Mast Cell Disorders Forum - Medicines that have helped you

Riverwn

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Medicines that have helped you
01/04/11 at 16:10:10

(Archived from deborahw - original forum)
deborahw

It took me a while to find what meds really did the job with controlling my IA (Idiopathic Anaphylaxis) symptoms, but once I did, my life dramatically improved! Here is what I take:

7:00am
300 mg Zantac
180 mg Allegra

4:00pm
300 mg Zantac
10 mg Zyrtec

As needed:
10 mg Singulaire (controls itchiness!)
In the morning if I begin triggering heavily, I can take a Zyrtec. In the afternoon/evening, I can take an extra Allegra. I try to avoid taking extra meds if I can, though.

For Emergency:
10 mg Hydroxyzine
If Hydroxyzine doesn't work, I am probably going into fullblown anaphylaxis. So, at that point I would have to do an epi pen (never had to use one, knock on wood!)
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13 September 2008 09:40 PM

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Re: Medicines that have helped you
Reply #1 - 01/04/11 at 16:11:18

(Archived from sharon-nc - original forum)
sharon-nc

My Medications:

Every day without fail I take the following:

Klonopin .5 X 3 (for Neuro Symptoms, tremors, Restless legs)
Toprol 25 mg (I have Marfan's syndrome this one’s for Marfan’s)
Clarinex 5 mg
Estrodial 1mg (hormone replacement)
Zantac 75 mg X 2 (sometimes take up to 4 in a day awesome for hives)
Celexa 20 mg (keeps me from going insane from the symptoms)

These are medications that I keep on hand at all times, to add on in the event of, well something special, or if I need more antihistamine coverage - unfortunately when I am saying something special here, I am not talking about a formal wear occasion (sorry, needed a moment of silliness).
Axert - for migraines
Phenergan - treats nausea, great old fashioned antihistamine, a good one for before bed
Benedryl - never leave home without it
Hydroxizine - better than benedryl, but makes me to sleepy so can't take it if I am going to need to think
Zyrtec or Zyzal - pretty much the same - Zyzal is prescription Zyrtec is over the counter - both claim not to make you drowsy - both make me drowsy - I think Zyzal bothers me less, but both are good 24 hour antihistamine coverage and can be taken with Clarinex (Clarinex is same active drug as Claritin)
Epi pen - keep one with me at all times
Lidocaine gel - over the counter - for burning from peripheral neuropathy
Benedryl gel - for itching
Advil - for pain
Cetaphil cream - good for itching, mix with nasalcrom (over the counter nose spray for an excellent itch cream - seriously)
Tums - lots of tums it has calcium something my body needs anyway
Albuteral Inhaler – for airway compromise

I always carry an albuteral inhaler, epi pen and 2 bendryl with me no matter where I am going. Those items are always in my purse, along with my insurance card, my medications list, a “preferred ER treatment” protocol from my Doctor, and my medic alert card that lists my Doc’s and emergency contacts. I also wear either the medic alert dog tag style necklace or sport bracelet – my style of medic alert wear is purely a fashion choice - didn't make those choices based on any technical or medical reasons.

The medications list seems ever changing for me. I suspect that over the next couple of months there will be more changes as I am going through a fairly unstable phase.

Sharon in NC
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24 September 2008 05:07 PM

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Riverwn

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Re: Medicines that have helped you
Reply #2 - 01/04/11 at 16:12:25

(Archived from sharon-nc - original forum)
sharon-nc

Oh, and I guess I could have posted this under medications, but as my blood pressure tends to be quite low, and I can't get off the Toprol due to Marfan's issues - a most unpleasant situation here - Toprol even at the low dose I am taking, can lower blood pressure, but I am requiring it right now due to irregular heart rythyms and tachacardia related to Marfans - I got the two for one in the rare disease world.
I eat a high sodium diet, and drink lots of water and gatorade to try to keep my blood pressure at a reasonable level. I'll likely write more about this when I do some writing about foods and triggers, but I thought the high sodium thing might need to be included here.
Sharon in NC
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24 September 2008 05:15 PM

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Re: Medicines that have helped you
Reply #3 - 01/04/11 at 16:13:31

(Archived from bridgetmcgraw - original forum)
bridgetmcgraw

my (typical) day:
wake up: 200ml gastrocrom

a few hours later: 200ml gastrocrom

(depending on whether I eat or not I wait 4 hours between doses since 4 hours is around how long it takes for contents to move out of the stomach)

a few hours later 200ml of, you guessed it, gastrocrom

bedtime: 3mg klonopin, 200ml gastrocrom, 1mg ketotifen
--------------------------------
So I'm undermedicating, I know. I think I am doing it because I know the risk of tachyphylaxis with my meds, and I don't want to throw everything at the masto at once in fear that it will all start losing efficacy at the same time...this way I have things to fall back on.

In addition I take 10,000u of D3 2x a week and am trying to find a good calcium supplement. It looks like I am going to have to add B12 to this too now.

