Florinef Has Ruined My Life

[jenwic]

If only I could turn back the clock and never have tried Florinef. It has wrecked havoc with me. I've wanted to post this for a long time. Most of the time I feel no one in the world understands me except for you all on this site. But in this problem I seem to be alone.

I took Florinef for about 6 months when I decided to stop because my blood pressure had crept up into the 130's. It was always low so this concerned me. I talked to my pharmacist who told me I could just stop taking it. That night I woke up in the middle of the night with my heart racing and pounding so hard, harder and faster than I had ever experienced with POTS. I couldn't even walk to the bathroom. My husband carried me. I decided not to go to the ER because they never understand my condition. I went to my cardiologist the next morning. My blood pressure was 160 over something, I don't remember. I felt so bad, like I wanted to die. I couldn't breathe right, I was weak, and my heart wouldn't let up. He suggested I go back on the Florinef but taper down since my BP was up. For 2 weeks I was tortured with these horrible feelings. I couldn't even sleep for days with my heart racing nonstop. I called him back and he put me on Zoloft. If I thought I felt worse before, this made it even worse. I took it for 3 days then stopped. I won't go into details, but the night I started the Zoloft I ended up at the ER with my HR in the 160's .

Now I cannot stop taking the Florinef. Here's the hard part. I have to take it on an empty stomach because I am so sensitive to it, if it is delayed getting into my system for even a few minutes I experience a repeat of the above feelings which usually last 24 hours. I have to take the Florinef at 8:30 a.m. and 8:30 p.m. every day. When the time change happens, the schedule switched to 9:30 am. and P.M. since I can't change when I take it. Right now I can't eat anything after 5:45 in the evening because it will interfere with the med and make me feel bad. This knocked me out of all the Christmas dinners and parties because of the time frame. No one cans seem to understand or remember my eating schedule. This may seem trivial but it is very inconvenient and frustrating. In the mornings I take 1/2 a pill so I obsess with cutting it perfectly in half so I don't feel bad.

If I am 5-10 minutes late with the Florinef I begin to feel the effects. I am also on a steroid inhaler for my asthma. I missed a dose of it one morning and felt awful for missing it, I guess because it is a steroid too.

I just wish I could stop taking this med to which I am so seriously addicted and sensitive to.

Sorry for such a long vent. I just had to tell someone. I am so frustrated...

[mkoven]

So sorry to hear about this. Is there someone you could talk to about a VERY slow taper---over months? I know it's hard to cut pills that size to less than a quarter. Maybe a pharmacist could figure out how to dose it out in eighths???

I've had a good experience with florinef so far, but haven't tried to cut or taper. I'm on .075. I hope it's not forever, but it

s made all the difference between my being completely housebound and being relatively functional. My bp is about ten points higher than my baseline on it, but still acceptable. I haven't gotten the super-lows I used to get.

[dsdmom]

A compounding pharmacy could make it up for youin whatever dose you need if you do want to try to taper very very very very slowly. I, too, am very sensitive to things, ad particularly steroids. I went on prednisone for 5 days and it's now been 5 months - I can't get off the stuff. It is ridiculous how slowly I am trying to taper down but we'll get there - it will just take a year probably.

[juliegee]

Hey Jenwic-

You need Dr. House! Something doesn't seem right about this. I was told by my son's ANS doc at Hopkins that florinef is one of those drugs that you can just stop or go down a bit without tapering, esp. when your BP starts to bump up. Both my son and I have done this with no negative side effects.

I think you have to consider the idea that the florinef is treating something else besides your OI. And that something else is acting up when you try to get off of the florinef.

