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For those of you on MTX I need advice

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Crohn's Disease
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Posted 1/11/2011 1:14 AM (GMT 0)
Hi guys!!

so i just got back from my GI today and after agreeing with the RA doctor I am being put on MTX twice a week. I am very aware of the side effects (to be honest, a little afraid) I just want to know... is it worth it. Does it help with the arthritis... cause that is all I want. Is my life back free of endo,crohn's and arthritis. Even for just a year to have a baby!!

So please guys let me know if you found it be worth any side effects and if it worked! ?

thanks so much!!!!!!

Posted 1/11/2011 1:24 AM (GMT 0)
Wow. Twice a week? That sounds very unusual, and very rough. I'm not sure how well I'd cope with that... what dose are we talking about?

Are you not doing any of the anti-TNF meds like Rem or Humira?
Posted 1/11/2011 1:57 AM (GMT 0)

ivy6 said...
Wow. Twice a week? That sounds very unusual, and very rough. I'm not sure how well I'd cope with that... what dose are we talking about?

Are you not doing any of the anti-TNF meds like Rem or Humira?

 

really?!?!?! I am doing 10mg pill twice a week.. so it comes up to 20mg a week. How much do you take?!?!? I've done remi for a year and half caused the arthritis... so I got off of it and went onto Humira... arthritis was fine up until 10 months of use the arthritis came back. (odd I know it's used for RA) now this is my option.

Posted 1/11/2011 2:02 AM (GMT 0)
I was on 25mg a week, but they always stressed it was to be weekly only...

Are you absolutely certain you didn't misunderstand the doctor? Can you get a second opinion?
Posted 1/11/2011 2:03 AM (GMT 0)
I was just about to post to ask what your dose was. Have you talked with your doc about taking it IM vs. oral? I was told that, for CD, I would be given 25mg/week IM. One GI (not the one i have not) said that we could switch to oral MTX after 6 months if it worked... I would think the side effects would be greater oral - things like nausea and such. I don't know though...
Posted 1/11/2011 2:09 AM (GMT 0)
I had the option to do oral or IM... I thought I read the oral's were less side effects... so I got my RX for that.. oh brother!!!! and now I am not seeing either doctor until March!!!!!!!!
Maybe I can take it with graval?!?!?!
Posted 1/11/2011 2:11 AM (GMT 0)

ivy6 said...
I was on 25mg a week, but they always stressed it was to be weekly only...

Are you absolutely certain you didn't misunderstand the doctor? Can you get a second opinion?

Yess, that is what the rx is for 20msg weekly 10mg 1 day and then a few days later another 10mg. I've seen both the RX and the CD doc and they both rx  this way (20 mg, 10mg each pill)

I would have no idea where to get a third opinion?!?! but I trust my CD doc.. I think!!! =/

Posted 1/11/2011 3:03 AM (GMT 0)
I think for CD patients IM us preferred with regards to both efficacy (absorption) and side effects.
Posted 1/11/2011 3:13 AM (GMT 0)

Rider Fan said...
I think for CD patients IM us preferred with regards to both efficacy (absorption) and side effects.

thanks so much for all of your replies.

I am actually taking it more for RA then CD. I hope this makes a difference!!!

Has anyone noticed a difference tho? Has it worked?!?!

Posted 1/11/2011 3:22 AM (GMT 0)
I have been getting MTX injections for over two years now with no side effects. Started with 25mg a week for 4 months, then dropped to 15mg. I was prescribed an anti-nausea medication but never needed it.

My cousin who is a doctor who has Crohn's takes MTX injections but he takes it mainly for his arthritis. Says he could not function without it.

Personally if you have been on Remi and Humira I would be more scared of the side effects from them but that is only my opinion.

Good luck.

Posted 1/11/2011 3:25 AM (GMT 0)

Bammer said...
I have been getting MTX injections for over two years now with no side effects. Started with 25mg a week for 4 months, then dropped to 15mg. I was prescribed an anti-nausea medication but never needed it.

My cousin who is a doctor who has Crohn's takes MTX injections but he takes it mainly for his arthritis. Says he could not function without it.

Personally if you have been on Remi and Humira I would be more scared of the side effects from them but that is only my opinion.

Good luck.

Thank you so much for your reply!!! you've put my mind at ease!!! I hope I'll be ok with the oral, if not I'll get the pharmacy to call the doc to change it to injectables. I am sure this will change my life for the better!!!

thanks again!! :) i'll will update!

