Mast Cell Disorders Forum

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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Medicines >> Cromolyn sodium http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1334599922 Message started by jmayk8 on 04/16/12 at 07:12:02

Title: Cromolyn sodium
Post by jmayk8 on 04/16/12 at 07:12:02

Dr Hamilton called me in a script for Cromolyn sodium and I just picked it up. He told me to continue my zantac and whatever else H1s in addition to the Cromolyn sodium.
Im not sure if I should start off with the full dose-taking 2 vials 4xs a day? I have been reading a little on the forum and it looks like some people had to work themselves up to that dose?
Does anyone have any tips on taking this med? or if it is even worth it-has it helped?
Sorry for all the questions!
Thanks,
Jenny

Title: Re: Cromolyn sodium
Post by Anaphylaxing on 04/16/12 at 09:08:12

Lots of people work up to it; eg starting with one vial in lots of water to make sure they don't react.

I started it all at once out of desperation.

Title: Re: Cromolyn sodium
Post by Julie M. on 04/16/12 at 13:20:38

Started with the whole dose when I was on it. I didn't think it did a thing for me so I discontinued using it. In terms of my GI issues, Entocort did a much better job getting my symptoms under control. Having said that, medication is very individualized and what works for one MC patient may not for another.

Here's hoping you have a good response to it!

Julie

Title: Re: Cromolyn sodium
Post by jmayk8 on 04/16/12 at 13:22:57

Thanks Julie.
I actually took one vial this afternoon and noticed some numbness and tingling in my left leg and foot. Would that be a common side effect?

Title: Re: Cromolyn sodium
Post by Julie M. on 04/16/12 at 15:30:26

Jenny,

Here's a list of the side effects that seems pretty comprehensive:

http://healthlibrary.unchealthcare.org/RelatedItems/121,1616

Based on the list it seems tingling and numbness can be a side effect. Keep an eye on it and let Dr. H know if it gets worse.

Title: Re: Cromolyn sodium
Post by jmayk8 on 04/16/12 at 15:34:31

Great, thanks! I just emailed him to just let him know and see what he says...

Title: Re: Cromolyn sodium
Post by Anaphylaxing on 04/16/12 at 17:33:31

I get numbness and tingling randomly and sometimes as part of a reaction/ For me it's often a delayed phenomenon so it's sometimes hard to know what to attribute it to

I may well be reacting to some of my meds as I never introduced them cautiously

Title: Re: Cromolyn sodium
Post by Julie M. on 04/17/12 at 00:28:34

Good point Ana. I find the same thing...numbness and tingling in hands/feet; caused by who knows what? A trigger response, meds, something completely unrelated to mast cells??????

It does get very difficult to figure out what is the cause behind so many varied symptoms.

What a crazy, crazy disorder!!!

Julie

Title: Re: Cromolyn sodium
Post by goldielove on 04/17/12 at 14:51:50

DO not start it full dose right away please call Dr. Castells office she has you start it a totally different way she actually will fax you a schedule her nurse did for me it was totally diff then what my dr told me it was something like one vial a day for a week, I can't remember the whole schedule but call her office and ask for the nurse they will fax it too yu they were very helpful although I ended up unable too take it horrible diarrhea that cont even with one vial as soon as I stopped it the diarrhea stopped I am on ketofin now and have had no reaction so far but I am only on .5mg twice a day, I actually think the only problem with this med is it keeps me awake while everyone else said it made them sleepy go figure my body is always doing the opposite but then again I am not sure if its that or just me I have not slept well since getting this disease.

Title: Re: Cromolyn sodium
Post by jmayk8 on 04/18/12 at 02:17:07

Goldie,
thanks for the info. you mentioned you were on ketofin, where did you have you rx filled? it's not in the US right?
Thanks, Jenny

Title: Re: Cromolyn sodium
Post by PamH on 04/18/12 at 09:29:18

I started with one vial at each meal....after about a week I went to the regular dose. I felt really bad for about 8 days then one day I woke up and felt great!! It has made a real difference in my life. It is not a cure but it does make a difference.
Good luck,
Pam :)

Title: Re: Cromolyn sodium
Post by goldielove on 04/18/12 at 11:39:25

I am on Ketotifin and I did get it filled at a pharmacy by me if u google compounding pharmacy's and have a script they will usually fill it for you I have two by me willing too fill it, I use .5 mg twice a day but today had too stop , its the story of my life I usually will tolerate the med for a couple of days then boom all hell hits, today and yesterday I had the worse headache and nausea, and forget about sleeping when I take it and also i got very bad chills all side effects of this drug from what I read most of the people getting relief from this drug are the ones with UP unless I am wrong all I know is I was not in pain (head) until I started this med for me it is not a good drug. I also live in the US, I also got a bottle of the syrup in Panama when i was visiting lol for 8 dollars for a hugh bottel and here for one month of the medication I paid 80 dollars too bad it made me so sick.

