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Florinef And Long Term Use, Also Anti-arrhythmics


Lauren78
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Hi guys...alright, so my cardiologist and I have been going round and round about my prescriptions since I don't want the EPS study. (Angela I promise I will get those rhythm strips to you soon, my mom went into the hospital...still there, so I don't have access to them or a fax at the moment).

Anyhow...my tachy (sinus tach) is still a daily occurrence and my cardio doesn't like that. He insists on the Florinef (I refused it before) or anti-arrhythmic drugs. He made the anti-arrhythmic drugs sound scary (maybe on purpose). Anyway....I am considering the Florinef...reluctantly...because I want to get my heart rate under better control.

So...my question is this...how many of you that take Florinef have been on it long term? What have the side effects been? He wants me on 0.1mg EOD, which I know is a very low dose. But I am still concerned about taking a steroid type drug long term...the effects on my kidneys, liver, etc. Wondering if anyone has been on it for several years or more and what their experience is.

Also about the anti-arrhythmic drugs (W or W/O Florinef)...any adverse reactions with those? My cardio says I would be on a very high dose and I would have to be monitored monthly to make sure my blood pressure doesn't get too low (normally 85/67).

So...what do you all think? What are your experiences? Yay or nay to either of the drugs?

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There are a couple of issues here. First, how bothersome are your symptoms, and how high are your heart rates? If you can function well, and it's only at the request of your cardiologist that you consider taking medications, then maybe starting medications in the first place can be questioned.

Secondly, if you do need medications to function better and reduce symptoms, what did the cardiologist say about the anti-arrhythmic drugs that made them seem scary to you? Beta and calcium channel blockers have been around for ages, and have been used for a variety of medical problems.

Third, if Florinef is indeed indicated in your case, I would not worry about the liver or kidney damage. Florinef is a different kind of steroid than prednisone, so it does not have the same negative side effects. Also, remember that people with a type of endocrine disorder, called Addison's disease, who cannot produce their own steroids, take Florinef and prednisone for many years.

Finally, have you exhausted all of the non-medication treatment options, such as fluid and salt loading, compressin stalkings, sleeping *** head of the bed elevated?

Hope this helps you to make a decision a little easier.

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I don't understand how your doctor would know, at this point, that you would need a "very high dose" of florinef. The typical dose is .1 mg once per day; I was on that with great results for many, many years, and no side effects that i can link to taking it. Also, it is far more likely that your blood pressure could potentially get too high on florinef as opposed to too low.

I went off florinef in order to particpate in some medical studies and when I tried restart it, it shot my bp too high and gave me headaches. My doc and I have tried restarting it several times, each with the same problem of baseline bp getting up in numbers my doc wasn't comfortable with, nor was I b/c of the blazing headaches. I miss how much more functional I felt while taking it...

As Dr. Guest suggested, if you've not tried all the other non pharmaceutical interventions, those are usually the first place to start with, then the rx stuff next...

Nina

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Lauren,

I was on Florinef for several years. The main problem I had with it was drops in my potassium, weight gain and high bp. After several years of being on it, my body kinda went nuts and the Dr's determined it was the Florinef so I had to go off of it but all in all, I did well on it as long as I watched my potassium and bp.

When you say anti-arrythmic I think of drugs like Norpace. If that is the "class" of drug your cardio is discussing then I would be leary I think. First of all, you owe it to yourself to try the "typical" course of meds first--beta blockers, calcium channel blockers etc etc. Secondly, before you take a drug such as norpace I would get 2nd and 3rd opinions, move forward with the EPS and try to see a autonomic specialist if at all possible.

I'm no Dr and of course I don't know your history but IMO it makes more sense to try Florinef and beta blockers first if the non-med options have not worked for you.

Good Luck!

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Is this a POTS doc that's giving you advice? Florinef helps a lot of folks, but I found it to be "rough" on my system compared to some other POTS drugs. I much prefer beta blockers and/or midodrine. You can also read through old posts on florinef, as your concerns are not uncommon.

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I agree with doctorguest. not sure why your doc is so concerned with anti-arrhythmics. the majority of them are tolerated well and by no means are dangerous. many are very effective in helping symptoms/tachycardia.

generally if there IS concern, it is seen more with "class III" (or potassium channel blocker) anti-arrhythmics because they are designed to increase refractoriness of cardiac cells, which in turn can cause sudden lethal arrhythmia's. but even so, even this class of anti-arrhythmic generally there should not be major concern - just when used, used with some caution (such as follow up ecg's after starting the med to check for QT prolongation which can instigate such lethal arrhythmias and also checking potassium levels). heck, I myself am on a class III anti-arrhythmic agent, have been for a year, and I have never had a problem.

many many many, and most anti-arryhthmic agents are not harmful at all - especially ones that are generally prescribed for POTS or "sinus tach" patients -- mainly the type II class (beta blockers).

good luck.

