New RA Diagnosis-Methotrexate Question

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ladywriter
Regular Member


Date Joined Jun 2009
Total Posts : 112
   Posted 6/27/2009 6:59 AM (GMT -7)   
I'm 49 and was diagnosed with RA 10 weeks ago. Been on Prednisone for 9 weeks, and through increasing from a tiny starting starting dose (5mg to currently 17.5), have much less pain. I started taking 7.5 mg of Methotrexate last week, and it knocked me on my butt for nearly 4 days. Has anyone had that experience, especially with such a low dose? My rheumatoid factor is 179, and I don't know if that's relevant or not.

I took my dose at 2pm and thought I'd run errands for a couple hours before it kicked in, not knowing how short a time it would take. I barely managed to get my laundry in the car 2 hours after taking it, and when I got behind the wheel I was so disoriented that I knew I couldn't even consider driving. I went back to my apt and fell asleep for 8 hours, woke up for 3 hours, and fell asleep another 11 hours, waking up the next day. For the next 2 1/2 days, I felt like I had the flu without the fever. Aches, joint pain, gastrointestinal problems and really severe fatigue.

Has anyone had a similar experience and did it get any better with time? I'm also taking Prilosec and 1 mg of Folic Acid daily, along with assorted psych meds and oxymorphone for chronic muscle pain. Your relevant experience would be greatly appreciated.

Thanks,
Ladywriter

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 6/27/2009 9:44 AM (GMT -7)   
I take MTX too. You don't mention taking folic acid but I am guessing you are not taking enough-You can take up to 5 mgs per day, it counters the side effects of mtx and does not reduce its effectiveness. You really should take the MTX within an hour of bed time-really. And drinking tons of water the day of your dose and the day after really helps as well.
There is a thread on this board that is titled something like New to Methotrexate and I am scared-it is a long thread a whole bunch of us tell our stories about starting out on Mtx.
By the way, the Mtx really helped me I hope it does for you as well.

ladywriter
Regular Member


Date Joined Jun 2009
Total Posts : 112
   Posted 6/27/2009 10:59 AM (GMT -7)   
sjkly,
Thanks so much for your reply! I've decided to take the MTX before bedtime, since it will knock me out anyway. I'll try more Folic Acid (I'm currently on 1 mg daily) and drink tons of water instead of my usual energy drinks. They don't work after I take the MTX anyway, so no loss there. And I'll get a little more creative searching for threads. I'm brand new to the site, so I'm still getting my bearings.

Thanks again.
Ladywriter

momto3
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Date Joined Nov 2006
Total Posts : 1331
   Posted 6/27/2009 2:25 PM (GMT -7)   
Yes!!! I've been on it for a few years now and when I first started, the first month was horrendous sorry! I felt like I had the flu with body aches and could not stay awake either, it was miserable.  I ended up taking something other than folic acid because it wasn't enough and I needed a prescription, it was to the point that 10am in the morning would roll around on a saturday and I would still be in bed, too tired to get up.  Please know that it does get better and the initial side effects will pass.

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 6/27/2009 7:13 PM (GMT -7)   
ladywriter-don't hesitate to ask questions even if they might have already been answered. I only suggested that particular thread because it really covers a lot of information on mtx-probably more then you will get in this thread.
I take 3 mgs of folic acid because the first two weeks I was on mtx were horrible-I went up to 3 on my own and when I told my rhuemy at my next appointment she was really pleased (because it controlled the side effects so well-we had actually been thinking I would not be able to take mtx at all) and wrote a script for the higher amount.

ladywriter
Regular Member


Date Joined Jun 2009
Total Posts : 112
   Posted 6/29/2009 3:07 AM (GMT -7)   
Wow-taking extra folic acid really helped with the MTX side effects!!!
Thanks so much for that advice!!!

I took 3 mg of folic acid (instead of the prescribed 1 mg) Saturday morning and took 7.5 mg MTX Saturday night before bed since it knocks me out, and Sunday when I woke up the only thing that hurt was my hands. No flu-like symptoms AT ALL. I was still more tired than usual, and my hands hurt more than usual, but the other flu-like symptoms I had last week were completely gone. What a blessing. I even managed to throw on some clothes from the laundry hamper and drive to 7-11 for something I needed (it's only 4 blocks of side streets away) late Sunday afternoon.

Thanks for your kindness and honesty. I found that long thread about MTX, read nearly every message on it, and learned a lot. I'm still scared of the RA and the meds' possible side effects, but not as much now that I see so many people are living with it, and getting better.

This site is truly a Godsend.

_Christina
Veteran Member


Date Joined Feb 2007
Total Posts : 553
   Posted 6/30/2009 12:33 PM (GMT -7)   

Ladywriter,

I was just as scared as you.  Even when I learned more about the side effects.  Even when I made peace with what the side effects were going to do to me.  I am on 22.5mg of MTX each week. I split the dose to 12.5mg at night just before I go to sleep.  I also take a sleeping pill, so I sleep through the stomach upset that I get.  I take the rest (10mg) 12 hours later with a med called Leuvacan Calcium that settles my stomach.  We split the dose to make the side effects less severe.  My worst day is actually the next day because I don't have the med to settle my stomach that day. (If I did not have that med the 1st day it would be worst, but the med works really good)  All in all, I loose 2 days out of the week, every week.

