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JanW
02-02-2010, 05:32 AM
For those of you who take mtx, what, if any, side effects have you noticed. How soon to the start after you take your weekly dose and how long do they last? My first dose will be tomorrow -- not on pred or any other WG drugs. Am starting with 10 mg. Already have folic acid on board for nausea.

Sangye
02-02-2010, 06:10 AM
I was only on mtx a couple months so my experience is probably not useful.

Taking folic acid is necessary because mtx depletes it. I don't think it has anything to do with nausea, but could certainly be wrong about that!

JanW
02-02-2010, 06:16 AM
Dr. Yee said that it was definitely to stop nausea, which is apparently quite prevalent with mtx, and my search on the internet revealed a meta study from Britian that showed it was actually as effective as expensive anti-emetics. Funny, he never mentioned that folate was depleted with mtx!

Sangye
02-02-2010, 06:25 AM
That's great info to know.

Yes, the mechanism of action for mtx is that it interrupts folic acid activation. Without that activation, cells can't multiply. This is why it's used for chemo.

snooz23
02-02-2010, 07:40 AM
I started at 10mg and slowly made my way to 25mg which I will stay at for quite some time. I may have it a bit different because I am also on pred. and tapering from that now (currently at 9mg). There is no doubt my body goes into sort of a hibernation yet hyper sensitive mode for 1-3 days after I take it. That's why I always take it over the weekend, so I am prepared to go back to work each week. The first few weeks I described it as being flattened out (almost like) ran over by a car. Now I am really tired and need several naps just after taking it. Nausea hits me every now and again (probably every other weekend). I am also taking the folic acid daily but have not noticed that to take away the sick feeling. I also just feel a lot more achy and uncomfortable for 1-3 days. By Wed. or Thurs. I am usually feeling pretty good again, but then I just have to strip the body down again on Friday. My husband always comments how unfortunate it is that this disease actually needs you to break your body down so far that regular ailments feel much, much worse. I am definitely no long in pain but I do have lots of discomfort on a daily basis (which I am hoping will disappear when remission and possibly treatment is complete).

Brooke
02-02-2010, 07:45 AM
I have been on methotrexate for a couple of months now. I too started off on 10 mg the first week ( I did not notice any side effects), then the following week I was on 15 mg ( I did not notice any side effects), then the following week I started the 25 mg ( I threw up a few times that night, after that I felt fine.) I still feel fine after taking methotrexate. I take my pills every Monday around 3 pm :) About to take them now.

JanW
02-02-2010, 07:46 AM
Thanks, snooz that was helpful. My doctor, who doesn't prohibit light social drinking when taking mtx, suggests that patients take it midweek, since, presumeably more people like to enjoy a drink or two on the weekends, vs. midweek. I guess we'll see when I take the pills -- I don't have much on my schedule for tomorrow. Do you break it up on take them all at once.

JanW
02-02-2010, 08:04 AM
Do you take folic acid as well, Brooke?

Brooke
02-02-2010, 08:06 AM
Jan ~ Yes I am on folic acid and also 20 mg of prednisone, bactrim, and zoloft.

JanW
02-02-2010, 09:56 AM
I think, like Sangye said in a different thread, 60 mg pred and cytoxin is "standard of care" in cases of lifethreatening Wegs, and every other situation is likely what about what the doctor wants to do/try. My doc was very clear that there is a possibility that mtx may not work or might not be tolerated by me, and that we would have to try something (likely rtx). If my condition stays as is, no plans for steroids, however.

Tim Roberts
02-02-2010, 10:33 AM
Jan: I have been taking methotrexate for about 7 months now since my diagnosis with wegener's in August of 2009. I have almost completed my whole prednisone regime as I am down to 5 mg per day and hopefully off by about April 1st. To be honest, the side effects of the prednisone have been much more difficult than the methotrexate.

