Florinef: your review? And, isn't it a steroid = not good for immune?

[charlie1]

Thanks for being candid @Sing. I'm already very frustrated so no, you didn't make it worse I'm 56 yrs old and like you, want the future brighter than its looking right now. I'm getting impatient.

I went to my GP today for some drug renewals and thought I'd show her the Report Brief from the IOM. She took one look at the proposed diagnostic criteria for ME/CFS/SEID and said " well then, over 50% of my patients have this". I said " ALL the criteria are met, as in my case" and she said, "Yes, take apnea for example". I knew right there and then that I would not speak of this to her again And like you, although so many people suggest I switch doctors, I don't have the energy to go on that search.

Before I venture down the way of virology in the States, I will go the functional medicine doctor one hour away as he can order lab tests and prescription medicine, unlike naturopaths ( here in Canada anyway). I'm hoping he'll let me try the hydrocortisone again and set me up for an Organic Acids Test (which I would have to pay for). After that, not sure what I'll do.

Thanks for your response. All the best to you.

 

[EtherSpin]

I've been on 0.2mg since December and trialling Midodrine (vasoconstriction) since soon after then - mido is a fail, side effects not ideal and no perceived benefits despite BP improving . so yesterday was told to cease mido immediately and double my florinef so Im on 4 tablets or 0.4mg each morning .
I didnt think too much of it but am super woozy, extra cognitive dysfunction or maybe its sedation of a sort - I can recall now though that way back in december when i started on florinef the doc said begin on 0.1mg (1tablet) for a week THEN go to 2 if you are ok with this.
also read around the web that before starting or upping a user should take a few days to up salt and fluid intake.

 

[physicsstudent13]

Does florinef increase aldosterone or supplement it? I have horrific hearing loss and can't work and I read that compounded aldosterone could save my hearing and career

 

[Ema]

Does florinef increase aldosterone or supplement it? I have horrific hearing loss and can't work and I read that compounded aldosterone could save my hearing and career

Probably both, if low aldosterone is the reason for your hearing loss. You don't need to have compounded aldosterone though. Florinef will work too and it is a LOT cheaper. It's worth a shot, for sure. I would advise starting low and increasing by 1/4-1/2 pill at a time though since it will change the electrolyte balance in your body and that can cause some headaches at first. Good luck!

 

[physicsstudent13]

yeah the cortineff seems much less expensive than compounded aldosterone but I'm not sure what the differences are. I'm horribly handicapped after people told me to take antibiotics on here and can't work with the hearing loss now.
there are some experimental studies that show that aldosterone can restore hearing loss, mine was from antibiotics I think including rocephin, tinidazole, especially ampicilin and roxithromycin.
but I really don't know how aldosterone could help, maybe by lowering some kind of inflammation or

 

[Ema]

yeah the cortineff seems much less expensive than compounded aldosterone but I'm not sure what the differences are. I'm horribly handicapped after people told me to take antibiotics on here and can't work with the hearing loss now.
there are some experimental studies that show that aldosterone can restore hearing loss, mine was from antibiotics I think including rocephin, tinidazole, especially ampicilin and roxithromycin.
but I really don't know how aldosterone could help, maybe by lowering some kind of inflammation or

Hearing loss can have a variety of causes. Low aldosterone changes sodium and potassium balance. Restoring aldosterone can help if low aldosterone is the cause behind the hearing loss. There is a simple blood test for aldosterone.

Antibiotics can damage cochlear neurons. This damage may or may not be reversible over time. This is totally different than low aldosterone though so I would hope you can see a hearing specialist who can help you sort out potential causes and treatments more thoroughly.

 

[physicsstudent13]

there is no cure for hearing loss and the developing therapies like stem cells may not ever work. I have a friend who is strongly against cochlear implants
antibiotics are also neurotoxic and ototoxic and did terrible damage to me; I don't know how they can even sell gentamicin since it destroys multitasking and hearing and balance. and it is a horrific thing to be dizzy and lose your balance.
I felt my hearing improved when I got a steroid injection of dexamethasone and nasal oxygen and combivent at the ER. the oxygen seems to help a lot and seems to be the key. I wake up every day with horrific hypoxia from asthma and sleep apnea and brain fog
the ENT I saw I don't know if he's good found some pus in my ear so I don't know what to do since my ear is infected.

 

[Valentijn]

I'm horribly handicapped after people told me to take antibiotics on here and can't work with the hearing loss now.

No one here told you to take antibiotics. And I'm also pretty sure you described the state of your health in catastrophic terms even in your earliest posts.

And yet again, I strongly recommend you solve your health issues with your doctors, instead of coming here for advice. Especially since you feel that you have been given bad advice.

 

[Hip]

Can anyone remember when they first started taking Florinef (fludrocortisone) how long it took for the benefits to appear?

I recently took Florinef 0.1 mg daily (along with potassium chloride 500 mg and sodium chloride 2 grams). I took it for a week, but noticed no improvements in symptoms. I am planning to try it again soon.

The only unusual manifestation was a return of normal human emotional responses after first starting Florinef (I suffer from anhedonia and blunted affect — the latter is the reduction of normal emotional responses).

Florinef is known to enhance emotional empathy in borderline personality disorder via mineralocorticoid receptor stimulation, 1 so this drug is observed to increase affect. Unfortunately for me this was only a temporary thing, because I returned to my usual state of blunted affect by the next day.

But anyway, I am mainly hoping that Florinef might improve fatigue or brain fog. I have POTS alongside ME/CFS, and of course Florinef is a treatment for POTS, so this drug may have the potential to help.

 

[Never Give Up]

Can anyone remember when they first started taking Florinef (fludrocortisone) how long it took for the benefits to appear?

I recently took Florinef 0.1 mg daily (along with potassium chloride 500 mg and sodium chloride 2 grams). I took it for a week, but noticed no improvements in symptoms. I am planning to try it again soon.

The only unusual manifestation was a return of normal human emotional responses after first starting Florinef (I suffer from anhedonia and blunted affect — the latter is the reduction of normal emotional responses).

Florinef is known to enhance emotional empathy in borderline personality disorder via mineralocorticoid receptor stimulation, 1 so this drug is observed to increase affect. Unfortunately for me this was only a temporary thing, because I returned to my usual state of blunted affect by the next day.

But anyway, I am mainly hoping that Florinef might improve fatigue or brain fog. I have POTS alongside ME/CFS, and of course Florinef is a treatment for POTS, so this drug may have the potential to help.

My son takes Florinef twice per day and responds dramatically 20-30 minutes after taking it. The positive effects build over days and weeks.

He has found that the generic manufactured by Barr Laboratories is much more effective than the one manufactured by Impax(Global).

 

[Ema]

Can anyone remember when they first started taking Florinef (fludrocortisone) how long it took for the benefits to appear?

It's pretty fast for me too...definitely within a day.