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Methotrexate question

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Posted 3/25/2011 12:44 PM (GMT -7)
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)

Posted 3/25/2011 1:03 PM (GMT -7)
We have a few members on MTX. One of our moderators in fact is using it with some success. I am not on the med, but have heard that fatigue is an issue for some. The hairshedding is pretty common with most of our meds. Folic Acid will help with the hairshedding.

As for the sun issue I think you should be careful with that. I am not sure if all Crohnies are suceptible to skin cancers, but I believe on the MTX that can be a problem. I use the self tanners with alot of success, maybe try one of those. I use one by Loreal and really like it. I get tan with the sun damage:)

Also, the Methotrexate, like most of our meds takes awhile to reach full efficacy, so I think I would give it more time.

Hugs!
Posted 3/25/2011 1:09 PM (GMT -7)
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.
Posted 3/25/2011 1:27 PM (GMT -7)
Hi!!!

I am currently on MTX after trying remicade, humira, Peditsone, ect... The main reason was for the arthritis. I've been on it for about a month and half. The first month was very rough knock me off my feet. Very nauseas and exhausted. Hardly engery to take a shower. I've had some hair lose but not in clumps just strains of hair or in my brush. But I am also anemic (which causes hair lost) My arthritis was completely gone!!!!!!!!!!!! Until last week that is. Along with major nose bleeds. But not everyone get these side effects. I was sooo afraid to go on MTX as well, because of all the bad word. But honestly even if i have to get off of it I think it was worth it and a nice relive not to have arthritis pain for 2 months.

We sound a like alot. I leave in 2 weeks for Punta Cana (were I got married last year) and I am a HUGE sunaddict. I also do the sun tanning beds before hand to get a base, but I am avoiding it this trip around, after hearing people getting burnt the day after their treatment. I'd suggest you stay away from the beds and do 2 hours ( not in a row) in the sun per day while your on your vacation. I am no doctor it's just what I plan on doing. BE CAREFUL your in another country!

I just posted 'those of you on MTX, I need advice'

i wanted to know if I should be worried or if i should go to the E.R with these nose bleeds I've been having. This morning (twice this week) I've woken up to nose bleeds (blood in my mouth and all) the bleed takes anywhere from 2-3 hours to stop. Or can I wait to see my doctor on Monday!? any suggestion would be so appreciated.

Posted 3/25/2011 5:20 PM (GMT -7)
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
Posted 3/25/2011 5:24 PM (GMT -7)
My 16 yr. old son has been on a low dose of the shots (15 mg) for about 3 months now. No side effects at all. And, we live in TX and he plays tennis, so a lot of time in the sun. Hasn't seemed to bother him at all.
Posted 3/25/2011 5:26 PM (GMT -7)
That's great news to hear, at least it reassures me that hopefully this drug will work, as I am at my wits end.
Posted 3/26/2011 6:14 AM (GMT -7)
I had been in it at 25-15 mg (worked my way down over a period of years) it was the only thing that worked for me as remi and humira both gave me lupus. Just fyi it can take months to work.
As for the tanning issue, just my own personal opinion do not do it. I have a friend who is a 32 year old mother of 2 young children (2 and 4) who has stage 4 skin cancer from using tanning beds. Is it really worth it to deal with another illness?
Posted 3/26/2011 7:08 AM (GMT -7)
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!
Posted 3/26/2011 8:44 AM (GMT -7)
No, what I meant is tanning beds cause skin cancer (after all there is a warning label on tanning beds, just like there is on carton of cigs), otherwise this was a perfectly healthy person before cancer (no family history of skin cancer).
MTX is does not up your risk any more then Remicade or humira (from my understanding), and frankly MTX has been around for at least 40 years (which is a lot longer then remi or humira, so we do not know the health effects long term for those drugs), and is one of the cheapest crohns meds out there.
If nothing else please consider using a high level of SPF all the time and reapply it every 45 minutes that you are out in the sun (and just because it is a good health idea and it will help minimize your risk) and take plenty of rest breaks with plenty of water, because you will get more tired.
Posted 3/26/2011 8:49 AM (GMT -7)
Oh and do the doc's have you on folic acid?
Posted 3/26/2011 8:55 AM (GMT -7)
Yes, the docs have me on folic acid which I understand helps with hair loss. I intend to use 30 and 50 spf block when I am in CUBA but it is good to know that MTX doesn't cause skin cancer. Thanks so much. I am still learning and want to make the right decision in regards to this medication. I really hope it works. Any other suggestions?

Thanks again
Mary T
Posted 3/26/2011 9:11 AM (GMT -7)
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?
Posted 3/26/2011 9:14 AM (GMT -7)
Well I just started MTX two weeks ago so this week coming up they are going to do my blood work checking my liver. Hopefully eveything comes up normal. How long will usually does it take before the med starts to work?

Thanks for your help again, I find this forum very informative.

Mary T
Posted 3/26/2011 9:15 AM (GMT -7)
"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
Posted 3/26/2011 9:26 AM (GMT -7)
It took me about 3-4 months, before I really saw any change.
Posted 3/26/2011 9:43 AM (GMT -7)
what about nose bleeds... anyone have this? and should I be concerned or worried?
Posted 3/26/2011 11:25 AM (GMT -7)
I haven't had any nose bleeds but I did read that was one of the side effects. I would put a call into your doctor to find out.

Good Luck
Mary T
Posted 3/26/2011 5:01 PM (GMT -7)
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.
Posted 3/26/2011 5:07 PM (GMT -7)
Thanks Mary, I see my GI on Monday and I've done my blood test (this pass Wednesday) I'll wait to see her then and see what she has to say. Maybe my white blood cells are to low. I read if this is the case I'd most likely have to be taken off of it!! ? Will see I wont get to ahead of myself yet I guess. The side effects can be a tad rough but it's much better then not being able to walk like the past.Feels good to be able to use my stairs again and be dependable on myself instead of the husband just to get me a glass a water!!
I'll give my update then!! Thank you all!
Posted 3/26/2011 10:25 PM (GMT -7)
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
Posted 3/26/2011 10:31 PM (GMT -7)
Hi Folks:

Another question, after I have been on MTX will they stop my Predisone....I certainly hope they do, hate the drug.

Mary t
Posted 3/27/2011 8:51 AM (GMT -7)
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
Posted 3/27/2011 8:59 AM (GMT -7)
You have wean off the Pred, especially if you have been on it awhile. Most times that put you on Pred to give your meds time to kick in. And then when you wean off, it will be your meds doing all the healing. Hugs!
Posted 3/27/2011 9:03 AM (GMT -7)
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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