Hi,
Does anyone have experience of taking Fludrocortisone?
My husband is experiencing massive blood pressure drops when standing but high pressure lying down.
He is wearing abdominal binders, compression socks and is trying to increase his fluid intake.
Having experienced steroid psychosis in the past he, he is wary about taking the drug.
We are also concerned that it will raise his BP further.
How have you got on with it?
My husband took fludrocortisone for about a year for OH. He recently weaned off of it and seems to be doing better. Withdrawl was challenging even at a low dose. If you don't have an adjustable bed, you need to get one. He needs to sleep with his head elevated. Pillows don't cut it. Add electrolytes to the water - I like Liquid IV.
SE
Hi ,Thanks for your reply.
It sound a little ominous.
May I ask how he reacted to it and the problems on getting off it.
We are both reluctant to use drugs.
We sleep on a futon and have done for nearly 40 years . They keep banging on about bloody hospital beds which we have noth said no to. However, did raising his head make a significant difference?
No one has mentioned using electrolytes in his water we can definitely give it a try.
My husband had swelling in his legs, steroids make you retain fluids. He was more fatigued. You really need to talk to your doctor about his medication and dosage. He needs to keep his head elevated when sleeping to keep the blood pressure down. Maybe you can put a foam wedge under the mattress.
SE
My husband takes it. Fluid in take and compression wear help. It is worth trying it if the blood pressure is unstable. I do notice it can drop dramatically after food or sitting to long. A chat to the neurologist might help you work out a plan. As for the hospital bed, you may not be at that point where you need one. We only got ours when Peter became less able to move himself in bed and getting him comfortable due to pain. We got ours through the OT team. They are great at reassessing his changing needs. X
My wife has been taking it for last couple of years , she had real problems with OH -anywhere any time she'd pass out. On a few visits to our GP they couldn't even measure her pressure !!! She takes 150 micrograms once a day in the morning - and the passing out has stopped. We monitor her blood pressure regularly. Hope this helps!!
Your description of your husband's situations sounds similar to Jackie's (but who knows with MSA!). Jax was starting to suffer badly from OH fainting a number of times in the week. As she is unable to stand - her balance went many years ago - no falls followed. Jax started Fludrocortisone, did the abdominal binder thing, compression socks and we kept water intake up (through her PEG). This reduced the fainting episodes dramatically without doubt the Fludrocortisone being a major part in that.However, we had been concentrating on Jackie's low blood pressure and a chance reading showed her blood pressure to be very high. Checks thereafter showed Jax had wild swings +200 down to 50ish. Damage was already evident in her eyes from the high BP.
The medical dilemma was which do we treat the low or the high. After much deliberation we took the view that the fainting we could manage...not good but manageable....high blood pressure with the risks of stroke etc. was not manageable.
Jackie came off Fludrocortisone, ignored the binder and compression socks and gradually took medication for high BP (on 3/4 usual dose). That was November last year. She still gets BP swings with some low readings but hasn't fainted once! My non-scientific analysis is that the body was being 'over alerted' because of the massive BP drop from excessive high to very low and hence she fainted. Bringing the swing into a more normal range averts fainting.
As an aside our surgery in November organised an 'urgent' 24-hour BP monitoring to try and understand more. The appointment has just come through, for the end of March. No comment!
Sorry for the long explanation however I hope it helps,
Take care, Ian
I’ve been on it for 6 months now. I started at 0.5 but still very low and still getting continuous dizzy spells put up to 1g and had settled not sure about side affects no major ones as I suffer with a lot of them anyway normally. I have a raised bed and I notice the difference when I’m staying in other places.
Thank you all for your replies. We are still unsure as to what to do.
I'm sitting her at the table while he is in a semi comatose state and has been for the past 15 minutes, unable to gold either himself or his head up.
Half an hour from now his blood pressure could be so high...
I so hate this bloody disease!
Hi,my mother was treated for a few years with Fludrocortisone 0.1 mg. She started this treatment because the pressure increased and dropped very quickly. Even with the treatment with fludrocortisone, there were times when she passed out from the reclining position (in the 45º triangle) on the sofa to sitting in the wheelchair. When that and we are normal we lay down she would go back to normal But when she didn't come back so fast, we would elevate her legs.
Today she is no longer being treated with fludrocortisone, as she is hospitalized because of the need for a mechanical ventilator to breathe.
Her blood pressure drops also show me very sad and angry about the disease.
I'm sorry you're going to go through this. Strength and patience and I would like to remind you that all this is going through is just a phase of your life. Be as patient as possible.
This will all pass.
Going Downhill
midodrine 
Low Blood Pressure and MSA 
heartbroken
Frequent falls when knee gives out
