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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Medicines >> Switched Cromolyn brands... http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1340502969 Message started by PamH on 06/23/12 at 14:56:09

Title: Switched Cromolyn brands...
Post by PamH on 06/23/12 at 14:56:09

Due to insuarance changes I have had to switch to the Cromolyn that you mix yourself. It is a lot cheaper and not that much work. I have noticed with the premixed cromolyn that if I drank it too fast or with not enough water I would have diarrehea. So with the new stuff I drank down really fast, kind of like a scientific study ( our lives are so interesting) No diarrehea...so now I don't know what to think. I don't know if it as strong and effective.
So all you out there mixing your Cromolyn, give me some imput please!!
Thanks, Pam

Title: Re: Switched Cromolyn brands...
Post by Joan on 06/23/12 at 17:13:34

Generics can, by law, vary up to 15% from the name brand products. If you can find a generic that's actually manufactured by the name brand mfg., that might help.

If Gastrocrom causes symptoms, sometimes it helps to mix it with extra water. It seems to work almost as well. Taking it with food is another way to get it down without symptoms.

Title: Re: Switched Cromolyn brands...
Post by PamH on 06/24/12 at 03:01:48

Joan,
I purchased the cromolyn from Clarks Pharmacy out of Washington state. That is also where I purchase my Ketotifen. The Ketotifen seems effective so maybe the Cromolyn will be as well. As for the manufacturer I don't know I will have to do some research.
Thanks Pam

Title: Re: Switched Cromolyn brands...
Post by larken on 07/18/12 at 19:56:57

Hi Pam,

At the recommendation of my mast cell specialist, I changed from brand name cromolyn to a pure form mixed at a compounding pharmacy. That step eliminated my side effects (increased dizziness, headaches, difficulty concentrating).

I think the new kind was also more effective, but who knows if it was because there were no impurities triggering me or if the new form was actually more potent. Probably a little of each.

Larken

Title: Re: Switched Cromolyn brands...
Post by NMLiz on 08/22/12 at 07:20:06

Pam,

Is there a brand name for the cromolyn that you mix yourself? We are having trouble getting the insurance to approve Gastocrom.

Thanks!

Liz

Title: Re: Switched Cromolyn brands...
Post by PamH on 08/22/12 at 09:40:33

Liz,
I get the Cromolyn sodium powder from Clarks Pharmacy in Bellview Washington.(Gastcrom is the namebrand, where cromolyn is the generic brand) I live in Indiana but they ship it at a resonable price! Clarks phone number is 1-800-480-3432
You just need to mail the script to them the first time.
Mark is the pharmacist he is very nice and talkative-he will tell you that he thinks the ketotifen works better(I think he likes the ketotifen better)...I just tell him I am on both and the each do different things for me. Ketotifen worked well for stomach pain, but the cromolyn has helped me tremendously!!
It comes in powder form and I mix 1/8 teaspoon in a little warm water until it dissolves and add more water. About 12 oz all together. I always use distilled water, although that is not nessary unless you make it up ahead of time. It lasts about a week with distilled water. Thats it- saves over a thousand dollars a month.
I was really worried when I switched that it wouldn't work, but I has done a great job and I would recommend it to everyone!
Let me know if you have any other questions!
Pam :)

Title: Re: Switched Cromolyn brands...
Post by NMLiz on 08/23/12 at 06:52:28

Thanks so much, Pam, for that information.

Sounds like we need to ask for a script for Ketotifen, too.

Liz

Title: Re: Switched Cromolyn brands...
Post by PamH on 08/23/12 at 12:34:55

Liz,
The ketotifen, did do wonders for the stomach pain and I liked it, however I went off it (very slowly) because it made me very hungry and I gained quite a bit of weight. I went from not being able to eat but a few things to my tummy not hurting mixed with being able to eat foods that were off limits before! It was a dieter nighmare!! It said one of the side effects was weight gain, and I did! It should warn that it make the kitchen cabinets look tastey!! ;D
So now I'm working on getting it off. It is hard after feeling deprived of foods for so long.
Good luck,
Pam

Title: Re: Switched Cromolyn brands...
Post by NMLiz on 08/24/12 at 15:46:55

Our insurance just came through with the Gastocrom. Hooray!