Posted 1/11/2011 3:40 AM (GMT 0)
I was accidently on 50 mg once (different kind of bottle), and I really did not notice any more side effects the the 25 mg shot.
It really has been about the only thing that worked for me.
Posted 1/11/2011 9:29 AM (GMT 0)
RA&CD, Went to bed and started thinking about your post, got up and re-read it briefly. Are you trying to get pregnant while on Methotrexate? If that is your plan, there have been many posts concerning this and something I presume you have discussed with your doctors?.

Still wishing you the best!

Posted 1/11/2011 2:11 PM (GMT 0)
I have been on MTX 25mg injection weekly going on 2 years soon - minimal side effects, beginning was a bit rough until I adjusted to it - also once I started taking folic acid daily and making sure I was hydrated it made a world of difference.

I am guessing that the reason for splitting up the dosage is so that your body adjusts to it better, I started my doseing at a small amount and then slowly worked up weekly to my full amount so as to let my body adjust to it easier - I am VERY sensitive to meds in general so i also take the "Preservative Free Version".

I have also heard of taking it 2x a week orally is so that hopefully your body doesn't "expel" it quite as fast - it keeps a more even dosage in your system on a consistant daily basis.

For me the decrease and then pretty much non-exsistent Joint Pain was the the first thing I noticed, then the more energy came next. It has kept my Recto-Vaginal in check also.

As I don't have the options of other Meds (Remicade, Humira, etc) as I have Lupus this is my only option and honestly it seems to work pretty good.
Posted 1/11/2011 2:17 PM (GMT 0)
I wish you good luck with this med, I have heard its one of the best to help with arthritis issues. I have heard though that there are even more side effects with the oral version. Heard LOTS of nausea on the oral. But others seem to do better on the shot version.

Also, you can in NO way get pregnant while on MTX. So if you decide to start a family, you will need to get off this med. Hugs!
Posted 1/12/2011 2:44 AM (GMT 0)
thank you everyone so much for their replies.
To clearify myself, we were trying for a baby but I also have endometriosis (I started trying right after the surgary for the best chances) but we only realized everytime I ovulated (sorry men lol) I would get a cyst on my ovary and each menstrual cycle it'd rupture. So they put me on a BCP (no more trying for a baby) that is why it was so easy for the ra and cd doc to rx mtx. So no more trying for a year and 3 months (year worth of med 3 month break) it's sad but clearly my body need to be healthy first right!!
So I clearly misunderstood the doc... she put me on 25mg a week once a week no dividing my dosage. UGH!! you all got me worried of nausea now lol ( I am the type that once I start I can't stop and end up in the E.R needing a shot of morphine)
I am thinking I should take it before bed.. try and sleep off the side effects maybe... any thoughts?!?!
I will start of with orla, but the pharmacy said at any time she can call for a change of RX.

karasmommy
I am so sorry about the lupus. I really appreciate your reply. You've given me hope this med will rid me of the arthritis... maybe I can have a life again!! :) :) that'd be nice at 26. maybe even work part time!!!!!
I was told to take the MTX day 1 (any day) and then folic acid (5 mg) day 2 each week... all sound right?!?! I am hoping the higher the folic acid the less side effects. HERE IS TO HOPING!!
Well i will pop these bad boys tonight and give my status tomorrow. Hey at least if I do end up in the e.r my best friend is there. She just had my god son today!! :)
Posted 1/12/2011 11:21 AM (GMT 0)
My son has been on oral MTX for his CD for about 2 years now. Can't speak to the arthritis but he has had very few side effects from the MTX.

He takes 25 mg once a week and takes 1 mg folic acid the other 6 days. MTX strips folic acid from your body and folic acid is essential to a lot of body functions so it's important to get enough. If you have any absorption problems from the CD you might ask the doc or pharmacist about taking more than 5 mg and/or spreading it out over the week.

The things he has had trouble with - sun sensitivity, dehydration and fatigue.

He will get a bad sun burn through SPF 50 sunscreen the day after he takes the MTX. So please be very careful about sun exposure. I expect this is already an issue for you with the Lupus but wanted to make sure you knew that MTX is likely to make you even more sun sensitive.

Dehydration seems to be a much bigger issue since he went on the MTX too. He is much quicker to get badly dehydrated and feel sick from it. Easy to deal with if you remember to drink enough and have access to shade or a/c if the weather is warm.

Fatigue seems to be a bit worse on the MTX but who knows? That seems to be something CDers just have to deal with all the time.

Best wishes,

Patricia

Posted 1/12/2011 2:11 PM (GMT 0)
Your welcome for the response - I definitely MUST take my Folic Acid (I take 2mg daily - including the day of the injection.) I also make sure I am extremely hydrated the day I take my Injection.

