Starting Methotrexate part 2

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sjkly
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Date Joined Dec 2007
Total Posts : 2113
   Posted 6/29/2009 7:20 PM (GMT -7)   
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?

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 6/29/2009 11:19 PM (GMT -7)   
I'm still not good. On 20 mg of mtx, plus humira and mobic, still getting inflammation in my knees, carpel tunnel, bursitis in my hips, lower back pain and now neck stiffness. Plus my cysts on my ovaries are playing up and I currently feel like I'm starting with flu!!!! I just want to be back where I was when I was first on humira!!! Sorry about the big moan, having one of those days! Golitho

ladywriter
Regular Member


Date Joined Jun 2009
Total Posts : 112
   Posted 7/3/2009 5:19 AM (GMT -7)   
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)


sjkly
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Date Joined Dec 2007
Total Posts : 2113
   Posted 7/3/2009 6:20 AM (GMT -7)   
Yea, I had insomnia the night of my first dose which my rhuemy also said was not caused by the MTX. I was scarred to take those first few doses too. If you are still that tired on days you take the MTX I would try one (or both) of two things. Try taking the 3 mgs of folic acid everyday or buy folinic acid (fully reduced folic acid so its bioavailable even with the MTX). You can get folinic acid at some vitamin shops or health food stores.

ladywriter
Regular Member


Date Joined Jun 2009
Total Posts : 112
   Posted 7/5/2009 5:18 PM (GMT -7)   
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

sjkly
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Date Joined Dec 2007
Total Posts : 2113
   Posted 7/5/2009 8:16 PM (GMT -7)   
That is exactly what made a difference for me. I started 3 mgs of folic acid on a friday morning took the mtx that night three miligrams of folic acid saturday morning and that was the first time the MTX did not make me feel awfull. I take 3 mgs of folic acid everyday.

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 7/6/2009 7:34 PM (GMT -7)   
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

ladywriter
Regular Member


Date Joined Jun 2009
Total Posts : 112
   Posted 7/7/2009 1:17 AM (GMT -7)   
golitho,
I've been taking 7.5 mg of MTX, 17.5 mg Prednisone, and just started 3 mg Folic Acid every day, not just around the MTX day. I've apparently done it right and didn't know it-I take the Folic Acid first thing in the morning, and the MTX every Saturday night an hour or so before bedtime, since it puts me to sleep. At least it was putting me to sleep, but this last time I had insomnia after taking the MTX-go figure. Maybe I had too many energy drinks that day.

Saw my rheumy today, and he's bumping the MTX up to 10 mg and bumping down the Prednisone to 15 mg. I'm thinking that with a continuous level of Folic Acid in my system, maybe the side effects of the MTX won't get worse as the dosage increases. I hope, anyway. It's good to know that I can go up to 5 of the Folic Acid if I need to. I took a TB test today, and if it is ok, he wants to start me on Remicade in 4 weeks. Thanks for asking.
ladywriter
Rheumatoid Arthritis, Chronic Pain, Chronic Major Depression, Generalized Anxiety Disorder, Schizoaffective Disorder, Recovered Alcoholic w/15 years Continuous Sobriety

Post Edited (ladywriter) : 7/7/2009 2:29:37 AM (GMT-6)


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 7/7/2009 4:28 PM (GMT -7)   
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.

ladywriter
Regular Member


Date Joined Jun 2009
Total Posts : 112
   Posted 7/7/2009 11:47 PM (GMT -7)   
That's good to know about the folic acid-Thank you!!! I might just go ahead and take 5 mg preventively that morning. Anything that relieves the side effects is worth trying. How much MTX do or did you take? Do you find it useful to take that amount of folic acid every day, or just on the day of taking the MTX? I'm finding that taking 3 mg daily, and I've only been doing it a short time, doesn't help much with the fatigue. I'm really wiped out energy-wise until Tuesday afternoon. It's weird, like clockwork, I take the MTX Saturday night and by late Tuesday afternoon I start to get my energy back. But then my energy comes and goes, and as far as outside activities go, I'm only good for 3-4 hours of errands, doctor's appointments, or even fun stuff on any given day. By the time 4 hours has gone by, I'm ready to curl up in a ball and cat-nap an hour or two, so I have to head home from whatever I'm doing if possible (unless I'm at a medical appointment).

dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 7/8/2009 10:29 AM (GMT -7)   
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 :-)
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007, Localized Scleroderma 2009, Raynauds 2009
 
Meds: Plaquenil 400mg/day, Pred 2.5 mg/day (tapering), Methotrexate 10mg/week, Hydrocodone PRN, Flexeril PRN, Fiorinal PRN, Baby aspirin, Prenatal Multi, Vit E, B12, Fish Oil, Biotin, Calcium, Folic Acid


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 7/9/2009 7:37 PM (GMT -7)   
I take 3 mgs of folic acid every day. I take 20 mgs of mtx every week. When I ran out of perscription folic acid and took 3 800mcg tablets instead of 3 1mg tablets I noticed some increasing fatigue which went away when I contacted my doc for a new script and went back up to 3 mgs.

ladywriter
Regular Member


Date Joined Jun 2009
Total Posts : 112
   Posted 7/17/2009 10:26 PM (GMT -7)   
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 : )

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 8/21/2009 6:52 PM (GMT -7)   
The MTX doesn't even really start to help until much later then the 4th dose so if you are already noticing a difference it will just keep getting better.
I had that horrible fatigue for a few weeks from the drug (after having it for months from the disease) but it did go away.
Currently I am doing great. My doc raised my MTX to 20 mgs in March and since then (two weeks after) I have been symptom free.
This is the longest I have gone without a swollen joint in 14 years.

SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 8/23/2009 7:24 PM (GMT -7)   
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 :)?
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