Title: Re: Switched Cromolyn brands...
Post by NMLiz on 08/24/12 at 15:56:43

Pam,

Debbie was just saying recently that she believes she will never get any illness that involves LOSING weight!

We both already have fibromyalgia, and the amitriptyline causes weight gain. So she may not even want to try the ketotifen (our kitchen cabinets might not be safe)!

Liz

Title: Re: Switched Cromolyn brands...
Post by larken on 08/26/12 at 00:10:17

I had the same problem with Ketotifen! Prowling for food all the time....

Title: Re: Switched Cromolyn brands...
Post by brigittegriffith on 08/26/12 at 05:19:32

Are cromolyn and ketoiten both mast cell stabilizers? What do they do? What is a mast cell stabilizer??

Title: Re: Switched Cromolyn brands...
Post by brigittegriffith on 08/26/12 at 05:20:38

Do all mast cell stabilizers cause weight gain?

Title: Re: Switched Cromolyn brands...
Post by Joan on 08/26/12 at 07:16:02

No. It's individual. I've actually been able to lose weight when I want to, and am on Gastrocrom. I think some of the gnawing feelings in my stomach were from irritation, not hunger, and Gastrocrom stopped those. Also, my blood sugar seems more stable, but I don't know if that's related or not.

Title: Re: Switched Cromolyn brands...
Post by larken on 08/26/12 at 08:03:46

Yes, it's very much an individual thing. Some people do, some don't. And, while Ketotifen made me ravenous, Gastrocrom (sodium cromolyn), the other main mast cell stabilizer, does not make me hungry. I have been able to gradually shed the weight I gained on Ketotifen (certainly not effortlessly, but at least it was more like my "normal" self).

Title: Re: Switched Cromolyn brands...
Post by PamH on 08/26/12 at 12:33:30

Brige...I agree with Larken, I am not starving on the cromolyn (gastcrom). The Ketotifen made me think about food constantly! I never had a full feeling. I told my husband there was no shut off valve! I could eat and eat and just never get the feeling of being full, very strange. I am also very salicylate sensitve so "healthy" snacking is hard me. That cuts out a lot of the fruits and veggies. I love to bake and this has been an issue in gaining weight. Baking things from scratch with butter and sugar...all those no no's!
Larken, I'm glad the weight came off for you! I have some hope!
I need to stop being Betty Crocker!
Pam

Title: Re: Switched Cromolyn brands...
Post by PamH on 08/26/12 at 12:54:05

Brige,
To answer your question...Mast cell stablizers work on calming down the mast cells. When we have a reaction the mast cells are degranulating or opening up and dumping histamines. When this happens to often or too much it triggers our reactions, this is why anti-histamins help. In Mastocytosis you make too many mast cells the all H-E double-hockey-sticks break loose when degranulation occurs! So mast cell stablizers are used to calm the mast cells down. So they stop over reacting. When you first start taking the cromolyn (gastrocrom), it stirs things up a bit.. I like to explain it like pouring water in a fish tank...makes a mess right away and takes awhile for the mess to clear. I actually felt worse when I started. Most people do. Took me about a week and half to feel better. It has really helped me! I was having anaphilaxis daily, this was horrible and on top of that it was exhausting, everytime it happened I needed to sleep for days. I spent from Sept-Feb in bed. I was started on the cromolyn in Feb. It does take several months to get the full benefit, but I can now leave my house. I can also eat more foods. It is not a miracle cure though it controls the disease not cures it. I cried when the doc told me that! I still have boundries and I must respect them!
All you people out there dealing with this longer if I got any of the technical stuff wrong or mixed up, feel free to speak up I'm not an expert and this relative new for me!
Pam

Title: Re: Switched Cromolyn brands...
Post by brigittegriffith on 08/26/12 at 14:00:33