I see that you're taking meds for asthma/allergy symptoms. I'm wondering if you could be dealing with mast cell activation disorder. Before I was DXed with it, when my MCAD acted up- my BP would be crazy low and florinef helped alot. With MCAD, your blood vessels leak out (allergic reaction) and your BP drops. Florinef pumps up the blood volume and counteracts the leaky blood vessels. Fluid, salt and florinef definately help with MCAD. Stopping the florinef suddenly could cause an anaphylactic reaction. I know you'd expect really low BP, but for many of us, anaphylaxis presents with an elevated BP before the drop and crazy tachy- both of which you describe- in addition to having trouble breathing. The fact that your body is on such a tight schedule with the florinef also leads me to suspect that you're treating an allergic response rather than garden variety OI.

Finding a doc that will help you sort this out will be difficult. On your own you could try taking an OTC benadryl or zyrtec along with OTC zantac (H-1 & H-2 Blockers used to treat MCAD) and then try dropping your florinef. When I dropped my florinef suddenly; I was already taking an H-1 and H-2 blocker regularly.

I really feel for you. Something weird is definately going on. I definately suspect you were having an episode of anaphylaxis when you tried to stop the florinef. The first time I used my epi-pen; I was having one of those crazy tachy episodes and the epi stopped it immediately. Consider this theory and let me know what you think.

All the best-

Julie

[yogini]

What dose are you taking? I was up to .2 at one point. I felt sick every time I tried to stop it. My doc told me to go from 2 pills to 1 pill then to 1/2 and stop. That didn't work for me, so I finally came up with something onmy own. I reduced by 1/4 pill every 3-4 weeks. That was slow enough so that my body didn't have a reaction and I was able to get off. Sometimes with POTS you just need to go a lot slower than the average person in stopping/staring meds. This isn't anything that a doctor will tell you, but I learned it here on the forum. It took a few months to go off, but it worked with hardly any side effects. Check with your doctor first - my docs have looked at me like I'm crazy, but have never said no to my going slower.

[iheartcats]

Hey Jenwic-

You need Dr. House! Something doesn't seem right about this. I was told by my son's ANS doc at Hopkins that florinef is one of those drugs that you can just stop or go down a bit without tapering, esp. when your BP starts to bump up. Both my son and I have done this with no negative side effects.

I think you have to consider the idea that the florinef is treating something else besides your OI. And that something else is acting up when you try to get off of the florinef.

I see that you're taking meds for asthma/allergy symptoms. I'm wondering if you could be dealing with mast cell activation disorder. Before I was DXed with it, when my MCAD acted up- my BP would be crazy low and florinef helped alot. With MCAD, your blood vessels leak out (allergic reaction) and your BP drops. Florinef pumps up the blood volume and counteracts the leaky blood vessels. Fluid, salt and florinef definately help with MCAD. Stopping the florinef suddenly could cause an anaphylactic reaction. I know you'd expect really low BP, but for many of us, anaphylaxis presents with an elevated BP before the drop and crazy tachy- both of which you describe- in addition to having trouble breathing. The fact that your body is on such a tight schedule with the florinef also leads me to suspect that you're treating an allergic response rather than garden variety OI.

Finding a doc that will help you sort this out will be difficult. On your own you could try taking an OTC benadryl or zyrtec along with OTC zantac (H-1 & H-2 Blockers used to treat MCAD) and then try dropping your florinef. When I dropped my florinef suddenly; I was already taking an H-1 and H-2 blocker regularly.

I really feel for you. Something weird is definately going on. I definately suspect you were having an episode of anaphylaxis when you tried to stop the florinef. The first time I used my epi-pen; I was having one of those crazy tachy episodes and the epi stopped it immediately. Consider this theory and let me know what you think.

All the best-

Julie

I don't take Florinef...it's just one I'd like to avoid if I can from things I hear about it (I know it works great for some people, but I'm not comfortable with it yet anyway).

But is there a test you can get for MCAD beside a bone marrow test (I tried to Google it...). Is there a simpler 'first round' - I'm heading to an allergist next month and think it'd be nice to check up on this, just in case. I have horrid allergies and it's worth a check.