Taking the higher dose of Folic Acid and being extremely hydrated made a world of difference - my Rheumy is the one who bumped up the folic acid and also told me to drink a lot of fluids the day of and day after. When I started I had no folic acid and boy was I miserable the few days after - headache, nausea, mouth sores - taking the higher doseage after talking to my Rheumy made a huge difference :)

Definitely take your meds and go to bed - sleep off most of the effects at night - the first few weeks you may feel a little "off" but you should adjust.
Posted 1/12/2011 4:38 PM (GMT 0)
I was taking 5mg. day of folic acid when I first started with the 25mg of MTX. Now I take 15mg of MTX and 2mg of folic acid a day. Somewhere along the line my GI said I didn't need to take it the day of the injection but I think that is because it doesn't do any good that day? And drink fluids that day. Hope you did OK last night.

Congratulations on becoming a Godmother!

Posted 1/13/2011 5:46 PM (GMT 0)
I also took mtx for the arthritis and orally, it hurt my stomach, so we switched to the injections (GI was a little mad the rheumy started with pills anyway).  Did it once a week and it worked so much better than anything else.  Thought it was the greatest thing, but it raised my liver enzymes and I had to stop taking it.  I cried the day I found out.  Have not been able to get out of the arthritis flare since and that was probably a year ago or more...flare has been going on for 2 solid years now.  I hope it works for you!

Posted 1/13/2011 8:13 PM (GMT 0)
I used to take methotrexate in conjunction with my remicade for a long time and it did help with my arthritis. The nausea was my primary complaint but I was able to work with that by using zofran and phenegran. The advice about hydrating and using folic acid is really, really important. I also suggest that if you are injecting into your thigh, to switch thighs each week because it can make the thigh a little sore. Some inject into their stomach but I just could not do that for some reason. I also suggest like the others of injecting before you go to bed to sleep off the side effects and do it on a thursday or friday.
Posted 3/25/2011 4:13 PM (GMT 0)
Hi everyone. First off I've got to thank you so much for all of your replies and helpful words. I noticed a huge difference with water, must drink lots like 1 poster stated. The first month of the MTX knocked me off my feet. Very nauseas 24/7 exhausted all I did was sleep!! but with in the month all of the arthritis had gone away!!! I felt so relieved.

However I on it for now 3 months and the arthritis is starting to come back. Has this happen to anyone?! if so what happen at thsi point? did the increase your dosage? The arthritis doctor increased my folic acid from 5mg to 10mg per week after MTX.

Someone stated they had no problem working while on MTX: I admire you. I can barely get the engery to clean and take the dog out. Granted I am adjusting better and only off my feet for 2 days after the treatment now.

My huge concern is: Nose bleeds I've been getting them more and more often. But this morning waking up to a nose bleed for the second  time has be truly worried. It's a lot of blood!!!! Has this happen to anyone else?! If so what happens now?! I'll have to get off of it?!

THANK YOU ALL SO MUCH AGAIN your truly my support system!!

Posted 3/26/2011 1:26 AM (GMT 0)
I've been on the oral dose for about a month and a half to treat my arthritis. My Rheumy said that it takes 8 - 12 weeks to start working. So far no side effects.
Posted 3/26/2011 1:36 AM (GMT 0)

petittarte said...
I've been on the oral dose for about a month and a half to treat my arthritis. My Rheumy said that it takes 8 - 12 weeks to start working. So far no side effects.

what's your dosage?! I am take 25mg, maybe it's to much for me!? I am also doing it by oral. I've never had nose bleeds like this so it definitely worries me. I was aware of it taking up to 12 weeks to see any difference, that is why I was surprised at how fast my arthritis did go away. But for the last week it's been back with a vengeance! I hope it keeps on going well for you!! :) good luck!!xo

Posted 3/26/2011 3:02 AM (GMT 0)
I have severe debilitating psoriatic arthritis, so bad that I didn't walk without crutches for 2 years. After trying numerous arthritis medications, methotrexate was the first that actually made any difference whatsoever. I went from not being able to walk more than 100 feet without having to sit, to being almost pain free. For me, I found humira to be more helpful and effective, but methotrexate is definitely my second choice.


As for side effects, in the beginning all mine were manageable. I only really had flu like symptoms on the day I took the mtx, and sometimes migraines. I also had an increased tendency to catch upper respiratory infections. I was on mtx for 2 years without incident, and then was switched to humira. Later I returned to mtx, but within 4 months, my liver enzymes spiked and I had to be taken off of it. If it weren't for the liver enzymes, I'd still take it. Make sure the doc takes your blood at least every 6 wks to check your liver and kidney functions. That should help monitor it. Hope this helps!
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