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View Full Version : Well..here we go with the Methotrexate....



SleepyInSeattle
05-08-2012, 07:38 AM
After 20,000 appointments with doctors and audiologists and audiograms and MRIs and CTs and vampire phlebotomists sucking every last drop of blood out of me into a million teeny glass vials and so on, we're officially at a diagnosis of Autoimmune Inner Ear Disease...and possibly the beginnings of Graves (thyroid is looking a little weird).

*sigh*....

So the plan is to start Methotrexate today and over the next month/6 weeks to taper from the 60mg/day of prednisone I am on now to a full weekly dose of Mtx. (I am also taking prescription Folic acid with the Mtx to mitigate side effects). Unless they come up with something better, looks like I will be on the Mtx for the rest of my life, or until they come up with something better, or until I decide I don't want to hear anything anymore, LOL....

I will also stay on Plaquenil, since I seem to tolerate it extremely well and it might help also, in different ways.

And then it's just the "wait and see" game.

My audiogram yesterday was not significantly changed from a week ago - but my word recognition went from 4% to 40%, which just BARELY puts me into the range where they are willing to try a hearing aid....some research shows that Mtx can improve that even more in some patients, so I am hoping that'll happen to me as well. They can see improvement even 6 months or a year down the road. They won't fit me for one for 6 months or so...they will continue testing with audiograms and MRIs (to watch the areas of inflammation) during that time to see what the Mtx is doing and to see if/when things stabilize before making any decisions.

I really like my Rheum. My husband came with me yesterday, and we had a ton of questions - the doc was so patient and listened and talked with us for almost an hour and a half. He and his partners in the department have treated many people with this condition, and have had some good results - at least it's not like I am the only person who is dealing with this in the medial practice. The advantage of living in a big city with a research center!!!! Once life settles down a little i will sign up for their research programs to see if my troubles can offer any help to anybody else. There are no clinical trials on this right now, but some thing coming down the pike in the next few years, maybe.

I was very pleased to hear that he's seen VERY FEW people have the damage move to the other ear once they are on Mtx. I don't like the idea of taking such horrible chemicals for the rest of my life, but I prefer that to going completely deaf. And I guess there's the added benefit that it will probably also keep any other Lupus/Sjogren's symptoms in check as well. Or at least we can hope.

Anyway - that's the scoop on me.

So I guess I will be joining in the discussions and questions about Mtx...than you all so much for all the wonderful information and support you have already given. It has meant the world to me through this rather scary and difficult couple of weeks!!!!!

magistramarla
05-08-2012, 01:36 PM
Sleepy,
Good luck, and keep us informed. That is fascinating info that MTX can stabilize or improve AIED. No one told me that, but perhaps that is why mine stabilized after taking it. I'm not on MTX now, and so far, my hearing is remaining stable. I dread going back onto it, but I might wind up taking it again if things start to go downhill.
I'll really be interested to see your reports on your progress with this.
Hugs,
Marla

tgal
05-08-2012, 03:35 PM
Hope it all goes well for you! I am going to have to get my ears tested because I swear I can't hear anything (my daughter agrees with that too LOL). The adjustment to the MTX isn't that bad. The first few weeks are the hardest on the stomach but your body does adjust.

I will keep my fingers crossed that everything goes smoothly for you!

Nonna
05-08-2012, 04:48 PM
Welcome to the MTX club. I've been on it for almost a year; it does help. But right now I think I have a tummy bug so I think it's not a reaction to MTX. It's not bad and I normally feel much better than I did. I'm actually making my granddaughters softball tournaments

Good Luck and Good Thoughts

steve.b
05-08-2012, 06:37 PM
i've had both mtx and plaquenil for a while.
i tolerate both very well.
i wish you the joy i have with them.

here's hoping !!!!!!

SleepyInSeattle
05-08-2012, 08:45 PM
Well I took my first dose (15mg) today at around noon...have had no ill effects at all so far. The dose will go up 2.5mg each week for the next several weeks until I am at 25mg/week, which is what they are aiming at as a maintenance dose. During that time they're transitioning me off Prednisone.

I am really hoping my cast-iron gut maintains its tradition and doesn't cause me grief.

Thanks again for all the information and support and good wishes....and wishing the same for all of you!!!

n.mac
05-09-2012, 06:07 PM
Good luck with the mtx-I was on it for several months last year with no side effects .

It did me no harm but did me no good either. I was then put on imuron which did not agree with me at all.

I have now been on cellacept for 6 weeks so far so good,I don't feel any different but at least no side effects as of yet!