I take methotrexate weekly and am on 17.5 mg per week. I notice that when I take it, the day I take it (Tuesdays) it almost acts as a stimulant as I don't ever sleep well that evening. The next day I feel a little "off" - just a little more tired than normal and just not quite as good as I normally do. By Thursday, however, that feeling is gone so it is just basically Wednesdays that I feel some of the side effects but actually very minimal.

What helps me the most is exercise as I either walk or run six days a week for anywher from 2 1/2 miles to 4 miles. I usually just walk on Wednesdays (my crappy day) but otherwise the prednisone and methotrexate let me do my routine the rest of the week. My rheumatologist indicated that I can do whatever I feel up to and this has helped me more than anything both mentally and physically.

I hope this helps and best of luck to you and certainly if you have more questions, don't hesitate to ask. I have learned much from all of the folks on this site that are much more experienced with this disease than I am and they are truly wonderful.

Tim

moyan
02-02-2010, 12:12 PM
Hi all you who know: Seeing the internist tomorrow and I wonder, can my difficulty to breathe have anything to do with 2 years of pred? Lung doc found an obstruction between my neck and my tummy but no explanation. I asked for a puffer and got advair, don't know if it works, but take it :)
In 2 years pred was down from 60 to 15!
Moyan :)

Sangye
02-02-2010, 12:55 PM
Have you had lung involvement, Moyan? Also, I'm totally forgetting what drugs you're on other than pred. When I was first on ctx, I had increased difficulty breathing within 6 months. As soon as we stopped it (couple months later) my breathing improved a bit. I later learned that ctx is particularly toxic to the lungs.

Do you practice taking deep breaths throughout the day? That helps a lot.

jeriorleans
02-02-2010, 03:01 PM
A.J starts on Methotrexate this Friday. His last cytoxan dose is tommorrow. His doctor said the Folic Acid was to keep him from getting sores in his mouth. He is starting on 20 mg and then in 2 weeks he moves up to 25 mg. (he is 190 pounds). He is still on 10 mg predisone, every other day. His doctor told him to take it right before he goes to bed so that if there is any nausea he will hopefully sleep through it.

katwoman
02-02-2010, 05:33 PM
Hi Jan, I am on 20mg of methotrexate, about a month into i developed mouth ulcers and was prescribed folic acid - as Sangye said its because it depletes it from your system.

I beg to differ that your doctor said it was for nausea, sometimes in the fluster of the doctors visit it is possible to mis-understand, I have a copy of 'patient information on methotrexate; they advise taking folic acid for the side affects of developing mouth ulcers and antinausea tablets if needed'. One of the previous threads that was going, alot of people advised me on ginger in some form or another (hhmm I remember someone said they ate ginger biscuits..yum) I got ginger tablets (which are for car sickness) that really helped, but I find I don't really have much side affect these days other then a little off in the stomach.

JanW
02-03-2010, 01:50 AM
Thanks for that. Yes, doc wants to check for mouth sores every two weeks, and yes, there have been blind studies done within the last couple of years that show that folic acid is just as effect against nausea as other, more expensive anti-nausea meds, which is why hee prescribes it (this I confirmed looking at the studies on the Internet).

I'm going to take it today (10 mgs); will let you all know how I do on it.

moyan
02-03-2010, 01:57 AM
Sangye Never had lung involvement, shortness started a year after chemo was finished. Now on immunosuppressant. Just started noserince, curious if that might help.

Sangye
02-03-2010, 04:58 AM
How is your overall muscle tone? Pred causes muscle wasting. The intercostal muscles (between your ribs) are very small and atrophy quickly. That can limit ribcage expansion, causing you to feel short of breath.

Also, check to see if your abdominal muscles are functioning properly. When you breathe in deeply, your abdomen should expand. This reflects diaphragm action-- the primary muscle involved in breathing.

moyan
02-03-2010, 07:48 AM
How is your overall muscle tone? Pred causes muscle wasting. The intercostal muscles (between your ribs) are very small and atrophy quickly. That can limit ribcage expansion, causing you to feel short of breath.

