Florinef Revisited?

[Sarah4444]

I tried taking Florinef last summer for about a month and felt terrible. While taking it, I had eye pain and pressure, headaches, and increased chest tightness and discomfort. However, at the time I think I was having symptoms of mast cell activation, which are now better controlled, and I don't know if the "flare up" experience I had was due to untreated MCAD or taking Florinef, or both.

I am now taking 35 mg of midodrine a day, but still have less than an hour of tolerable standing on a good day (often MUCH less). I know that I have to come to terms with the fact that this is disabling (I am not doing a very good job of that), but also don't want to accept an unnecessary level of disability, if I could be doing better.

Would it be worth trying Florinef again? Is it something that can be taken indefinitely? Can you share your experiences with it, side effects, that kind of thing?

Thanks in advance for the advice.

[mwise]

I wasn't able to tolerate Florinef either. I had similiar side effects along with feeling weaker. I am taking Midodrine 5mg 3xday. I also take Mestinon 60mg 3xday to help with blood pressure and motility. It helps also for muscle weakness. I also do some homeopathic treatments that include taking a high potency Multi-Vitamin, extra supplements of Vitamin B and Vitamin D, a probiotic, Moducare capsules 3 a day to build my immune system and I am going to add Alpha Lipoic Acid to help with my nerves. All was gotten at a local health food store. I have read on the forum that a lot of individuals are taking CoQ-10 that have POTS. I also added low fat peanut butter along with cinamin in my diet for energy. I do believe in eating the right diet can help. I do take extra salt (a teaspoon of salt to a pint of water) and utilize salt tablets if I need. I also spend time reading the bible & in prayer. I feel the combination of meds, homeopathic treatments, prayer(bible reading) and diet play a part in me feeling better by being able to walk and to do little things around the house. Hope you can find the right combination for you to get you back on your feet.

[MamaTrain]

Hi Sarah,

My doctor who uses naturpathic medicine in her practice just gave me licorice root that is supposed to act like Florinef but not so harsh. The type of licorice and the dosage really matter but it's worth checking into if you want to! She gave me something called Licorice Plus made by Metagenics. I am supposed to start with 1/2 tab for 10 days and move to 1 tab after if I can tolerate. Every treatment is like a dice game...you just have to try it and see. Unfortunately, some can make your life a living nightmare til they wear off in your system. Been there, done that way too many times! :-)

KC

[juliegee]

Hi Sarah-

Mack & I have gotten very good results with florinef. He took it for a very extended period. I take it periodically during bad flares. WHAT dosage were you taking when you had those symptoms? I ask because your symptoms sound like those you would experience with too high of a dosage .

Mack's doc at Hopkins recommend taking 1/4 0.1mg tablet for a few days. If your symptoms improve and you are not experiencing unpleasant side effects, you can move up to 1/2 tablet for a few days, etc. From that point, you can titrate up until you get the desired effect. Dr. Rowe doesn't recommend going over 2 tablets a day. Any time you get a headache- that's a sign that your dose is too high. Check your BP and drop your dosage down to the last tolerated dosage. This med should be taken in the AM.

You MUST take extra salt & fluids with florinef. It will NOT work without them. During his worst, my son took 2 florinef tablets every AM with 6 Thermotabs (salt pills.) He had 2 at each meal. He also drank plentifully all day.

You must carefully check your BP with florinef. It can raise your BP dangerously high so regular monitoring is important. Even if your BP remains stable once you've found your ideal dosage STILL check it. periodically. Over a period of weeks or months, it can still creep up as a result of the florinef. THAT is why I can only take it for short periods.

While you are searching for your correct dosage, get your electrolytes checked. Florinef can decrease your potassium level. At Mack's dosage, he was prescribed a potassium supplement called Slow K-8. I usually took 1/2 tablet and got by with a daily banana or orange.

Especially if your BP tends to be on the low side, I think that florinef could be a very helpful therapy for you. It also seems to calm mast cells down. If you decide to try it, hope it helps.

