ken870 Posted March 13, 2014 Report Share Posted March 13, 2014 I am wondering if anybody on this forum plan on using northera for their pots and if you do do you think it will help. Quote Link to comment Share on other sites More sharing options...
corina Posted March 13, 2014 Report Share Posted March 13, 2014 Hi Ken, I haven't heard of this med before, can you tell us what it's supposed to do? Quote Link to comment Share on other sites More sharing options...
Wmtate Posted March 14, 2014 Report Share Posted March 14, 2014 I am waiting patiently for its release in the US. I called Chelsea Labs in North Carolina and they said it would take until about Labor Day to get on the market. FDA approved it on Feb 14 th. This drug is also know as Droxidopa and has been used in Asian countries for over 20 years. It will also be used for Fibromyalgia , but was approved for OI. My bp can get as low as 56/39 and I have passed out once. I wish I could figure out about getting it from another country if it would be legal. Quote Link to comment Share on other sites More sharing options...
Wmtate Posted March 20, 2014 Report Share Posted March 20, 2014 I must be missing something regarding this drug. This seems maybe the magic bullet to me Quote Link to comment Share on other sites More sharing options...
krystal Posted March 20, 2014 Report Share Posted March 20, 2014 isn't the Northera supposed to be for those with orthostatic intolerance? My doctor said that it won't work for pots, but for those diagnosed with low standing blood pressure, or whatever they call it, or for those who faint.The catch is that it may increase the blood pressure when you lie down. I thought the FDA had already approved this medication... Quote Link to comment Share on other sites More sharing options...
corina Posted March 20, 2014 Report Share Posted March 20, 2014 Wmtate and Ken, would you please keep us posted? I'd love to know how this will work for you. I'm struggling with low bp's again since having surgery last July and really could do with a boost! Quote Link to comment Share on other sites More sharing options...
Dops Posted March 20, 2014 Report Share Posted March 20, 2014 HI,Yes, me. I use Droxidopa (Dops) which is the same as Northera I think. I got a new life with this drug. I have no sideeffects of it. Quote Link to comment Share on other sites More sharing options...
corina Posted March 21, 2014 Report Share Posted March 21, 2014 Thanks Dops! And welcome to the forum! I will read up on this med and talk it over with my doctor! Quote Link to comment Share on other sites More sharing options...
vemee Posted March 21, 2014 Report Share Posted March 21, 2014 It increases norepinephrine levels. I would like to know if it would do those of us any good who already have very high norepinephrine levels. I don't think it will help those with hyper pots. Quote Link to comment Share on other sites More sharing options...
ken870 Posted March 21, 2014 Author Report Share Posted March 21, 2014 I heard it is used to help people with dizziness and fainting when their blood pressure drops when they stand. Quote Link to comment Share on other sites More sharing options...
ken870 Posted March 21, 2014 Author Report Share Posted March 21, 2014 Dops I did not know you could get Droxidopa now I thought it was Droxidopa was northera. Quote Link to comment Share on other sites More sharing options...
Wmtate Posted March 22, 2014 Report Share Posted March 22, 2014 HI,Yes, me. I use Droxidopa (Dops) which is the same as Northera I think. I got a new life with this drug. I have no sideeffects of it.. I would pay twice the cost if I could get this drug now. How are you getting it. This drug is targeted for OI and Fibro Quote Link to comment Share on other sites More sharing options...
Dops Posted March 22, 2014 Report Share Posted March 22, 2014 I live in Sweden and I don't exactly know how off-label use of unapproved drugs/new use of approved drugs in other countries works. Your doctors should know?It is an pretty expensive drug, but it totally changed my life. So I think it's worth the cost. May be Droxidopa will work on just a few of us. An example for better understanding: I have to be in activity all the time otherwise I'll get bad. I "stressed" myself at work, at home, everywhere and so I could avoid to faint or to feel bad. You can guess what I think about sleeping ;-) When I take Droxidopa I don't have to be in action as much as in the past, but I still don't tolerate longer inactivity. I feel disabled in many ways, but now I'm functioning much better and quality of life has changed in a unbelievable way. In the past most days where bad, now I have many god days and there are moments without symptoms. (I hope you understand me . When I moved to Sweden I lost all the languages I've learned and eaven my mothertongue is getting worse... Speaking is easier than writing, but I do my best ) Quote Link to comment Share on other sites More sharing options...
