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View Full Version : Wanting info on methotrexate.



cheryl_v
06-05-2009, 06:38 PM
Fixing to start methotrexate for the first time. Was told have to take folic acid every day, no alochol (not even a drop), and have liver enzymes checked every 1-2mths. I'm to take 4-2.5mg pills once a week.

Where all you told the same thing? How effective is this med for others who take it? What side effects did all of you have? Any ifo would be great, thank you.

red246
06-05-2009, 07:03 PM
Cheryl,

I'm also getting ready to start taking Metho. My doc put me on, I think, 1mg of Folic Acid daily. No alcohol, blood tests evry 2 mos. Are you going to take the pills or the shots? Sorry I can't answer your other questions.

cheryl_v
06-05-2009, 10:46 PM
Hi red246, I'm taking the pills. Are you sure that's the right mg for the folic acid? My doc prescribed 1000mg a day. I know multi-vitamins have 400mg.

I guess we can experience this together and compare notes. Good luck to you. I'm starting monday, 4 pills with evening meal once a week. How are you taking it?

red246
06-06-2009, 06:46 AM
Hey Cheryl!

Yep, it's only 1mg. That's wierd, guess that's another phonecall I have to make! :wacko:

I have the 4 pills also. I had planned on starting it yesterday, but my "friend" is late. I figured better safe than sorry. I'll wait to take it till I know for sure. I think I'm going to take it on Friday evenings. That way hubby will be home in case I'm not doing so hot. Lucky him! :laugh:

Good luck to you on Monday!

Oluwa
06-06-2009, 08:11 AM
Red246..

Maybe your doctor said 1 GRAM..as 1000 milligrams equals 1 gram.

Enjoy this day,
Love.
Oluwa

KATROACH1972
06-06-2009, 09:59 AM
When i took it, I was on 2.5mg 6 pills a week. The only sideffects I experienced was increased hair loss, more heartburn, and increase in diarehea. It did wonders for my joints, and it with prednisone helped reduce my flares. I stopped because I already had reflux, and couldnt handle the increase, and my hubby didnt like my long black hair in his way!!! Hugs Kathy

Angel Oliver
06-06-2009, 10:31 AM
Hi Cheryl,

Good luck for Monday,i'll be thinking of you.Sending you gentle hugs.

lots of love
Amanda.xxxxxxxx

WantItGone
06-06-2009, 11:50 AM
Fixing to start methotrexate for the first time. Was told have to take folic acid every day, no alochol (not even a drop), and have liver enzymes checked every 1-2mths. I'm to take 4-2.5mg pills once a week.

Where all you told the same thing? How effective is this med for others who take it? What side effects did all of you have? Any ifo would be great, thank you.

Hi Cheryl,

I had to do the same thing. . . take folic acid & have blood drawn every month. I didn't really notice 2 much of a big difference & to be quite honest (I hate to admit it), I wasn't willing to have blood drawn every month & my rheumy wouldn't refill my prescriptions if I didn't. If it was more effective, I would've probably been willing to have blood drawn every month. Hope it works for you!

dsunshine
06-06-2009, 11:51 AM
Hi Cheryl,
I am on metho 1 a week which I take every Sunday. I take 8 pills total but I was told that I am not to take the folic acid on the day I take the metho. I was told I can still have a drink (1-2) a week but choose not to as I LIKE TO DRINK and 1-2 a week just won't cut it. I drink water....all day long everyday. LOTS of water about a gallon a day. I really haven't noticed or had any side effects strangely or not. I don't get sleepy or nausea or anything so I don't know why I am on it or what it does. I can say I was in so much pain that when I was prescribed the meds I just took it in hopes of being out of the pain I was in.

cptnblah
06-06-2009, 01:35 PM
I took 5mg of folic acid a day and 5mg of Leucovor CA the day after the MTX. I was on 1cc MTX injectable. I was taken off of them and started Imuran last week.

Hope this helps,

cheryl_v
06-06-2009, 05:40 PM
Thanks all, your replies have been very helpful.