I have taking MTX for about a year.  The side effects did start off really bad, and then got better- but for me they have gotten a bit worse over time.  (not nearly as bad as the beginning)  I do have amazing fatigue, but that is because several of my meds combine to cause it.  I do have borderline kidney and liver problems, but that is because several of my meds combine to cause it.

You said that you are taking several other meds including psyc meds.  Be very careful and know how the combination of the meds are going to effect your body.  Some of them can have a symbiotic effect.  Because I am bipolar, one of the things I found is that when I took prednisone I was on an artificial micro-manic.  Because of that, when I got off of it I went into an artificial pronounced depression.

I cannot stress enough how important how important it is to find out how your meds from diffrent doctors work together in your body.


 
 
Christina
 
Current medications:
Bipolar treatment-Lamictal, 200mg, Mood stabelizer, daily(main side effect: brain fog) Bipolar treatment-Cymbalta, 40mg, Antidepressant, daily(main side effect: GI upset, decreased clotting, insominia) Anemia, Fatigue treatment- Iron supplement, 65mg, daily(main side effect: constipation) Insominia treatment- Ambien, 10mg, daily(main side effect: amnesia eppisodes between taking pill and falling asleep) Mania treatment- Alprazolam, .25mg, Very rarely(main side effect: fatigue, slowing of thoughts, depression of CNS, can't take ambien or vicodin when on it) RA treatment- Plaquenil, 400mg, daily(main side effect: GI upset, decreased clotting) RA treatment- Methotrexate, 25mg, 1X weekly(main side effects: hair loss, stomach upset, mouth sores, sore muscles, fatigue, brain fog, compromised immune system, decreased Folic Acid absorption) GI upset treatment- Leucovorin Calcium, 10mg 1x weekly(main side effects: ?) Folic Acid defintioncy- Folic Acid, 1mg, daily(main side effects: ?) RA treatment- Prednisone, 8mg(and decreasing...)daily(main side effects: increased manic eppisodes, constipation, brain fog, bone density degeneration, compromised immune system) Multi-mineral Supplement (main side effects: constipation, GI upset) Constipation treatment- Docusate Sodium, 200mg, daily(main side effects:?) pain control- Motrin, 800mg, PRN Q6hours daily(main side effects: GI upset, decreased clotting) Pain Control- Vicodin, 5-500mg, PRN Q12hours regularly (main side effects: brain fog, fatigue)
 
 
 
 


ladywriter
Regular Member


Date Joined Jun 2009
Total Posts : 112
   Posted 7/3/2009 4:32 AM (GMT -7)   
Christina,
Thanks for your support. I've been trying to find out about the drug interactions, since I'm on so many, and my shrink has been most helpful. A lot of my pain/anxiety drugs do interact, and it takes a tremendous amount of concentration to overcome that effect. I had a bad reaction to a large dose of steroids in the past-they made me manic, and if I'd had insurance I'd have committed myself to the nearest psych ward at the hospital. Because of that history with steroids, we started slow and low on the prednisone, gradually nudging in 2.5 mg increments the dosage up to a therapeutic range (17.5 mg) and I haven't had any problems with any weird emotional stuff, at least nothing out of the ordinary.

However, I've been having insomnia the past 2 weeks (since I started taking MTX), and I thought it was from emotional stress because my rheumy told me MTX doesn't cause insomnia, but my shrink says it does. The major stressor (I thought) was the status of my disability claim through my work's disability insurance company, which has finally been resolved (Yay!). But I'm still having the insomnia, the Sonata doesn't work at all, and I'm scared to take Valerian, a great herb for insomnia that has worked well in the past, because I'm so full of drugs I'm afraid of an interaction.

Has anyone taken Valerian with MTX and/or prednisone? I see my rheumy Monday, so I'll ask him about it, but wondered if anyone out there has tried it, and if it worked.
*****RA Medication******
Prednisone 17.5 mg daily,
Methotrexate 7.5 mg weekly
Folic Acid 1-3 mg daily(3 mg day before, of, and after MTX)
Prilosec (20 mg day before, of, and after MTX)
Iron 325 mg daily
Vitamin D 50,000 IU once weekly
Boniva 150 mg once monthly

*****Pain Meds for muscle/nerve damage from 2 auto accident******
Opana (oxymorphone) 20 mg timed-release twice daily
Opana (not timed-release) 5 mg up to twice daily for breakthrough pain
Tylenol 1300 mg up to 3x daily as needed
Ibuprofen 800 mg up to 3x daily as needed
Flexeril 10 mg daily as needed

*****Psych Med******
Cymbalta 120 mg daily (Chronic Major Depression)
Zyprexa 20 mg daily (Schizoaffective Disorder)
Clonazepam 2 mg 3 times daily (Generalized Anxiety Disorder)
Sonata 10 mg daily as needed (Insomnia)

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