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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Medicines >> Reason for H2 blockers WITH PPI's http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1330052137 Message started by kimtg68 on 02/23/12 at 14:55:37

Title: Reason for H2 blockers WITH PPI's
Post by kimtg68 on 02/23/12 at 14:55:37

For those new to the forum here is a brief on my situation: I was diagnosed with MCAS by one of the up and coming researchers, Dr. Afrin. I LOVE this doctor! I value his opinion and respect his experience. I do have a local doctor that is 'supposed' to be working with Dr. Afrin to treat me but I have a strong suspicion he is not doing so. That was pretty much confirmed by the response I got when I email Dr. Afrin with questions as to my current medication regiment and my path forward.
At any rate, I was unaware of exactly WHY we take H2 blockers. I assumed it was for the GI problems and increased acid production. Maybe in a long about way that may be true but my acid production is SO off the charts. I wake up at night choking on vomit!!!! My pooh (sorry for being explicit) is golden rod yellow. So my local doc put me on Prilosec and took me off the Zantec. I'm still choking at night and still have this permanant lump in my throat and my pooh's are WORSE! So Dr. Afrin was kind enough to write me back. The poor man is so inundated with similar email requestes but he was caring enough to respond. So the following is one of the answers he shared with me which explains WHY we take Zantec or Pepcid, in other words an H2 blocker:
" I commonly see that MCAS patients have their H2 blocker (in your case,
Zantac) reduced in frequency once a proton pump inhibitor (in your case,
Prilosec) is added. This is in the misguided belief that the H2 blocker
is being given solely to address the receptors on the gastric parietal
cells which cause those cells to produce acid. While all H2 blockers do
have this effect, the principal reason an H2 blocker is given to an MCAS
patient is not to block the gastric parietal cell H2 receptors but
rather to block the mast cell H2 receptors. Histamine released by mast
cells causes a wide array of effects throughout the body, including
"looping back" to dock with the mast cell's own H1 and H2 receptors
which, in many forms of MCAS, stimulates further mast cell activation,
and thus both H1 and H2 blockers (e.g., Claritin and Zantac) are needed
to interfere with this loop-back mechanism. Thus, I recommend that you
boost your Zantac 150 mg back to twice daily. "
I hope in sharing this information that it will help someone else out there. I can assure you I will be starting back on my H2 Blocker, Zantec, right away.
Good luck my fellow Masto Friends!

Kim

Title: Re: Reason for H2 blockers WITH PPI's
Post by Anaphylaxing on 02/23/12 at 15:03:03

Great info! SO KIND of you to share it with us

hope you get some relief 8-)

Title: Re: Reason for H2 blockers WITH PPI's
Post by kimtg68 on 02/23/12 at 15:25:45

Thanks Ana! I've not been to active on the forum for months! Mostly just LIFE stuff but I'm struggling health wise. I wanted to share this info because like myself I know many others are dealing with docs that just do not quite get this disease and how to treat it. I hope it's helpfull to many!!!!

Title: Re: Reason for H2 blockers WITH PPI's
Post by Anaphylaxing on 02/23/12 at 18:29:17

Oh no so sorry to hear that you're struggling, me too, but there are baby steps of forward progress. We can be struggle buddies :)

I'm so glad you're getting to see one of the experts

Title: Re: Reason for H2 blockers WITH PPI's
Post by Lisa on 02/26/12 at 02:17:42

Hi Kim!!

Nice to have you back!! Sorry you're still struggling with doctors!! Oh how I hate THE DOCTOR GRIND! >:(

It's a shame your local doctor doesn't want to cooperate. FIND ANOTHER! I know it's not always that easy and after a while it's possible to run out of options, but until you do, keep pushing.

I would also try doing a bit of experimentation with your meds too. You might want to consider upping your zantac to 300mg 2x/day. This is what many of us take and I'm sure if you ask Dr. Afrin what he thinks, since the 150mg may not be enough, he may say go for it. I honestly think that if you were to do another colonoscope, this time with your doctor being even more careful in investigating, it might be possible that there are some MC aggregates there. I was shocked when one of my kids showed that he has a focal point of them in his intestines. His tryptase is only 2.6ng!!!! lower than my own!

