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methotrexate is ruining my life

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Posted 6/11/2011 3:51 PM (GMT 0)
hi guys. I'm having a really bad day today- major methotrexate hangover as I refer to it. I never use to have any symptoms with methotrexate but now my Saturday consists of feeling sick (even with taking anti-sickness tablets) pounding headache and fatigue. I said this to my doctor a while back and he just said that I needed to be on methotrexate- but even though my joints are good I feel so awful on methotrexate that I'm starting to wonder if its worth it. I've increased my dose of folic acid but it doesn't seem to make any difference. I just want to cry- I work all week and then spend most of my weekend feeling ill. I don't understand why i used to be OK on this drug but now I'm not. I take 6 tablets on a Friday night and I always end up sleeping for at least 12 hours and then spend a Saturday lying on the sofa feeling like I had far too much to drink the night before even though I don't touch alcohol anymore. I don't see my Rheumy for another 2 months and just don't know what to do. I don't go out with my friends anymore at the weekends as I feel so bad and they don't understand- so I feel I'm loosing my social life too. I'm 25. Sorry for the rant- I just feel awful today.
Posted 6/11/2011 4:26 PM (GMT 0)
Oh Lynny, bless your heart! It is difficult to say why the MTX would bother you so much this late in the game. I know you have upped your folic acid, but can you ask your doctor for a script for Leucovorin? I took this back when I first started out with the MTX and could not get out of bed because the fatigue was so horrendous! It worked wonders and you take it 24 hours after your MTX dose. It might help and it is worth a try.
Posted 6/11/2011 11:01 PM (GMT 0)
Be careful not to go over 1mg of folic acid a day, because you'll experience folic acid toxiticity.
Posted 6/11/2011 11:58 PM (GMT 0)
Joy is not correct actually folic acid is not toxic at any level and the recomendation to not exceed 5mgs is only in place because if you take more of it than that you can mask B-12 deficiencies which can cause neuro problems.
I take 3 mgs/day to prevent MTX side effects and it is often prescribed at 5 mgs/day for people with side effects from MTX.
Posted 6/12/2011 2:18 AM (GMT 0)
Sorry, my pharmarist told me not to go over 1mg. I did some further research and found this on drugs.com

Gastrointestinal side effects, including anorexia, nausea, abdominal distention, flatulence, and a bitter or bad taste, have been reported in patients receiving 15 mg Folic Acid daily for 1 month. Other side effects reported in patients receiving 15 mg daily include altered sleep patterns, difficulty in concentrating, irritability, overactivity, excitement, mental depression, confusion, and impaired judgement. Decreased vitamin B12 serum levels may occur in patients receiving prolonged Folic Acid therapy.

So higher doses are bad for you.
Posted 6/12/2011 12:55 PM (GMT 0)
Sorry you are feeling so bad on the MTX. Maybe you just need an adjustment period and it will ease up. I wish you all the best1
Posted 6/13/2011 6:18 PM (GMT 0)
ask your doctor about injectable methotrexate, to see if the side effects are less severe...
well wishes in what you choose to do...I hope your feeling better soon....
Posted 6/15/2011 6:32 AM (GMT 0)
Sorry to hear if i were you i'd phone your Rhumy, i had bad reactions to the MTX only solution was to lower the dose, i also take 5mg Folic Acid Daily.but still have the MTX yuck for 3-4 days after taking it
Posted 6/17/2011 1:29 AM (GMT 0)
I was told to take mtx in the morning and drink mountains of water when you take it and all day long. Then 5 mg folic acid 24 hours later. I felt terrible when I was on it first and now can tolerate 20mg with no more nausea.
But my rheumy took me off it and then reintroduced it at a lower dose , slowly building back up to the 20mg over the year.
Talk to your rheumy but try taking it in the morning so you can flush it through your system with the water. Got rid of my headaches instantly.
Regards golitho
Posted 6/17/2011 6:33 AM (GMT 0)
hi Lyn23, i've been on methotrexate for over a year now. I have polymyositis. It' an autoimmune disease of the muscles. At first when i looked up the med, i was shocked about how many pages of side effects that i dreaded taking it. I started it 6/2.5mg once a week. I took it during the day mid day for a few weeks. But the side effects were tired, overall fatigue, and on the toilet all day. Then i switched it up to night time since it made me sleepy anyway. I also made sure i ate alot on the day i had to take it, didn't want to take it on an empty stomache. I was crazy, drinking, water, water and more water. to try and flush out the toxins. Well the med helped me with my disease. It made me stronger physically. I remember the day i finally was able to walk up one stair without my walker, i was so excited. Try taking it at night with a full tummy of food. and drink lots of water, and take at least 10mg.of folic acid. the methotrexate depletes our folic acid so we have to replace it. good luck, i heard it works wonders on

RA... keep posting it helps to help others and it helps to get it out. keep the faith.....