Julie

[jenwic]

Julie,

I saw your comment about Florinef calming mast cells down. I think you're right due to my experience with it. I just wondered what your reason for thinking this was. I have really bad "withdraw" symptoms if I'm late taking Florinef, even by a few minutes (I have talked to you about this before) and feel I may have MCAD which the Florinef is treating. I'm in the process of trying to get a diagnosis.

[juliegee]

Julie,

I saw your comment about Florinef calming mast cells down. I think you're right due to my experience with it. I just wondered what your reason for thinking this was. I have really bad "withdraw" symptoms if I'm late taking Florinef, even by a few minutes (I have talked to you about this before) and feel I may have MCAD which the Florinef is treating. I'm in the process of trying to get a diagnosis.

Hi Jenwic-

I'm not exactly sure... I do know that florinef has some steroidal properties- without the negative side effects of steroids. Steroids, as you're probably aware, are used to treat severe allergic reactions. I was sometimes put on a short course of steroids when my hives were out of control or my tight throat or chest were uncontrollable with other treatments.

What dosage of florinef are you taking? I'm glad it's helping your suspected MCAD....but wish your symptoms weren't so quick to return w/o it

Hugs-

Julie

[jenwic]

I'm taking half a pill in the morning and a whole pill at night. I know I should not take that much at night but that's what I started with and I can't stop taking it or I get severe tachy, heart pounding, tremors, diahrea, weakness, etc.

[juliegee]

I'm taking half a pill in the morning and a whole pill at night. I know I should not take that much at night but that's what I started with and I can't stop taking it or I get severe tachy, heart pounding, tremors, diahrea, weakness, etc.

Gosh- do you sleep? So sorry you're stuck in this pattern

Julie

[Sarah4444]

Thanks, guys.

Julie - I started with 1/2 tab daily (.05mg) and seemed to be able to manage it at first, but didn't notice any positive effect. When I increased it to 1 tab I ran into those odd side effects, and ended up in emerg within a couple of days. Then as I reduced to dosage to go off it, I felt awful too. When you say you take it during flares, are you able to take it for a few days and then stop with no problem? I am doing much better most days than before, but am basically back to bedridden the week before my period. I'd love to try something I could just take during that time, when I also find I am peeing constantly.

jenwic - That feeling you describe having at night is what used to happen to me every night, until I started taking 20 mg doxepin before bed. Is there any chance that MCAD is affecting our kidneys, making the Florinef potentially helpful? I don't even know exactly what the med does - makes us retain fluid somehow/replacing aldosterone or something?

[juliegee]

Sarah, I think the idea is that it helps you retain fluid, which in turn boosts blood volume....not sure what it does to aldosterone? That's why it might be helpful the week before your period if you are urinating a lot. All of that loss of fluid ultimately reduces your blood plasma. Maybe try 1/4 tablet during that phase and see if it helps.

Great suggestion for jenwic- have you ever tried doxepin? It's life changing-in a good way - for those of us with MCAD. Maybe it will ultimately allow you to switch your PM & AM dose. Doxepin is taken at night & may address the symptoms that florinef is addressing now. I would think a larger AM dose (full tablet) would give you the energy you need to get through the day. Maybe you could eventually drop the PM dose.

Julie

[juliegee]

Sorry, I meant to add that I take it during rough patches. For instance, after I got my gallbladder removed; I became bedridden for 6 + months. I could barely stand and was unable to eat anything. The nausea was unrelenting. Florinef turned it around for me. It gave me energy. Within days of taking it (and liquid "E" as a GI prokinetic), I could move around and eat again. It was nothing short of a miracle.

I can only guess that the anesthesia or general assault to my body really messed with my autonomic nervous system. My BP was often immeasurable during that period...OR I had an extended allergic reaction to the anesthesia??? Who knows? All I know for sure is that florinef helped

Julie

[Sarah4444]

Thanks, Julie, you're the best.

I wonder if I could try taking Florinef just one week a month. Has anyone ever tried this? Would it mess with my system too much to go on and off like that?