According to my doctor, the place where we have the most activity is where those mast cells are gathered. The problem we MCAS patients face is that we can be either clonal or non-clonal which means that there is indeed a defect on the MC, however, the suspicion is that depending upon the defect, you may have the aggregates or they may only be activated. They still don't know yet. So, this may be why there can be an increase in normal MCs or there can be focal area of aggregated MCs. It explains a great deal!

Regardless of which it is, it would still be a good idea to have another colonoscope to see what the picture is. If you can find it, then, that leads to further discussion as to what treatment options are then open.

Hope this helps! And good to have you back! Missed you!

Lisa

Title: Re: Reason for H2 blockers WITH PPI's
Post by kimtg68 on 02/26/12 at 08:17:33

Hey thanks Lisa. Good to be back. I actually had emailed Afrin asking his opinion on the current meds which ARE NOT working and his thoughts for my path forward. He did tell me to up my Zantac along with some other advice. Seems I was taking too much Claritan, not enough Zantac, I needed to space out my Toradol amd Doxipen so I'm taking half the dose morning and half at night opposed to one large dose once a day. I'm concerned that these mast cells are attacking my soft tissue/connective tissue. I injure myself somehow doing nothing. So right now my biggest complaints (but not my only) would be the bone/joint pain and injury's and the waking up at night choking on vomit. Local doc is sending me to a rheumatologist and allergist. Afrin said it was good to see the rheumy to rule out any other autoimmune issues since mast cell disorders often go hand and hand with autoimmune issues. He failed to comment on the allergist. He also replied with corrections for me to make on my meds and suggestions for the path forward. He truly is a caring and wonderful doctor.
I'm off my meds right now for 5 days. Requested by the allergist at Vanderbilt that I'm going to see on Thursday. Misery is my companion right now. Going to lay down now.

Title: Re: Reason for H2 blockers WITH PPI's
Post by Anaphylaxing on 02/26/12 at 09:52:10

Great advice Lisa!

Why off your meds? Most of the mast cell docs don't approve of doing this; If I were you I'd have a low threshold to restart them

Title: Re: Reason for H2 blockers WITH PPI's
Post by kimtg68 on 02/26/12 at 12:58:47

I will be ok restarting them. I did this back in Sept when I saw Dr Afrin. I am going for allergy testing. Thats why they asked me to go off the meds. Why I'm being sent to do this I am not clear on and my doctors nurse doesn't really know either. I have heard of allergy testing prior to a diagnosis but not after. I'm going to have to go off the meds again in March because Dr Afrin wants to do more testing on me.

Title: Re: Reason for H2 blockers WITH PPI's
Post by Anaphylaxing on 02/26/12 at 14:51:12

Eeek! Good luck! You're braver than me. Glad a mast cell doc is involved!

Hopefully they give telling results

I'm just trying to sort out triggers on my own and have had serum IgE testing

who knows which route is safer! Either could have a lot of issues I guess :)

Good luck 8-)

Title: Re: Reason for H2 blockers WITH PPI's
Post by Joan on 02/26/12 at 19:51:00

I've heard that Dr. Castells says not to go off meds for allergy testing. I just had that done and only skipped my one dose the morning of the tests. I only reacted to intra-dermals, and I think the reactions were less than if I'd been off meds longer, but going off seemed too dangerous to me.

Be careful! About 20% of MC patients also have true allergies, the same as the general population. If that's the case, they might suggest starting immunotherapy. I can't imagine

I may be asking something you've already answered, but why aren't you on Zyrtec, Xyzal, or Allegra? Did you have trouble with them? Claritin is such a mild drug for how bad your symptoms are. Have you tried hydroxyzine or Benadryl in between your other doses? Unless you've already tried those, I'd ask Dr. Afrin about them. You might get better relief.