Quick question? I was told he was writing a script for 1000 mg folic acid, but the bottle says 1mg. Is it a type error? Or is it still the same dose?

Thanks again for letting me know how it effected everyone. I had never heard of it, so was very leary. Then the warnings and side-effects sheet that came with the meds was making me a bit leary again of taking it. All of you have been helpful and so kind.

Oluwa
06-06-2009, 05:47 PM
CV...call the pharmacist...if it is suppose to be 1000mg...it should read 1g not 1mg.

Love ya,
Oluwa

iseedeadmonkeys
06-06-2009, 05:48 PM
Whats this about no alcohol???

LOL never stops me...ok so i dont drink loads anymore but dont ever stop me having a good time!

Cheryl your on nearly same amount as me, i only take 5mg folic acid on friday then the mtx on monday, (5x 2.5mg)

dont worry too much about it all, ive seen sucessful mtx users and non sucessful too, we will all get thru this....btw ask if you want any advice etc

peace and love
ISDM
xxx

cheryl_v
06-06-2009, 06:39 PM
Thanks Oh. I thought it was wrong, but unsure if I just read Rx wrong. I'll call in the morning and see what they say.

Thanks for the info ISDM. How long have you been on it? Any side effects for you? You said 5mg of folic acid, is it really only 5? I looked at otc folic acid and it showed 400mg and 800mg. Just wondering.

KATROACH1972
06-06-2009, 06:43 PM
should be 1 -5 grams of folic acid, which is 1000mgs-5000mgs. Atleast thats what I took. Hugs Kathy

cheryl_v
06-06-2009, 08:42 PM
That's what I thought it was to be, 1000mg. Maybe they typed mg from habit instead of g. Who knows, will find out from pharmacist in the morning. Thanks.

rosebud
06-07-2009, 07:00 AM
Hi Cheryl,

I'm on 7.5 mg / week, oral (which my doc says is a really low dose). We're doing a gradual step-up system to manage the side effects, which for me have been headaches, GI upset, and tiredness. I used to inject and I had a lot more problems that way.

I've been on mtx for 4 weeks and have already noticed significant improvements, but my doctor says that is probably because I'm small in stature. Best of luck to you. I'm sure things will go well!

cheryl_v
06-07-2009, 07:55 AM
Thanks rosebud.

cheryl_v
06-07-2009, 09:58 AM
Realized I didn't read the dose right on the folic acid. On multi-vitamins its 400mcg. On my script 1000mcg, which equals 1mg. Silly me, didn't see the "c".

iseedeadmonkeys
06-07-2009, 11:42 AM
Im glad you got the right dose now CV,

Ive been taking it since october 08, started off at 7.5mg, am now on 12.5mg
Im starting to wonder if i can go on a higher dose of the folic acid as im just feelin sick all the time now, but i think tht could be due to the fact im flaring, ive no steroids in my body either, the tiredness has come back too.

Ermm eat plenty ure prob not gonna feel like eating but ive discovered eating savoury snacks to help, bit of fresh fruit on the day or just b4 taking it, and chocolate too :)

sometimes if the sickness gets too much i go for marmite on toast just to top up the folic acid....it really helps!

Try do as little as poss dont work or over strain yourself, you will find a right time for you to take it, i usally take it morning, but as the sickness has taken over my life a little im gonna take it tmrw night and sleep thru it...sometimes i do this once a month just to get some sleep really.

You will prob find that in the begining your sleep will be all over the place, keep an eye on this and if you can have a sleep diary...just in case it gets silly!

Oh and remember to get your bloods done when they are due so the rhuemy can keep an eye on ure liver and kidneys.

We are all here for you, i write regulary every monday on my M day thread, and i dont know about the rest but helps me to cope with it more chastting to ppl and sending love etc :)

ISDM
xx

Angel Oliver
06-07-2009, 12:36 PM
Just to say im thinking of you all for your M day.Wish i could make time go quick for it to be tuesday and the sickness eases sooner.