Ahhhhhh, weight gain and medications!!!! Gotta love it! I am on so many darn psychiatric meds (which I probably don't need to be one since they've been treating my "panic attacks" and "pit of doom" in my belly which I believe are from mast cell activation) that I have put so much weight on. I just hate the idea of adding yet another med to add to my already growing body. But if it makes me feel better, so be it. Is that the general consensus, the ketoitifen makes people hungry and cromolyn not so much so? I am really anxious to get on a stabilizer as intuition tells me that because most often I am stuck in that "fight or flight" state (which is awful!) that my mast cells are going bonkers!

Title: Re: Switched Cromolyn brands...
Post by PamH on 08/26/12 at 18:16:19

Brig,
I wanted to tell you I have been dealing with depression for years and when I got sick I found it impossible to take my antidepressants. With the illness and the isolaton the depression seem to worsen, then I noticed a pattern. When I had an event that involved mast cells, the very next day I was a crying mess. I did some research and found that Doxipen is a an old antidepressant and antihistamine. Took forever to get in with the specialist. By the time I got in to talk to him about it I had found that will a full dose of the cromolyn I was stable and didn't have my crying days. If I dropped a dose there I went crying and yelling at everyone...very interesting. I saw the doc and he wrote me the script. I got it filled. Because of the gel caps I dumped the med out and tryed a little on my tongue. It felt like I was at he dentist. Made my tongue feel huge, maybe a little swollen I don't know, but that was enough for me. I put the script in the drawer and decided to wait on it. Now I not saying I'm never depressed and I'm not saying for you to go off your meds. I'm saying there is a connection between mast cells and depression/mood. Are you seeing a Mast cell specialist? Hopefully you can get on some meds that stablize you, then with the docs help decide what you need and what you dont.
Good luck!
Pam

Title: Re: Switched Cromolyn brands...
Post by larken on 08/26/12 at 22:15:59

I absolutely agree with Pam (and Pam, I think we are very similar in our "shade" of mast cell disorder). I was on meds for depression and anxiety for years and none helped much, but several of them made me a lot worse. I thought it was my depression progressing (which led to its own cycle of hopelessness), when in fact it was my reaction to the meds.

The turning point for me was finally piecing together all the mast cell symptoms and getting on the right MC stabilizers, H1 and H2 meds and avoiding my triggers (chocolate, salicylates, caffeine in any form, exercise, dairy are terrible for my mood). If I cheat, I feel symptoms for a day or two. I no longer need psych meds. I just need to manage my mast cells as best I can and I feel much better and more stable mentally.

You mentioned GI issues. Have you had the chance to do an elimination diet to find out if you have food triggers?

As Pam suggests, it is best to find someone who is a true expert in mast cell disorders and explain your symptoms to get on the right path. I wouldn't change your current routine without this guidance. (And my experience is that most doctors, even good psychiatrists, have no clue about mast cell disorders and the link with psychiatric symptoms.)

Title: Re: Switched Cromolyn brands...
Post by brigittegriffith on 08/27/12 at 03:57:22

Wow. I have thought this for some time now, all-the-while they've continued to add more psych meds. Pretty frustrating. Not to say that I don't need a little help in that department, I probably do since I have a tendency towards mild OCD, but I am certain that much of my "mental" issues are caused by triggers of the mast cell disorder. I hope that I can find a good specialist who will recognize these symptoms for what they really are, and hopefully taper off a couple of these meds. Luckily I am on a very low dose of everything (because I couldn't handle them at "therapeutic" doses. Hmmmm......that should tell them something right there. That these meds aren't for me!) speaking of meds, does anyone else out there seem to have adverse reactions to most meds? If it is sop posed to calm me down, it hypes me up, if it's supposed to make me sleep, I'm up all night!

