Mast Cell Treatment

[misstraci]

Forgive me for I know this gets posted frequently.

What H1 and H2 combinations do you take that show improvements in your mast cell disorders?

for example Benadryl and Zantac? Is this correct and is it ok to take at the same time or do you take one in the morning and one in the evening?

Thanks

[issie]

Allegra and Pepcid with Nasal crom has been the best combination for me ----I tried Claritin and Zantac - that didn't work as well.

Issie

[misstraci]

thanks Issie!

[DoozlyGirl]

Misstraci,

I've found that I can only tolerate OTC and prescription meds without dyes, sulfites, and flavorings. I highly suggest avoiding those as they are known degranulators. Generics tend to have the cheaper ingredients, so folks often tolerate the brand and not the genrics.

H1 - Zyrtec, Allegra, and Claritin . Zyrtec works faster than allegra, but allegra lasts longer. Claritin is a good first step drug, since it holds weakest actions. Liquid and readi tab formulations are filled with dyes, flavorings, aspartame, and other known degranulators. Liquid gel Zyrtec that works well for me as a breakthrough H1. Hydroxyzine is the parent of zyrtec, is available through prescription in the US and crosses the BBB, so is well known to help with cognitive issues.

H2 - Zantac and Pepcid are recommended over Tagamet, since Tagamet inhibits DAO, which is essential to breaking down histamine, as well as has many known drug interactions with many of the meds a mast cell may take. Zantac is considered the stronger H2, so many with sensitivity to drugs will start out on Pepcid, then may switch to Zantac later.

Emergency - Benedryl is a great emergency med, as it in not only a H1, but also anti emetic, (GI issues), decent sleep med, and holds other properties. It is not generally recommended to take Benedryl on a daily basis, as it is common to gain tolerance to meds, expecially antihistamines, and there is really nothing better to abort various mechansims leading to anaphylaxis. Dye free liquid gel Benedryl and walgreens dye free liquid gel diphenhydramine both contain the same inactive ingredients and I tolerate both.

I have yet to find a generic zyrtec and zantac without the known degranulatrs, which trigger anaphylaxis in me.

The mast cell experts have shared that it is best to take a H1 at the same time as a H2 to stop both cascades once histamine is released. The rest depends on trial and error and how well you tolerate each of those meds. It is wise ot only make one change in your meds at a time and hold that pattern for a few days, so you can tell if you tolerate that med or not.

Best wishes in sorting out your meds,

Lyn

[issie]

I agree with Lyn ---I reserve Benadryl for a bad attack - as it helps the allergies - but, I know it will cause tremors and more tachy and heart rhythm issues with me.

I have also found that taking the allergy meds together work better for me and I take them at night - cause they make me sleepy. I have been told that I may need to up them with time. But, for now - my doc has me on only one of each a day.

Oh, and I found that Claritin caused me to have worse brain fog - but, didn't make me sleepy. But, it also didn't work as well as the Allegra (which doesn't cause brain fog).

Issie

[Christy_D]

Post messed up. see next post.

[Christy_D]

Arrgh...I typed a post and it disappeared before I posted it.

My son takes 10 mg claritan and 40 mg pepcid, both two times per day. Neither seem to be helping or hurting. He also takes doxepin which antihistamine in it. He has also been on full dose of gastrocrom for a month now and no help there either.

We see Dr Afrin in the morning and I'm sure some of this may change.

[Chaos]

Just an FYI....according to my allergist Zyrtec (and Xyzal) are derivatives of hydroxazine which is one of the older antihistamines. He was saying that an increased appetite may be a side-effect of these meds so if you are gaining weight you don't want to be gaining, you might consider this.

ChristyD- Good luck with your son! Hope Dr. Afrin has some new ideas. I've been doing the mayo cocktail of allegra, gastrocrom, pepcid and aspirin for 5 weeks but haven't really seen any appreciable consistent improvement. Seems like the allegra hasn't even been enough to deal with just my normal seasonal allergies though so maybe it's not the right combo or high enough doses.

[issie]

Chaos,

I think we aren't taking enough. I called and told Janie I felt that I needed to up my Allegra and he doesn't want me to right now. But, I think I'm having breakthrough that starts around 2:30-3:00. I've been in contact with another MCAS person in the UK and I guess most people are on at least 2 H1's per day - sometimes more. They are also adding Singular to some. So, I'm thinking it's not enough. Some are also adding in addition to this doxepin (which I did horrible with).

Issie

[DoozlyGirl]

Issie,

I'm on H1/H2 combo 3 times a day and take Singulair.

Lyn

[misstraci]

Lyn, Issie, and Chaos, thank you so much for such detailed and informative information! I really appreciate it.

ChristyD, sorry your first message messed up, I hate it when that happens. I hope your sons appointment goes well today, you'll have to let us know. I feel like someone else on the board also has an appt this morning with Dr. Afrin but I forget who. Good luck!

[issie]

Issie,

I'm on H1/H2 combo 3 times a day and take Singulair.

Lyn

Lyn, does taking that much seem to be the answer? Can you tell a big difference or just some difference?

