24 and newly diagnosed with RA- can anyone tell me about Methotrexate?

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Lynny23
Regular Member


Date Joined Jul 2009
Total Posts : 49
   Posted 11/13/2009 7:37 AM (GMT -7)   
Hi Im 24 and was initally diagnosed with Mixed connective tissue disease, however my rheumy has today changed this diagnosis to RA. He has given me a systemic cortisone injection and im already on anti inflammatory meds however he has now put me on methotrexate. Has anyone had any experience with this drug as after reading about it im really scared about taking it. sad
Please let me know what to expect with it.

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 11/16/2009 8:29 AM (GMT -7)   
I'm sorry no one has answered your post.  Everyone responds differently to the MTX when first starting out. For me, I started out on 4 pills and the first month I was on them, it felt as if I had a bad case of the flu and I couldn't stay awake after I taking them.  The best thing to do is start out slow and increase your dosage if possible, and please remember to stay hydrated (lots of water!!!) otherwise the MTX can make your joint pain feel wose, especially the day after your dose. Wear sunscreen, MTX is known to increase your sensitivity to the sun, and when I first started my dose, I remember sitting outside in a pair of jeans and I ended up with a sunburn on my legs, through my jeans.  I'm fair skinned, but that was ridiculous even for me! I know the side effects are scary, I remember reading all of them quite a few times thinking how do people take these toxic things??? Now that I've been taking them for several years, and have gone off of them a time or two, I've learned that I can't manage my joint pain without them, so sometimes you have to way the pros and cons of a medication.
 
One that is really really good and I don't know if you have tried it, is Plaquenil. It does take a few months to work, but when it kicks in, it works wonders for both joint pain and fatigue. For whatever reason it affected my vision, and I had to stop taking it, but I highly recommend it.  Especially if you find that your MTX isn't working as well as you hope.
 
The one thing I have learned with RA and medications, is that it is trial and error, it's really about trying different medications and finding what works and what doesn't.  Try the MTX and see if it is right for you and if it isn't don't hesitate to let your rheumy know that you need to try something different.

SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 11/16/2009 7:32 PM (GMT -7)   
Hi Lynn,
Momto3 gave you great advice, just wanted to add that you should give the MTX some time to kick in - it took about 3 months for me. All the drugs we have to take scare the daylights out of me but I prefer quality of life and will just have to deal with whatever else comes down the track.
Good luck, keep us posted.
Jo
Crohn's Disease
Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone, Humira
Bowel Resection Sept. 07


golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 11/17/2009 2:17 AM (GMT -7)   
I can only back up what the others have said. All RA drugs have positives and negatives unfortunately. I really struggled at first with taking them. I think I was in denial I even had RA but now I'm 3 years on and I will take anything to stop the pain and inflammation!!! There are milder meds than MTX to start on, like plaquenil or sulphursolasine. But mtx is pretty good at getting rid of inflammation. I also felt sick on it initially, drink the water and lots of it when you take it. I struggled with mouth ulcers initially but now take 5mg folic acid 12 hours after my dose and thats kept the mouth happy.
It made my liver a bit unhappy at first so I went off it for a couple of months then restarted on a smaller dose, slowly rebuilding up to my current dose. I'd hate to go off it now.
Come and chat anytime, RA is huge to deal with alone.
Best wishes, golitho

Lynny23
Regular Member


Date Joined Jul 2009
Total Posts : 49
   Posted 11/17/2009 3:02 AM (GMT -7)   
Thank you so much for your comments- its such a help to know that there are others who know what Im going through. I got the pills yesterday but I am not starting the methotrexate until Friday so that if it makes me sick I'll be off work for the weekend and can lie down and sleep. I have been given 5mg of folic acid to take 48 hours after taking the methotrexate also. Im nervous about friday as I guess no one knows how it will affect me, everyones different. Im starting on 4 pills and then they hope to increase that to 6 in 1 months time.
I hope everyone is doing well at the moment this seems like such a lovely site with alot of much needed support for everyone. Thank you again for your comments!

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 11/17/2009 8:55 PM (GMT -7)   
What dose are your mtx pills? If you start feeling sick remember to talk to your rheumy about it. 48 hours later to take folic acid is a long wait...if you get any mouth ulcers ask if you can take it sooner.
Best of luck for Friday. Golitho

Lynny23
Regular Member


Date Joined Jul 2009
Total Posts : 49
   Posted 11/18/2009 2:19 AM (GMT -7)   
My mtx dose is 10mg for 4 weeks then I am being increased to 15mg. If I have any side effects I will definitely be speaking to my rheumy because Im trying not to have to take any time off work. I don't know why its 48 hours after for folic acid but thats what my instructions are so I will try it for a while and see what happens. I will keep everyone updated on how I get on when I take my first dose.

