Alternatives to Florinef

[DizzyGirls]

My daughter is on Florinef and has been battling yeast infections for the past 6 months.  There is a warning on the literature (and other sites) that says "do not take if you have a fungal infection".  So, my thought is that the Florinef is probably causing her body to not be able to fight these infections off.  I believe it is also causing her headaches/migraines to be worse.  I know that some of you can't take Florinef, so what do you take and does it work as well?  We've tried lowering the dose in an attempt to get her off of it, but she kept almost passing out in the shower.  So, obviously she needs something that works like it.  I would like to get her on midodrine because she has horrible circulation problems.  Her feet turn purple so quickly.  I understand, though, that midodrine is usually given with the Florinef, not instead of.  She is also being investigated for possible MCAS issues, too, so would say beta blockers might not be a good idea at the moment.  I can't get her cardiologist to call me back, I've tried for weeks, so I thought you all would at least give me some ideas so that when he does decide to call, I'll be ready.    Thanks all for your help!

[Katybug]

It is my understanding that there is not another drug that has the same mechanism as florinef. Florinef is a synthetic replacement of the hormone, aldosterone which is produced by the adrenal gland. 

There are other drugs that can raise blood pressure such as midodrine and mestinon (pyridostigmine). I tried midodrine and it had no effect at all on me, which is apparently unusual, but there it is. I think a lot of people have better success than i did. I am actually about to trial mestinon as my neuro gave me a script for it yesterday.  From what he said, it will increase bp and slow hr if it works. 

As a side note, my bp gets very low when I'm off of hydrocortisone or prednisone. My endocrinologist thinks my adrenals are sluggish. At one point the prednisone was the only thing that brought my pressure back up. However, this is probably not a treatment most docs would try. My joint pain was so bad that I was put on the prednisone and we realized it stabilized my bp by accident.  

[DizzyGirls]

Hi Katybug,

Thanks for the reply!  Good luck on the mestinon, I hope it works for you!  So, my daughter's cardiologist finally called today and we are going to try the midodrine and take several days to taper off of the Florinef.  Oh, I hope this works.  Her feet get so purple so quickly that I know not enough blood is pumping up to her head, heart, etc.  He said he doesn't want her to not have anything, so we'll give this a try.  You know, it's funny, my oldest daughter has had some rather annoying side affects from the Florinef, but my youngest is doing quite well on it.  Just goes to show that everybody's different, even within families.  Hoping this gives my daughter a little umph.

[Nymph]

I drink licorice tea daily and find that has an effect. If I miss a day I feel it.

Katie, please let us know about your mestinon trial! I am on the fence about it presently but need to decide soon whether to do it.

[Kaitlyn]

Coming to the conversation late!

Dizzygirls how is your daughter doing on the Midodrine and off the the Florinef? I've been on Midodrine for over a year and it helps some but the shower is one of the most dangerous places for sure. What my neuro has me doing is I have water and meds on my bedside table and take them before I get up. I am supposed to wait at least an hour before I attempt a shower. No more of my jump and run to the shower I've been doing all my life. I tried Florinef and had a bad allergic reaction - ugh.

Katie - have you tried Mestinon yet? I have been on that almost a year as well. Be prepared for some possible stomach upset, some of which gets better in time at least for me as my body adjusted. I was up to 120 mg but am down to 90 now. I am going to try weaning off Midodrine per my EP/Cardio (he wasn't happy the Florinef didn't work and is not a fan of Midodrine) and see how that goes. I am taking tons of homemade salt capsules (well 3-4 a day lol - I guess not tons) I am not sure if they might try desmoppresson or something next in place of the Midodrine.

good luck all both with the med dance and staying on your feet ???

kaitlyn

[Kaitlyn]

PS - nymph I should try your licorice tea. I drink a lot of organic teas

did you decide on Mestinon?

