Thanks Pam. I feel off now too..A tad dizzy and when I was just at the grocery store it felt like I was in a different world.
Pam, what were your symptoms when you first started the cromolyn? Did/do you have GI troubles? they are my main problem..
Jenny

Hi Jenny,

I haven't been on the forum for a while but saw your post and wanted to reply.  I had a VERY difficult time starting the cromolyn. Like so many of us, the meds we need can cause just as many reactions as the things that trigger us!!  Like Pam H. I was literally loosing 3/4 a pound a day and already had lost nearly 40 pounds....like her, I felt I had no choice.  So.....I did start with one vial a day and sipped it all day long.  I stayed on that dose for about a week if I remember.  

AS Joan always says, "slow and steady" makes for more progress. When we go too fast we many times regret it!

One thing I was wondering was...what are the symptoms you are having??  I had cardiac (tacky, palpitations) and dizziness, so if you have symptoms like that, you NEED to call your doctor and talk to him/her!    

Also, could you increase your H2 blocker?  Sometimes that will settle things down a bit and help your body accept new meds (I am speaking from my own experience and NOT from medical knowledge or information, OK?)

My other question is, ARE YOU REALLY CAREFUL IN WATCHING WHAT YOU EAT?  When your body has to '"cope" with foods that might cause degranulations and then you add medications that will "startle" those mast cells, you can actually cause your body to have to do DOUBLE DUTY and then you are a bigger mess than when you started!  (Again my experience and NOT medically based information).  But I think a common sense approach is really important.  I know I no longer can have the best of both worlds so to speak.  I know if I cheat, I pay.  It's as simple as that.

Please understand that I am not saying you won't get better, just saying to be really careful.  It may even mean mashing your food so your digestive track doesn't have to work so hard.  Does that make sense?

I hope somehow this helps....

I haven't been on here much so feel free to PM me if there is anything else I can help you with (certainly not becasue I have any answers...only a lot of issues with new meds)  

I wish you the best......and hope you get better!

Hugs, Lynda

p.s. The cromolyn also makes me VERY dizzy and that is why I drink it in small amounts and not all at once...I dilute it in 16 oz. of water and drink it throughout the day....I now am up to 3 vials some days and even 4 vials on other days!  I still can't eat any new foods, but I have gained 2 pounds in the last two months!!  YEA!

Jenny,
When I started the Cromolyn I literly was too sick to get out of bed.  It felt like my whole body was on edge.  Any little thing would set me off. Boom my throat was swelling, rash and itching.  I was extremely fatigued, Had big D all the time and I felt like I did at my worst before starting any meds.  I told my husband that I was going backwards...how could this be helping me if I felt too bad to go any where except bed.  My husband made dinner a few nights cause I could not. I'm not a doctor either, I just know I felt HORRIBLE and almost gave up.
I was reacting to my house, the store, anyone walking by etc.
I am lucky because my kids are grown and I did not have to be anywhere, so I could just sleep and rest in bed for several days.
I remember once I got out of bed I went to the store with my husband.  I couldn't handle it...I was reacting to cleaner Isle, even wearing a mask 2 isle away.  Then the cashier was cleaning the conveyer belt and I was trapped I couldn't go backwards and couldn't go forward, I thought I was going to into anaphlaxis right on isle 5!  I practaclly ran out of the store and felt very frustrated cause this was supposed to be helping me not making it worse....and I was worse.    I constantly have a red flush on my chest and neck...I think its cause i'm "leaking" and not where I need to be.
I am up to 6 vials a day and working toward 8, hopefully I will get stablized.  I also take ketotifen 2 times a day.
If you feel your reactions are life threating call your Doc!
Pam

Jenny,
Systemic masto. I have been having anaphilaxis for over a year.  I worked at a library.  I quit because I couldn't get through a 4 hour shift without itching and throat swelling.  The library is still a big trigger for me!  I stay far far away!
I have to admit I was hoping the Ketotifen and cromolyn would cure me...Ramona was funny she said "Hunny that's not happening."  My doc said that will not happen, it will just control your symptoms.  I still have to be very careful, I ate the wrong thing a couple of weeks ago and went into shock.  
I think I'm in the getting really tired of this sickness stage!
I just tell myself there are people that get worse diagnosis than me on a daily basis.
Chin up right!
Good luck,
Pam

Jenny I have noticed that if I don't have enough water to med solution it gives me the big D in like 4 mins!  So you might put half a vial in a water bottle and the other half in a different bottle  and drink them both slowly.
Good luck, I know how frustrating this can be.
Pam

Good luck on your gastrocrom taper up!  So glad you got to see Dr. Castells.

That's really interesting to know what Dr. Castells recommends.  Some people can't even start with an entire vial and either have to start with less or take it with a lot more water than a usual dose.

So true, we are all different.  Dye-free Benadryl liquigels have always worked for me as a rescue med.  Zyrtec made me feel like I was being punched in the chest.  I have been taking the Gastrocrom mixed in a healthy dose of water.  Water is pretty much all that I drink anyway.  

I've been in a flare since 5/18 - it was an effort traveling to Boston, my HR went to 140 on the plane.  I put my legs up against the wall above my head.  So I am trying to distinguish reactive symptoms from side effects of the Gastrocrom, which I started on 5/26.  So far the reactions seem to be to eating and stress.  My head clears after I drink the medication.