It's definitely livable, but I'm used having a sharp memory and it got a little, well, foggy. And here is good news/bad news about my hair--yes some would fall out periodically--just around my temples--but it always grew back! Now that made for interesting haircuts from time to time, but truly, only me and my hairdresser knew.

From what I have seen and heard, it affects many people many different ways.

I know there are people here who have a lot more experience and have been on it a lot longer--just thought I'd throw my 2 cents in.

Good luck!
Posted 4/5/2008 4:10 PM (GMT 0)
I love my MTX shots...crohns and arth here...
Posted 4/6/2008 8:38 AM (GMT 0)
I'm not scared anymore but MTX doesn't work very well so far!

My appointment for follow-up is on Thursday. I'm going to be a wet blanket and tell my Rheumy that I'm not impressed with Methotrexate. He'll have plenty of data to work with as he has three blood panels and a chest x-ray.

I'm two months in now and think I should feel better. I wake up with my ring and pinky fingers curled up and they have to be coaxed to flatten out and fly right. It takes about 30 minutes to get them in gear. Hands still stiff, feet HURT. I look like a grandma hobbling around until I get my legs a going.

During the day I have to sit for an hour at a time and getting up is HARD. I don't want people watching my first 20 steps because I gotta Grinch Grimace on my face.

Other users - should't I be getting more bang for my MTX buck by now? (Granted, it's DOG CHEAP but hey I'm POKING myself here!)

Who has a great story about how it kicked in AFTER two month and they feel great because I'm still looking for my "happily ever after" ending to this odyssey.

Colitic Arthropothy is what they named it. Oh yea, got the big UC on top of the so sometimes I gotta BOLT! (ever tried to "bolt" with aching feets?)

Opinions and stories, please?

Has anyone had good luck MIXING MTX with Enbrel? He mentioned that that might be next. Can those two be mixed together in the same syringe? I already sit there for a 1/2 hour looking at the darn needle getting my nerve to go poke.

I'm a wimp. I'm a crotchety wimp. Make that a crotchety wimp with no guts.

Love the board,

Rot Gut
Posted 4/6/2008 12:25 PM (GMT 0)
It took me 6 months of 25 mg injection.
Posted 4/6/2008 5:40 PM (GMT 0)
Okay I just completely FAILED my pred taper. Got to 2.5mgs a day for 6 days when both shoulders, right knee and left thumb all swelled up and I could not even sleep because I was so uncomfortable so I took 20 mgs of pred this morning.
As per last mondays conversation with my Rhuemy this means I have to start Methotextrate. I am not happy about this either -kinda nervous about any new drugs.

So anyone who hasn't chimed in yet and has good things to say about Methotextrate I would love to hear it.
Sj
Posted 4/7/2008 1:50 PM (GMT 0)
I started MTX about 6 months ago now.  My swelling has gone down quite a bit.  I am not as stiff in the morning or the middle of the night when I have to get up for my daughter sometimes. I was really nervouse about starting MTX since it is a chemo drug.  I, too, was scared about my hair.  I have had no hairloss, but the stomach issues are pretty bad the first couple of days after I take it.  I am on 6 a week and my rheumy said 8 is as high as he will go before trying something else.  I am feeling like it isn't working as well lately.  I get stiffness in the afternoon and am starting to swell more again, but at least at first, it helped.  Maybe I just need an increase.  Good luck!
Posted 4/7/2008 2:59 PM (GMT 0)
I just started MTX.. this Friday will be my 4th week.. I take 4 pills a week so far (10mg) and I go back for a check up on the 21st of April.. I take my dose on Friday nights.. after my 1st dose, that Sunday (which was Easter) I had a terrible Migraine.. I haven't felt too bad since then though.. I do take Folic Acid and B Complex Vitamin daily though to try and help with the side effects (fatigue).. I also take 40 mg of Prilosec the day of and day after my dose day, to help with the stomach issues.. My hair has however, fallen out by the handfuls.. but I have very thick hair, so I don't know if it is that time of year to where I am 'molting' my old hair.. or if it's the MTX..
Posted 4/8/2008 2:11 AM (GMT 0)
Ducky...

When you say your hair is falling out, do you mean in the shower (when wet) or while brushing it (when dry)?? Since I have been on the MTX, my hair doesn't grow and it is really dry, plus when in the shower, and I wash it, hair comes out quite often. I read your post and thought I would ask?

I have been trying to grow my hair out for the past 6 months or so and it just will not grow! I'm wondering if it is the MTX, since I have never had this problem before...I think the MTX makes for unhealthy hair sad

Posted 4/8/2008 3:00 AM (GMT 0)
I talked to my rhuemy today if my labs come back okay I start on Friday. She told me four pills to start with and that it may take months (she emphasized months-like many months) for this to work. So the bad news is I have to take meth the good news is I get to keep my pred until it starts working. The arthritis flares have always made my hair fall out all on their own so either the meth stops that along with the flares or I go bald...
I think we should update each other occassionally on how we are doing on this drug (mainly for selfish reasons I am still pretty uncomfortable with the idea of swallowing those first four pills).
Sj
Posted 4/8/2008 3:23 AM (GMT 0)

Hey sj,

I sure can remember that first dose..I just sat there staring at those pills in my hand...really had to work up the courage to swallow them.  My doc let me split the dose...half with breakfast, the other half with supper.  She said there were less side effects that way.  For all the time I was on the meds, I always took it that way. Didn't have any problems with my hair at all...keep quizzing my hairdresser to see if she noticed any difference, she never did.   But, I also have a thyroid issue, and I know that can effect my hair if my levels aren't right.  Anyway..just wanted to encourage you....you know we're all here to lend a shoulder and a hand whenever you need it.

Take care you guys!

Jody

Posted 4/8/2008 5:51 AM (GMT 0)
Hey momto3.. my hair just falls out all the time since I started the MTX.. in the shower, I usually end up with a ball the size of my fist.. and when it's dry, I'm constantly picking the hairs off my clothes.. not to mention it acutally bogged down my vacuum cleaner.. :( My hair is about shoulder length and thick, I'm hoping this slows down soon.. Although, if my hair quit growing, that might save me a lot of money on getting my roots dyed! :) :) :)
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