Mast Cell Disorders Forum

barbara

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California

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01/09/11 at 06:14:38

I am new to this forum and would like to introduce myself. I live in Northern Ca. and was diagnosed with Mastocytosis Enterocolitis by my GI doctor who was wise enough to test for this disease during a EGD. I have lived with chronic GI problems and allergies most of my life. I am thrilled that someone is finally getting to the source of my problems! I had a bone marrow bx last week and will get the results this week. In the meantime, I am taking numerous medications to decrease my symptoms. My specimens will be sent to Dr. Akin after the local pathologist looks at them. I have 3 very skilled MD's, my hematologist, allergist and GI doctor. I feel very blesses to be in the care of these 3 wonderful doctors.

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Starflower FORUM ADVISOR Offline Not a medical doctor Posts: 715 Indiana	Re: New Member Reply #1 - 01/09/11 at 11:59:44 Hi Barbara, I think you're the very first person who joined this new forum instead of the old one! Welcome I'm sorry that you suffered for so many years without answers, but it sounds like you're really on the right track now!!! What medications have you been adding? Do they seem to be helping? Heather
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barbara

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California

Re: New Member
Reply #2 - 01/09/11 at 14:34:38

I am currently taking Allegra, Singulair, Pepcid, Prilosec, and will start Cromolyn Sodium this week. I also have been on Allergy injections and Xolair for my asthma. My GI symptoms seem to be improving on this regimen. It's a lot of medications for me but I do not want to become symptomatic again. I am wondering if I can eventually stop some of them. I'll leave that up to my specialists who I totally trust.

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mikev

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st louis, mo

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Reply #3 - 01/10/11 at 02:23:21

barbara:
My allergist, in st louis, did one of the studies for approval of xolair for the FDA as his expertise is asthma. I asked him as a friend of mine Manuella has MCAD & she had questions if he thought that there was a possiblity of of it helping this version of masto as it does some binding of mast cells. His answer was yes, although he didn't think it would help me as I'm a leaker. My question is did you start to improve when you started taking it. Also does your insurance cover it as has to be very expensive. Having 3 docs working with you and having dr akin oversee fabulous.
mike v

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barbara

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California

Re: New Member
Reply #4 - 01/10/11 at 08:04:19

Hi Mike, I have been on Xolair injections for a little over a year. They have helped with my Asthma but I don't really think they've helped with my Mast Cell disease in my GI tract. I do know that my allergist wants to keep me on it due to it's effect on Mast Cells. I am fortunate that my insurance does cover it. I have a PPO plan through my employer. I'm afraid I will not get to retire early because of insurance. Who will cover someone who has a rare disease?

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mikev Guiding Light Offline I Love YaBB 2! Posts: 188 st louis, mo	Re: New Member Reply #5 - 01/11/11 at 14:41:18 barbara: I'm in the same boat, gastrocrom is very expensive and if the new drug called mastinib works & they are testing it on people like me who have systemic cuteanous masto, the cost will be off the charts. So retirement who knows, i"m 64 and was hoping 66 but with masto???? MikeV
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Riverwn

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Gainesville, Florida

Re: New Member
Reply #6 - 01/28/11 at 06:24:53

I know exactly how you both feel--but I wasnt given a choice. I didnt have health insurance and they cut me off the work schedule once I couldnt hide being sick anymore--so I was forcefully retired. It does have as good ending though.

IF your work is affected enough by you being ill, thats the time to file for disability. You do NOT have to be off work to file for it--You DO have to show how the illness affects your ability to work and your health. Im going to post some more very important details for SSI and SSD on the DISABILITY thread, so follo me there if you want to know ho-to and what to do.

As far as those 2 meds...I havent tried either one.. I believe they are both considered chemo type drugs and given only hen the symptoms are uncontrolled by any other drug and acute in experience.

Ive heard great things about Xolair and Gleevac too, but Gleevac has some pretty bad side effects.. I know most people will make the decision with their doctors help

Hugs,
Ramona

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~~~Count Your Blessings!~~~

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mikev

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st louis, mo

Re: New Member
Reply #7 - 01/28/11 at 10:23:17

Ramona:
You know we where all glad the govenment came through for you, usually it's only the rich that are taken care of, atleast it seems that way sometimes. Anyway from what I read Mastinib is similar to gleevac without some of the side effects. Who knows if I'll qualify anyway. Chronic skin pain & sensitivity doesn't mean much atleast that's what my doc maintains. I wish he had to take pain meds almost every day to make it through the day. Anyway they are testing it on RA & pancreatic cancer as well, so matybe my daughter & I will end on same meds one of these days.
Good luck
Mike V

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DeborahW, Founder FOUNDER/ADMIN Offline Posts: 1224 USA	Re: New Member Reply #8 - 01/28/11 at 14:18:54 *This Topic was moved here from News* by DeborahW, Founder.**
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DeborahW, Founder FOUNDER/ADMIN Offline Posts: 1224 USA	Re: New Member Reply #9 - 01/28/11 at 14:22:13 So glad you have joined us, Barbara! It sounds as if you have a good team watching over you. So, don't forget to keep up posted, because we really do want to know how you are doing!
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Riverwn FORUM MODERATOR/ADVISOR Offline Posts: 993 Gainesville, Florida	Re: New Member Reply #10 - 01/29/11 at 07:08:36 Thanks Mike, youre always so supportive and that means more than I can say Have a wonderful peaceful day, Ramona
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Josie Ex Member	Re: New Member Reply #11 - 01/29/11 at 07:29:28 Hi Mike , Did you see my post on the old forum for you ? If not ill pm you xxxxxxxxxxxxxxxxxxxxxx I have another infection so am taking antibiotics and having lots of sleep
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sullivan777

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Re: New Member
Reply #12 - 10/21/12 at 12:25:21

Hi, I'm sullivan 777 from Brisbane, Australia.
I'm glad that someone talked about not being able to work as I am unable to go to work I feel just so sick most of the time.
How do you go with the government in USA for disability payment and help with the cost of medications. I have MCAD I was diagnosed this year but I have been sick for many years.
I am applying for disability in Australia.
Sullivan 777

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sullivan777

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Re: New Member
Reply #13 - 10/21/12 at 12:26:31

Hi, I'm sullivan 777 from Brisbane, Australia.
I'm glad that someone talked about not being able to work as I am unable to go to work I feel just so sick most of the time.
How do you go with the government in USA for disability payment and help with the cost of medications. I have MCAD I was diagnosed this year but I have been sick for many years.
I am applying for disability in Australia.
Sullivan 777

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