Hi Fuchsia,

Welcome to the forum!

Your findings sound like masto to me, especially that high affinity IgE receptor finding you have.  We have another masto patient here with that, Heather, and she can tell you all about it!!  

It seems to me that you need to go to a masto expert, for you've obviously been to many doctors and still not managed to pinpoint it. but that's not surprising because unless they KNOW MASTO, they often come close, but they don't hit the mark.  So, I think that you need to see some of the experts that we have around the country.  

Where do you live, perhaps one of them lives close to you.  

You've got Boston, and Baltimore, Richmond and South Carolina, and you have Minnesota and California where some of the major authorities are, so if you tell us where you live, perhaps we can help you.  

I hope this helps!


Lisa

Hi Marie,

It sounds like you've already done some pretty thorough investigation... time for some relief from your symptoms!  That's what I would focus on at this point.  As Lisa said, I have the same antibody you do.  Although everyone is different and the mix of medications that works for me might not work for you, here's what I take for my mast cell disorder:

Morning:
- 20mg Claritin
- 300mg Zantac
- 4 vials of Gastrocrom

Evening:
- 20mg Zyrtec
- 300 mg Zantac
- 30mg Singulair
- 4 vials of Gastrocrom

As needed:
- 50mg liquid Benadryl (quick relief)
- EpiPen (I carry two)
- 10mg Pepcid Complete (for heartburn flares)
- 40-60mg of prednisone (only in emergencies)
- Tylenol (for headaches, joint pain)
- Lortab or Ultram (for recurrent, severe abdominal pain)

Gastrocrom has made a BIG difference in my GI symptoms, but the best overall drug for me has been Singulair, especially 30mg instead of the usual 10mg.  I actually have energy again!  Nothing wrong with plaquenil... it's on my list of things to try if things get worse again.  If they really get bad, my hematologist recommended trying a course of Rituxan... for some people with autoimmune disorders it works as a temporary "cure" (by getting rid of all your T cells), but you have to keep repeating it once or twice a year.  It's also a much riskier drug than plaquenil or any of the other drugs I'm currently taking.  

Looking back I think I've had this disorder since I was a teenager, but when I started having a really bad flare that led to a diagnosis, one of my symptoms was extremely dry eyes.  Even though I tested negative for Sjogren's antibodies, my opthamologist gave me a Rx for Restasis (cyclosporine eye drops).  They really helped!  I was able to stop using them after a few months and the problem hasn't returned.  You would think I would be totally dried out with all the antihistamines I'm taking, but I'm not... not at all.

I agree with Lisa/Josie about going to see a real specialist in mast cell disorders.  There aren't many, but they're worth the trip.  I'm going to see Dr. Castells in Boston next month (I live in Indiana).  For now, I would focus on getting a Rx for Gastrocrom... or the more affordable alternative... powdered cromolyn sodium in 200mg capsules, which you can open and mix with water yourself.  That's what Gastrocrom is, only it's prepackaged as a liquid.  My GP is the one who prescribed it for me.  He had never heard of Gastrocrom before, but when I told him, "It's cromolyn sodium," he smiled and pulled out his Rx pad.  Cromolyn sodium is an old, very safe drug that was used to treat asthma before leukotriene inhibitors were invented.

Anyway... welcome to the group!  No question is too silly to ask.  I can really identify with the symptoms you've been experiencing.

Heather

Hi Marie ,

I ahve copies of all of the things I mentioned . I will Pm you my email address do you email ? If not I will post links for you to click on many hugs , Josie

Hi Marie ,

I will pm you . it will come to you as an email Then you can email me is that ok ? Well give it a try and see ??

Hugs
Jose

Hello again, I keep rereading the posts, trying to decide what to do.  I think I will cautionally add benedryl at night and ask the doctor about cromolyn sodium.  I am concerned about the dryness issues of antihistamines with the sjogrens.

Heather, if you don't mind me asking, did you go to a mast cell specialist to get a diagnosis?  Know you are planning to go to one soon, but don't know if one goes regularly or for an initial evaluation.  

Perhaps I will post on the other threads about medications and proceedure of getting a diagnosis.

Marie

Hi Josie, thanks for the input.  I use otc eyedrops, aveeno skin creme, drink lots of water, nasal spray and try to lubricate my whole body.  I chose fuchsia as my nickname because if you are famaliar with a fuchsia flower care, that's me!  Have to keep moist, does not do well in heat, hot sun or cold.

Thanks for writing, Marie

Hi marie ,

The Aveeno may have alcohol in which is a problem for me ( I know I discounted it for some reason ) Aqueous cream is water cream , may be suitable . Do you ahve an alllergist yet ? I  think you would benifit from patch testing as I suspect many products will dry you / cause a reaction .

Several people here have meds made up in compounding pharmacies . This may be a way for you to get taylor made products

many hugs
Jose