Clb75 Posted October 18, 2018 Report Share Posted October 18, 2018 I just left my cardiologist who wants me to try northera, mainly because I’m housebound at this point. I’m scared to try it because I’m med sensitive like a lot of pots patients. The last two meds I’ve tried have sent me to the ER. I’ve read all the past posts from people on Northera but wanted to get some feedback to see what people think of it currently. I’m also confused about how an increase in norepinephrine from this drug will interact with the sympathetic system. Won’t it make BP and tachycardia worse? Also, to anyone who took or takes it, were you able to take it with Florinef? Thanks for any input you all can offer! Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted October 19, 2018 Report Share Posted October 19, 2018 13 hours ago, Clb75 said: I just left my cardiologist who wants me to try northera, mainly because I’m housebound at this point. I’m scared to try it because I’m med sensitive like a lot of pots patients. The last two meds I’ve tried have sent me to the ER. I’ve read all the past posts from people on Northera but wanted to get some feedback to see what people think of it currently. I’m also confused about how an increase in norepinephrine from this drug will interact with the sympathetic system. Won’t it make BP and tachycardia worse? Also, to anyone who took or takes it, were you able to take it with Florinef? Thanks for any input you all can offer! Same question here from me! I am currently waiting to have my catecholamine levels checked and may then depending on results get the opportunity to try this med if they do not rise when upright. As I am only able to be upright a couple of minutes, I don't expect a rise to be detected, so may be in the running for this unless levels or BP are super high to begin with (which they may well be after a 400 mile trip to the hospital and no sleep!) I also have symptoms suggestive of sympathetic excess so am not sure if it would make POTS worse in this regard. There are some studies coming out in relation to Northera in POTS patients, one showed 27% of POTS patients reported improved quality of life. I would definitely try it if offered. I am of the attitude that I don't want to leave any potential treatment untried when living with such a miserable condition. Given that it is typically dosed 3 times daily the duration of action is short should you encounter any side effects, and these would also probably be able to be dealt with by having a beta blocker and/or benzodiazepine on hand. If you don't try something you will never know if it just might have been the thing that got you upright again. I had a year pretty much on my feet (although never able to stand in one place) on licorice root, which I wouldn't have done had I not tried it. I have also tried many other drugs and whilst not helpful and sometimes downright unpleasant, am glad I've crossed them off. If I am really nervous about trying a drug I go and sit in the waiting room of the local A&E department near the desk (I don't check in) to take my first dose, with my medic alert bracelet on (ID & condition) & a note on me about the drug I have taken, dose and time. That way if I end up unconscious or with a dangerous reaction I am already in the right place. That has never happened but it allows me to feel safer when trying something the first time. I also never start with a full dose of a drug but break the lowest strength tablet into quarters and start with that. If it is capsules you can often take them apart and remove the desired amount (check with a pharmacist as some long acting/slow release meds are not suitable for this). Good luck if you do decide to try it. Please let us know how you get on. B x Quote Link to comment Share on other sites More sharing options...
Pistol Posted October 19, 2018 Report Share Posted October 19, 2018 I agree with bobmsh3ll. I also have been very anxious every time I start a new drug and always try half of the lowest dose ( per recommendation of my specialist ). Most of the time nothing really bad happens. Sometimes I think I want to stop a new drug because of some side effect but most of the time it gets better once the body adjusts to it. And in most cases the new drugs help me. Be brave - and I hope it works for you. If we are too afraid to try new things then everything will stay the way it is - that is enough encouragement for me to take the med!!! Quote Link to comment Share on other sites More sharing options...
Clb75 Posted October 19, 2018 Author Report Share Posted October 19, 2018 Thanks for the replies. That’s a good idea about lowering the starting dose, I’ll see if I can do that. I think I’ll call my doc and see if he’ll give me a prn of clonidine to have on hand as well and hopefully keep things from getting to the point that I need the ER. I’ll keep you all posted. Thanks! Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted October 20, 2018 Report Share Posted October 20, 2018 20 hours ago, Clb75 said: I think I’ll call my doc and see if he’ll give me a prn of clonidine Regarding clonidine, this may not be the best option to counter undesirable effects of northera as it only blocks your body from releasing its own noradrenaline - it will no do anything against exogenously supplied NA. A beta blocker or benzodiazepine would probably be better but see what your doctor suggests. B x Quote Link to comment Share on other sites More sharing options...
Clb75 Posted October 21, 2018 Author Report Share Posted October 21, 2018 Oh, thanks for the heads up. I’ll check with the doc to see what they suggest. Quote Link to comment Share on other sites More sharing options...
Clb75 Posted November 24, 2018 Author Report Share Posted November 24, 2018 Hi all, just wanted to post an update. I tried Northera for about a week. There are different titration schedules, my doc wanted me to start at 100mg then go up by 100 each day until I got to 600mg three times a day. I am really sensitive to meds so this one ended up being really potent for me. I had a lot of side effects— nauseous, dizzy, headache, blurry vision, light sensitivity, hot, and then my diastolic BP started spiking in the high 90’s every evening. This was only at 100 mg, I was never able to titrate it up. After a week I decided to stop because it wasn’t getting any better. I didn’t end up in the ER like the last few things I tried so I’m thankful for that. I guess you never know until you try something. Quote Link to comment Share on other sites More sharing options...
bombsh3ll Posted November 25, 2018 Report Share Posted November 25, 2018 Hi Clb75, I'm sorry the Northera didn't work out for you. Have you ever had your catecholamines tested? I think Northera is probably best for those who under produce noradrenaline, and based on my symptoms of sympathetic excess I don't feel I am in that category either, although I have yet to have mine tested. Thanks for taking the time to report back on your experience. I think it is always worth trying something even if just to cross it off. Bx Quote Link to comment Share on other sites More sharing options...
Clb75 Posted November 26, 2018 Author Report Share Posted November 26, 2018 No, I haven’t had them tested. I don’t think I have high norepinephrine, but my BP is ok now that I’m on florinef. You’re right, sometimes you do have to give something a try just to see how you respond either way. Thanks Quote Link to comment Share on other sites More sharing options...
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