Title: Re: Reason for H2 blockers WITH PPI's
Post by kimtg68 on 02/26/12 at 22:07:22

Thanks for your reply Joan. I already know I have an allergy to dust. I had the blood test done 4 years ago. I'm not sure what to expect but I'm a bit nervous. I'm thinking of bringing the emergency protocall with me just in case.
As for mymeds, i was taking Allegra and Zyrtec before I saw Dr Afrin. The only side effect I experienced was being tired. Dr Afrin prefers Claritan and Pepcid because they carry less risks. We've been tweaking and readjusting my meds ever since. I've gone along with it because I felt he knows better then I do. Although my local doc took over and made a mess of some of my meds. But Afrin was kind enough to straighten things out.
You know, now that you mention Dr Castels theory of not going off meds for testing, I think I remember that conversation on here before.
Thanks again Joan.

Title: Re: Reason for H2 blockers WITH PPI's
Post by Joan on 02/27/12 at 06:34:30

I have to strongly suggest that the doctor who's scheduled to do the allergy testing call Dr. Castells before you do it, even if it means postponing the tests. She's an expert regarding testing MC patients, and you can trust her opinion about how to keep safe. The emergency protocol is for lowering your reactivity before you're exposed to triggers. If you had a systemic reaction, you'd have to be treated as you would for anaphylaxis. I can't remember if you're a shocker or not, but at least checking with Dr. Castells will give you more peace of mind. Five days is a long time for a MC patient to be off meds. You don't want a big setback either.

What risks does Dr. Afrin want to avoid with Zyrtec and Allegra? Is it something specific to your conditions? The reason I ask is that Claritin is such a mild medicine, that many MC patients don't get better using it, and antihistamines are very safe for the vast majority of people.

Have you done the environmental measures for dust allergy, like bed and pillow encasings? I have a list of things to do if you don't already know about it.

Title: Re: Reason for H2 blockers WITH PPI's
Post by kimtg68 on 02/27/12 at 07:23:04

So you think the doctor that has asked me to go off the meds should contact Dr. Castells before the testing takes place? Would it be possible to ask you or someone on here for Dr. Castells contact info that I can pass along to this allergist at Vanderbilt and request he contact her? You've got my attention and now I'm concerned. I'm NOT a shocker. As in I've never fully passed out. I do get light headed, naucious and my bp drops seriously low. You know, I was wondering how accurate an allergy test would be considering that even when my skin it scratched I get welts (on my back) or raised rash (on my arms).
Dr Afrin's thoughts on the Claritin is in general and in no way specific to my reactions. I have none (except extreme tiredness). This will be a question I plan to discuss with him in person when I go to see him in a couple weeks.
As for the dust allergy I know I have, I had at one time practiced environmental measures for it. I even went so far as to purchase a Rainbow Vacuum because of the demonstration I saw which included statistics on dust allergies. I used to suffer upper respiratory infections several times a year. But I have not had one now in 2 1/2 years. So since my allergy doesn't really bother me much anymore, I just use common every day sense and I do fine with it. I try to keep the dust down. I have air purifier's and, you betcha, I still have my Rainbo Vacuum ;D
Joan, I truly thank you for bringing this allergy testing/no meds situation to my attention.

Title: Re: Reason for H2 blockers WITH PPI's
Post by kimtg68 on 02/27/12 at 10:25:47

STOP THE BUS!!!! So I spoke with the doctor's nurse at Vanderbilt and she clarified that this specialist IS NOT doing an allergy test on me and by no means should I stop my medicine for this appt. I pulled out the card I got in the mail telling me to stop my medicine and guess what????? I goofed up! That card was from a specialist in Birmingham that was going to do allergy testing on me but after reviewing my records he contacted my local oncologist to cancel my appt and refer me to a Thoracic/Pulmonary Specialist at Vanderbilt instead. SO I am BACK ON MY MEDS! Horray!!!!!!! I can't believe I had that all messed up. We had a death in the family out of state and when we returned I had all kinds of appointment reminders in the mail I didn't even know I was supposed to have. It's a long story. But the bottom line is I am NOT seeing the allergist therefore I am THANKFULLY back on my meds.
I'm sorry I wasted your time Joan. But I do appreciate you wisdom. Thanks!