[Nikki]

I tried taking Florinef when I was first diagnose at the end of 2009. For me it caused me to have really high blood pressure spikes. I'd have vertigo, chest tightness and start shaking whenever this happened. Now, I DO have these episodes normally but the Florinef cause them to be more frequent (a few times a week) and my blood pressure was like 170/145..I tried lowering the dose and staying on it for awhile to see if it went away, but it just kept happening, so I couldn't stay on it any longer.

[redoctober]

Sorry, I meant to add that I take it during rough patches. For instance, after I got my gallbladder removed; I became bedridden for 6 + months. I could barely stand and was unable to eat anything. The nausea was unrelenting. Florinef turned it around for me. It gave me energy. Within days of taking it (and liquid "E" as a GI prokinetic), I could move around and eat again. It was nothing short of a miracle.

I can only guess that the anesthesia or general assault to my body really messed with my autonomic nervous system. My BP was often immeasurable during that period...OR I had an extended allergic reaction to the anesthesia??? Who knows? All I know for sure is that florinef helped

Julie

Sorry to revive an old thread...but I just found this thread searching for florinef and gallbladder. I just recently had gallbladder surgery...and while my GI symptoms are much better (no more Nexium 40mg BID), my BP/HR issues are much worse. Dizziness, fatigue, low HR, cold intolerance, etc.

Anyway, if surgery was a trigger for your symptoms...what were they, and what helped to turn things around for you, aside from Florinef & Erythromycin?

Thanks so much.

[juliegee]

Hi Red-

Sorry you're dealing with this too. I think our experiences, while similar, are different. The worst symptom I had following the surgery was nausea. My GI tract stopped working. I was repeatedly hospitalized with bowel obstructions. I couldn't eat or poop My autonomic stuff felt secondary to the GI stuff. After a week or so of not eating/barely moving the OI symptoms got really bad. My BP was often immeasurable- so low. That's when I started the florinef. It gave me energy and an appetite. The erythromycin as a GI prokinectic helped too.

What's your BP doing? If that's low, you could give florinef a whirl OR how do you do with caffeine? I wonder what a stimulant-type med would do? My son has a really low HR (in the 30's at times) and he swears by a combo of floeinef and a low dose of concerta. Just a thought...

I think any trauma- surgery car accident, emotional upset- can get us dysautonomiacs going. Hope you're feeling better soon.

Julie

[redoctober]

Three weeks ago I would awake in the middle of the night with my heart racing in a pool of sweat....BP struggling to make 100/60. I started Florinef .1mg and started loading fluids...now I'm 130/80 and HR floundering in the 40's at night. Not nearly as dizzy/anxious as I was, but have 24/7 headache, face feels flush...a whole new set if symptoms.

[HopeSprings]

There is the potential for withdrawal symptoms when coming off Florinef? I was considering trying Florinef (again), but having been through benzo withdrawal and SSRI withdrawal in the past, I would never want to go through something like that again. What to do... ?

Sarah -- did you end up trying the Florinef again?

[Sarah4444]

Not yet. I'm worried about trying again, since I seemed to have an increase of anaphylactic-type symptoms last time.

[juliegee]

Hey Red, your dose is too high- that headache is a sign. Consider backing your dose up to a half tablet- might do the trick. Lots of folks here take 1/2 or 1/4 of a tablet.

Naomi, I guess it depends on WHY you are withdrawing. When Mack's BP got too high his doc at Hopkins had him back off immediately without titrating down slowly. No side effects- no problems. For many, even after a long period of taking it, BP can suddenly bump up. When it does, it's a clue that you need to back off and/or drop down pronto.

[redoctober]

Hey Red, your dose is too high- that headache is a sign. Consider backing your dose up to a half tablet- might do the trick. Lots of folks here take 1/2 or 1/4 of a tablet.

Naomi, I guess it depends on WHY you are withdrawing. When Mack's BP got too high his doc at Hopkins had him back off immediately without titrating down slowly. No side effects- no problems. For many, even after a long period of taking it, BP can suddenly bump up. When it does, it's a clue that you need to back off and/or drop down pronto.