 

Posted 6/17/2011 6:38 AM (GMT 0)
  1. lynn23, also my rhumy told me if you take too much folic acid you just pee it out. so everyone reacts differently. and my folic acid, is not 10mg. it's 1mg. so i just wanted to clarify that. good luck,......
Posted 6/18/2011 6:12 PM (GMT 0)
I've been on mtx since November and it just doesn't seem to get better. The fatigue and nausea is too much sometimes. It is really helping with the pain, but sometimes it seems like what's the point of having less joint pain if the side effects of the meds keep you from doing the things you enjoy?
Posted 7/7/2011 4:32 AM (GMT 0)
Vit B9 Folic acid Function:
Folic acid acts as a coenzyme (with vitamin B-12 and vitamin C) in the breakdown (metabolism) of proteins and in the synthesis of new proteins. It is necessary for the production of red blood cells and the synthesis of DNA (which controls heredity), as well as tissue growth and cell function. It also increases the appetite and stimulates the formation of digestive acids. No toxicity, but symptoms of B12 deficiency are masked, always important to check both folic acid and B12 levels, along with Vitamin D, along with LFT's (liver function tests)

I am truly sorry that you are feeling so badly. I was just diagnosed May 31st with RA. Had a reaction to the placquenil, and started MXT last night. It has been a long and persistent journey to discover the reason for my symptoms (since december).

Remember, your physician works for you! Call him/her and discuss alternative options. also, Zofran is great for nausea, expensive if not covered by insurance.
Posted 7/7/2011 1:08 PM (GMT 0)
My RD told me that too much folic acid negates the effectiveness of MTX. I agree with the statement to drink plenty of water - not only on mtx day but always when on this drug.
Posted 7/10/2011 1:44 PM (GMT 0)
I can relate to what your saying, I have been on MTX injections now for around 2 years and for about 2 days after my injection I am plagued with chronic fatigue and sleep for the full 2 days and night, I feel severly hung over as well but don't drink either, every second week I also have my humira injection so could be a combination of both for me. I have to have the injections because I have an ileostomy and most tablets don't digest, they just come out of my stoma whole so the injections are my only alternative. I take my folic acid tablets for 2 days following my injection. Hope you feel better soon. take care
Doreen
Posted 7/27/2011 8:26 PM (GMT 0)
Hey, i'm so glad to see others here talk of how methotrexate has made ya feel ill! I mean of course i'm not glad it's happening to you but as they say, "misery shares company". Well hi, i'm new here, thankfully i'm off the methotrexate now but i had been on it for many years and it ruined my weekends too.
Posted 7/28/2011 11:11 AM (GMT 0)
Hey, y'all...I am new to this community, as well, but I thought I would throw in my two cents...when I flared in 2007, my then-rheumatologist put me on MTX, first the pill and then the injectable...I simply could not tolerate the drug...I would be sitting at my desk at work, feeling like if I even moved, I would vomit...the nausea was horrendous....so, she switched me to Arava (Leflunomide) and I have been on that ever since.

Medications simply do not work for everyone and there are alternatives to most....if one does not work for you, discuss options with your physician...if your physician does not seem to be listening and is dismissive of your concerns, then, if you are able, find another one...I have "fired" one or two myself.
Posted 7/28/2011 1:13 PM (GMT 0)
Welcome RAFit- will look for more of your 2 cents :)
Posted 7/28/2011 4:16 PM (GMT 0)
Lynny, what other DMARDS have you tried other than MTX?
Posted 8/6/2011 4:32 PM (GMT 0)
Lynny - thanks for this post. I have been on mtx for almost 2 years - 1st pills then the injectable. The pills were horrible. When I took the pills I felt like I was being pulled under water. A deep fog. I switched to injectables and it was tolerable. I recently switched to Enbrel and I think my mtx needs to be decreased because I am spending two to three days after the injection just sleeping. Missing out on all family activity. Also, I started a temporary job on Friday. I will need to return on tomorrow (Sunday) so I am spending today in bed resting to make sure I have the energy to make it through tomorrow. Also, I will be talking to my rheumy about Leucovorin (Thx Momto3) and Arava (Lefluomide) (Thx RaFitChick). I have a pretty good rheumy. It's this disease that is being difficult!
Posted 10/27/2011 5:03 AM (GMT 0)
I've been on methotrexate for about 10 years give or take and I've never had an issue, though I'm on 20 mg weekly, I take two 10 mg tablets eve ry thursday night. You said you take 6 tablets??? At what mg? Methotrexate can cause liver damage and I know of cases where people have died due to over dose on methotrexate. This med should always and only be taken with food, it s a blood thinning med also, I've had to stop it a fortnight before any surgery. I'd see another dr if you could get a second opinion.
Posted 10/27/2011 7:10 AM (GMT 0)
i might as well jump in here Really hope you get it under control i'm on MTX also and have Nausea issues we eventually decided rather than take Full dose at once i take half on Monday night and other half on Wednesday night Follow it with Folic acid 5mg Every Day Except the MTX days and take Maxalon (anti Nausea) pills Each Morning and so far this is acceptable i still get Nausea but not Throwing up and laying aroung going AAAHHH  Sea Sick. you could talk to Rhumy about splitting your MTX Dose and increasing the Folic acid.

 

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