[DizzyGirls]

So, my daughter is not off of the Florinef yet.  The taper was too fast and she ended up having some bad autonomic symptoms, so I kept her at her normal dose.  She really does need it.  She was passing out, and not only lightheaded, but vertigo too.  Also migraines were worse.  It has caused everything to plummet, and she's still trying to recover.  The midodrine does seem to be helping.  Her cardio called and said she could take it three times a day if she needs it.  We've had some very strange weather in CA, so that is causing some of her symptoms too.  Such a song and dance these drugs are.  Still battling the yeast infection, and she's trying to get an ulcer, so her PCP put her on some other meds to clear those symptoms up.  I really don't know why my days go so fast!! (note the sarcasm).  When her stomach gets better, would like to try that licorice tea. 

Kaitlyn, I was wondering what you put in your homemade salt capsules - other than salt!  Had to take my daughter off of the Thermotabs, think they may have been part of the culprit to the stomach issues as of late.  Do they upset your stomach?

[dancer65]

Hi 

sorry to hear you daughter having a hard time . I stopped florinef immediately as instructed and started midodrine . I completely crashed and fainting with all the usual postie problems . They doubled my dose the first week to 5 x3 times a day that made a difference but it took a couple of weeks to really see improvement . Last week they put me 7.5 mg and I am really doing well . No syncope attacks for a whole week and I am functioning pretty well in all areas of life as long as I pace myself! My BP during the day is normal still drops a bit after the dose wears off in the late evening but not as low as it use to be

it has taken me about 8 weeks to get to this stage of improvement with the midodrine. I am still having symptons but nothing that I can't manage handle

i really hope this works for your daughter I just wanted to share as in the beginning of changing meds I thought I had done the wrong thing 

 

[Kaitlyn]

Hi DizzyGirls - sorry to hear about the struggles with your daughter. It must be so painful to watch your daughter struggle  I have a daughter (almost 32 now but I get it the mother's pain!) and also the sarcasm  

I just put salt in them. My pharmacist had said if I bought the size 0 I could fit a gram of salt in there so I bought size 1 which is a bit larger (but not hard to swallow - they are gel caps - I hate taking big horse pills!) so I know I am getting more than a gram in each. It really is helping. It is hard to get enough salt with food, even for someone who loves salt like I do and even drinking tomato juice etc. 

Yes the store bought thermotabs ... I took them once and I have enough stomach problems there was no way in Hxxx I was taking them again!! 

Before I started the homemade salt capsules my BP was really tanked (I had had a cold and 30 mg a day wasn't touching it!). I was having post prandial hypotension and supine hypotension (go figure!) to the point that I could not wake myself up. 60's/30's when I could get a reading. The combination of getting over the cold, the flare settling down and the salt capsules has really helped!

Let me know if there is anything else I can answer for you =)

Good luck and best wishes ... hugs!

Dancer65 - nice to hear you are doing better and managing better on the Midodrine! What's nice about that med is you can take it when you need it but it isn't typically hard to get off of either. Not like the Florinef.

[Kaitlyn]

PS - see more details about how to fill etc on salt capsules at "Why are salt tabs so expensive" posted by Nymph  

[Katybug]

Update: Mestinon is going well so far. When I went from 1/2 tab to whole tab I was also on a Zpak for bronchitis. I started with some abdominal cramping and diarrhea. But, I think that was the antibiotics, not the mestinon. The upside: So, I've been on one tablet once a day and I do get a window of 2-4 hours (which starts about 11/2 - 2 hours after I take it) where I feel pretty good from a POTS perspective. I don't get the build up of pressure around my heart from stooping/bending over, I am not out of breath and tachycardic from going up the stairs in my house, I have more energy, am able to be upright and do normal daily activities. The downside: It is short lived (but the goal is to eventually titrate up to 3x/day), it hasn't controlled my POTS the last 4 days when my migraine pain was in the 7-8 levels (not sure this matters as I'm unable to function with that level of migraine anyway), it is expensive even with insurance  (my monthly copay when I take it 3x/day will be just under $100.)  Decision: I'm getting enough benefit from it that I will be increasing the dose over time. If each dose gives me 2-4 hours, that could really add up fast!! 