Title: Re: Reason for H2 blockers WITH PPI's
Post by Joan on 02/27/12 at 13:21:00

Hi Kim,

Don't give it a thought. If this does come up at some point, you'll know what to do. Might want to put encasings on your pillow(s), mattress, and box springs just to see. Also, if they can take it, use hot water to launder your sheets. They might still be "filling your bucket." Allergies make me very tired. I'll PM Dr. Castells' email anyway, in case you ever need it. That's all I have, but I think you can Google her at Brigham and Womens' Hospital in Boston.

I'm interested to know why Dr. Afrin thinks other antihistamines can be dangerous and why. Would love to know after your visit.

Happy to hear you're not having testing now. Still want to answer your question about super sensitive skin, in case anyone else wonders. When they test, they first do a positive and negative control. The first is histamine, to see if your skin reacts to it. If it doesn't, then your tests won't show anything. The second is saline. If your skin reacts to plain saline, you won't get accurate results on the skin tests. It'll show more reactivity than is probably really happening. Then they'd probably just do RAST tests by drawing blood, although those aren't generally as accurate for environmental allergens.

Title: Re: Reason for H2 blockers WITH PPI's
Post by kimtg68 on 02/27/12 at 13:45:55

Very good information Joan. I will most definitely share Dr Afrins reasonings behind the antihistamines.
RAST testing!! I had that done about 4 years ago by a pulmonary specialist and that showed an allergy to dust mites. I couldn't remember the name associated with that test:)

Title: Re: Reason for H2 blockers WITH PPI's
Post by kimtg68 on 03/01/12 at 05:57:43

ANOTHER long story I will try to shorten. So the allergist who requested I go off my meds ended up being an already canceled appt which I had confused with the one I DID have coming up. So, the appt that I was supposed to have was today but they called me first thing this morning to tell me that I was scheduled with the WRONG doctor!!! Can you believe this? So they offered to set up the correct appt with the doctor I do need to see who is (can you guess?) an allergist! Oh geez! Yesterday I saw the rheumatologist because, as Dr Afrin suggested, with my symptoms and issues it would be a good idea to rule out other auto immune disorders that may go hand in hand with a mast cell disorder. Well the Rheumatologist agreed to run some blood work but felt I needed to see an allergist/immunologist. They made the appointment for me. I got THAT call too this morning and they want me off my meds for testing!
Thankfully I obtained Dr. Castels email and JUST NOW sent her an email requesting a confirmation and explanation for me to share with the allergist why it is NOT a good idea to go off antihistamines.
I got SO frustrated this morning that I was building up a good cry. However, I pulled my big girl britches up and kept repeating to myself "It's my health and I am in control." It helped me in that I didn't cry. Not sure I'm 100% convinced :-/ I'm in control but I'm trying to learn more so I can make better decisions.
Thanks to everyone here for all the advice and help!
Wish me luck!

Title: Re: Reason for H2 blockers WITH PPI's
Post by hb36 on 03/01/12 at 09:43:45

Joan, I am a patient of Dr. Afrin as well. He also recommended that I try Claritin and Pepcid first. If I remember correctly it was because he said (of the drugs in those classes) Claritin and Pepcid have the least number of drug interactions/reactions. I didn't have much success with them so we switched to Allegra and Zantac which have been better for me and he said that was totally fine. I think he starts with the Claritin and Pepcid and then moves on to try others if they don't help. As we all know, what works for one person, doesn't always work for another.

Kim, I hope you start feeling better and get all of these appointments straightened out!

Title: Re: Reason for H2 blockers WITH PPI's
Post by Joan on 03/01/12 at 15:30:35

Thanks for posting that. I'd wondered why he starts with Claritin, and I can see what he's thinking. Some doctors are minimalists about meds, while some prefer to start with a stronger dose and then back off when possible, in order to get things quickly under control.

