Saturday, April 30, 2011

To metho or not to metho, that is the question...

So when I met with my new rheumatologist last week, he said overall things looked like they were in good shape and he thought my treatment regimen was mostly appropriate. I say "mostly" because at the end of the appointment, he did mention that I might want to consider going back on a low dose of methotrexate to see if that would eliminate the lingering pain I have in my feet.

Right now I'm taking Enbrel (25mg twice a week), Plaquenil (200mg twice a day) and Aleve (1-2 pills twice a day). Most days I do really well (as long as I don't try to run, which, like my old rheumy, this doctor doesn't think is a good idea given my foot erosions). The main lingering issues are that every morning I hobble out of bed as my messed up feet get adjusted to the idea of walking again. And when I walk for more than about 30 minutes, the tootsies start to act up and I have to rest. The last rheumy said I was in remission, and this lingering pain was just something that would always be there due to the foot erosions. This rheumy thinks adding 4 methotrexate each week might clear things up. But, he's leaving it up to me to decide.

What to do, what to do... I was on methotrexate for 6 months when I was first diagnosed (along with prednisone at first, with the addition of Enbrel 3 months in). I got up to 12 pills a week. And the day after I took those pills, I was a useless heap. The fatigue was crushing. It would get a little better each day until I had to take the pills again - rinse, lather, repeat. I also lost a lot of hair and was very self-conscious about that. This doctor says those side effects might not happen with only 4 pills a week. But is it worth the risk? Honestly, I have it pretty good right now. I can do most things that I want to do. Yes, I have to rest more often and there are days when I'm achy as hell... but at least I have a full head of hair! And energy!
(And I can have regular cocktails... a plus for summertime!)

What are your thoughts? Anyone out there taking a low dose of metho in addition to Enbrel? How are the side effects? Love to hear your thoughts!

8 comments:

  1. I have been on a combo of methotrexate and Enbrel since the end of July. At first, I had hair loss that freaked me out. However, after a few months the shedding stopped and I have been fine since then. The decision to add more drugs is a really tough decision, I know.

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  2. I think at a certain point, your general quality of life becomes more important than "what things could be." If the metho makes you lose hair and have other unpleasant side effects, and your overall quality of life now is good, then it seems best to enjoy things where they are now. Plus, the metho means no baby plans. Are you still prioritizing trying to get pregnant?

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  3. Right now, I'm kind of thinking along the same lines as you, Katie. Why fiddle with it if it's not that bad now, right?
    Baby is on the way back burner for now since we've just moved all the way across the country and are still settling in - so that wouldn't be an issue. Still, metho is so toxic... pregnant or not.

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  4. Hi there... have you contemplated altering your diet drastically? I know it may sound crazy but I was on Humira/Plaquenil/Naproxyn & Prednisone for yrs. I was set to start remicade and I decided to try this elimination diet http://www.frot.co.nz/dietnet/reviews/mcferran01.htm and I have been off all of my drugs and doing better than I have in years. My blog is www.jensrajourney.blogspot.com Take care!

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  5. i'll be back on methotrexte with enbrel once i have another kid. no way would i go on it with plans to get pregnant unless the pain was unbearable.

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  6. I posted this in response to a previous post of yours, but I will say that a vegan diet really helped my flare ups. I have had 2 in 3 months, and instead of lasting 10+ days, they lasted one. Each. That has NEVER happened to be before.

    I also just found out I am pregnant, so I quit my Plaquenil while waiting for a final verdict from my rheumatologist - whom I MUST call tomorrow.

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  7. So I just found your blog in my search for someone to relate to with my condition. Don't know if you started on methotrexate after all, but I am 23 and I have been on it since age 16. I take 6 pills and I haven't experienced much hair loss. Some fatigue, but I take it at night and its not overwhelming. Hope this was reassuring, take care!

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  8. I don't take Embrel but was on Remicade and just started Actemra last week. I have been on MTX for 2 years and I would ask your doctor about going on injections. When I switched to injections I had no side effects. I do my shot before bed on Sat night then I sleep off most of the fatigue and I have Sunday to take it easier then the work week. I also agree with the other comments on diet. I haven't really found relief from elimination but I do focus on anti-inflammatory foods and eating no processed foods or sugar and have really felt a difference. Good luck!!

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I welcome your comments and experiences! If you have any questions, I will try to get back to you as soon as I can.