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Vanderbilt said I was their first patient on this new drug for hypotension. I started it about three weeks ago and it is far superior to Midodrine in my opinion. I take two 100 mg each first thing in the morning to get my pressure up so I can take a shower. Seems once my pressure is up, I am good for the day. About 6:00 pm I take a pill to lower my b/p. The Northera is suppose to have only about a three hour window, but once my pressure is up, I am good. I do not have any sides effects that I know of. I can not tell I have taken anything.

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I'm glad this is working for you. How high does your b/p get, that you need to lower it at bedtime. Is that the usual protocol for Northera ? It sounds promising for some of the rest of us. liz

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WmTate

My husband got a script from his neurologist on Monday which we haven't started due to the cost of the drug, so I am trying to figure out how to come up with close to $500.00 month. Also could you tell me in relation to midodrine 5mg how big the 100mg Northera is since my husband has swallowing issues. Thank you

Roadrunner

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WmTate

My husband got a script from his neurologist on Monday which we haven't started due to the cost of the drug, so I am trying to figure out how to come up with close to $500.00 month. Also could you tell me in relation to midodrine 5mg how big the 100mg Northera is since my husband has swallowing issues. Thank you

Roadrunner

. The capsule is smaller than an Advil . I do not know why they sent mine at no charge and they sent about 150 capsules. I do get a call every week to see how I am doing. So far so good
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That sounds promising and congratulations on getting relief from it! Do you know if Northera has the same side effect of supine hypertension as midodrine does?

That sounds promising and congratulations on getting relief from it! Do you know if Northera has the same side effect of supine hypertension as midodrine does?

. It does have same hypertension problem but should not take 6 hours before bedtime. Instructions say 3 hours
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it is not an alpha agonist like midodrine thus is less likely to cause supine hypertension. It is a precursor for norepinephrine that catalyses increased presynaptic vessicle synthesis of norepinephrine which would cause a general increase in norepinephrines peripheral actions and vasoconstriction.

Thus it would boost blood pressure but not as acutely as midodrine when supine.

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So does this mean, it typically creates a more effective sympathetic nervous system, so rather than like Midodrine an all over vasoconstrictor effect, it would be more selected as the brain would try to constrict the legs as such as a normal person and would have more of an effect doing that job as the Northera is doing what it does? rubbish way for me to ask this just in a slow mood today lol

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I read the papers that they included with the drug. It comes with a warning: Supine Hypertension and if lifting the head of your bed at night does not relive the higher pressure to discontinue. I just sent off an email to my doctor regarding just the opposite. For more than four years I have had high pressure after 3:00 pm and really high up to 220/115 and have been taking medicine to lower it, which would only lower it about 30 points. I would take it everyday about 6:00 pm regulatory. Now my evening pressure "sitting" is about 125/85 and not dizzy upon standing as the Northera is wearing off. This would be quite a miracle for me if it continues. But, it may not be the Northera since I have been on vacation for almost 4 weeks. Is it stress?People with PAF are not suppose to be able to stress themselves . I will return home Nov. 9th and today Oct. 31 th. And time will tell. By the way I do not know exactly how I got 126 pills for free but I did see where it come from. The paper said Lundbeck is pleased to offer this " starter prescription" to assist you in starting Northera therapy. The starter kit is being provided free of charge while your insurance is being investigated. In the morning's now I can stand without my pressure falling to 67/38 or so, of course after I take 3-100 mg and wait about 30 minutes. I cannot feel any side effects like Midodrine, maybe not hungry as easy. I am ok with that. Sounds like I have stock in the company but actually I have never heard of them. Included in the papers was Lundbeck phone number for support is 844-601-0101

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For those interested, the physician needs to fill out this form:

https://www.northera.com/Content/pdf/northera-treatment-form.pdf

to get a free trial. The cost with our insurance would have been $70, which isn't bad, but I'm hearing that it can be expensive depending on insurance coverage. It has to come from a specialty pharmacy that ships it directly to your house.

I am waiting for the paperwork to clear to start my trial. I currently take Florinef, which gives me about four solid hours of functioning before I start to forget things, get lost, have abdominal pain, etc. I worry about the long term side effects of using the Florinef, although I can't seem to find anything that outlines the exact risk. I have heard that Addison's disease is a possibility. I'm hoping the Northera proves safe and effective.

I'm reading that there was a concern that the long term effectiveness of Northera can wear off. Has anyone taking it experienced that problem yet?

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I've been on Northera for about a month. I had an interruption of 1 week because the pharmacy didn't read the prescription that stated we were going to titrate the drug up. They therefore didn't order the refill on time. It takes them a week to get it in from Lundbeck. That turned out ok because it gave me an opportunity to see the difference it made.

So far I love this med. I am taking 300mg three times a day. It seems to put a floor under my blood pressure and maintain it much more evenly than midodrine did. When the midodrine would wear off, I would frequently crash. I also had spikes in bp with midodrine, (150/110...much better than when my bp would drop in the am to 30/???), but my bp supine has stayed around 120/70!!! I am so excited.

I overall have felt better than I have in three years. I am out of the wheelchair, my brain fog is much better, my startle response is a little more toned down, and I actually seem to have more energy. I'm cautiously optimistic, because I certainly have been disappointed before.

The question about long term efficacy is because the only trial I could find only lasted two weeks. It's not that Northera isn't effective long term. It's just that they don't know yet. As Lundbeck tracks the response of patients, they are getting the clinical data on patients who are using it in the real world.

Although it was used in Japan for over 20 years, I can't find the studies/trials they did. Maybe they are only published in Japanese.

It can be very expensive, however. Pricing seems weird. Kaiser paid $1706 to Lundbeck and I had to pay $376 for 90 capsules. (25% as a Tier 5 drug). But on the internet, I see Wal-Mart, CVS, sell it at their full retail price for $523. Working on that whole issue, but right now I'd sell all my possessions to be able to stay on it.

More will be revealed.

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HI,
I also take Droxidopa but the other one which is called Dops. I've been on droxidopa for almost 2 years and it totally changed my life - without any sideeffects! I felt better very quickly. The first changes did I see just a few hours after had taken the first capsule but I couln't believe that my feeling was real. I thought it was placebo effect but placebo never stopped :D I love that drug. I still have symptoms but it is much more under control.

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Newbie,

What country do you live in? When I heard droxidopa would be called "Northera" in the USA, I thought it was a silly name. Now that I know has different brand names, I am going to go back to calling it droxidopa. :-) Because this forum is international, I think I'll cause less confusion.

I agree that I love this medication. I also had a hard time believing it made such a difference. Thank you for sharing that you are still loving it after two years. That's so encouraging. Have you ever run out and had to be without it? Did all your old symptoms return? Do you still sometimes feel the ebb and flow of dysautonomia, but with much smaller fluctuations? I want to know as much as you are willing to share.

Thank you for your post.

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I live in Sweden and you must order it in time (a month before running out). I'm used to have much symptoms but not that much as without droxidopa and it changes over time. Sometimes I feel quite good and than I get worse without knowing why. It just happens. I still can feel dizzy, lightheadet and so on. But even when vomiting I no longer get as low and bad as before. I feel more stabil. Droxidopa is no cure for my symptoms but it helps very much to survive daily living.

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