Title: Re: Switched Cromolyn brands...
Post by PamH on 08/27/12 at 05:23:31

Have you looked under the thread of best mast cell doctors here on the forum? You could see who is closest to your area. Really unless the doctor has any knowledge of mast cells it is a waste of time and money.
I was having anaphilaxas at work and my co worker looked at my thoat she is a nurse, and told me to leave and go to immediate care center. I get there and the doctor tells me that I was just stressed out and needed to take meds to calm down. He was a jerk. He wouldn't listen to me at all...then in the middle of the visit we got a call that they had found mold in out house...which was one of the causes of my triggering. He had no clue. Interesting enough the week before I was in the same immediate care center and a nice woman nurse practitioner was taking care of me...she started asking good questions, before I left she told me to go home and look really really well, to find what was causing me to have these allergic reactions. On the way out of the jerk Dr visit I saw the nurse practitioner and and walked up and thanked her and told them that they had found mold in the house and I would have never looked for it, if it wasn't for her! (I said it right in front of jerk doctor!) Hehe that felt good! ;D
Anyway you need a doctor that has a clue!
Good luck,
Pam

Title: Re: Switched Cromolyn brands...
Post by larken on 08/27/12 at 06:28:09

Brigitte, check out this study below and consider taking it to your doctor (hopefully one of the mast cell specialists) if you think it applies to you. It explained perfectly what I had been experiencing for years.

http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1302732818

Many of us are very sensitive to meds and I used to experience what you describe as the kind of opposite effect (in doctor-speak, a "paradoxical reaction") all the time. I also had doctors up my dosage of psych meds and keep trying different combinations until I realized that the meds themselves were part of the problem, since they were triggering me. That said, please don't go off them cold turkey. Talk with a doctor first. I tried that and had a bad reaction once.

And, caffeine tends to make me OCD in a big way!

Title: Re: Switched Cromolyn brands...
Post by brigittegriffith on 08/27/12 at 07:21:46

Thanks Pam and Larken! YES! I can relate to that article! So the good news is that UC Davis is in network for me and because I have a PPO plan I am able to self refer!!! Yeah!!!! So I already got the ball rolling with Dr. Rosemary Hallett. I saw that Ramona had seen her. I hoping that she takes me and that she is well versed in mast cell disorders. She is under the "allergy" department at Davis. Has anyone else heard of her??? I am so excited!

Title: Re: Switched Cromolyn brands...
Post by larken on 08/27/12 at 09:27:37

Great, I'm glad it may help answer some questions or put you on a new path. All the best for next steps. And remember, trust yourself even if you don't find the right doctor at first. I went through several before I found one who really understood. The best sign was that he knew more than I did about my symptoms and mast cell activation. I had to print many websites and studies to make my case along the way. It has paid off.

You may want to start a new post under the "Mast Cell Disorder Doctors" to reach a wider audience of forum members to see about Dr. Hallett.

Let us know how it goes! My fingers are crossed for you.

Title: Re: Switched Cromolyn brands...
Post by brigittegriffith on 08/27/12 at 11:01:49

So I got an appointment with Dr. Rosemary with UC Davis! On one hand I'm very excited, on the other I'm a little apprehensive as she does not have mast cell disorder as one of her specialties. But she does list urticaria and angioedema. I just hope she knows enough to possibly test me further, just from my symptoms, I feel Luke I must have MSAS or masto, unless autoimmune urticaria can have similar symptoms (does anyone know the answer to that?) All I know is that I feel very sick most of the time and I need to feel better for both me and my family. I just hope Dr. Hallett is the answer!

Title: Re: Switched Cromolyn brands...
Post by brigittegriffith on 08/27/12 at 11:58:39

Hmmmmm.....I've wondered about the meds, particularly Zoloft, making me feel worse. Ugh! Hopefully this new doctor will have something to say. I'm crossing my fingers, but I'm not seeing any information in her that makes me feel like "she's the one" lol! But insurance is covering it, and it's gotta be better than what I've got!

Title: Re: Switched Cromolyn brands...
Post by larken on 08/27/12 at 12:15:55

Yes, autoimmune urticaria can have similar symptoms because it can trigger secondary mast cell activation (different from chronic, primary mast cell disorders), so it is important to find someone who can think systematically to determine which it is.