Also, check to see if your abdominal muscles are functioning properly. When you breathe in deeply, your abdomen should expand. This reflects diaphragm action-- the primary muscle involved in breathing.

Thank you, Sangye. Intercostal muscles sounds just right. Will have physio lady give me some excercises. Doc app. was for good and maybe bad: Taper the pred accordding to my/your plan,slowly. Foot might haqve infection in the bone and if so more have to be taken off. Just left it for now, looks sort of good :)

JanW
02-03-2010, 09:31 AM
So far so good -- haven't noticed anything except some light nausea about a half hour after dosing that went away within an hour. Also got my lung CT back today and all's clear, so am excited about that as well.

Sangye
02-03-2010, 09:48 AM
Moyan, one thing I learned about wounds is that if it's due to Wegs (ie, a vasculitic lesion) tapering the pred will cause it to worsen. But if it's due to infection, tapering pred will help it heal. Pred really inhibits tissue healing. I'm hoping that it heals quickly as you taper the pred.

Jan-- that's fantastic news about your lungs. Hoping you just get better and better.

elephant
02-03-2010, 09:54 AM
That's great news Jan. lungs clear. Glad you handling the methotrexate. :)

jeriorleans
02-09-2010, 01:34 PM
A.J took the methotrexate last night. No side effects at all.

jola57
02-10-2010, 05:16 AM
I am glad, mtx is so much better than cyclo. I hope he does well.

AndrewMcC
03-14-2010, 08:03 PM
Hi I've been on mtx graded up to 20mg weekly since i was diagnosed in july 2009, i find the side effects most annoying, nausea, sweats, increased meticulation, and irregular hallucinations.

Does anyone know if mtx symptoms persist or does one become inured to them?

elephant
03-14-2010, 11:27 PM
Andrew welcome, I have a sibling on mtx...she never mentioned hallucinations....that is something you need to call your physician on immediately. There are other's on this forum who can let you know how they feel on mtx. Are you on Prednisone? Do have you limited WG....tell us your story when you can... Hey i am going to beat Sangye to the punch...do you have a Wegeners Specialist? :)

Sangye
03-15-2010, 12:12 AM
D'oh!! Elephant totally beat me to the punch. She must be feeling better-- ya gotta be pretty fast to nag faster than me! :D

Welcome, Andrew McC. I've never seen hallucinations mentioned as a typical side effect either and agree it merits a call to your doc right away. I look forward to hearing your story. :)

elephant
03-15-2010, 12:24 PM
Well Sangye , I let you sleep in today....you worked really hard yesterday. :)

Sangye
03-15-2010, 01:14 PM
LOL-- thanks for the coffee(less) break. :D

jola57
03-15-2010, 05:33 PM
hallucinations are not a side effect of mtx. could be other meds that you are taking. a trip to the doc is a must. make sure you tell them about ALL the prescription meds and over the counter meds you are taking and or any other substances

AndrewMcC
03-16-2010, 07:02 AM
Yea she (rheumatologist) knows all about it lol, and like i said they are irregular and could be the prednisolone rather than the mtx, but they occurr more often when mtx has been taken.

My rheumatologist is as specialiised as i'm going to get in N. Ireland, and i am responding well to treatment, where i come on the grand sliding scale of weg I'm not quite sure. Perhaps someone could devise such a scale.

I feel lucky that i have had no kidney involvement, but when i read about people mountain climbing and running i feel not so lucky lol

elephant
03-16-2010, 07:35 AM
Sounds like a mixture of medicines, I have heard of someone getting hallucinations from the prednisone....keep an eye out ....do you feel spacey? Kinda out of it sometimes? Do you have lung involvement? Methotrexate can make you tired...so don't feel so bad. How much prednisone are you on? Are you being tapered off the prednisone?