Issie

[Angela]

I take an allegra and pepcid in the a.m. and then again at night. Last week I was short on cash and took both down to one per day and noticed a difference....more potsy feeling. But although not dx'd with mast cell (havn't pursued dx's, just mentioned it to my neuro) I found that taking the antihistamines definitely helped tons of symptoms. Even when I started with zyrtec/zantac and then tried claratin for awhile I was in better shape then before taking antihists.

[jpjd59]

Arrgh...I typed a post and it disappeared before I posted it.

My son takes 10 mg claritan and 40 mg pepcid, both two times per day. Neither seem to be helping or hurting. He also takes doxepin which antihistamine in it. He has also been on full dose of gastrocrom for a month now and no help there either.

We see Dr Afrin in the morning and I'm sure some of this may change.

ChristyD:

Hope your son's appointment with Dr Afrin goes well today!!!

Pam

[issie]

Okay, so I'm upping the Allegra and Pepcid to 1/2 of ea. in the am. Going slow and low.

Issie

[Christy_D]

The appointment went well this morning. We are stopping the gastrocrom since it didn't help. He gave us 4 new prescriptions to try one at a time. The first two are focusing on the nausea, Emend and Marinol, if Emend doesn't help. He also gave us a script for Singulair because it seems to help with MCAS. If that doesn't help we will move on to ketotifen(sp?). It is a mast cell stablizer that we will have to get at a compounding pharmacy. It doesn't have FDA approval in US.

We were early to our appt. and got taken right away and Dr Afrin was able to spend more time with us. I'll keep you all posted on the outcome of each medication.

Christy

[Chaos]

Chaos,

I think we aren't taking enough. I called and told Janie I felt that I needed to up my Allegra and he doesn't want me to right now. But, I think I'm having breakthrough that starts around 2:30-3:00. I've been in contact with another MCAS person in the UK and I guess most people are on at least 2 H1's per day - sometimes more. They are also adding Singular to some. So, I'm thinking it's not enough. Some are also adding in addition to this doxepin (which I did horrible with).

Issie

Interesting! I have been playing with adding some Singulair into the mix, on my own, in the last couple weeks. In the past, my local allergist had recommended that I take Singulair and Allegra together as they both work on different mediators and he felt they would be beneficial together. Yesterday I was having such a hard time with being short of breath (not asthma related, just POTSie feeling) that I took it again, and was better this morning so I think I'm going to keep it up for a bit. The mix I've been on so far hasn't been enough to make a difference.

Also think that since I was already on Zantac twice a day from my GI doc that dropping back to pepcid once a day with the Mayo cocktail hasn't been enough either. Definitely think the dosing needs some individual tweaking.

ChristyD- Thanks for the update and the info. So glad you have Dr. Afrin on your side and keeping you supplied with new ideas to try. It's encouraging to know that if one group of meds doesn't work, that there are other options that might. Have been getting discouraged that the "one size fit all cocktail" wasn't working but it's helpful to see your posts and remember that there are lots of options out there. Sure hope your son finds some relief soon!

Misstraci- Keep us posted on how you're doing with your med search!

[DoozlyGirl]

If that doesn't help we will move on to ketotifen(sp?). It is a mast cell stablizer that we will have to get at a compounding pharmacy. It doesn't have FDA approval in US.

We were early to our appt. and got taken right away and Dr Afrin was able to spend more time with us. I'll keep you all posted on the outcome of each medication.

Christy

Christy, I'm not sure if you saw this from the TMS website, scroll down form the front page. The FDA is allowing mast cell patients access to ketotifen through a the manufacturer in the UK.

Lyn

13-AUG-2012 - Zaditen® (Ketotifen)

Zaditen® (Ketotifen)

With much anticipation we are happy to announce that with the diligence of Kelli Foster our FDA/NORD representative patients with mast cell disorders can now order Ketotifen directly from the manufacturer, please read highlights below and ways to order!!!

BACKGROUND

For the last nine+ months, I have been tirelessly working to identify a safe, reliable and consistent source of Zaditen® (Ketotifen) for my daughter and myself. We have found that Zaditen® helps manage our Mastocytosis and Mast Cell Activation Disorder (MCAD) symptoms. Zaditen® is not available in the US. The only alternative we found was to have it compounded at a pharmacy. Due to personal preferences and concerns, I continued my investigation into procuring the brand name Zaditen® medication and expanded my search internationally. After a number of phone calls and emails between Novartis, Food and Drug Administration (FDA), and various international pharmaceutical companies, I was finally able to trace who "owned" Zaditen® (Ketotifen).

HIGHLIGHTS

Novartis transferred the license for Zaditen® (Ketotifen) Tablets 1mg and Elixir 1 mg/5 ml to Defiante Farmaceutica, S.A. (Defiante) in 2010.

Since 2010 Defiante Farmaceutica, S.A. holds the authorization to commercialize Zaditen® (Ketotifen) Tablets 1mg and Elixir 1 mg/5 ml in the United Kingdom (UK).