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I have been on Florinef for over eight years with no complaints. When I have occasionally forgotten to take it, I definitely feel weak before the day is out, so I know it makes a difference for me.

Not everyone has this positive result, but you don't know if you don't try it.

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Hi All...thanks for the responses. Thank you especially for those of you currently on, or who were on florinef, that told me your experiences.

Doctorquest: My symptoms aren't bothersome if I am lethargic or lying around the house. But if I am trying to be active, then I get fast heart rates. Walking around, going up steps, housework...gets me between 120-170, depending. I like to try to exercise, light weights, walking on treadmill...usually 130-160 there. I used to hike a lot and would love to do that again, but heart rate gets too high and I get the palpitations with that. I want something that will take care of the fast heart rate and hopefully allow me to do some activities, like hiking, again.

The anti-arrhythmic drugs sounds scary because he said I would need to be on a very high dose to control the fast heart rate that happens daily. But my resting bpm is 48-55, so he said it could lower my heart rate too much when resting and that anything that naturally suppresses the hearts rhythm can increase risks. Also said my blood pressure could lower, which it already sits at 87/65. Of course he is really wanting to do a EPS for diagnostic purposes, so maybe that's why he made the anti-arrhythmics sound so scary.

I have increased my fluid and salt intake...hasn't helped with the fast heart rate. I haven't tried compression stockings yet...but in 115 degree heat, it's not an option at the moment!

RQT9191: No...this is an electrophysiologists...see I originally went there because we thought I had arrhythmia issues and didn't relate the other symptoms as being related. After testing discovered I have NCS/POTS. Would I be better advised to now see an autonomic specialist? Anyone know of any in AZ?

Cardiatec: Thanks for the info. I don't think the cardio is concerned about them...I just think they are a little EPS and ablation happy. :lol: I don't know why I would need to be on a "very high dose" one though either. I will call tomorrow or Tuesday and see if I can find out what one they want to put me on and then I will report back and maybe you can tell me what class it is and if it's a good idea?

I am just hoping there is a better route than florinef for the fast heart rate...maybe the anti-arrhythmic is the way to go?? Or maybe I should see a autonomic specialist first??

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Lauren, if tachycardia is the main issue, in conjunction with low blood pressure, I would start with Midodrin first. It would increase blood pressure and decrease heart rate. This may be all you need to feel better. A second choice would be a LOW dose of beta blocker - not sure why he thinks you would need a high dose without trying a low dose first :lol:. Good luck!

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Thanks Doctorquest. I am not sure why he wants to try a high dose first either...to me the logical course of action should be to start low and build from there!

I would love to take the midodrine, and he suggested that when I said no to the florinef. I actually had a script for it, but when I went to get it filled it was going to be $140 a month for generic. I just can't afford that. :lol:

Are there any alternatives to the midodrine that have the same working properties?

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There are other vasoconstrictors out there, but those would likely aggravate your tachycardia. It seems like your best option right now is to start a low dose of a beta blocker and increase as tolerated. You may have to do both Florinef and beta blockers as both seem to work well for some patients with POTS. Good luck!

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Lauren,

I have been on florinef for two years now and haven't really seen any negative side effects.

I had problems with arrthymia's and had tried the anti-arrthymic drugs but all that did was drop my blood pressure sooo low I would end up in the hospital. (not to scare u, everyone is diff)

I also take midodrine with my salt tablets daily. Trying different things in the beginning may not seem like fun, but its worth it to find out which medications, when used together, are right for you

good luck :)

nicole

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Hi Hope you get ur answers, its difficult with drs, Im on florinef, midodrine and a b-blocker.

First off ill say florinef is mainly and only used 4 me cause it is the only thing to keep my pressure up. The betablocker was 2 times a day now just am cause pressure too low at night. Far as the midodrine yes its expensive,if i lost my ins i wouldnt take it, and as far as that i havent noticed it helping. My prob is the florinef, i have headaches, main complaint i have is i gained 35lbs so all dont have this but it is a concern, and if u dont have low blood press im not sure i would go on a long term steroid!! Hope all goes well

Donna F

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