Starting Methotrexate part 2

Well, it seems like they have locked our thread about starting MTX but I wanted to keep updating each other and providing help/insight to those who have to face their first dose.

The update on me is that in Dec I dropped to one plaq a day on my doctors advice-ten days later I had uvititis, inflamation in both hands and both feet and felt like I had been hit by a bus.  So, 40 days on prednisone, back up to two plaq a day and then several weeks and lots of inflamation in my hand later we decided to try increasing the MTX up to 8 pills.

Two weeks later I was inflamation free.  For the last 12 weeks I have had absolutely no RA symptoms.  That is pretty awesome.

How are the rest of you doing?

I have only taken MTX twice, so I don't yet know if it's doing anything except wearing me out for days and days! Last Saturday, the evening I take it, I had to call a friend to muster up the courage to actually take this stuff. That was a totally new experience for me. I was actually a little afraid to swallow those little pills, and although I didn't need someone to hold my hand and talk me into it, I just had to tell a friend that I was in fear. It was a very weird, humbling experience.

I've been having insomnia almost every night since starting the MTX, so I end up watching the sun come up and go to bed until about noon-thirty. I mentioned this on another thread, but thought I'd repeat it here. I get tired around 10-12 pm most nights, but can't get to sleep. My pain isn't that bad right now, mainly my hands and feet, but not bad enough to keep me awake. My rheumy says MTX doesn't cause insomnia, but my psychiatrist says it can.

I'm on temporary disability from work, and have way too much free time but no energy to do anything. I try to stay busy during the day when I do have energy, but I have to rest a lot. I live alone w/2 cats, and my apartment desperately needs a thorough cleaning, but when I use my hands too much they swell up, get red, and hurt a lot more, so I have to limit myself. I drink Rock Star energy drinks like water, and end up taking cat-naps (usually 1 to 1 and 1/2 hrs) during the day and evening. Even energy drinks won't keep me awake (I still drink coffee when I wake up for the day, more out of habit than anything else). My sleep/life schedule is so totally messed up. Any tips, anyone?

Post Edited (ladywriter) : 7/7/2009 2:20:27 AM (GMT-6)

I took my third dose of MTX last night as the fireworks were starting, ended up with insomnia and slept for about 6 hours, and today I'm absolutely amazed that I feel OK. Very little pain, kind of tired and not up for going out of my apartment for anything, but OK. I expected to feel much worse and am pleasantly surprised by how I am feeling. Something I did different this week was to take 3 mg of Folic Acid the day before, day of, and day after the MTX. I'm not certain that's why I feel ok, but maybe the MTX is working early for me. I'm pleased but baffled. Don't want to look a gift horse in the mouth though. Whatever it is, I'll take it. I see my rheumy tomorrow, and we'll talk about starting me on Remicaide. I have to get off the prednisone somehow-my rheumy made that very clear to me. So things could get rocky down the road, but today is a good day and I just wanted to share my joy. Thanks so much for all your support.

ladywriter

My rheumy gets me to take 5mg folic acid 12 hours after the mtx dose, if you take it with it you stop the mtx from working properly. She bumped me up to 20mg mtx so I could get off the prednisone, in my experience its the prednisone that causes insomnia!!! I found it so hard to come off but I finally managed, just seemed to take forever to get out of my system!!! What dose of mtx are you on? Best wishes golitho

There is a lot of research on folic acid and MTX. Taking 5 mgs per day of folic acid per day decreases the side effects and does not decrease the efficacy of MTX for arthritis patients.

I actually don't take MTX for RA however I take it for lupus and my doc said folic acid everyday EXCEPT the day I take the MTX.  I'm going to have to ask her why next time I go there since yours is saying it's ok.  Thanks

I guess the MTX was working for me after all. I had to skip what would have been my 4th dose last weekend because I had a bacterial infection and my rheumy told me not to take the MTX last Saturday until the infection was gone. I was ok for a couple of days, until about Tuesday, and then all the RA symptoms started re-appearing: really sore/painful joints, especially my hands, feet, and knees, trouble walking, and terrible fatigue. It gets worse every day, but my rheumy said I could take my new, higher dose of MTX tomorrow (10 mg, up from 7.5) so I can't wait. Except that I may have more side effects from the MTX, but at this point I really don't care. I'm taking 3 mg of folic acid every day, so that should take care of the worst of the side effects, so it may not be bad at all. I just hate how I feel so much that I want to crawl out of my skin!!! I keep telling myself it's just temporary, that I won't feel like this much longer. Sorry, I just had to whine to someone who knows what I'm talking about. I'm done now : )

Hey sj,
Glad to hear you are doing so well on the MTX.
Do you think it helps you at all for your CD?
Just asking, as Im not sure it does much for my CD but definetly helps my AS.
Jo

PS How are your sisters babies going (probably not babies anymore though. Hows your dog going too :)?