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 11/18/2009 8:04 AM (GMT -7)   
Ah yes the denial :-) I'm going on 5 years now and I still have periods of denial.  Just a month or so ago, I was having terrible fatigue and I thought what if it is my MTX?? so silly me, thought I would just stop taking it for a few doses and "see" what happens.  Well, I did great for the first 2 or 3 weeks, but by the 4th week, I couldn't get in or out of my car, and my daughter asked me if I was taking my MTX nono That and I had the most horrid face rash ever! But Golitho is correct, the MTX is great about keeping the inflammation away because after I got back on it, the face rash went away and the awful hip pain also went away.
 
I  forgot about the mouth sores! Yes, if you do get those, you must call your rheumy and let him know right away. Also if you are drinking tons of water and still finding you are terribly fatigued you need to call, because you may not be getting enough folic acid to counteract the MTX.
 
We are all here for you if you need us!

ladywriter
Regular Member


Date Joined Jun 2009
Total Posts : 112
   Posted 11/19/2009 5:43 AM (GMT -7)   
Lynny23-welcome to the forum. I've found lots of support and information here. I was diagnosed with RA in March, and I'm 49. I started with 1mg Folic Acid daily and 5 mg MTX once a week. The first time I took the MTX, the next day I thought I was going to die, I felt so bad!!! It felt like I had the worst case of flu in my life.

I had read on this forum that you can take up to 5 mg of Folic acid a day, so I checked with my rheumy and he said I could go up to 3 mg/day. That helped A LOT!!! When my MTX was increased to 10 mg once a week, I went up to 4 mg Folic acid/day due to mouth sores, but that Folic acid was truly a lifesaver. Ever since I went up to 4 mg/daily I haven't had any noticeable side effects from the MTX other than being really tired-well, I'm always tired, but more than normal.

I don't understand why you are being told to take your Folic acid after the MTX. For me, I took the MTX on Saturday night, it totally knocked me out, and I woke up Sunday morning with flu-like symptoms until I got the dose of Folic acid right. It seems to me that it would be better to already have the Folic acid in your system before taking the MTX, but I'm certainly no doctor, and I'm sure yours has a reason for that type of dosage. Still, I'd ask about taking it before you take the MTX, as it worked wonders for me.

On another note, I have stopped reading every single side effect from the literature that comes with the drugs I have to take for RA. I just scares the heck out of me, and plenty of people take these meds with none of the really terrible side effects. I skim over them, but try not to focus on them for my sanity. I hope this helps-remember, you're not alone, and you can search this site and find all sorts of information, which has been very helpful to me. Good Luck!!!

Ladywriter
Rheumatoid Arthritis, Chronic Pain, Chronic Major Depression, Generalized Anxiety Disorder, Schizoaffective Disorder, Recovered Alcoholic w/15 years Continuous Sobriety


Lynner51
New Member


Date Joined Nov 2009
Total Posts : 1
   Posted 11/20/2009 7:31 PM (GMT -7)   
Am I the only one who hasn't felt bad on MTX?
I was really scared to start because I heard such bad things about it.

SunnyJess
New Member


Date Joined Nov 2009
Total Posts : 1
   Posted 11/23/2009 12:26 PM (GMT -7)   
Hi Lynny23,

So glad to see this discussion - my rheumy put me on MTX today and I was trying to find out more about it. I think I'm going to wait until my work week is over, too - though hopefully I won't have side effects...

Jess

Lynny23
Regular Member


Date Joined Jul 2009
Total Posts : 49
   Posted 11/24/2009 2:23 AM (GMT -7)   
hi everyone- im updating you on the weekend since I took my first dose of methotrexate on Friday. Well- thankfully I didn't have any side effects. I was a wee bit tired but thats it- im so relieved. I felt more sick with worry before I took it than after. I hope that it stays that way although I increase my dose in a few weeks. But for anyone starting for me, it wasn't bad at all- I took it after eating and drank lots of water with it.
Good luck everyone!!!

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 11/24/2009 7:23 AM (GMT -7)   
Hi Lynny..that is wonderful news! I hope you have continued success with MTX :-)
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