Florinef Disaster

[maggiez]

Hello all, 

 

I am new to the DINET community but am a 21 yr old female with pots who was prescribed Florinef at 0.1 mg and it wrecked havoc on my entire system. I went from being active in school and work to bedbound within a week of taking it. I was having unpleasant symptoms while taking it such as tachycardia, palpitations, dizziness, lightheaded, adrenaline rushes, shaking, stiff neck, eye pain, chest cramps, decreased appetite, insomnia. I stopped taking it since it was the only thing I changed since I began feeling so ill and the symptoms are still persistent. It has been about 2 weeks since my last dose, I was not tapered off. My bloodwork and EKGs are normal and I do have a history of health anxiety that plays into all of this when I feel sick. I am beginning to get hopeless as to when this feeling will pass and my adrenals will get back to normal. Is there anyone here who either had a similar experience or knows some tips/tricks or can give me some hope. 

Thank you 

[Pistol]

Hello @maggiez, welcome to this forum. I am so sorry that you have to go through this! Is it possible that you have hyperadrenergic POTS? The symptoms you describe that started after Florinef sound exactly like HPOTS symptoms ( I have it, so I know what that is like 😒). Also - if you have the hyperadrenergic type then Florinef is essentially contraindicated, hence maybe the strong reaction? 

The best tip I can give you is to try to avoid complete bedrest at all cost, no matter how hard it is to get going. Bedrest causes deconditioning which causes POTS to worsen. So - when in such a state that getting up is nearly impossible I do abdominal and leg-strengthening exercises in bed, I try to sit up at least twice each hour and as soon as I can I start to get up and move. 

Drinking is important, but in my case the thing that helps most when in such a state are IV fluids. They help regulate the cardiovascular system by maintaining even pressure within the vessels as well as increasing your blood volume - both essential in treatment of POTS. Do you have a PCP or cardiologist who can give you an order for some? My doctor used to give me a standing prescription that - when needed - I could take to an urgent care clinic or Infusion center to get the IVs. When I was unable to get them I would go to the ER and they would infuse me. In a case like yours an ER visit would be appropriate as last resort, because it is difficult to get through this and IV fluids can turn it around in an instant. 

Also - have you contacted the physician that ordered the Florinef? 

Hang in there, call you doctor and be hopeful!

[MomtoGiuliana]

I second the IV fluids as well as trying hard to stay as upright as possible during the day.  Have you been able to see a specialist or your prescribing dr since your symptoms worsened?  If the tachycardia is severe, a beta blocker may help.

My experience with POTS flare ups is that they come on fast.  One week my life is pretty "normal" and the next I can barely stand up.  Fortunately for me as I have gotten older I have longer periods of feeling well.  Hopefully for you this will also be the case, and you will recover from this flare up within days to weeks.  For me, IV fluids really help.  At least I get enough relief that I can stand up and move around with more ease and feel a bit less miserable.  I also increase my dose of beta blocker if needed (under dr's supervision).

[maggiez]

I do have an electrophysiologist as well as a primary care. I have an appointment with an endocrinologist coming up so I am hopeful that they can give me some insight. I’m not sure what kind of pots I do have as I was recently diagnosed. I’m currently taking it day by day trying to rest and do small activities. I have heard that in some cases it takes a while for the body to get back to normal after a bad reaction to the florinef but I’m hoping I’m on my way to getting better. I have been making sure to increase electrolytes and salt but hear what both of you are saying about IV fluids. Thank you both for responding to me and giving me insight!