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Methotrexate....aaargh! would love some feedback.

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Posted 10/2/2012 10:12 PM (GMT 0)

Hi everyone. Thanks for looking at my post. I am new to Methotrexate and would love to hear how it was for others, and what you did to help the side effects. When I was first diagnosed I tried Sulfasalazine but couldn't handle it. I then was put on Minocycline (which I am still taking) but needed a Kenalog injection every 2-3 mos. to knock out big flare ups. So now the Methotrexate. I took it during a big flare and just grit my teeth and slowly the flare subsided, but still have lingering (I think normal) pain.

I have taken it for 9 wks., 10 mg orally weekly, with one folic acid daily. The first 4 or 5 wks were not bad - the nausea wouldn't hit for at least 36 hrs, and only came and went in waves. I thought no problem with this, until it changed. Now I have longer bouts of nausea 7 days a week, with fatigue all the time.  My Rhemie added an additional folic acid every day - I now take one in the a.m. and one in the p.m.

He mentioned that I could try injections if the side effects stay this bad.  Anyone have an opinion on injections vs. oral?  Plus he said that he will take me off the Minocycline my next appt. (2 mos.) and add something like Humira with the Methotrexate. How do you like meds like Humira?

I love good, healthy food and I love to cook, so this nausea is #!@!. Lately all that I can eat is bland cereal with yogurt or soymilk, toast, rice with some veggies and chicken. I have to force myself to finish a meal.  Last night I made a fruit smoothie with protein powder and it settled quite well. One of the biggest problems is even thinking about cooking or eating while having a metho-nausea attack. And some mornings my coffee tastes terrible.  confused  

Thanks for reading, and I sure would appreciate any advice - or just support.

I have never really introduced myself so my specifics are:

63 yrs.and luckily retired. Diagnosed with Rheumatoid (sero positive) and Osteoarthritis. Take Methotrexate 10mg weekly, Folic acid 1mg 2x and Vitamin D 4,000mg daily. Also daily Lexazpro, Losartin HCTZ, and Vicodin for pain. Also 4,000 Fish Oil daily and a milk thistle supplement to help the liver with all these meds.

Posted 10/3/2012 5:31 AM (GMT 0)
Hi, East,

I have been on MTX for almost two years, I think. I take mine in the evening after a full-size meal. Then if I get any nausea, i am asleep! yeah

I really haven't had too much trouble with MTX. I do take Zantac everyday to protect my stomach from meds, but I am on: MTX, Celebrex, Orencia, Lexapro, Zyrtec, Lipitor and three bp meds, and Tramadol for pain.

I tried Humira. It worked a little bit for me, but then stopped working, so now I inject Orencia. It had done wonders to lower the inflammation markers in my blood. I am sero-negative, but I have aggressive RA nonetheless.

I have never take Mtx by injection, but most people who do seem to really prefer that method. You might try that, since it does seem to make you so sick.

Blessings,
Vannie
Posted 10/3/2012 7:33 PM (GMT 0)
I've also taken MTX for several years and have not had that type of reaction since first starting out, say the first month. The first few doses, I felt like death, literally. After that I felt okay. Perhaps it is interacting with some of your other meds? or it may just not agree with you, but like Vannie mentioned many do well on the injectible version of MTX..Arava is similar to MTX, so that is just a thought. I'm so sorry to hear you are sick on the MTX, I remember when I first took it, I felt so awful, I can't imagine still feeling that way, how miserable for you! I hope you find something that works.
Posted 10/3/2012 8:46 PM (GMT 0)
Thanks. I am going to stick it out for a while. I took my weekly dose last night and felt ill this morning. And went with my husband and 2 dogs on a hike in the woods, cool Fall air ... and feel good right now. I am going to try a acupressure technique which I came across, which helps some. I will post later if I feel it is helpful.

Have a great day.
Posted 10/3/2012 10:15 PM (GMT 0)
I think you might try some extra folic acid.  When I went up to 3 mgs per day the side effects stopped.
Posted 10/3/2012 10:21 PM (GMT 0)
Hello East, when I was diagnosed with RA and SLE, I was put on methotrexate. I had the usual symptoms of dizzyness, nausea, etc approximately 20 minutes after taking my weekly dose. For a week or so yup, I could not stand the smell or taste of food, not good since I am small framed to begin with. After a few weeks everything even out on the side effects and I could eat almost anything my acid reflux would allow. Since I took 6 pills, my doc advised me to break it up on my weekly dose. 2 in the morn, 2 at noon, 2 with supper. made a difference. I think what also saved me from horrendous intestinal issues was the fact I took zantac 150 mg X2 daily.

