New Med Available

[nomdeguerre0850]

Northera, aka droxidopa, was approved by the FDA last April and just became available to be prescribed in the US yesterday. It is the first drug specifically targeted for orthostatic hypotension. Treating hypotension with midodrine, as most of you already know, is an off-lable, although often effective, indication. Before, droxidopa was only available, I think, in Japan.

Ivabridine is another promising drug that is in use in Europe and often used off-label to treat POTS. It decreases heart rate while maintaining cardiac contractility. (I couldn't tolerate a beta-blocker, but the ivabradine has been very helpful). FDA has fast tracked and prioritized it. Hooray!

Much of the progress being made in treating dysautonomia is due to some dedicated research champions, the staff and volunteers of Dysautonomia International fighting hard for us, and a lot of work and effort by patients reaching out to each other and doctors to help spread the word. (www.dysautonomiainternationl.org)

We're making some progress!

[corina]

That is good news! I'm in the Netherlands and have been asking my doc for this med so far without him getting enthousiastic. It isn't approved here and I'm not aware if the manufacterer has been trying to get it in here. I hope it will be helpful to those of you who are going to give it a try!

[abetterjulie]

This is so exciting for me (and us)! I just talked with the nephrologist yesterday, and he was saying he had heard of this medicine, but wasn't sure when it would be available or what the cost would be. It would be great for me to take, so I'm going to call the pharmacy and ask about its availability.

[Katybug]

Great news! I hit an all time bp low yesterday of 64/42 in my immunologist's office. I'm actually glad it happened in the doc's office and could be documented. (And that was an hour and a half after I took my midodrine. Kind of disturbing. ) I was doing well with my bp for a long time but ever since I've been in this inflammatory flare it's been low with occasional narrow pulse pressure. It's good to know there's an alternative if this doesn't resolve. The immunologist is trying me on a burst of prednisone which has made me better in the past. We don't know if the low bp is related to the inflammatory process or just coincidental.

[corina]

Katy, just a question, do you think it could be possible your low bp was caused by your surgery? That is what happened to me and ever since I'm struggling to get it back up. Unsuccesfully so far unfortunately

[Mike83IRL]

For those of us in Europe,Droxidopa has orphan drug status for treatment of Pure Autonomic Failure (PAF) and Multiple Systems Atrophy (MSA),since 2007.not sure how this effects availability or if it can only be prescribed by certain doctors in specific circumstances

"According to the EMEA, orphan medicinal products are for diagnosing, preventing or treating life-threatening or very serious conditions that are rare and affect less than five of every 10,000 persons in the European Union "

Anyone on the European side know anymore about this?

[Katybug]

Corina,

I don't really know the answer to your question. I was actually feeling really great for the first 3 weeks after my surgery. After the first 5 days I was putting my neck brace on and walking with my friends or family when they walked my dog for me and I felt great doing it. After the third week, I have slowly slipped into this flare. I also wasn't great going into surgery, so I was rather excited I felt better immediately after the surgery. My suspicion is that it was starting to come on prior to surgery and the extra rest and fluids of the surgery may have made me feel temporarily better. I've been on the prednisone for a day and a half and I feel a bit better already. I guess we'll have to see. Sorry you aren't feeling well. Any little thing seems to set us off.