[dancer65]

Hi kaitlin  yes it is so good to be more functional ! 

Katy that's such good news I hope you continue to improve even more as you Increase the dose 

[Kaitlyn]

Katybug - I wouldn't underestimate the power of Mestinon to wreak some havoc with your stomach  I am currently on 90 mg - was on 120 mg. Definitely not saying it isn't or can't be a beneficial med - it is. Just want you to be ready for the stomach issues. When I was first titrating up I had to go back down for a bit and then go up again. That seemed to help give my body more time to adjust and then it was easier to take. At the 90 mg I have much less issue than I had at 120 mg. I am sure everyone is different and hopefully your current stomach issues are unrelated as antibiotics can cause the crud also lol. Mestinon has seemed to help some with BP and also muscle recovery. I am about to find out just how much because I think the plan is to see where I am at baseline again and wean down the Midodrine and the Mestinon. Always so much fun and games  

Good luck!! Let us know how it's going =)

[Katybug]

I was, at first , quite concerned that the increase in the mestinon caused the gut issues. So, I dropped back down to the 1/2 tablet, ate yogurt like mad for several days to help fix my gut flora from the antibiotics,  and then went back up to the full tablet 5 days later. I didn't have any adverse reaction when I tried the whole tablet the second time, so I do feel that this time around, it was the antibiotics. However, I am only cautiously optimistic that I won't have any GI issues as I increase the dosage. My GI tract seems to be the most susceptible part of my body to...well, anything!  Lol!  So, my plan is to increase the dose by a half tablet at a time and give at least 2 weeks (more if needed) at each new dose.

I do have a question....this past Wednesday, the hematologist asked me if I was having any urinary side effects and I said no (because I wasn't.) Then, Friday evening, I started to feel like I have a mild UTI. The only urinary side effect I find listed for mestinon is urinary frequency. Does anyone know if there are other urinary concerns? My PCP tries to keep up but doesn't always have the knowledge and I'll be talking to him tomorrow about the UTI symptoms. If there is any possible  relation to the mestinon,  I'd like to bring that to his attention.

Thanks!

[Kaitlyn]

Katybug - that's great you were able to increase to a full tablet again. Another trick I found helped me when I got up to the higher doses and was having stomach problems was to take a half tab every few hours throughout the day. 

As far as the UTI issue that is interesting. I remember back in January I was having some symptoms feeling more like urinary retention but with the brain fog I can't remember what else was going on at the time lol - sorry. I know I was in a flare and can't remember what med changes might have been happening. 

Mestinon typically helps promote the muscles that control bladder, bowel and all muscles in general so yes you wouldn't think it would cause anything but frequent urination.

Good luck!

[SarahA33]

Hi there, Katie,

listed under pharmacologic interventions, side effects of mestinon/pyridostigmine are urinary urgency and frequency. Not sure if this was what you were experiencing, but hopefully it's resolved. I hope that you are continuing to have positive results from this!

ASH Position Paper: Evaluation and Treatment of Orthostatic Hypotension, Dr. Biaggioni http://onlinelibrary.wiley.com/doi/10.1111/jch.12062/full 

[Nymph]

I decided against the Mestinon for now. Doing pretty well generally, adn better since I found a more effective method for my quercetin and started the Sentra PM. THink I won't need anything else for awhile. Finger crossed! Glad it seems to be helping you all!

[Kaitlyn]

Nymph - I just looked up Sentra PM. I had never heard of it but plan to talk to my neuro about it on Monday. I was recently diagnosed with cognitive impairment due to brain fog (Dysautonomia) and CFS. I wonder if this would help me get more restorative sleep?! Thanks for the post ?

[Nymph]

Hope it helps! I am very impressed with it so far (2 mo). To me, just getting better sleep makes the difference between barely functional and mostly functional - and I enjoy life more, too!