I switched to "bid" for exactly that reason... I kept forgetting my lunch and dinnertime doses.  I figured it was better to remember two doses consistently than four doses semi-consistently!  I'm using the powder form now (cromolyn sodium), taking 200mg in the morning and before bed.  It works for me

Heather

I do the same as Starflower and for the same reasons!  If I know I'm going out to dinner, sometimes I'll take it before we leave.

Dr. Theo said that it works best taken 5 minutes before eating.  It stays in the system for 1-3 hours, but the effects can last longer.

My GI mast cell doctor said to take it with or without food, one or two vials at a time, any time of day, just to get it in.

Thanks so much for your replies, ladies! I've been taking 3 ampules BID for nearly two weeks now. And, of course I have more questions. They never end, do they?

Here's the backstory: The first week on Gastrocrom, I took 1/2 ampule BID. The following week, I took 1 ampule BID. After about 10 or so days, I started taking 2 ampules BID. Almost two weeks ago, I started 3 ampules BID. I'm trying to get up to the max dose of 4 ampules BID.

Starting Gastrocrom, upping to 1 ampule BID, and upping to 2 ampules BID, my symptoms generally followed a fairly predictable pattern. Exciting, right? Predictability is so enjoyable when you can get it! The pattern was that I'd feel awful for the first five days of starting a new dose, with each day getting a little less bad. On roughly the sixth day of the new dose, I'd start feeling MUCH better and have increased functionality to the point where I felt almost normal at times. The improvements increased with each dose increase, as well. That is, until...

When I started 3 ampules BID, I expected a similar pattern. Hasn't turned out that way. I did feel crappy for the first five days, but the level of crappiness didn't really decrease with each day on the new dose. And, on the sixth day, I did feel better, but it wasn't as marked of an improvement as the previous times. And, since then, I have been extra reactive to triggers. I'm talking a ridiculous increase in reactivity. For example, three days ago, my son threw a Lego and it hit my hand. Not hard enough to hurt, just enough to feel it. I developed a series of raised, red spots that haven't decreased since. Typically, I would have no reaction to that. That's just one small example. And, I haven't felt good. I feel awful.

When I started Gastrocrom, my doc hinted that some of his pts are unable to tolerate the max dose of the med. Is this something that is common? I am waiting on the nurse to return my call as to where to go from here. Should I power through this and go to the max dose? Or, will that totally mess me up? Should I drop back to the 2 ampules BID?

Thank you for reading and I'd love to hear any thoughts you might have.

Pam, thanks for your reply. First, let me apologize for my poorly worded post with all the questions about how to continue with my dosing. Those are a few of the questions I have swirling through my mind at all times right now and I just sort of vomited them out in my post without thinking. I guess I'm just curious about others' experiences to see similar/different they are from mine, rather than seeking non-medical expert advice.

Yes, caring for my son has been a real challenge since starting Gastrocrom. However, during my previous dose increases, he's spent the week with his grandparents. That has made this med trial much more doable. He's here now because I thought I'd be adjusted to this latest increase.

As far as having a choice in trying Gastrocrom, like you, I feel like I don't have a choice. I have been seriously debilitated for 2.5 years now and have missed out on the majority of my life (as well as my husband's and son's lives). So far, I'm a leaker rather than a shocker, so I don't have anaphylaxis on my plate. But, I am extremely limited in what I can do and am ready to try anything that may improve my situation.

I'm all about powering through this increased symptom period if it means that I could have better managed symptoms at some point. I just don't know what to expect, given that my previous dose increases resulted in much different outcomes. Maybe I'm paying too much attention to those previous outcomes; maybe this new response to the med doesn't indicate that it isn't working at this dose. I don't know what to think.

My nurse is going to check with my doc and call me tomorrow with his thoughts. At this point, I'm kinda hoping he'll just say to bump up to the max dose, deal with it, and see what happens.

Just being able to type all this stuff out right now is helping to some extent.

Also, Pam, I just want to thank you again so much for your posts on salicylates and histamines. Avoiding those has really helped decrease my number of triggers.

Pepper,

Don't be discouraged!  You're doing great, but might need to tweak the timing of the Gastrocrom a bit.  I suspect you might be taking too much at one time now.
 
My GI doctor would say to take 2 ampules, 4 times a day, not 4 ampules, twice a day.  He said to take it before each meal and then once at bedtime.  He never had me add more than one extra ampule/day when I was building up.

Dr. Theoharides said it's best taken about 5 minutes before a meal.  I like the nighttime dose on an empty stomach with about 3/4 c. water.  It helps me feel better in the morning.

My doc also says to take them with or without food, however you can get them down.  If you need to take more water with them to avoid side effects, that's okay, too.

The dosing is very individual.  Play around with it until you find you reach the maximum you can tolerate.  I found that I could tolerate more, but it was making me constipated, so I cut back on my H2 and backed down to 2 ampules, twice a day.  Others have luck with different amounts and timing.  You can run this by your doctor, but be sure you're doing it in a slow enough way that your body accepts the medicine.

Another way to do it is to take 1 ampule every few hours.  Then you can add one each week or two until you get up to your maximum needed.  At that point, you could take them closer together in time.

Remember, in this disease, there are many paths to stability...one for each of us!  They're not straight lines either!  When I'm flaring, I have to adjust when I take the Gastrocrom, space them out more, add extra water, and stay close to a bathroom, just in case  .

Joan, thank you for your info on spacing out the Gastrocrom. Maybe that will help. I'll run that by my nurse today when she calls, too. Thank you for your support, too, and for saying that I'm "doing great." I almost started crying when I read that (thanks to my overactive MC) and really appreciate your kind words right now.

I am constantly amazed at how individuals can respond so differently to the same meds. Thanks, Joan and Pam, for sharing both your experiences!

Somewhat relatedly, Pam, I keep trying to remember to ask you about the powdered cromolyn. I recently switched from name brand Gastrocrom to generic cromolyn sodium ampules to save money. Do you save even more money by using the powdered form? About how much? Where can you get it and how did you go about that? I've never heard of the powdered form except in a couple of posts here.

Pam, thanks so much for this info! I agree that getting stabilized is a first priority, for sure. If and when that happens, I am going to check into compounding and pricing. Sounds like it could potentially save us some money, too!

On another positive note, I am feeling much better today! Only minimal symptoms and I've been able to do a few things here and there around the house. I've spoken with my nurse and am going to increase to the max dosage on Thursday. My son is going to stay with his grandparents for about two weeks starting on Thursday, so that should give me a good amount of time to adjust to the increase. I'm also planning to take my doses 2 ampules QID to see if that helps minimize reactions.

Thanks so much, again, for your help, ladies!