Please take the time to read this and call/email/whatever your dysauto doc/GP/cardiologist to discuss this ASAP in case you will need to consider alternative treatment options. Please try not to panic; nothing has been decided YET. Also, if you read the last sentence, it seems that special considerations might be made for those of us already on the drug, but I don't know how this will work. Hopefully our doctors/pharmacists will be able to get more info? I don't know if we can find out more by contacting the FDA. If anyone finds out more, please post here.
Please note, this is not a concern about the SAFETY of midodrine, but rather a problem with the company (companies?) following through with the proper protocols to completely prove through the necessary clinical trials to prove the EFFICACY of the drug. Which is to say, if you're on it and it's working for you, then you already know it's effective for YOU, so the concern here isn't something different about the drug itself but about the AVAILABILITY of the drug (possibly in the NEAR future if the company/ies don't respond in 15/30 days as the FDA is requiring).
Seriously? You are nine hours ahead of me? I so thought I got this first for once! I love you Heiferly! I so love you! You are so awesomely on top of everything!
I am not currently taking Midodrine/ProAmatine myself because I am unable to tolerate some of the side effects, but I used to take it when I was younger, and considered it to be one of the most helpful medications in my daily regime. So, this is definitely news to be taken seriously by the Dysautonomia Community.
By the way, if you are wondering about how to keep up-to-date on the latest drug information, the FDA website (www.fda.gov) is very helpful. Also, the Drug Information website, (www.drugs.com), offers a signup for email alert, which is how I obtained this information so quickly. (Though apparently not quite as quickly as the amazing Heiferly!)
I've put in messages to both my general practitioner and cardiologist (though the latter is out of town for the next week—bad timing!), so I will let you all know if/when I hear back anything useful on this. I'm trying not to stress, but this is a big deal to me because I personally don't do very well without midodrine, and I'm on it every 6 hours round-the-clock right now. Ugh!! :-(
Maybe we should be putting calls in to the drug manufacturer(s) involved and pleading with them to take whatever action necessary to make things right with the FDA to keep our medication available? I don't want to be a thorn in anyone's side ... but then again, the squeaky wheel gets the oil ... ugh, I don't know what we're supposed to do!!!
I'm bummed by this news - I was taking it until a couple of months ago when my insurance ran out and was looking forward to restarting it again Nov 1st when my new insurance goes into effect - it helped some with my symptoms - wonder what those of who used it will do
I recently started midodrine, do you guys feel that it helps? I have many syncope episodes and some so severe that i get nerological problems, numbness, ive tried the beta blockers but they don't seem to help. Does the midodrine help with the migrains and syncope episodes for you?
Reading this comment totally and absolutely made my day! Thank you so much for the update! I am not taking Midodrine at current, (I have in the past), but I have had Dysautonomia for most of my life. As you can imagine, I feel quite strongly that more treatments should be made available to treat our condition. Removing treatment options seemed like such a terrible step backwards. Thank you again for the great news!
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