Friday, January 25, 2013

Methotrexate, boo

I've been taking methotrexate for 18 years.

That is a really, really long time. And recently, for whatever reason - I'm not really sure why - I've started to hate it. 

It's not like it's doing anything new: my only real side effect is hair loss, and that's been happening for years. I've just grown, for some reason, to dislike it intensely. Thinking about it makes me queasy, and (confession time) I've started to skip it occasionally (I know - bad patient! However, after 18 years on a pretty wide range of doses, from almost-nothing to very high, I'm not worried about fiddling with it).

I just don't like it. I don't like that it makes me worry over every glass of wine. I don't like that it makes my hair come out in clumps and has given me bald patches. I don't like that it's a chemo drug and an abortifacient. I don't even like that it's yellow and makes awful looking stains when it spills.

I debated whether or not to even post this, because the last thing I want to do is frighten someone who is about to give methotrexate a try. The thing is, I know I am being a bit silly. Methotrexate has been perfectly safe for me - I've never once had iffy bloodwork in all my years of taking it, and my nausea went away completely after the first couple of weeks. And it did, it absolutely did, halt the severe damage that was occurring to my wrists, knees and and elbows when I was a teenager. I don't regret taking it.

Nevertheless, I'm ready to stop. I don't think it's doing much for me anymore on top of the Humira, Plaquenil and Celebrex, and, while my disease activity is definitely worse that it was a few years ago, it isn't as acute as it was in the summer, and when I first started on Humira.

My rheumatologist is awfully keen on it, though, especially paired with a biologic. I'm going to try and convince her to let me try just the Humira, Plaquenil and Celebrex and see how things go. I hope I can. After 18 years, I'm more than ready to know what my body feels like without it.


Cathy said...

Good luck Helen. I know exactly how you feel. When I went off meds several years back, it was because I could not force myself to take methotrexate one more time. It was as if my stomach would not allow my mouth to open. Are you on a low dose now or can you slowly taper off and see how your body feels? I am on Arava rather than methotrexate now due to a lot of nodules. Occassionally I reduce my dosage to see how I would do without. Let us know, okay?

Helen said...

Thanks so much Cathy - it's nice to hear from someone else who has felt the same way. I am on a medium-high dose right now - I was on quite a high dose but have tapered a bit since the summer. I missed three weeks over Christmas and felt no difference (I also noticed a lot less hair falling out), so I think I could definitely handle a slow tapering off. I think I will give it a try.

Polly said...

Well I don't know how you feel ... yet ... I've only been taking it for about six years and had virtually no ill effects ... BUT I can empathise with how you feel and imagining feeling that way myself in a few years' time. Might be a good idea though to find out from your rheumy WHY she's so keen that you continue on it? Is it just 'Why rock the boat?' or does she have real scientific evidence to think Humira works better with it?

Anyway, very best of luck with the being rid of it!!

mary said...

Helen, I read your blog but don't often post. I'm sure you have a lot of lurkers out there. Anyway, after 5 year of injectable mtx I just went to the doctor and told him I was done with it. It has never agreed with me and the 2 days of feeling unwell each week just got to be enough. I just couldn’t inject one more dose. I've been lucky with just the Enbrel and NSADS. So it worked out ok for me. Good luck, I know this is one drug you can stop and start again without it loosing it's effect so what is the harm.

Helen said...

Hi Polly! I'm glad you're doing so well on it. :) From the discussions we've had, I think my rheumy's view is more "don't rock the boat". I know it is very common to give a biologic together with a DMARD, and many docs find they work better together, but since Plaquenil is also a DMARD, I'm hoping it will do the trick just as well.

Mary - thanks for posting! That's a good point re stopping and starting MTX. It will work just as well if I need to go back on it. I'm also glad to hear you're doing so well on Enbrel + NSAIDs! That's great. Enbrel did wonderful things for me for many years. :)

lnicole said...

Hi there. Just wanted to say hello and that i had found my way over to this blog a week ago (just dx with RA this week after a yr of wondering). Love your drive & determination which is a nice perspective when one doesn't quite feel it! Sorry to hear the MTX isn't helping anymore but glad things seem to be steady. Started Enbrel this week (on pred & Imuran also) and hoping it is a "miracle " drug for me. :)
Thanks for letting me follow along!

Helen said...

Hi Lisa, nice to 'meet' you! I'm glad you said hello.

I hope Enbrel does amazing things for you, too! It definitely did for me. Let me know how things go!

Remicade Dream said...

I no longer take MTX - I really, really hated it. I lost a day every week when I took it. But just wanted to let you know what my rheum had to say about it. As you know, a lot of biologics stop working after a number of years - my rheum said that this happens because we start building antibodies against the biologic. Apparently the MTX helps prevent the body from building those antibodies. So pairing the biologic with MTX may not only make it work better, it may also make it work for longer.

I cut the cord anyway. I haven't been on MTX for a few years now, and my Remicade is still working. I hope the same happens to you!

Helen said...

Thanks for your comment, Remicade Dream - I have never heard that from my rheumatologist, but that makes sense. I'll ask her about it. I think we are due for a long discussion.

I might be willing to compromise with a very low dose in pill form (I irrationally hate the yellow liquid stuff). Although, it's encouraging to hear you are doing well without it and the Remicade is still so helpful! I have a lot of thinking to do.