Sad thing was 4 months later, it was causing more harm than good. So I got taken off of it. I am now on Plaquinel and hope this one works for a long time since I am limited on the drugs that will work for me.

I do hope the MTX begins to work for you. oh have you considered foot or hand reflexology? I know some people due to RA and Lupus cannot handle being touched, having their feet or hands worked on can be very effective in relieving stress and some cases the nasuea. And who, in our cases does not need some stress relief? smilewinkgrin

 

Posted 10/5/2012 4:15 AM (GMT 0)
Hi i found the nausea bad and increased the Folic Acid from 1 day to every day (except MTX day) Also we split the dose of MTX so i take half dose Monday and other half on Wednesday This has Worked and i also make sure i eat enough when i take it and i have a midnight snack befor bed this helps
Posted 10/20/2012 11:50 PM (GMT 0)
So I am taking Methotrexate i am on 2.5mg...I started out just taking 6 once a week all at once. I went and saw my RA doc and he now wants me to take 8 tabs once a week all at once....and i am taking Folic Acid 1 tab once daily. I havn't had an side effects...but could i still get side effects the longer i am on it? I have only been on it for 4 wks.
Posted 10/21/2012 3:50 PM (GMT 0)
Because mtx is a folate antagonist, if you don't get enough folate supplement in to your system then the side effects of the mtx will be worse. The maximum recommended dose of folate, depending on how much mtx you are on weekly, is 5mg per day on every day EXCEPT the day you take your mtx. This is especially important.

I was on 25mg on mtx weekly in tablet form, I was taking it at night with my main meal then every other night I take 5mg of folate. I have some mild nausea occasionally, but I take somac and maxolon for the nausea. I am now on mtx injections of 25mg a week, with the same dose of folate and I'm finding it much easier to tolerate than the tablets.
Posted 10/23/2012 11:51 AM (GMT 0)
There is absolutely no reason not to take folic acid on the day you take you mtx unless you are being treated for cancer.
Posted 10/23/2012 3:14 PM (GMT 0)
If folic acid isn't enough, and sometimes it isn't, you can always get a script for Leucovorin. This is taken 24 hours after your dose of MTX. It helped tremendously with my MTX symptoms.
Posted 10/24/2012 2:55 PM (GMT 0)
[quote]There is absolutely no reason not to take folic acid on the day you take you mtx unless you are being treated for cancer.

Both my Rheumatologist and my Gastroenterologist have told me that if you take the folic acid on the same day as your mtx it will hinder absorbtion. I've heard of a lot of people that have been told the same thing. As my Dr's are leaders in their fields who perform lots of research, I think I'll take their word for it. :-)
Posted 10/25/2012 10:39 PM (GMT 0)
i inject 25mg mtx weekly and been ok until last few month when bloods have changed been off all meds for 6 weeks but started again last week with just mtx and folic acid, since then been dizzy but otherwise ok, lots of pain but coping, as we do ,,,,
plus injecting is free , where tablet you pay !!!!

jan this year had left ring finger joint (pip) replaced then may had right one done,took pain away but left now with fingers that cant bend , due to this had to stop work as no grip,
55 yr old and need my food cut up for me,,,
other meds ::
5mg folic acid except mtx day
Sulfasalazine 500mg
hydroxychloroquine 200mg
Posted 10/26/2012 12:05 AM (GMT 0)
To all, yes there is a debate on mtx with folic acid, so before posting anymore please do this:

google search "folic acid and MTX"
Then click on "Folic Acid with Methotrexatw: The Debate"--Rheumatoid Arthritis Warrior

Read that and then talk to your doctor and show your doctor this article...
This article covers it quite well and then you can decide how you wish to proceed with your treatments.

I took folic acid on MTX days and it did help with nausea. but do your research and then decide how you wish to take folic acid, I do not think doctors have studied this much, so maybe further studies need to be done, but ask your doctor if your not sure...other than that, lets not argue over this as we wish to keep this a good thread and I hope this can help everyone.

East: the injectible MTX is easy to do and something to ask your doctor about, and probably cost less as well...something to consider
Many well wishes to you...
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