Lots of love
Amanda.xxxxx

cheryl_v
06-07-2009, 01:48 PM
Thanks for the insight. I keep yogurt and soy milk on hand for upset tummy. Drinking a cup of milk or eating a half cup yogurt before meals helps soothe tummy. Hope it helps for this too. I will keep up with the blood work, no meds worth risking an organ for. I want relief from pain, but not at that high of a cost.

How long can you take MTX for? I read its not for long term periods of use.

Thanks Amanda for always being so sweet.

iseedeadmonkeys
06-07-2009, 02:22 PM
Im not entirely sure about how long you can use it for,

my friends have been on it for years...non lupus, so i guess its up to the disgretion (sp?) of the rhuemey


ISDM
xx

mountaindreamer
06-07-2009, 10:08 PM
hi cheryl,

hope you are doing ok tonight, i know you are nervous about starting mtx,and i hope you are one of the fortunate ones with no side effects.

I take the injection, i take 5 mg of folic acid each and every day, and i take leucovorin (recovery med) the day after my injection. I feel really bad the day after, and never plan anything for tuesday....by wednesday, i ususally feel much better.

I don't know how long we can take mtx...i have heard of people being on it for years.

When i first taking mtx, i went in to the dr. every 2 weeks for blood work, now i go every month....they want to keep close watch on liver.

don't forget to enjoy the chocolate....really helps with the psychological hardship that taking mtx has on me.

cheryl_v
06-08-2009, 04:39 AM
Thanks, mental note: "chocolate". Yummy, good recovery med (LOL). Thanks Phyllis for the advice, appreciate it.

magistramarla
06-08-2009, 11:22 AM
Has anyone else noticed this? After taking the MTX, I notice a strong metallic taste in my mouth. If I eat some chocolate, I don't notice the metallic taste so much.
A great reason for the chocolate!
Marla

PEARLESS
06-08-2009, 02:08 PM
I took that several years ago. I was on it for over a year in a half. I also had the hair loss. I unfortunately had to stop taking in due to a several reaction of pulmonitis due to the methotrexate. Went through all the test and they found out I develped an allergy to it.
pearl

cheryl_v
06-08-2009, 05:12 PM
Thanks for the replies. Just took my first dose. I hope all goes well.

red246
06-09-2009, 08:35 AM
Cheryl,

Just wanted to let you know that I was thinking of you! Hope you are doing okay. (((Gentle Hugs)))

cheryl_v
06-09-2009, 08:45 AM
Thanks Lauren. Woke with some quesiness, but not too bad so far.

mountaindreamer
06-09-2009, 10:31 AM
hi cheryl,

hope your day is still going ok....are you able to rest today?

cheryl_v
06-09-2009, 12:45 PM
Doing OK, only a little ill feel and light headed a bit now. It will pass I'm sure. No rest, schools out and my 2 boys and my lil miss running wild. Have 2 day-care kids too today (I run a home day-care), but 1 has already went home and the other is due for pick up soon.

Thanks for asking, your sweet mountaindreamer.

dmott
06-10-2009, 12:18 PM
I am also taking the methotrexate 8 pills on friday but I was not told to drink lots of water or to take folic acid? Should I be doing this?:hissyfit:

cheryl_v
06-10-2009, 01:19 PM
I was told to do both, especially the folic acid. You can end up with mouth sores and other issues from not taking it while on this med. Call and ask right away. Better safe than sorry.

mountaindreamer
06-10-2009, 04:56 PM
my dr. put me on 25 mg of folic acid each day. I take 5 pills each at 5mg.
she said it is very important to take folic acid. It really helps with mouth sores, and i remember when my daughter was on chem, she had real problems with mouth sores. The dr. said there are many nerve endings in the mouth, and the chemo flows to the nerve endings. Therefore, causing mouth sores. So makes sense that folic acid would help.

SandyR
06-11-2009, 07:28 PM
this is one of the drugs my rheumy suggested yesterday. I am still trying to learn so much about it. Very confusing. Do any of you have IBS? If so, how do you find this medicine to be with that?