I was actually diagnosed with this at one point because my most prominent symptoms were urticaria and angioedema. It was so easy for the doctors to SEE, unlike my GI issues, cognitive and mood problems, aching body, headaches, dizziness, near-fainting, exercise anaphylaxis and a million food triggers. All of those were invisible and tests came back negative early on, so it seemed like some doctors doubted that they existed.

I explained to the doctors that most of my symptoms started long before the urticaria and angioedema and they basically said, "We can't help you with those complaints, we can only treat what we see. You should go see a psychiatrist (ortho, rheumatologist, etc) for your other problems." I explained that I felt strongly that they were all related in some systematic way because they flared together. But, it was difficult for them to think outside of their specialty. The reality is, as you know, mast cell issues are just not not on the radar of most doctors and they treat what they know.

I even requested a specific mast cell med from an allergist who was willing to treat me for the urticaria to see if it would help my whole range of symptoms and he said, "No, I've never used that medication with patients before so I won't prescribe it." Argh! What if I am one in a million and this is the only medication that could help me? Does he just use the same 10 medications on people his whole career?!

Anyway, as I mentioned I finally found the doctor who understood how it all connected. Now that I am on the proper treatment for MCAS, my urticaria and angioedema are largely under control. Not surprisingly, I still have all my other mast cell symptoms, though they are much better, too.

Anyway, I would recommend taking the following to a first appointment to help your doctor in case she is not as familiar with MCs:

- a simple list of mast cell disorder symptoms with the ones checked off that you have experienced and the approximate dates that various symptoms began

- a list of tests that are normally prescribed for mast cell disorders

- the diagnostic criteria for mastocytosis and MCAS

- the study that I shared with you earlier on cognitive and mood symptoms

I have also developed a one-page list of triggers (food, alcohol, exercise, cold, etc) and usually shared that with doctors after they had the chance to review the list of common symptoms.

I always started with a new doctor by saying, "I am not a doctor and don't presume to know more than you about medical issues, but this is what my research has turned up and why I think that this is what I am experiencing. I am looking for a doctor who either knows about mast cell disorders and has treated them before, or is willing to think together with me in a systematic way, since this is a rare disorder and not many doctors, even, know much about it."

Hopefully your doctor can follow the diagnostic criteria to rule things out one by one and you can get to the root of the problem soon!

Good luck!!

Title: Re: Switched Cromolyn brands...
Post by brigittegriffith on 08/27/12 at 12:47:08

Thank you for your support Pam! I truly appreciate it! Dr. Hallett name is on an article called "mastocytosis: the great masquerader" so hope this means she is aware of mast cell disease 😊

Title: Re: Switched Cromolyn brands...
Post by redbird on 08/27/12 at 12:53:35

is this article online that can be read
if so please either email me or post it...would like to read it
redbird

Title: Re: Switched Cromolyn brands...
Post by PamH on 08/27/12 at 17:44:29

http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1302732818

Title: Re: Switched Cromolyn brands...
Post by PamH on 08/27/12 at 18:00:44

Larken,
When you went to the doc. and asked for a med and he said no. What was it you asked for? I did the same thing. I asked for ketotifen and my doctor said that he had only prescribed it once and wasn't sure if he wanted to use it. So each time I went in I would reference it and he finally did prescribe it. After reading some people's stuggles with their docs I find myself lucky that he knows about mast cells. When I first went to him with anaphilaxis...he said it is possible that you have mastocytosis but it is very rare so we will look at other things first, so slowly (almost a year, seemed too slow to me) he ruled everything out. He started me on the cromolyn and I impoved so much, my tryptase is slightly elevated but I think everything else is normal. I haven't had the bone marrow test because I don't see the point, since the treatment is the same and my insurace stinks. The doc was thinking if I had the bmb and it came back negitive that the insurance may not pay for my cromolyn. At the time the insurance was paying all but $15 a month! So, I take all the precautions of a masto person. The doctor called it mastocytosis but I don't know for sure since I havent had the bone marrow test. He said that I'm basically allegic to the world, and I think he is right. I even have trouble in his office, I tell him every time I go in there that there is mold somewhere in the building. My moldar goes off! Anyway have you been labled?
Also I pm'ed you with a question.
Pam :)

Title: Re: Switched Cromolyn brands...
Post by larken on 08/28/12 at 11:17:46

Pam, I asked for either one of the mast cell stabilizers, Ketotifen or sodium cromolyn (called Nalcrom here).

