Mast Cell Disorders Forum - Good news for a change!

Starflower

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Good news for a change!
02/24/11 at 11:44:03

This month was the two-year anniversary of my first visit to the ER for anaphylaxis... wow!

Today I had an appointment in the morning with my GP (for an annual physical) followed my an appointment with my allergist. Good news... there's no longer any protein in my urine!!!!! Grin

This is AWESOME. We'll see what turns up with all the testing (CBC, CMP, TSH, CRP... I even got them to order a new baseline tryptase), but I'm expecting the good news to continue. I feel SO GOOD

When I think back to how I felt two years ago... or even as recently as last summer... there's simply no comparison. My medications are working and I've learned enough so that I can prevent (or at least stop) reactions before they blow up into something big. Whoo hoo!!!

By the way... green light on the switch from Gastrocrom to powdered cromolyn sodium Wink

My allergist was slightly freaked out that I'm still having (minor) symptoms even on twice the "normal" doses of H1 and H2 antihistamines... he gave me some emergency prednisone and a new Rx for a twinpack of EpiPens, just in case. Here's hoping that I never have to use either one Cheesy

What a good day this has been!!!!!!!
Heather

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We're all in this thing together
Walkin' the line between faith and fear
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Kim Guiding Light Offline Posts: 137 Rapid City SD	Re: Good news for a change! Reply #1 - 02/24/11 at 13:00:53 Heather; That is GREAT news!!! I am so happy for you. I love to hear the "good day" stories.... gives us all hope that those days are still out there and will come along again. Stay Well, Kim
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In2butterflyz

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Re: Good news for a change!
Reply #2 - 02/24/11 at 15:31:53

Congratulations to you Heather I am truly so happy for you!!! Smiley

You have done such an amazing job at educating yourself about Mast Cell Disorders. I have learned so much from you this past year!! Smiley

Ironically you and I almost share the same two-year anniversary date, my first ER visit for anaphylaxis was Feb. 8th

Unfortunately I am not having as much success as you are. I am still shocking somewhat frequently even though I have been on all the basic medications (Zantac, Zyrtec and Singulair) for the past year. I have really been trying/hoping I would not have to go on Gastrocrom but it seems now that I might not have a choice. I am VERY interested in hearing all about your powdered cromolyn sodium experience, I hope it works the same for you! I am thinking that I will probably go that route myself soon (maybe that will stop me from shocking).

Take Care,
Tracey

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Riverwn

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Re: Good news for a change!
Reply #3 - 02/24/11 at 15:47:02

Heaather, You are so brilliant, especially with helping other people that I sometimes forget, you have needs too.. and I am so happy that all is going well physically right now for you. I love the way you stand your ground and get what you need

Tracey . think about the amounts you are on.. see if something can be tweaked up slightly, just enough to bring you more comfort. Some of us just need higher amounts.. good luck!!
Hugs,
Ramona

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~~~Count Your Blessings!~~~

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missybean Mentor Offline I Love YaBB 2! Posts: 439 Washington	Re: Good news for a change! Reply #4 - 02/25/11 at 06:46:29 Awesome news! Yea!
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Joan

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Re: Good news for a change!
Reply #5 - 02/25/11 at 12:29:59

Heather,

That is AWESOME good news! Do you attribute it to the gastrocrom? I missed something somewhere about the powdered gastrocrom you have. Where did you get it? That would be so much more convenient for traveling! Hope everything shows up normal on the rest of your tests!

It's great that you posted your history, as I'm sure it will give hope to so many others who aren't stable yet.

Kiss

So happy for you!

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Joan

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Starflower

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Re: Good news for a change!
Reply #6 - 02/25/11 at 14:07:45

Hi Joan,

I do think Gastrocrom is a big help, but Singulair seems to be the magic drug for me. About a month after my hematologist increased my dose to 30mg/day I noticed, "Wow... I actually have energy again!!"

I'm planning to switch to the powdered cromolyn sodium very soon... much cheaper and SO much easier for traveling!! CVS told me they could order it. I'm also going to check with Target. That's where I get my other two prescriptions. From what I can tell it should work just as well to mix it myself. One year of Gastrocrom (even at the reduced price negotiated by my insurance company) costs around $11,500. I expect powdered cromolyn sodium to cost no more than $1,200... 10% of what Gastrocrom costs. And for what? The semi-convenience of pre-mixed solution?? Huh

It's just cromolyn sodium and water... not fairy wings and unicorn horns.

Heather

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We're all in this thing together
Walkin' the line between faith and fear
This life don't last forever
When you cry I taste the salt in your tears
(Old Crow Medicine Show)

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Joan

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Re: Good news for a change!
Reply #7 - 02/25/11 at 19:40:59

Hi Heather,

I do remember now that you said Singulair made a huge difference. 10 mg. of Singulair didn't do anything for me. Is there a way to measure leukotrienes, or is it trial and error? What prompted the doctor to give you a larger dose?

For me, the gastrocrom ampules are cheap ($35/mo.), but Singulair is really expensive. Still, dry gastrocrom would be nice to have.

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Joan

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Sandi Guiding Light Offline I Love YaBB 2! Posts: 205	Re: Good news for a change! Reply #8 - 03/07/11 at 17:37:29 Fantastic news Heather! Keep up the good work!!! Let's hope those epi's expire unused!
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Starflower

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Re: Good news for a change!
Reply #9 - 03/08/11 at 00:25:05

Thanks Sandi! It is awesome when those EpiPens go unused Grin

Joan... I don't know why I forgot to reply to you! I think it is possible to measure leukotrienes for research purposes, but I haven't heard of any patients who had their serum level tested. It does seem to be a process of trial and error. I'm not 100% sure why my hematologist prescribed the higher dose of Singulair. I think it's because the 10mg was helping and Singulair is still a relatively safe drug. The next step would be plaquenil (which is still pretty safe), but after that things get scary... like Rituxan. It's being used in a wide variety of autoimmune disorders, but NOBODY knows if it would work for me because I have such a rare autoimmune disorder. Also, the side effects of Rituxan are substantial... by temporarily killing off your B cells you're making yourself vulnerable to infection for several months. There's also the danger that a hidden (occult) infection could use the opportunity to re-emerge and kill you! It's rare, but it does happen from time to time... so it's nothing to fool around with until you've exhausted your other options. As long as the Singulair is working I am one happy camper

Heather

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We're all in this thing together
Walkin' the line between faith and fear
This life don't last forever
When you cry I taste the salt in your tears
(Old Crow Medicine Show)

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