I also did not know you could go anap. from going off a medicine. I always try one new medicine at a time because of my sensitivity. I'm allergic to nuts, so I know what anap. can do (makes my POTS horrid for days...last time I accidentally ingested something and had to take an emergency Benadryl I had hives, diarrhea, stomach pain, and mild shortness of breath which lead to being severely dizzy and tachy for a couple days...so I see how this could be an allergic reaction rather than POTS in and of itself).

[MelissaCrystal]

I have to slowly, and I mean slowly, taper off every drug I take because I'm so sensitive as well. I remember how frustrated I'd get when I'd start withdrawing only an hour after I've missed my dose. So scary, how it feels like you're dying during that.

It took me 6 months to get off one of the anti-anxieties I was on, and even longer to get off the beta blocker. With both, the withdrawal symptoms differed somewhat, but it definitely triggers the biggest POTS-flare-ups I've ever had. It was such a horrible experience.

Now I'm sooo careful about what I need and don't need because I'm afraid of withdrawal. Even things that I'm not supposed to be addicted to are hard to get off of because my body feels a change. I bleed whenever I skip my birth control for just a day! That isn't supposed to happen either, and it frustrates all my doctors, as does all of these reactions.

I hope you don't take it out on Florinef or other drugs that can do you wonders if prescribed the right dose, we have to remember that our systems are haywire and don't react normally. Patience and persistence are so important to us with everything we do, unfortunately. I wish you luck on getting off the drugs you choose to lose, and getting on the right cocktail to get you back with your family and friends! Try to do everything as carefully as possible and remember that you're not alone in this!

[juliegee]

"I don't take Florinef...it's just one I'd like to avoid if I can from things I hear about it (I know it works great for some people, but I'm not comfortable with it yet anyway).

But is there a test you can get for MCAD beside a bone marrow test (I tried to Google it...). Is there a simpler 'first round' - I'm heading to an allergist next month and think it'd be nice to check up on this, just in case. I have horrid allergies and it's worth a check.

I also did not know you could go anap. from going off a medicine. I always try one new medicine at a time because of my sensitivity. I'm allergic to nuts, so I know what anap. can do (makes my POTS horrid for days...last time I accidentally ingested something and had to take an emergency Benadryl I had hives, diarrhea, stomach pain, and mild shortness of breath which lead to being severely dizzy and tachy for a couple days...so I see how this could be an allergic reaction rather than POTS in and of itself)."

Hey Cat Lady-

I know it sounds crazy, but I guess I'm suggesting that Jenwic was already suffering from low grade anaphylaxis (looks like POTS) prior to florinef and the florinef was treating THAT rather simple OI. Testing for MCAD is tricky. It's best to test within an hour or so after an "episode" of flushing or anaphylaxis. Docs can check for serum tryptase (blood) or methylhistamines (urine or blood) or prostaglandin D-2 (urine or blood). Any elevation of these suggests MCAD. If serum tryptase is always high, it is suggestive of mastocytosis.

All the best-

Julie

[jenwic]

You have all certainly given me some new ideas. I will do some research on this and hopefully talk to my dr. about it.

By the way, I tried to taper off about a year ago by taking 3/4 a pill instead of a whole one and I had the same bad reaction so I went back to the whole pill. Now I take a whole pill at night and 1/2 in the morning.

Before I started the Florinef I had never experienced anything like this. I do have asthma and allergies. I cannot take albuterol because it makes my heart race, which is why I'm on the Pulmicort steroid inhaler.

[persephone]

Jenwic, I've experienced similar effects with different drugs. Remember thaT pots patients often have chemical sensitivities on a scale others can't imagine. I wonder if you need an incredibly slow and minute taper. I usually spend months and months coming off of drugs. My last nightmare was with Gabap[entin/Neurontin. I went into full blown withdrawal of the sort heroin addicts experience. It was terrible for a really long time.

