Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl Go for the Goal! The Motivation Thread! >> Go for the Goal! The Motivation Thread! >> Good news for a change! http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1298591043 Message started by Starflower on 02/24/11 at 11:44:03

Title: Good news for a change!
Post by Starflower on 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!!!!! ;D 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 ;) 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 :D

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

Title: Re: Good news for a change!
Post by Kim on 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

Title: Re: Good news for a change!
Post by In2butterflyz on 02/24/11 at 15:31:53

Congratulations to you Heather I am truly so happy for you!!! [smiley=2vrolijk_08.gif] 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=dankk2.gif]

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

Title: Re: Good news for a change!
Post by Riverwn on 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

Title: Re: Good news for a change!
Post by missybean on 02/25/11 at 06:46:29

Awesome news! Yea!

Title: Re: Good news for a change!
Post by Joan on 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.

:-* So happy for you!

Title: Re: Good news for a change!
Post by Starflower on 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?? :-? It's just cromolyn sodium and water... not fairy wings and unicorn horns.

Heather

Title: Re: Good news for a change!
Post by Joan on 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.

Title: Re: Good news for a change!
Post by Sandi on 03/07/11 at 17:37:29

Fantastic news Heather! Keep up the good work!!! ;D Let's hope those epi's expire unused! :)

Title: Re: Good news for a change!
Post by Starflower on 03/08/11 at 00:25:05

Thanks Sandi! It is awesome when those EpiPens go unused ;D

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