The primary reason to take the Florinef is to increase your water retention.  That's its main purpose.  I take natural licorice root extract (with glycyrrhizin) instead, but for the same reason, to increase my water retention in order to try to keep my blood pressure up.  (I prefer the licorice root because I can vary my dosage more easily with it.)  If you want to reduce the water retention, talk to your doctor about lowering the Florinef.  

Based on my husband's experience, though, you're going to continue to be pretty darn puffy as long as you're on the prednisone.  Long before I was diagnosed, a doctor wanted to put me on prednisone to see if it would help me.  My endocrinologist felt it was too drastic, so we compromised and I started taking Cortef, which supplemented my adrenals without going to a full replacement dose.  If I really needed an extra boost, I would take an extra 2.5mg.  Cortef in generic form is also relatively inexpensive.

You might try discussing this with your doctor, to see if you can come to a compromise that you're more comfortable with.  I always prefer trying to limit side affects of meds, rather than taking more meds to deal with the side effects.  The more meds you throw in (and you're already on a lot), the more likely you'll have drug interactions and the harder to identify which are helping and which are hurting.

Thank you Kat for the advice, I will talk to my doctor about Cortef. I talked to the pharmacist about how full of water I am, and he said the only solution would be to put me on another steroid instead of Prednisone, like Imuran (never heard of it) which doesnt have the bloating side effect so this will minimize the bloating that I already get from the Florinef.

Thank you Anaphylaxing for your advice as well. I am hoping that they will start to taper the Prednisone soon, but 7 months being in the ER every week, and now its been 5 or so weeks since I have been in the ER, i dont see them stopping this anytime soon I will also ask my doctor about hydrocortisone to see if this is something I can try.

Kat you are so right, with all of these side effects it is so hard to tell whats working and whats not working and what I would be like without all of these meds.

I would try to get them to max you out on H1, H2 blockers and mast cell stabilizers, antileukotrienes, and even inhaled steroids if necessary to see if oral steroids can be tapered. This is what was not done soon enough with me and allowed me eventually to tolerate a slow taper.

Steroids are a last resort as you probably know but so many docs use them as a go to. I'd also want to be maxed out on the above before trying Imuran which is very potent also. That being said if you max out on other things sometimes they are necessary, but the mast cell docs don't use them unless there are no other options

Can you get to Boston or South Carolina to see an expert?

All the best!

Ana

Ohhh I'm so glad you are going to BWH. Things will turn around for you! Get in as soon as you can!

I would think they will try to get you off the steroids like they did with me.

Have you ever tried ketotifen? Have you been able to sort out/eliminate triggers or are your reactions too constant?

Sorry you had a reaction.

I'm IgE positive to tree nuts too

For me talking on the phone or conversations more than a few mins cause my tongue to swell and start the symptom cascade so when I'm flaring everyone knows I'm not up for conversation.

Glad the Benadryl is helping.