Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> Immunotherapy http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1339951702 Message started by Julie T on 06/17/12 at 05:48:22

Title: Immunotherapy
Post by Julie T on 06/17/12 at 05:48:22

For my daughter allergy skin test landed her in ER with brain symptoms. She could not tolerate immunotherapy sublingual drops. The last attempt was LDA immunotherapy which within 6 wks landed her in hospital with POTS diagnosis at discharge.

I would like to find out if MCAS patients cannot tolerate immunotherapy. to me any testing or desensitization triggers massive mast cell degranulation. Is that is what is happening?

I haven't find any warnings on avoiding immunotherapy. any advice appreciated.

thanks

Title: Re: Immunotherapy
Post by Buster on 06/17/12 at 07:30:34

Julie,

I had an allergist try to desensitize me to a calcium channel blocker using a rapid drug desensitization protocol. It didn't work. I tried the same protocol twice (on my own) to try to desensitize myself to hydrocortisone. That did not work, either.

Buster

Title: Re: Immunotherapy
Post by peter on 06/17/12 at 11:20:29

The world health organization is very clear that any treatment coursing mast cell activation

Should be STOPED as PROLONGED MCA can courses damage

A tryptase test could show MCA

good ?

Title: Re: Immunotherapy
Post by Julie T on 06/17/12 at 12:46:08

thanks peter, we just tested tryptase waiting results...

Title: Re: Immunotherapy
Post by Joan on 06/17/12 at 12:51:35

I'll add that anything that causes mast cell activation should be stopped or continued only if necessary to save a life and then only with pre-medications to counteract any degranulation symptoms.

Title: Re: Immunotherapy
Post by Julie T on 06/17/12 at 15:29:42

thanks! we did stop but took a long time to figure mcad...allergists just don't know about it...

this probably explains why she started crying within 20 mins of skin scratch tests for foods...it is so odd to see her get so emotional as her skin reacted...it is all making sense now...

there is a strong brain relation to these mast cells.

Title: Re: Immunotherapy
Post by Joan on 06/17/12 at 17:57:06

Did your daughter's allergist order RAST testing for foods or recommend an elimination diet trial? Those are easy ways to figure out food allergies. Environmental allergens are harder.

I take immunotherapy shots, even though I have SM. I don't recommend it for anyone else, but if I pre-medicate with an antihistamine, I do okay on the shots. In my case the benefit outweighs the risk, but I'm an adult. I know other adults who have MCAS who also benefit from allergy shots, too. Children are a whole different ballgame.

Title: Re: Immunotherapy
Post by Julie T on 06/18/12 at 04:37:38

Actually the ENT (many of the specialists we have seen) ordered RAST. she has been tested twice with RAST. IgE over 2000, allergic to most foods exempt meat and eggs. She is gluten and casein free, soy free, corn and potato free, nut free. we have worked with nutritional specialist to figure a lot of this out...allergist so far have been no help to us:(