I am also wondering- has anyone checked your potassium levels? Florinef can lower this and could explain some of your symptoms. My grandfather ttook florinef for postural hypotension, and it lowered his potassium levels so much that he was ill for ages. We never knew until one day someone did a full blood count at the GPs. Two hours later, doctors from the HOSPITAl turned up at my grandfather's house to check he was still alive and call an urgent ambulance to get him into hospital and boost his potassium levels.

It could be somethin as simple as your potassium levels being off kilter as a result of Florinef.

Others have been where you are now- you will survive. I'm so sorry for all the upset and frustration. Take each day as it comes, and try to explore all avenues. Thinking of you, Persephone xxx

[flop]

Hi, sorry to hear that you are having such trouble with the florinef. You have already had a lot of ideas from other members and I think that it is likely that there is something more complicated than "just POTS" going on with you.

Steroids - whenever steroids are helping/causing problems in stopping them it is always worth looking at adrenal function. The body naturally makes its own steroids in the adrenal glands and secretes them at the correct time of the day and in response to bodily stressors. The highest levels of cortisol should be at 8am so normally when taking steroids they should either be taken at breakfast time or a higher dose in the morning and a lower dose mid-afternoon (this helps with sleep patterns). I'm not telling you to change your pill schedule as I relise that that is not an option at the moment, just saying how things work in a "healthy" person.

When anyone takes steroid medications the adrenal glands sense it and reduce their own steroid production. This is why you can't suddenly stop long-term steroids (florinef is a bit different and many people have just stopped it without problems) - you should always taper down slowly to give your adrenal glands chance to increase cortisol production. The effects of long-term steroids on adrenal function can last for 2 years (this is why you should carry a steroid card so you can be given extra hydrocortisone if you have a serious accident or illness).

Doctors recognise adrenal failure or Addison's Disease and test for this by doing a synacthen stimulation test. Many people have adrenal dysfunction or adrenal fatigue where the adrenal glands are producing lower than healthy levels of cortisol - not low enough to cause Addison's but too low for you to feel healthy. This concept is not recognised by many doctors but i was tested for it by a holistic health practitioner who discovered that I have low cortisol levels. I am being treated by diet and supplements rather than by taking steroids which can perpetuate the problem. I have no idea if this fits your situation at all but it may be worth googling "adrenal fatigue" to see if it rings any bells for you.

Another possibility is (as already mentioned) that the florinef is actually involved in suppressing some sort of allergic reaction or mast cell problem. I have huge problems with allergies and take H1 (acrivastine) and H2 (ranitidine) blockers daily. One very useful med that I take for allergies is Montelukast (Singulair) - as you have asthma and are sensitive to b2 agonists it may be worth talking to your doctor / asthma nurse about trying singulair. For me it helped my asthma but is actually more help with my other allergies! My allergist wants to give me an Epi-pen but says it is too dangerous for me to have one whilst on beta-blockers so I have an adrenaline mist spray/inhaler to use when I get mouth/tongue swelling.

A few years ago I was put on prednisolone 10mg daily for hayfever and when trying to stop it had horrible flares of POTS like symptoms - dizziness, tachy but high BP. I eventually made it off the steroids by tapering very slowly over 6 months (ended up taking them again the next summer!).

I hope you have or find a good doctor to help you work through all of these issues and get you feeling a bit better soon!

Flop

[MelissaCrystal]

You have all certainly given me some new ideas. I will do some research on this and hopefully talk to my dr. about it.

By the way, I tried to taper off about a year ago by taking 3/4 a pill instead of a whole one and I had the same bad reaction so I went back to the whole pill. Now I take a whole pill at night and 1/2 in the morning.

Before I started the Florinef I had never experienced anything like this. I do have asthma and allergies. I cannot take albuterol because it makes my heart race, which is why I'm on the Pulmicort steroid inhaler.

