Methotrexate question

Hi Folks:

I have had Crohns for 30 years now, and a surgery with an ileostomy which was removed after my bowel had a chance to recover. And after the surgery I was on no meds for 8 years without a flare up. Then it came back, as it usually does.

The doctors have me on Predisone, which gives me Kidney stones, they have previously had me on Asacol, Imuran and now they are trying Methotrexate 25 ml /sub /cutaneously on a weekly dosage along with Predisone and Folic Acid.

My concern is I don't like what I am reading about this MTX, apparently you shouldn't go into the sun in which I am going to CUBA in a few weeks, I have been to the tanning beds and so far no problems, but I have only had the injection twice. I am also concerned about the hair loss as well and my liver more importantly.

Since being on MTX, I am feeling very fatigued as well. The doctors want to try this before Remicade but I am honestly getting sick of trying all these drugs with little results. They say I have no fistulas or fissures at the moment as they just gave me a CT scan.

I live in a small town and also work at the hospital myself and if I do not want to take the meds they give me they just will not keep me as a patient but I am thinking they should just put me on Remicade as the side effects seems a lot less with better chances for remission.

Can anyone out there tell me their experience with MTX? Does it really work well. I know everyone is different but I am really looking for some further information on this drug from someone who has experienced it.

Any information would be greatly appreciated.

Thanks
Mary T

*Gave your post a title*

Post Edited By Moderator (Nanners) : 3/25/2011 1:56:52 PM (GMT-6)

I've been on Methorexate twice. The first time I took it for 2 years before switching to Humira. I had no hair loss, but the day I took it, I usually felt like I had the flu. Low grade fever, fatigue, chills. This eventually subsided though. I did notice that I was much more susceptible to infections. Not so good when you work with children. I also sometimes got migraines. I'm very fair skinned, so I can't tell if it made me more sensitive to the sun, since I'm naturally sensitive.

The second time I took methotrexate I took it for 4 months. I was taken off of it when my liver enzymes dramatically spiked. I have a regular 6-week blood draw to check my liver and kidney function, and that's when they caught it. I didn't feel any symptoms of it though. The doc immediately discontinued the methotrexate. I'm not a drinker, so the mtx had to be the reason for the liver enzyme spike.

Just a word of warning, drinking with mtx can be a very bad idea due to the liver complications. My doc told me that he once prescribed mtx to a patient who claimed he didn't drink in response to my doctor's warnings. Turns out the patient lied, and ended up with cirrhhosis. Scary.

Thanks so much folks. I really appreciate it, any other information would be greatly appreciated. Right now my kidney stone is trying to pass and is killing me. The doctor actually gave me a pain killer but it makes me sick to my stomach so my husband called the doctor to see if he would change the pain killer. Funny how the doctors here basically will not give pain killers when it is proven that you have Crohns....they almost make you feel like you enjoy taking them when you really don't you just want the pain to go away.

Mary T

That's great news to hear, at least it reassures me that hopefully this drug will work, as I am at my wits end.

Okay so being in the sun when you are on MTX causes sun cancer? I wasn't aware of that or is it just the sun tanning beds you should stay away from? I usually do not lie in the sun a lot only it happens that I am going to CUBA in two weeks so I will be then unless there is a chance of sun cancer. I have dark skin so I never burn but I will use SPF 50 anyhow.

This is all an education experience for me. I thought that Remicade had much less side effects than MTX so I think I will take your advice and continue on the MTX and see what happens.

Also I will be missing a dose of MTX while in CUBA and then go right back on it when I get back.

THanks so much for your info, appreciated!

Oh and do the doc's have you on folic acid?

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All comments have the caveat contact your local health care provider.
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I will find a way or make one. –Phillip Sidney 1554-1586
All that I am and all that I shall ever be, I owe to my Angel Mother.
The Bucket List- Have you found joy in your life? Has your life brought joy to others?
Make sure your suffering has meaning…

I would say there is an aussie study that indicates MTX (when treating for RA, so an older poplulation) can raise a risk of skin cancer, but so can the sun.
So I would stay out of the sun, take it easy, and hydrate, hydrate, hydrate.
Oh and are the doctors doing the liver panels for your blood?

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All comments have the caveat contact your local health care provider.
_________________________________________________
I will find a way or make one. –Phillip Sidney 1554-1586
All that I am and all that I shall ever be, I owe to my Angel Mother.
The Bucket List- Have you found joy in your life? Has your life brought joy to others?
Make sure your suffering has meaning…

"After 4,273 person-years of follow-up, which averaged 9.3 years per patient, they found 87 malignancies. "



Read more: Arthritis Drug Methotrexate can Increase Risk of Cancer http://www.medindia.net/news/Arthritis-Drug-Methotrexate-can-Increase-Risk-of-Cancer-37592-1.htm#ixzz1HishaGpm

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All comments have the caveat contact your local health care provider.
_________________________________________________
I will find a way or make one. –Phillip Sidney 1554-1586
All that I am and all that I shall ever be, I owe to my Angel Mother.
The Bucket List- Have you found joy in your life? Has your life brought joy to others?
Make sure your suffering has meaning…

what about nose bleeds... anyone have this? and should I be concerned or worried?

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CD for 8 years. Been on Remi, humira,prednisone (8X)provaced,pantolic, imuran. Currently on MTX for arthritis and CD and on BCP for the endometriosis. Hoping for remission of all 3 disease in the next year.

People shouldn't use tanning beds regardless. They are extremely dangerous and put you at a huge risk for melanoma. Get some self tanner like Gail suggested..... Use sunscreen while in the natural sun too with a high SPF, especially in the tropics.

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d 1/09 with colitis sigmoid colon with some diverticular disease as well, IBS, Colon resection Nov. 2010, now in remission
inflammator arthritis, asthma, skin scleroderma, VSL#3 probiotic, Vit. D, nexium, pexeva (paxil), synthroid, cozar, advair, plaquenil
Blood test positive for Crohn's via prometheus ibd serology panel ASCA. Positive ANA speckled pattern

Good Luck and keep me posted!

Update, when to the hospital today for my kidney stones, gave me some pain meds, feel better now but lets pray that the kidney stones pass on their own. I had one last year and had to get a stent put in, it was awful.

Mary T

mary, I am glad you finally got some pain killers, Geez I was about to send you some of mine!!! it's horrible!!!! How we can treated sometimes. I got a nurse 1 day when I was in the E.R telling me there a lot of honest crohn's patient's but then you get 1 out of 10 who's addicted to morphine, ect so they try and use their diease to get their fix, which screws the rest of us!! My husband gets kidney stones often enough he can relate all to well.
Question: do you drink coffee?!

They should have stopped you right away on the pred when you started the MTX, you should call the doc or pharmaciest

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CD for 8 years. Been on Remi, humira,prednisone (8X)provaced,pantolic, imuran. Currently on MTX for arthritis and CD and on BCP for the endometriosis. Hoping for remission of all 3 disease in the next year.

sorry Nanner's is 100% correct. I assumed you'd be weaning off of it when they RX you MTX.
What would we do with out our great Moderator's!! :)

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CD for 8 years. Been on Remi, humira,prednisone (8X)provaced,pantolic, imuran. Currently on MTX for arthritis and CD and on BCP for the endometriosis. Hoping for remission of all 3 disease in the next year.