Terente
06-13-2009, 08:50 PM
I am also taking the methotrexate 8 pills on friday but I was not told to drink lots of water or to take folic acid? Should I be doing this?:hissyfit:


Should drink lots of water when medicine are taken.Every day at least 1/2 gallon if not a full one.Whitout water there is no presure in blood for medicine to reach.Advise from my neurologist.

Oluwa
06-14-2009, 12:16 PM
FYI..

Too much of a good thing can be toxic..water poisoning..H20 intoxication. Hyponatremia.

I would be inclined to say 1 gallon of H2O is excessive especially since very few of us are athletic and with an impaired immune system could affect kidney functions, lowering sodium levels....causing excess H20 retention from our medication...

On average, during rest the body can rid itself of 1 to 1 quarts of water in an hour through urination. If you drink more than that per hour, in excess of what you need, the body will retain water and dilute body fluids.

48 ounces should be more than adequate from my reads for anyone...and this would included H2O, apple juice. We also get water from our foods we eat.

Moderation..is key.

Love,
Oluwa

Terente
06-14-2009, 01:40 PM
FYI..

Too much of a good thing can be toxic..water poisoning..H20 intoxication. Hyponatremia.

I would be inclined to say 1 gallon of H2O is excessive especially since very few of us are athletic and with an impaired immune system could affect kidney functions, lowering sodium levels....causing excess H20 retention from our medication...

On average, during rest the body can rid itself of 1 to 1 quarts of water in an hour through urination. If you drink more than that per hour, in excess of what you need, the body will retain water and dilute body fluids.

48 ounces should be more than adequate from my reads for anyone...and this would included H2O, apple juice. We also get water from our foods we eat.

Moderation..is key.

Love,
Oluwa

Than you for clarification, its just what the doctor told me .If he was wrong, then i,m worng .

cheryl_v
06-14-2009, 02:58 PM
I was told no more than 64oz in a day. But of course I live in FL, where its hot 8mths out of the year. Hubby drinks 1 gallon, but he's 6'3" and works outside a lot during his job. So 48oz in an average day sounds good. I try to shoot for that amount myself.

Danica01
06-20-2009, 02:29 AM
this is one of the drugs my rheumy suggested yesterday. I am still trying to learn so much about it. Very confusing. Do any of you have IBS? If so, how do you find this medicine to be with that?


I also have IBS. The pill form of Methotrexate was very hard on my digestive system and made me very ill. It was horrible and the stomach pain was to much. After we tried this for a bit and saw what it did to my IBS we switched to the shot form. The shot helps the medication bypass your digestive system. I still feel very yucky from the shot but it is mostly body aches and flu systems but I really noticed how it didn't upset my IBS. So, is this medication is something you would like to try, I recommend the shot form so that your IBS can stay under control. Good luck and let me know how it goes!!!!! Oh, don't worry about giving yourself shots......it is a piece of cake and you will get used to ti!!!!!

mountaindreamer
06-21-2009, 04:54 PM
hi sandy,

i don't have ibs, but take mtx in shot form because it bypasses the digestive system....just like danica said. if you decide to try the mtx shot, we will all be here for you. just call our names......

Ria0331
06-21-2009, 09:02 PM
I am also taking methxotrate but i am on the injections. I do have to take folic acid daily and there can be side effects. The pills can be harsh on your stomach and it can make you have diahrreah or vomiting. Most of the people who are on it have what is called a methxo day where we just feel yucky and stay in bed all day.

Danica01
06-22-2009, 02:29 AM
I am also taking methxotrate but i am on the injections. I do have to take folic acid daily and there can be side effects. The pills can be harsh on your stomach and it can make you have diahrreah or vomiting. Most of the people who are on it have what is called a methxo day where we just feel yucky and stay in bed all day.

It makes me smile knowing that there are a group of us that have bed days after methotrexate day! It makes me not feel so alone...........thank you :arms:

mountaindreamer
06-22-2009, 07:27 AM
i have learned to never schedule anything for tuesday (day after my shot). I get everything done on monday so that i can stay in bed on tuesday, deal with the yukky without feeling guilty about it. I give myself one day a week.....and i have earned it.