Wmtate Posted March 24, 2014 Report Share Posted March 24, 2014 Drops, your writing is ok. I know what you mean regarding staying on the move. If I slow down, my b/p drops considerably. I did not realize you lived in Sweden, but northera has not been approved in Sweden, as far as I know, only Asia countries have been approved and has been over 20years. I wished I could get about 3 or 4 just to see how it works. It will be around Sept 1 st 2014 before they get distribution set up in the US. Quote Link to comment Share on other sites More sharing options...
Gemma Posted March 24, 2014 Report Share Posted March 24, 2014 Hi, i was just reading an article about this med and I believe they supposed to make final decision by march 28 here in US. I just wonder if it would be appropriate for people with already elevated NE upon standing. Mine is elevated when i stand, and doctor says i am hyper pots, but my BP is low and drops when i stand. Ohh i cant wait to find a drug that could bring my life back. I am so happy for you dops that you found a med that helps you. Quote Link to comment Share on other sites More sharing options...
Wmtate Posted March 26, 2014 Report Share Posted March 26, 2014 This drug was approved 2/14/14 also know as Droxidopa Quote Link to comment Share on other sites More sharing options...
Wmtate Posted April 2, 2014 Report Share Posted April 2, 2014 I called Chelsea Labs regarding when this drug will be distributed in the US market . I received a call back from them and it will be the second half of the year. Much too long. I wanted to book a European River boat cruise for 15 days the last of July but I am concerned about my low b/p. I need this drug really bad now. Any ideas!! Japan has been selling this drug for 20 years. Since it is now approved for the US, seems if I had a contact in Japan I could get the drug and it would be legal. I might need a doctor in Japan to write RX and I do not think that is going to happen. Any ideas??? Quote Link to comment Share on other sites More sharing options...
Dops Posted April 2, 2014 Report Share Posted April 2, 2014 Check it with your physician. The one I take is called Dops and I get it from Japan. But it is expensive! almost 400 dollars... Good Luck! Quote Link to comment Share on other sites More sharing options...
corina Posted April 2, 2014 Report Share Posted April 2, 2014 I've been investigating and it turns out it isn't available in my country. I've sent Chelsea an email to ask wether they plan on registrering in The Netherlands. So far I haven't heard back. Quote Link to comment Share on other sites More sharing options...
Wmtate Posted April 4, 2014 Report Share Posted April 4, 2014 Check it with your physician. The one I take is called Dops and I get it from Japan. But it is expensive! almost 400 dollars... Good Luck!. Your forum name is Dops and the medicine is called Dops , very interesting. I believe you would have to get a doctor from Japan to write the RX and I do not believe a doctor in Japan is going to write RX not knowing you. How did you get it done? Do you live in the US? Quote Link to comment Share on other sites More sharing options...
Dops Posted April 4, 2014 Report Share Posted April 4, 2014 I live in Sweden and my doctor prescribes this medicin to me. But it is an off-label use because it is an unapproved drug in my country. The medicine comes from Japan and my drugstore imports it to me. Have you tried to get Droxidopa? I think it is quite common that doctors prescribes off-label medicines in special cases. In the US you use off-label drugs t.ex. in cancer treatment, so I think it works in other cases too. http://www.cancer.org/treatment/treatmentsandsideeffects/treatmenttypes/chemotherapy/off-label-drug-use Quote Link to comment Share on other sites More sharing options...
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