Methotrexate "wonder Drug "?

By maryi Sunday, December 02, 2007
Blink Hi, my name is Mary I live in Southern Ireland.  I have R.A. for 7 years and was taking Methotrexate - The "wonder drug" nearly killed me.   I have now started on Humira injections and have found them so good.  They are very expensive here however, and because of that I know that they are not readily prescribed.  I found that when I was taking Methotrexate I was so sick for 3 days every week that normal life ceased.  My family really suffered and my kids were worried sick.  The Rheumatologist said I was over reacting and until my liver function tests were through the roof said I would get used to it.   I just wanted to let people know that since I have come off the methotrexate I have met quite a few people who also had a lot of trouble with it.   Up until then I thought it was only me.  
re your query
12/ 4/07 10:36am
Hi Mary,

My name is Michelle from Portland, Or. I was told a few months ago that I have RA - which at this time is in my ankles. My Doctor has started me on Methotrexate, the first week was wonderful - the swelling went down- I could see my ankles and the pain went away for a bit. Well, I am now on my 3rd month of the pills. I take 6 pills each Friday- I spend 2 days sick- feeling no energy at all. Did you ever notice that this drug messed with your thought process? Did it make you become more emotional?  I'm not sure if it's me or if the drug is making me more emotional than normal. Before taking the pills, I lived with swollen ankles and pain- but I wasn't nearly as tired - nor did I feel like my mind was out of control. I was just wondering what all of the side affects you have experienced?

Thanks
Michelle from Oregon
12/ 4/07 12:42pm

Hi. Michelle,

OOOOOh yes - I was all over the place, the dr. told me it was the menopause !! (I had a hysterectomy at 34) I was then told it was the emotional effect of having "a" disease.   I picked fights with my husband and even hit him one night we have been married for 20 years and are as in love now as when we married.   Methotrexate nearly distroyed my life, I have kidney damage, liver damage ( I don't drink) and now my heart is being investigated.  I hate the name methotrexate but doctors will not prescribe other medication because of the cost.  Thats the way it works in Ireland even with insurance.  the new treatment I am on is really good but it costs €1500 per month for two injections.   Also on Methotrexate I put on a lot of weight 30 lbs and it is only now starting to shift.  I thought everyone was laughing at me and that my husband was trying to hide money - completely untrue but I was off the methotrexate for about 4 months before I realised I was out of my mind.     Michelle, if your doctor won't acknowledge your side effects - change doctors.   I would have prefered the pain to the side effects.  Even though I was in a lot of pain in my feet, hands neck etc.,

12/ 4/07 2:20pm
Oh my gosh, thank you Mary, I talked to my husband last week about wanting to talk to the DR. because I did feel like people were talking about me and laughing at me - even though my son's and their wives would say no, they were talking at me/with me- I told my husband, I would rather be off the drug and deal with the pain and swelling than to loose my hair - and yes gain 20 lbs so far- and take the chance of killing my liver and Kidneys - which my DR. said - after doing my blood work - my liver and kidneys were great and I was healthy as a horse and not to worry about my hair- since I have very thick hair.  well...not anymore..I told my husband I wanted to talk w/ another DR because I thought the Rhumatologist didn't know what he was talking about...thank you so much for the information. I am happy that you have found a new drug that helps you -- I am so sorry to hear that it's so expensive....it's like these pharmacies and med companies run the monopoly of our lives..
thanks again
Michelle
12/ 4/07 2:25pm

Hi again Michelle,

 

I thought I was the only one whose hair thinned.   It's nice to know you are not alone, even if I am at the other side of the world, feel free to contact me anytime, my email address is maryi@eircom.net - The very best wishes

 

Mary O'Sullivan

12/ 4/07 5:31pm
Hello to you-

Thank you so much - yes, it's nice to know that some one else experiences the same things..please feel free to contact me as well..my email address is indianheaven@msn.com

have a great day...Big Smile

Michelle
Anonymous
Connie Dockler
1/23/08 8:58pm

I take Methotrexate and Clinoril for my RA.  The doctor also prescribed Folic Acid because the Methotrexate does cause some stomach upset and the Folic Acid helps that.  I am not ill (like vomiting) at all after my weekly dose of Methotrexate.  I am sometimes nauseated but the doc says take another Folic Acid and it will help.  Folic Acid is after all a good for you so I figure what is the loss here?  There are alot of meds out there that cause people to become ill and some just cannot tolerate them.  I am glad you found that Humira works for you but I won't take Humira treaments because of the major side effects it can cause.  Have you really looked into that?  Did you try taking the Folic Acid with your meds.  My Folic Acid is an RX not OTC.  I am not sure if it is different than OTC or not but I just know it works.  Good luck on your treatment.

 

Connie Dockler

1/25/08 4:31pm

Hi Connie,

Thanks for your reply and yes I was taking folic acid 6 days with the methotrexate and not on the day I actually took the methotrexate.   My RA is quite severe and I have it for 12 years and initially the methotrexate was fine.   After 8 months i started feeling sick for the day after the methotrexate then i was physically sick for 2 days then 3 days.   I was then transfered to the methotrexate injection and for about 8 weeks I was ok after that I started to get sicker and sicker with my enzimes going out of control and my blood pressure reaching 230 / 120 on the day of the injection.  My whole system broke down.   I had no option but to go on Humira and I am fully aware of the side effects but so far so good.   At least now i am able to lead a relatively normal life and since I gave up work now a day that I don't feel well I can rest.   My whole point was that methotrexate was hailed (to me at least) as a wonder drug - I was not told the side effects ( I was more naive in those days !) and I would never have questioned my doctor.  This whole episode has taught me a lot - never take the doctor at his word, do your own research and above all listen to your own body.   Connie I sincerely hope the treatment works for you but if you do have any problems know that you are certainly not alone.  

Lovely to hear from you

 

  I hate injectionsCustom Smiley 

Mary

Anonymous
Connie Dockler
1/26/08 11:57pm
Hi Mary, I am sorry you became so ill on this medication and I am double sorry you doctor was not up front with you about the medication and its side effects either.  I am fortunate to have a very good Doctor who talks to me about all my meds and lets me decide what I will do regarding my treatments.  I am very happy to have found her and I am so grateful to her because it was she who told me what to expect from the Methrotrexate and what to expect from the Humira if I decided to start that one.  Well I decided against the Humira and so far so good with the Methotrexate.  You are correct as I also take the folic acid only on the 6 days I don't take the Methotrexate.  I have blood work done every two months to check my liver and kidneys too.  I hope things get better for you.
1/27/08 11:39am

Hi Connie,

Thanks for your kind words.   To be honest, I think some doctors don't know a whole lot about RA and my G.P is a really nice man who did not give up trying to find out what was wrong with me.  I attended and Orthopedic Surgeon who told me I needed a phyciatrist !!  Different sides of the world as well.   I have a friend in Australia and they treat RA completely differently there as well.   My Rheumatologist is really good but told me that if he was to tell everyone about all the side effects no one would take anything.   I hope your treatment continues to give you relief and I intend to live as full a life as I can.  

Kind regards

Mary

Cool

1/23/10 3:24am

I am truly sorry for your diagonsis. My mom died from RA this past October and it was because of our health care system. She lost her insurance and fought for disability for 6-7 years and by the time she got help it was too late. i am sorry, but I am bitter at our system. I loved my mom more than life and I am angry and scared that I will get RA. I truly feel for you.

Sharon

By maryi— Last Modified: 10/26/11, First Published: 12/02/07