I have an official diagnosis of MCAS from a leading mast cell specialist.

Title: Re: Switched Cromolyn brands...
Post by PepperPOTS on 02/07/13 at 11:41:02

I just switched from a compounded cromolyn sodium that had an extended release additive to it, some filler, and was in capsules to plain cromolyn sodium powder that I mix with water. I switched because it seemed like I might have been reacting to something in the capsules.

I was pretty surprised to find that a month of the cromolyn sodium powder will only cost me about $60 at my local pharmacy. I think I read on here that most people have reported their costs being around $150/mo. Also, my water doesn't taste rusty like it did when I used the ampules in the past. Now, these changes are AWESOME, don't get me wrong. The thing is, due to these two things, I'm somewhat concerned that my new pharmacist hasn't given me the correct dose to take.

I reread a few posts from this thread and saw that PamH mixes 1/8th tsp into water, but I'm unsure how many times a day. I just checked, and my scoop that came with my cromolyn sodium powder is 1/8th tsp. I am supposed to take 1/8th tsp mixed in water twice a day. That is supposed to be equivalent to 400mg twice a day (for a total of 800mg a day). Does that sound right?

Thanks a ton to PamH or anyone who can help reassure me! :)

Title: Re: Switched Cromolyn brands...
Post by PamH on 02/07/13 at 13:39:24

Hi pepperpots!
I just want to clarify I mix 1/8 teaspoon in more than 8oz(probably 12-16oz) 4times a day. Before breakfast, lunch, dinner and before bedtime. I get mine from Clarks pharmacy out of Washington state. It cost around $115 and $5 for shipping.
Maybe you were prescribed a lower dose??

Let me know if you have any other questions!!

Title: Re: Switched Cromolyn brands...
Post by PepperPOTS on 02/07/13 at 14:00:39

Pam, thanks so much for your quick reply! Are you taking 800mg a day total? Each 1/8 tsp would equal 200mg cromolyn sodium that way.

If so, then it would make sense that mine is the same and I would need to be taking two scoops twice a day. (I take mine twice a day rather than four times.) If I did get prescribed or filled with the wrong amount and I need to get that cleared up tomorrow.

Title: Re: Switched Cromolyn brands...
Post by PepperPOTS on 02/07/13 at 15:28:03

OK, my fuzzy brain made a mistake on my scoop size. I just rechecked several times and my scoop is equivalent to 1/4 tsp. So, if 1/4 tsp does equal 400 mg cromolyn sodium, as the label on my tub shows, then I am getting 800 mg by taking two scoops a day.

But, I'm still wondering two things. Why doesn't my water doesn't taste rusty? Pam, do you notice a decrease in the bad taste with the powder vs the ampules? The other question I have is - Why is the price for my powder so low? Pam, is your $115 +$5 shipping price for a one month supply?

Title: Re: Switched Cromolyn brands...
Post by Ladybug2 on 05/24/15 at 02:01:01

PamH wrote on 08/23/12 at 12:34:55:

Hello Pam,

I have been taking 1mg Ketotefin twice a day for a few years to help treat MCAS. It's been doing great. However, I still suffer from brain fog and fatigue. I don't know if I should take something else for that. But you mentioned you were taking both Ketotefin and cromolyn for a while and I think you weaned off Ketotefin? How are you doing? Did you or do you suffer from any brain fog or fatigue?

I am trying to figure out if I should try doing the same thing. :D

Thanks so much! ~Ladybug