This is a good thing for patients to know. Be sure to let your doctor know if you don't have an acceptable response to the doses or meds you're taking! There's a lot of leeway in dosing antihistamines, so ask for what you need!

Title: Re: Reason for H2 blockers WITH PPI's
Post by kimtg68 on 03/07/12 at 15:53:09

Although this is no longer an issue for me, I had concerns about being asked to go off my antihistamines for allergy testing (which I'm not having done now). So I emailed Dr. Castels inquiring about her thoughts about going off antihistamines for this. Her response was " There is no contraindication to do skin testing on patients with Mastocytosis or MCAS. Being 5 days off anti-histamines is OK.." So apparently, if she had at one time, she no longers seems to think it's a no-no.
I expect this is going to start much talk about pro's and/or con's of going off anti-histamines. I just wanted to share what her response was. IN MY PERSONAL OPINION I would think that since she says it's ok that it really means that we can make that decision for ourselves as some have pretty serious symptoms where others may not.

Title: Re: Reason for H2 blockers WITH PPI's
Post by lynda51 on 03/17/12 at 12:02:02

Hi ladies,

I wanted to find the answer Dr. Afrin gave to me about the reason he selects the Pepcid and Claritan over the other meds. This is the way his email was worded, "I usually recommend famotidine and loratadine because pharmacologists have figured out it has fewer risks for unwanted interactions with other drugs".

I am not sure if he suggests this for all of his patients (or just patients like myself who happen to be on 11 other medications besides meds for mast cell).

Any one else have any other thoughts about this?

I agree with hb36, if the Claritan and Pepcid don't work, he is very open to trying ANY other mast cell meds that could help.

It is interesting what you said Joan....about Pepcid not being as "strong" as other H2 blockers. ???Maybe that's why I am not getting better...I keep thinking it's because of not having an H1 blocker.

Thanks girls....good discussion. Welcome back Kim. We missed you!

Hugs, Lynda

Title: Re: Reason for H2 blockers WITH PPI's
Post by lynda51 on 03/17/12 at 12:04:33

Kim,

I can't remember...have you tried cromolyn yet? I know we are all different, but that has helped me a lot!

Lynda

Title: Re: Reason for H2 blockers WITH PPI's
Post by Joan on 03/17/12 at 12:31:25

Hi Lynda,

Not having an H1 blocker could be one reason. Are there any you haven't tried yet?

Normal strength famotidine (10-20 mg.) might not be enough for some people. I think most MC people would say that Zantac works better.

I've personally gone back to 20 mg. famotidine, twice/day, to see if the Zantac was causing some other problems, and I feel better now doing that, although there were a few days of adjustment. My goal is to heal my GI enough so I can just take H1s. Is that possible? Don't know yet! I do know that I've gone through periods when it was better and some when it was worse, so there must be a way to keep it in the "better" category. I'm re-evaluating my diet, too. Have been thinking about doing some sensitivity testing, but insurance won't pay and it's expensive.

I wonder if what Dr. Castells meant was that skin testing alone won't cause masto reactions. Still, I know if I go off H1s and H2s for more than a day, I'll start the downward spiral. I can't imagine she would think it would be okay to put oneself at risk by going off meds.

Title: Re: Reason for H2 blockers WITH PPI's
Post by kimtg68 on 06/27/12 at 07:48:03

SO SO sorry for the late reply. Life got busy and I failed to see the last few comments.
Lynda, thanks for the welcome back. No I have not yet tried cromolyn. Long story however the new doctor I am going to see at Vanderbilt had mentioned either gastrcom or cromolyn. I see him next week so we will see what he wants to do.
As for Afrins choice of h1, h2 meds, he also started me on the same ones and the only other medication I was on at the time was Toprol XL for tachycardia. My thought is that he understands how mast cells can affect so many different areas of our bodies that even if one at the time is not on a buffet of medicines, there 'may' come a point where other meds may have to be added in order to control symptoms.

Hate to cut it short but I need to go.