Florinef again...how long to kick in? Can bp drop?

[Monica2000]

My doctor put me on Florinef about a month or two ago. I was reluctant to try it, but finally did when my blood pressure was too low for me to function normally. I only tried it for a few days (less than a week) because not only did my bp not go up, it actually went down at times. I stopped it, and at my doctor's insistence, I tried it again now. I started two days ago, and same thing. After I take it the bp is the same or even lower (yesterday it was around 86/40).

Has anyone had similar experience with Florinef either lowering the bp or making no difference? Or else, maybe I need to stick with it for more than a week to see a difference?

Also, I'm afraid to stay on it long term. Can if help if you take it for just a few weeks, or do you have to stay on it for the rest of your life (assuming it works at all)?

Thanks!

Monica

[nantynannie]

Hi Monica,

I am sorry that I cannot help you with this specific medication because I have never tried it, but I can tell you that I and many members have had paradoxial reactions to meds. For instance, when my doc put me on a beta blocker, it upped my heart rate instead of lowering it. It happens all the time, I don't know why. Hope this helps.

Ann

[ariella]

I tried florinef this month for about 9 days, and it made me feel much worse. I don't know what it did to bp, I was too miserable to check it! But it did cause me many more epiodes of arrythmia along with chills and shaking and nausea, some anxiety (not because the reaction was scaring me, just felt jumpy) , and it didn't help at all for the dizziness. also extreme fatigue and muscle weakness (which may be related to another undelying condition that I have) Doctor insists I try again in two weeks. I don't want to listen, but feel I have to humor him after the two weeks for another week or so. I feel like he just sentenced me to a month of extreme suffering

[Monica2000]

Thanks for the replies. At least I know I'm not crazy. I still wish I knew if people who _benefitted_ from Florinef needed a certain adjustment period, but it sounds like some people will have no luck with it no matter what. It's sad for me because I really don't tolerate medications, and at least so far I've had no terrible side effects, which is pretty amazing. It just doesn't help I'll humor my doctor, too, and stick with it for another few days. If there no change (for the better!), it's the trash can for yet another box of pills ....

And then what?

Monica

[Merrill]

Monica, can you stand to be on it for longer than a few days? I think a few weeks or a month might be in order... From what I understand, meds don't always show an immediate effect. If you're not suffering too much from bad side effects, it might help to try it for a longer period of time. I'd also recommend putting that blood pressure cuff in the closet and keeping track of how you feel on the medicine rather than going by the numbers. (Or even better still, take the florinef and try not to think about it for a few weeks and then ask yourself if you notice a change.)

It's my understanding that it can take a while to get the dose just right; you may need more, you may need less. Are you taking a beta blocker along with the florinef or just the florinef?

Also, it may be that the people who are benefiting most from florinef aren't posting on the site right now... florinef and midodrine, along with beta blockers, are the most commonly prescribed meds for people with POTS. (This is according to the medical research I've read ... You might also check out some of the articles/links on Nina's post at the top of the main page--answers to commonly asked questions). All that's to say, florinef might have a pretty good track record...it's just hard to know right now from the forum. And the truth is, only YOU matter when it comes to making decisions about your own body!

I hope it starts to work for you, or that you can find a better dose--or even a different med. In the meantime, drink a ton, eat something salty, and take good care,

merrill

[Laura]

Hey Monica! Ditto what Merrill said! It will take a good 3-4 weeks for your body to adjust, for me I felt horrible for the first 2 weeks- agitated, couldn't sleep etc- then things settled. Also, are you remembering to add a tonne of salt to your diet? Florinef won't work without the addition of lots of extra salt and lots of water. You won't have immediate effects like you do with something like Midodrine, it takes a while to work on your system. Try and give it a good go if you can... you never know, it might be just the trick for you! Laura.

[Monica2000]

Thanks guys. That's very helpful. I hadn't realized it takes this long to make a difference. I'll wait. So far no terrible side effects.

And no, I take no other meds. None of my doctors would consider beta blockers because my blood pressure's too low, and they will lower it still. (One doctor once started writing a prescription for one ... reluctantly ... and then checked my bp one more time and said "nope, I can't." ) I can't remember why they didn't give me Midodrine. Maybe it's more likely to have side effects and I react like crazy to everything. I remember we discussed it after the TTT last September and I ended up taking nothing. And here I am.

I know I shouldn't be checking my bp too often, but sometimes I'm just curious and want to know if I feel so exhausted because the bp is so low or ... just because. (??) Sometimes it's one, sometimes the other, lol. My 80-yo mother can walk up and down the hill, and I tire walking around her place. Now what's wrong with this picture?

Thanks again for your advice.

Monica

[ramakentesh]

My doctor told me after i reported a variety of negative effects from florinef, that florinef works for the majority of patients, but that there is a subset of POTS patients that feel anxious and restless.

I was jumpy, achy, mentally confused and had vision problems.

When i reported these symptoms and asked whether this was because my body was adjusting, he recommended that i stop florinef immediately and try other medications. His feeling was that its better to try others before subjecting oneself to two-three weeks of hellish adjustment.

So my advice would be hers - maybe try other medications before going back to florinef.

As an example - i found the positive effects of licorice root to be the same as those of florinef, but with much less jitteryness and mental confusion. I did get migraines from licorice tea, but you might not.

A combination of licorice tea and midodrine could refuce migraine activity.

[Monica2000]

Any there other medication that works along the same lines as Florinef (raising bp) that don't make you retain fluid? I'm beginning to swell up, and I don't know that I can tolerate this, especially my face getting all puffy. What a mess! I'm not an easy patient, I know.

thanks,

Monica

[vemee]

My doctor told me it takes about a month for a dose of florinef to work. My first dose of .2mg did not do anything for me except for a few spikes in bp. Now I'm on .4mg and still only spikes in bp. So far no swelling of the hands or feet, maybe some in my face.

[LindaJoy]

Hi, Monica,

How are you doing on your Florinef? I just saw my pcp today because I was having some problems on my Florinef. I gained 15 pounds in 30 days. She said she thought I was overdoing the salt and had to come down on the medication to maybe only half a pill twice a week. I also had muscle pain, a loud buzzing in my ears, dizziness, nausea and felt really POTsy. My bp was also beginning to rise, along with my resting pulse rate. I haven't taken the Florinef since last Saturday, and I feel so much better. Yet, like all of you, my doctor wants me to give it another try. I'm not so sure I want to! Let me know how you're doing, Monica. Maybe you can give me some hope!

Linda

P.S. I did see a benefit from the Florinef--I wasn't peeing as much, if at all!

[Felicity]

I don't know if I can say much that is useful, but I took fludrocortisone (same thing I think, it isn't called flourinef in Scotland), for about 2 months. I had very bad cramps with it, and it didn't do any good. I also felt more tired. I was also concerned about taking it as I felt that the long term damage could outweigh any benefits. I've not had the energy to do as much research as I should have on it, but my feeling was that unless it made me feel a lot better, then the risks were not worth the benefits. Like the previous poster, I have had very odd reactions to drugs, such as a drug to slow down the heart rate (verapamil) raising it to a fairly constant 200! Again a personal opinion is that since fairly little is known about the effects of these drugs on people who all may have fairly different things going on in their bodies, you need to somehow walk a line between trusting your instincts and respecting your doctors opinions. Last year I spent 4 days in hospital with staff panicking about my ridiculous heartrate but noone believing me that it might be due to the drug ('verapamil CAN'T do that'). I cheated on taking a pill and finally saw a cardiologist who did think it was the verapamil, but it is hard to judge sometimes what to do for the best. The best of luck whatever you decide.

Felicity.