I was never like this a couple years ago either, but my POTS worsened and now my chemical sensitivity is through the roof. I'm pretty sure it's your system, not the drug, unfortunately. I wouldn't say that about an addictive drug though, but Florinef really isn't supposed to do that. To us, sure, but normally, no. So I'm pretty sure you and I just got worse, POTS-wise, and that's the difference =)

[mkoven]

I know prednisone and florinef are different, but I had a &*^ of a time coming off prednisone two years ago, taken for allergic reactions. It took me a very long time to taper off, and I felt autonomically very wrong for months. Time of day may be a factor-- as Flop said, steroids are often given in the morning to reduce adrenal suppression. I was taking pred. 2x a day, which I think made it harder to come off. My pcp was shocked by how rough a time I had. I've since had short (1-2 days) courses of steroids to allow me to be exposed to contrast agents I'm allergic to, and usually have a bad crash for a couple days after.

I don't look forward to the day I may have to come off florinef. I hope I'm at a low enough dose that it won't do too much long-term damage.

[jenwic]

I had my potassium level checked the night I ended up in the ER after I took the first Zoloft. The dr. said it was a little low but not too bad (probably from my heart racing nonstop for days, he said) so he gave me one potassium horse pill tablet to swallow. I also had my potassium checked for a couple of months off and on when I first started the florinef a few years ago and it was fine then.

I tried Singulair two different times and both times I woke in the middle of the night with my heart racing, adrenaline surges, chills and shakes, and runs to bathroom with diahrrea due to heart rate being up. I couldn't tolerate it. I used to be on a different, older medicine similar to Singulair but my current allergist won't let me take it because she is afraid of liver damage since I'm on steroids ( I don't understand that) so she put me on the Pulmicort.

Before my POTS diagnosis I went through a bunch of test on all my glands and they all came back normal.

Thank you all so much for your input. I am going to search on line for info on the topics you brought. I would love to get off of the florinef if I could.

[mattsmum]

I'm sorry whoever that pharmacist is who told you you could just 'stop' Florinef should be shot. As many previous posts have stated it is a steroid. You have to wean yourself off the drug.

I have only once forgotten to take my florinef because I was working night shift so got home in the morning and went straight to bed and when I woke up about 2pm wow symptoms off the chart I thought I was going to die. Then realised DUH didn't take my meds! I would even suggest if weaning off it going under the directions of your Dr. They maybe able to help you counter the side effects along the way.

[juliegee]

I'm sorry whoever that pharmacist is who told you you could just 'stop' Florinef should be shot. As many previous posts have stated it is a steroid. You have to wean yourself off the drug.

Hey Mattsmum, that's what I thought, too. But, despite the fact that florinef has some steroidal properties, it is NOT a true steroid. When my son was taking .2mg daily, his BP strated bumping up. We began titrating him down slowly. Dr. Peter Rowe at Johns Hopkins said it was NOT necessary. I was shocked! The high BP is dangerous enough (140/90) to warrant dropping down or stopping quickly- which he did with NO problems. Mack finally settled on a smaller dose of .05mg. I was only taking .05mg when I stopped abruptly. I had no problems, just missed the energy. Both of us had our BP quickly drop down to healthier measurements.

The fact that Jenwic's BP spiked is certainly indicative of somthing else going on. Most folks can stop or lower florinef without titrating if your BP strats to rise- according to Dr. Rowe.

Julie

[yogini]

This is an interesting topic. I have a pretty moderate form of POTS - no allergies or other conditions going on, but for some reason I had a lot of problems reducing florinef. My doctors always told me to taper over a week, but that never worked. Since then I've gone slowly when changing any med doses, but florinef is really the one that was hard to adjust. A few others have posted about this over the years, so you may want to search and read older posts.

Jenwic, you mentioned that you start to feel sick if you are late taking your florinef, which seems unusual. I think florinef stays in your system for a long time - up to a couple of weeks, so missing a dose or taking it late shouldn't have too much of an effect...so maybe that part relates to another condition or allergies.