For commercial and logistic issues, Defiante Farmaceutica, S.A. signed a distribution agreement with Swedish Orphan Biovitrum Ltd. (SOBI).

In general, the distribution agreement states that Defiante supplies SOBI with Zaditen® and SOBI handles medication storage, supply, marketing and distribution activities within the UK.

Zaditen® (Ketotifen) 1mg tablets are manufactured with exactly the same quality, safety and efficacy profile as the Novartis supplied product. Defiante maintained the same composition, manufacturing method and specifications as Novartis.

The FDA has been very supportive and has guided me through the procedures that should be followed regarding the Personal Use Importation Policy of unavailable medications for patients under the care of a physician. Please keep in mind that the FDA does not promote the use of these products for off-label use but do understand that there are circumstances when a physician may believe under the practice of medicine that the products could be of benefit in certain patients. Nor does the FDA promote the use of a medication unapproved in the U.S. as this would be.

After many conversations with the FDA and because of the newly formed relationships between Defiante, SOBI and Masters Pharmaceuticals Ltd (a global specialty healthcare company with a heritage of over 25 years working with Manufacturers, Hospitals, Pharmacists, Governments and individual patients with the singular objective of 'Improving lives through patient access') brand name Zaditen® (Ketotifen) is available for Mastocytosis and Mast Cell Activation Disorder patients with a valid prescription through Personal Use Importation.

HOW TO ORDER

Secure a signed prescription for brand name Zaditen® (Ketotifen) from your physician.

Contact Julie at Masters Pharmaceuticals Ltd (1-800-969-1152) for product and shipping costs.

Fax the signed prescription for Zaditen® 1mg tablets to Masters Pharmaceuticals Ltd (1-800-969-1153 - Attention: Julie).

Provide appropriate payment (i.e. credit card, etc...) for prescription order.

WHAT TO EXPECT

Once Masters Pharmaceuticals Ltd has received your prescription and payment, they will prepare your prescription for International shipping.

NOTE: All international medication shipments are subject to the FDA Personal Use Importation Policy (see attachment) and US Customs Inspections. You should receive your three (3) month supply of brand name Zaditen® within approximately 10 business days.

The brand name Zaditen® (medication manufactured by Defiante Farmaceutica, S.A. distributed by Swedish Orphan Biovitrum Ltd. (SOBI))

Submitted By: TMS Webmaster | 13-AUG-2012 | Take me back to the top

[DoozlyGirl]

Lyn, does taking that much seem to be the answer? Can you tell a big difference or just some difference?

Issie

Issie,

I did notice a HUGE improvement when I went from H1/H2 twice a day (upon wakening and at bedtime with singulair at bedtime with H1/H2) and again with breakthrough symptoms. My local treating doc suggested taking my H1/H2 combo three times a day and within 2 days I felt normal at times, the first time in years I felt so well. I would still degranulate, but could head off the reactions quickly. This lasted nearly a month and I really thought I was gaining ground!! Then the weather changed and the mold count went through the roof, all during my last cycle. I didn't change my diet, my meds, my products, or my routine at all. I am finally climbing out of that flare.

Lyn

[DoozlyGirl]

Interesting! I have been playing with adding some Singulair into the mix, on my own, in the last couple weeks. In the past, my local allergist had recommended that I take Singulair and Allegra together as they both work on different mediators and he felt they would be beneficial together. Yesterday I was having such a hard time with being short of breath (not asthma related, just POTSie feeling) that I took it again, and was better this morning so I think I'm going to keep it up for a bit. The mix I've been on so far hasn't been enough to make a difference.

Chaos,

Allegra and Zyrtec blocks the H1 histamine recepter, Zantac and pepcid blocks the H2 recpetor. There are H3 and H4 receptors, but meds aren't available to block those two pathways, so those can lead to the pathway to produce prostaglandins and leukotrienes and the Singluair blocks leukotrienes, stopping the riptide from escalating deeper into anaphylaxis. Singluair is known to target chest tightness, breathing issues and asthma like reactions. I take Singulair every night and again when triggered by an inhalent like perfume, incense, gasoline, cigarette smoke, etc. I used to consistently anaphylaxis from any of those things, and now Singuair in addition to my emergency meds stops my reactions cold within minutes.

Best wishes sorting out your triggers and meds,

Lyn

[issie]

I added the 1/2 of ea. this morning - it made me feel tired and it still didn't seem to be enough. I wonder if the Singular is the next step. Chaos, get Dr. G to give you some and then I'll call and get some too. It is generic now - too.

Lyn, what does the ketofin seem to do for you?

Issie

[DoozlyGirl]

Issie,

I'm not on ketotifien yet. I've had ot fight my insurance company and get my locl doc to step up for me to get Singulair this month. Just bought quercetin and plan to trial that this week.

Lyn

[issie]

Since my hubby is on Singular -he was able to stay on the name Brand when the generic came out. I don't know if the generic will work the same. (Sometimes they don't.) But, we opted to stay with what worked for him.

I have been on quercetin for so long. I'm not sure I'm on enough - but, take it none-the-less - it seems to help my veins. Hope you find improvement.

Issie