Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl Welcome! >> Introduce Yourself/Share Your Story >> Newly diagnosed w/MCAS http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1390791308 Message started by Ladybug on 01/26/14 at 14:55:08

Title: Newly diagnosed w/MCAS
Post by Ladybug on 01/26/14 at 14:55:08

Hello all,

I suffered with Chronic Urticaria and Angioedema for two years. I have recently been diagnosed w/MCAS.

Twice a day, I take one Ketotefin pill (H1), one Zyrtec (H2), and 300 mg Zantac. This has been working for me pretty.

This all started when I received a flu shot two years ago. I do not know if the flu shot triggered all this, but I developed huge welts after that shot along with angioedema.

I hope to learn as much as possible so that I may help others along the way.

Thank you all in advance for your support. I am so sorry that you have to be here. :(

Title: Re: Newly diagnosed w/MCAS
Post by Aggie48 on 01/27/14 at 13:23:53

Welcome to this message board! I hope you find the information as useful as I have! I was diagnosed with MCAD in 2009 and have been managing pretty well. All my symptoms in the past presented as stomach issues. I recently started going through menapause and for the first time in my life I have hives and angiodema of the face - mainly my lips. I have been covered with hives for about 3 months now and it is driving me crazy. I am currently talking Zyrtec, Zantac and Vistaril. I've also just started hormone therapy hoping that will help. I hope your hives resolve and that you remain symptom free! God Bless!

Title: Re: Newly diagnosed w/MCAS
Post by Starflower on 01/28/14 at 04:08:19

I don't mean to interrupt Ladybug's thread (welcome Ladybug!), but Aggie... are you using any supplements to deal with menopause? The hormonal changes alone could be enough to cause your symptoms, but your posts have made me wonder...

Heather

Title: Re: Newly diagnosed w/MCAS
Post by Aggie48 on 01/29/14 at 05:25:35

hello Heather!
My doc just started me on estrogel, progesterone and DHEA. I'm hoping it will help. Im nervous about the progesterone - I've tried to take it in the past and it made me mean!!! >:( I hope it doesn't affect me like that again - as does my hubby! LOL :D

Title: Re: Newly diagnosed w/MCAS
Post by mountain girl on 02/05/14 at 01:39:40

Aggie....have you asked your immunologist/dermatologist about getting on Xolair for the hives? It is in stage 4 trials, about to be approved for the treatment of chronic hives.

Title: Re: Newly diagnosed w/MCAS
Post by mountain girl on 02/05/14 at 01:44:46

Ladybug,

Welcome to the forum. I have learned so much from everyone here. It is so helpful to know that you are not alone in your struggles.

I was also triggered by a drug being put into my body. And like you, I have found a combination of drug therapies that keep me functioning very well. It took a year for me to recover from the major 'flare' that changed my life. Now I just try to read as much as I can about mast cell disorders, stay healthy and avoid excessive stress.

I have read about other patients who were triggered by a flu shot, small pox shot, chemical exposure, and steroids.

Title: Re: Newly diagnosed w/MCAS
Post by Ladybug on 02/08/14 at 07:02:04

Thanks for the welcome, all.

I am a bit anxious about my first GI visit this Monday. I have a list of my problems (including indigestion) along with MCAS diagnosis. I sure hope he will do an endoscopy and colonoscopy and do the right tests for mast cells and whatever else they could/should do. ::)

The following week, I see a dermatologist. I have three different growths on my skin doing their won thing to be looked at and/or biopsied. The one on my back was bleeding. My allergist called it a lesion, but I think I scratched it open. I am anxious about both of these tests. :D

I am also trying to find out about H3 and its relationship to weight gain when out of balance with the other H's due to blockers, etc.

You are all remarkable!