[Claire]

Did you ever get off it sucessfully. It’s making me feel so sick that I want off.

Does anyone have experience with successfully cutting down their dosage that they could share?

 

[yogini]

Many, many people here have successfully weaned of florinef.  I think I did 1/8 pill every 2 weeks.  I did not feel it going super slowly.

[Claire]

Ok. Totally weaned off the Florine’s one weeks ago and now my blood pressure is super low all day. My quality of life has just about come to an end and I have a special needs son to care for everyday, I.e. shower, shave etc. I am on Clonidine but it’s not helping.  Suggestions anyone, or is my life over? 

[Claire]

Does anyone have experience with how long Lexipro takes to kick in? I started with 2 weeks on 5 mg, and 3 weeks on 10. Is there anyone who has taken this and gotten results and how long did it take?

 

[bombsh3ll]

Claire how come you came off the Florinef, was it causing side effects?

I have tried it several times too and couldn't tolerate it (headaches, high BP, palpitations due to potassium dropping). It also didn't help my presyncope or make me able to stand. 

I was only taking half a tablet and stopped it 2 days ago. 

Have you ever tried licorice root? I take this and the effects were miraculous for about 1 year then waned. It is a natural alternative to florinef which for me has no side effects. 

SSRIs can take up to 6-8 weeks at therapeutic dose to work. (side effects can occur sooner but are often short lived)

I am dubious about their usefulness in dysautonomia unless to treat co-existent depression which is quite understandable, however some people do report significant benefits.

B x

[Pistol]

I am on Lexapro ( SSRI ) for years and it took several weeks ( they say up tp 6 weeks ) for me to notice a difference. But it is working for some  my POTS symptoms. My sister responded very fast and well to Wellbutrin - it powered her BP, HR and increased her orthostatic tolerance. 

[Claire]

2 hours ago, bombsh3ll said:

Claire how come you came off the Florinef, was it causing side effects?

I have tried it several times too and couldn't tolerate it (headaches, high BP, palpitations due to potassium dropping). It also didn't help my presyncope or make me able to stand. 

I was only taking half a tablet and stopped it 2 days ago. 

Have you ever tried licorice root? I take this and the effects were miraculous for about 1 year then waned. It is a natural alternative to florinef which for me has no side effects. 

SSRIs can take up to 6-8 weeks at therapeutic dose to work. (side effects can occur sooner but are often short lived)

I am dubious about their usefulness in dysautonomia unless to treat co-existent depression which is quite understandable, however some people do report significant benefits.

B x

I had  2 mini strokes and was hospitalized because of that. It made my blood pressure very high so they weaned me off immediately and started me on Lexipro the same day. They told me never to take it again, as I would have another stroke and this time it would be worse.  Right now, after weeks of weaning, I am now Florine free for a week and a half but boy is my blood pressure low. I don’t know what to do about this and am hoping after a little time, it will come back up. 

[bombsh3ll]

On 7/24/2018 at 7:35 PM, Claire said:

I had  2 mini strokes and was hospitalized because of that. It made my blood pressure very high so they weaned me off immediately and started me on Lexipro the same day. They told me never to take it again, as I would have another stroke and this time it would be worse.  Right now, after weeks of weaning, I am now Florine free for a week and a half but boy is my blood pressure low. I don’t know what to do about this and am hoping after a little time, it will come back up. 

Oh you poor thing that must have been so scary! I worry about having a stroke too as my BP tends to be high & went up to 223/120 once. For the past few days since stopping the florinef mine has stayed high but I still feel rubbish. It is strange how you can have normal or high BP and still be presyncopal!

You mentioned being on clonidine too which can lower BP, have you talked to your doctor about maybe reducing this now you are no longer on the Florinef? 

I tried clonidine too briefly, it made me even more lightheaded and my heart rate was slow.

I hope you can find something that helps.

B xxx