That was the least offensive word I could think of. I had mtx on Friday and I had seizures Saturday. :( Not full tonic-clonic but convulsive ones. I'm epileptic from my first stroke, but I've been pretty well-controlled. Two in one night is not good, but fortunately I had Ativan to take and stop the cycle. I'm very tired and swollen today. Between that and my soaring blood sugars, I think perhaps this mix is not for me. My sugars were very well in hand before I started the leflunomide, but they aren't any more. I've been referred to a diabetic specialist, but I am completely unwilling to screw around with my epilepsy control. Been there, hated that. I understand that side-effects go with the territory, but this scares me spitless. I'll call the rheumy tomorrow and see what she thinks. Gleh.


P.S. The picture is Mission Creek, I live in a beautiful place!

15 Replies

  • Hello

    Good luck tomorrow, stand up to your belief there is only one person that understands your body that is you. Your Doctor is the one who understands our treatments so between you both you have a supposed winning team


  • Yuk. Is all I can say. Let's hope someone on the health team can get the right balance to control everything. And yes you do live in a beautiful place.

  • Yuk is a good word. Slightly less errrmmm spicy than some I've used. Glad you liked the picture, and I'm feeling strangely hopeful that things will sort out. Irrational, but pleasant :)

  • Yep if necessary you need to stand firm over the epilepsy control. If your instincts tell you that Leflunomide is messing about with other equally serious health problems then stick with your gut feelings on this. Hope your rheumy can find some better way for you at last.

    I live in beautiful places too - two of them just now. Mission Creek looks very like the parts of Scotland we drove through earlier today. X

  • Beautiful place. Looks so calming. Hope you soon feel well enough to sit there and relax. Take care. Thinking of you. Babs x

  • I'm going out for another adaptive hike on Thursday, so I'll have more pictures and a good dose of nature to tide me through. xx

  • Poor Bats. They all have one thing in common... you! And no-one understands your priorities better than ... You. Good luck with getting them acknowledged and treated. Thinking of you. Jo x

  • Thanks Jo, I'm getting more comfortable with the position of my own advocate, I think. I'm feeling a little fierce about it today. Thinking of you, too. xx

  • Oh darling i feel for you, i don't know how you suffer as i don't have any after effects of mtx,but if it is giving you fits then your right to speak to your rheumy about coming off it darling. You can't suffer like that every time you take it. Big gebtle hugs from across the pond with love darling.xxxx

  • Hiya Sylvi, This is the first time I've had a seizure the day after, but it's not something I want to repeat. I think it's the leflunomide screwing with my sugars, honestly, but it's only the second week that I've had the increased dose of MTX, so who knows? Hugs back from this side of the pond to yours! xxx

  • Wow, the picture is stunning. I would love to visit Canada at some point. We have family in Ontario ,and we keep saying we will visit.

    It's blustery and raining here today. Although I can see the sea from our bedroom window which is nice . I would love to live near scenery like that.

    I agree with you Bats, I wouldn't want to mess around with my epilepsy meds. Either.

    Take care.

    Jane x

  • Hi Jane, I'm on pretty much the opposite side of the country from Ontario, but I've been there, too, and it's amazing. I'm about a four hour drive from the ocean, and I sometimes wish I lived closer. I do love it here, though, and I can quite imagine living anywhere else.

    Thanks for the support, I'll be calling the rheumy's office again today. *grumble*


  • So sorry to hear this, as if you haven't got enough problems. I agree that in this situation, you have to go with your gut feeling, and draw a line. Hope you get something different sorted out asap.

    Best wishes, Mavis xx

  • Thanks Mavis, I haven't heard back from the rheumy yet and I'm kind of afraid she'll think I'm just being neurotic. I appreciate the support :) xx

  • So sorry for your troubles/worries! It's so hard when you have multiple illnesses and have to try to juggle all the meds to accommodate all of them. My heart goes out to you. I hope your doctors can get everything straightened out for you.

    You do live in a beautiful place! It looks much like the large creek we had running through our little farm that we recently sold. I loved sitting and listening to it.

    Gentle hugs to you today!

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