Title: Re: Cromolyn sodium
Post by Buster on 04/19/12 at 05:43:51

goldielove wrote on 04/18/12 at 11:39:25:

I also have a problem tolerating medications. Are you able to tolerate any meds?

Title: Re: Cromolyn sodium
Post by jmayk8 on 04/22/12 at 03:01:12

I have been on the cromolyn for a little over a week and my GI symptoms seem to be getting worse. And I am still only on 1 to sometimes 2 vials a day. Is this a sign that it wont work for me? Or do you think I will start seeing improvement in a few more weeks?

Title: Re: Cromolyn sodium
Post by PamH on 04/22/12 at 05:11:10

jmayk8,
I would hang in there. I felt I had no choice, I'm a shocker and a leaker...I could not mess around with shocking contantly. This is the only drug for masto, other than Ketotifen, which I'm already on. When I started I was super sensitive to everything and contantly having the big D. It took a week and a half or so to notice a positive change. Good luck it should get better!
Pam :)

Title: Re: Cromolyn sodium
Post by jmayk8 on 04/22/12 at 08:44:53

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

Title: Re: Cromolyn sodium
Post by jmayk8 on 04/22/12 at 09:02:44

Also, I forgot to mention, a little over an hour or more after I take it, I get a pain in my rib cage and a red 'heat rash' along with the GI symptoms..

Title: Re: Cromolyn sodium
Post by lynda51 on 04/22/12 at 09:12:15

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!

Title: Re: Cromolyn sodium
Post by jmayk8 on 04/22/12 at 09:38:53

Thanks so much Lynda, that makes me feel so much better!
I am very careful in what I eat...I have celiac and microscopic colitis so I know food def has something to do with all my GI symptoms.
Thanks again!
Jenny

Title: Re: Cromolyn sodium
Post by PamH on 04/22/12 at 10:14:17

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

Title: Re: Cromolyn sodium
Post by jmayk8 on 04/22/12 at 11:20:11

Pam,
wow. I hope you get better quickly. Your symptoms sound much worse than mine and I am so sorry you are dealing with this. I felt the same way this morning-how is this med supposed to be making me feel better when it's making me feel worse?!
Which are you dx with, systemic masto, activation disorder..??

Title: Re: Cromolyn sodium
Post by PamH on 04/22/12 at 15:36:36

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 :)

Title: Re: Cromolyn sodium
Post by jmayk8 on 04/22/12 at 23:41:06

Yeah, I have my good days and then the 'why me' days. It's tough...I put 1 vial in a water bottle today and I am going to drink it slowly all day and see what happens/how I feel.

Title: Re: Cromolyn sodium
Post by PamH on 04/23/12 at 04:31:03

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 :)

Title: Re: Cromolyn sodium
Post by Avonlea on 06/03/12 at 09:41:50

I wanted to respond about the tapering up schedule. I saw Dr. Castells two weeks ago. She is fabulous. It was such a relief to see a doctor who could look at me and my test results and tell me I had MCAS. AND tell me that she knew I was having no quality of life and would try to help me.

She had me start an 8 week taper up schedule on cromolyn sodium. We'll see how far I get. Week one was one vial before breakfast each day. Week two is one vial before breakfast and one before lunch. Week 3 will be one vial before each meal. Week 4 will add a 4th vial before bed. Weeks 5-8 will increase to 2 vials, following this same pattern. In theory you will max out at 2 vials 4 times per day.

I've had rather strange ear, neck and throat pressure. But that started a few days - off and on- before I started the cromolyn. So it could be flying and/or allergies. I learned in Boston that I am allergic to grasses, mold, mugwort and ragweed, and it is grass season.

Title: Re: Cromolyn sodium
Post by Joan on 06/03/12 at 13:23:08

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.

Title: Re: Cromolyn sodium
Post by goldielove on 06/03/12 at 14:27:41

Good Luck with this medication I could not tolerate it no matter what I did, I had the big D and cramps had too stop it had an even worse reaction too Ketifin got very sick on this thhe worst headache and inability too sleep UGH, I am now sticking too just my histamine blockers everyone is different for me atarax has really helped me and the other meds seem too get too me I just can't take them they make my symptoms worse and I guess we all are different.

Title: Re: Cromolyn sodium
Post by Avonlea on 06/03/12 at 23:28:40

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.