MCAS: Mast Cell Activation Syndrome (or Disorder)

en bloc · 02-07-2016, 10:18 AM

Quote:

Originally Posted by stillHoping

I don't have NMH/OH, just POTS.
I tried this treatment twice. The first time was when my POTS was just diagnosed, I had normal BP and the Florinef, salt and water raised my BP so I had to add propranolol. I am very sensitive to medication so it took a few months to find the exact combination, and I continued for about 2 years.

I tried to return to this treatment recently, my BP now is lower (100-80/60-70), probably because I hardly eat salt or processed food. So this time I didn't need the propranolol. I couldn't tolerate the salt because of GI and iron issues, so I stopped it.

That's what I thought you said (that you DIDN'T have NMH). That's why I was confused because Florinef is used the treat NMH and to increase BP. Not sure why they would have Rx that for you if you didn't have NMH or low BP. The medicine is designed to retain fluids to raise BP...that is all it does, so it made no sense why they would Rx this for you.

stillHoping · 02-07-2016, 10:54 AM

Quote:

Originally Posted by en bloc

That's what I thought you said (that you DIDN'T have NMH). That's why I was confused because Florinef is used the treat NMH and to increase BP. Not sure why they would have Rx that for you if you didn't have NMH or low BP. The medicine is designed to retain fluids to raise BP...that is all it does, so it made no sense why they would Rx this for you.

This is also a treatment to POTS, two doctors recommended it to me even without NMH or low BP, and I know others with POTS without NMH who got it.

The goal of this and other treatments for POTS is to increase the amount of blood reaching the head when standing. Either by increasing the blood volume or the vasoconstriction.

Have you used Florinef and salt ?

en bloc · 02-07-2016, 11:37 AM

I have used Florinef, Midodrine (vaso-constrictor) and salt for 19 years.

The sole purpose of Florinef, is as you said, to increase blood flow to the head. it does this by helping the body retain fluids and increase BP. The reason your BP increased when you took it is because that's exactly what the medication is supposed to do.

That goal you mentioned is exactly what those with NMH also need. Because that is what is needed when BP drops too.

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