That's what I did...I dropped my dose yesterday, and only took .025mg today...to see if I might get rid of the headache. I'll probably try that dose for a few days and see how it goes. If I still have the headache...then I'll try every other day (since Florinef has a long half-life).

[CharmedLinz]

Florinef is a touchy drug for a lot of people but it seems to be a fairly mild and basic one for our bodies to tolerate.

I have some type of Mast Cell disorder, doctors I've seen won't really classify it as MCAD but I think it is. I react horribly to most medications even at tiny baby doses. I can't tolerate Beta Blockers, SSRI's, or Midodrine.

When I started Florinef I dosed on the advise of an Adrenal support group. 1/4 tab for 2 weeks, then 1/2 tab for 10 days, then 3/4 tab for 10 days, then 1 tab for at least a month before seeing if I felt I needed more.

I've now been on 1 1/2 tabs for over a year. I take 1 tab in the morning and a 1/2 at 3pm.

I tried bumping up to 2 tabs and was not able to tolerate that amount. My Cardiologist has actually asked me to get to 4 tabs a day and I said no way. His reason being is that my BP even on 1 1/2 tabs will not go above 100 systolic and since I don't tolerate midodrine he said try more Florinef.

I can't go by the headache sign that I'm taking too much, though many people do. I've always had headaches almost constantly. My PCP told me when my ankles start to swell I'm taking too much, that hasn't happened yet so no worries.

Florinef is a mineralcorticoid and basically mimics Aldosterone in the body. For example before Florinef my Aldosterone and Renin were below level on lab tests. I'm also Adrenal Insufficient so this isn't overly surprising.

A year after being on Florinef my Aldosterone and Renin levels were checked and they were suppressed down below the detectable range, which shows that the Florinef is acting to replace my Aldosterone.

I have both good and bad results from the Florinef and there are days where I think of quitting.

The Pros........

I can usually get through a night with only 1 pee break, it used to be around 7 times a night.

I now only drink around 3 liters of liquid per day, it used to be 5 or 6.

I now only urinate around 4000ml per 24 hours, it used to be around 7000ml per 24 hours.

My feet and hands used to be so cold that I would have a heating pad on 24/7 and the cold would still be painful. I can now go around most days with no socks on in the house and barefoot.

It did lessen the nausea enough that I was able to put back on ten of the 20 pounds that I had lost when I got really sick. Though the nausea is still present 24/7 it's not so bad constantly that I can't eat at all like it was.

The Cons...............

It has greatly increased my evening agitation and anxiousness.

It's made me very crabby, especially at night, feels like too much adrenaline.

It's worsened my PMS.

I now have insomnia and when I do sleep it's not a deep sleep.

The cons are bad enough that I do have a lot of times that I want to stop taking it. Then I remember how horrible it is to pee 7 times a night.

As for weaning off, if I stopped taking it I would have to slowly wean off because of the Adrenal Insufficiency. Quitting Florinef stresses your adrenals. If you have healthy adrenals it shouldn't cause a problem. If your adrenals are weak or struggling it might be too much for them to handle quitting Florinef cold turkey.

Hope some of this might help or give some insight.

[juliegee]

CL-

What a great post- so full of information. i especially like the way you titrated very slowly with this med!!! I agree- 4 tablets is way too much & downright irresponsible of your doc to recommend so much

Florinef is usually taken in the AM- any way you could slowly try moving your 3PM dose up by an hour a day- until your sleep is improved? Just a thought. I see that you get PM improvements & probably still will as your levels should remain fairly constant over time.

BTW, hope you're keeping an eye on your potassium levles. At your dose, my son supplemented with Slow K-8 (prescription.)

Julie

[redoctober]

Very good information from CL and MM...thanks so much for your input on this thread. Very valuable resource for those who will be searching for info on Florinef.

One other question -- I'm still getting headaches despite having what appears to be "normal" BP. If I go exercise for a bit...my BP will come down and the headache will go away. Is there an adjustment period to the Florinef, even if you're titrating slowly?