Methrotrexate makes me sick! Being proactive in your treatment.

Dear Holly

I too have the same reaction to methotrexate. At one stage I developed a large mouth ulcer as well. My rhemy took notice of it for 6 mths and said that was enough, off the methotrexate. Since then I have gone on a spree of trialing many other drugs. I am currently on 6 mthly infusions of Rituximab (mabthera) which I am suppose to have with methotrexate. I gave the mtx ago, but those awlful symptoms came back and my rheumy said don't take the mtx. I am taking pregnosone though. I have been on pregnosone for 11 years now.

I don't quite know all the ins and outs about health insurance and medical costs  where you are. Healing Well is another place I visit for rheumy chat (just google healing well, and go to forums and then arthritis) Here is a comment that I found on Healing Well arthritis forum:

"myHUMIRA Reimbursement Services provides support for patients seeking guidance about insurance coverage or financial assistance for HUMIRA. You can contact myHUMIRA Reimbursement Services by calling  1.800.4.HUMIRA. "

So I was thinking, maybe there are other ways to get reinbursments for other medical needs.

Love to you sweet Holly

Deb

Hi, it's me again.

I found this site on the web.

http://arthritis.about.com/cs/disability/a/ssdi.htm 

It says 2 out of 3 that apply don't get it, but I think it is worth a try.

I would have someone else help you fill it in because we tend to under estimate our disability as we try to look on the bright side.

Good luck!

Debbie

I have the side effect that makes me tired, nauseous, achy (like the flu, not from RA), and my doc put me on Folic Acid.  She prescribed me for 3mg everyday, but I take it the day before the meth, the day of with the meth, and for 1 or 2 days after I take it and it seems to do the trick, it really takes the side effects away mostly.  I don't think I have the hair loss side of it (altho I've had this with prednisone & it's never been the same), but the flu-like symptoms can be unbearable.  My doc lowered my dose a tiny bit when I was having the hardest time, but right now taking the folic acid has helped a lot.  And its not another drug, its just a dietary supplement/vitamin you need anyways.  Good luck, no one else understands what we all go thru.  Unfortunately it's our cross to bear, and what else can we do? :)

Laurie

There are always pros and cons to any medication and we each have to weigh what kind of side effects we can live with and what kind we think are unreasonable. I'm glad that you found a way that this works for you.

I am one of those people that did not have any side effects from Methotrexate. I think it was because when I first started taking it I messed up and only took 1 pill a week until I figured out what I was doing wrong. The whole time I was still taking folic acid everyday. I think the build up of folic acid in my system helped when I started taking my normal dose. To me the Methotrexate has been a blessing. I am not in any pain. I have no stiffness. I thought for sure I would need something much stonger since the doctor told me my RA was very agressive. I happy that is all I need right now. Good luck to you.

I also took Methotrexate and had the same symptons as you did.  I then told my Dr. and he said that actually they prefer we take the shot once a week instead of the pill form.  He did'n't say why, but I bet it was because so many patients had the ill symptons with pill form.   This was a blessing as I no longer had the horrible symptons and was still getting the benefits from the drug.  It is a sub q shot that really doesn't hurt at all.  Be sure to ask your Doctor as I would have never found out about the shot form until I mentioned it to my nurse and she told me about it.  Paula

I also get sick from the Methotrexate. I'm also on the folic acid (which seems to help alot. I had been off Methotexate since I was about 13 and put pack on when I was 30)But I still get sick. I found that keeping a small bottle of peppermint essential oil in my pocket and breathing that helps when I get overwhelmed with the nausa. It may not help everyone, but it def helped me!!! Good Luck!

I am sorry to hear abt your reaction to methotexate. i am supposed to start on it but i have waitied, read. learned as much as possible. i am one of those patients that have bad reactions to EVERYTHING. i mean that too. I have been on remicade and humira, had really bad reactions to both. the remicade was for ulcerative colitis/IBS and that was the only medication that worked till i had the worst side effects i had to stop it every time. and now it doesnt work at all. so i was on humira, and ended up almost in ER. so i have just been on pain meds and 2 other meds.  i am in so much pain all the time. I get yelled at from my family(all in medicine) along with myself(or i was till i got on disability). the problem is NOONE knows what i have been living through except my husband. so until something else comes out, i cannot go through those side effects. I dont know how you do it.  I ahve heard the same thing, that others are fine on it but hey are not me, my doctors shake their heads with me.Colleen

I had really mild reactions at first -some hair loss, nasea, but I adjusted quickly--over the years I remained at 35mg for about 5 years then my Rheum.Dr. bumped it up to 40mg. I couldn't believe the difference, I was so sick that I couldn't function for days afterward--it took me a couple of weeks to be sure that that was the problem but I immediately bumped myself back down and called my dr.  I'm also on an NSAID and Humira

I have been experiencing hair loss for the past year and a half.  Don't know if its' the Plaquenil, the RA, or other drugs.  Doc wants to put me on Arava, but I'm 95% pain free so far with the Plaquenil.  Holly, thanks for reminding me the best way to fight this disease is to be proactive.  I was thinking about changing to the Arava, but after reading your post, realize I'm doing wonderful with the Plaquenil.  And, yoga.  Wow, what a difference.