When needed I take Zantac (which I really should be taking daily, I know) and am going to start taking Remaron to ween me off of the Klonopin. I'm also going to be starting an asprin trial to see if I can get more energy.
25 September 2008 03:40 PM

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Re: Medicines that have helped you
Reply #4 - 01/04/11 at 16:14:28

(Archived from sharon-nc - original forum)
sharon-nc

Bridget,
Who really knows if you are undermedicating or not? I have been down to just Clarinex, Zantac 75mg, Toprol (for Marfan's), and Klonopin .5 mg at my healthiest. That was all I took for a couple of years during a really healthy phase. I'd sure love to get back to that, rid myself of the "old lady" pill box.
I am so happy to see you here!
Sharon
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25 September 2008 06:23 PM

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Re: Medicines that have helped you
Reply #5 - 01/04/11 at 16:15:37

(Archived from terry-wi - original forum)
terry-wi

SHARON,
INTERESTING TO KNOW YOUR TAKING TOPROL, I TAKE IT TOO... ARE YOUR DOCTOR CONSTANTLY TRYING TO TELL YOU IT WILL BLUNT THE RESPONCE OF YOUR EPI PEN IF YOU HAVE A REACTION? I HAVE HEARD IT FROM FOUR DIFFRENT DOC'S AND IT IS REALLY STARING TO SCARE ME. I ALSO KNOW WHEN THEY DID HAVE ME OFF OF IT FOR AWHILE I FEEL ABSOLUTLY HORRIBLE. MY TACHYCARDIA AND BP SYMPTOMS FROM THE MASTO AFFECT MY DAILY LIVING SO BAD I FEEL FAINT ALL THE TIME WITHOUT IT. I TAKE 12.5 MG AT BEDTIME.ANYONE ELSE ON TOPROL XL.
01 October 2008 09:34 AM

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Re: Medicines that have helped you
Reply #6 - 01/04/11 at 16:17:11

(Archived from sharon-nc - original forum)
sharon-nc

Terry,
Toprol - and all beta blockers, as I understand this, are not good partners with any of our masto meds. My Doc's tell me that toprol, will lessen the effectiveness of my epi pen. I have been on a beta blocker of some type since I was 16 due to Marfan's Syndrome - most Marfan's patients will be on a beta blocker most of their life - the short version of that story is that beta blockers are the reason that Marfan's patients can now expect to live a normal life span, instead of to around age 30 as was the life span at my original diagnosis. So going off beta blockers for any extended period for me is not an option. I have been masto since I was 33 and have been taking masto meds with some type of beta blocker since that time. Its not the ideal circumstance, but there really isn't another option for me.
I am getting good results from Epi, it might be better without the beta blocker, but in my situation, I can't take the chance to find out. I do know that their are times that I can use a children's epi and get the response that I need. So how badly is my epi situation being effected by the beta blocker - honestly we don't know.
I have to run out for a Doc appointment, I'll write more later.
Welcome aboard,
Sharon
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01 October 2008 11:26 AM

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Re: Medicines that have helped you
Reply #7 - 01/04/11 at 16:18:17

(Archived from terry-wi - original forum)
terry-wi

Sharon,
This is solely my opinon...but I really feel as though the beta blocker keeps me from having full anapholaxis, It seems to keep my blood pressure from falling and my heart from racing when I have an event.It makes my daily living alot more tolorable.

I have not had full anapholaxis since 2000. However I do have reactions to foods and meds. the typical reaction I have is flushing of the skin and a feeling of pressure in my head, and feeling very hot,always followed shortly by cramping and diarrhea. After this occurs I am very weak and need to lay down. At times it is followed by a migrane.Any type of ketchup will evoke this responce in 30 seconds or less.Also wine or any alcohol. The last real anapholaxis I had included and grand mall seizure and cardiac arrest.I would have been afraid to administer epi with that reaction because when rescue got to my house I had a heart rate of 180 bpm. Epi raises your heartrate by quite a bit I believe it would of killed me at that point.I was in the ambulance when my heart stopped. epi had not been administered.I was glad this time... that no one had prescribed it for me because I would have done what they said and had someone give me the shot.

Im not an expert at any rate but my cardiologist would not argue this with me.He thinks the dose is low enough it won't block the epi.I have been told to tell med staff I am on a beta blocker if I go to the emergency room ...as they can give a drug to get around the epi.

Maybe just maybe this beta blocker thing is another thing they can't explaine. Like how Gastrocrom works when it has such a short stay in the body. I can't explaine why it works and I don't know if it is safe I just know it helps me.Like I said my dose is only 12.5 mg once a day at bedtime.

Anyone else have something to share on the beta blocker issue? Anything by way of a negative? I really would like to have something substancial to help me make up my mind wheather I should discontinue it. any help is very much appreciated . Hugs, Terry

01 October 2008 01:33 PM

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Re: Medicines that have helped you
Reply #8 - 01/04/11 at 16:19:27

(Archived from sharon-nc - original forum)
sharon-nc

Terry,
Since the beta blocker does lower your heart rate - it does mine - you make an important point. I tried a couple of years ago to go off the beta blocker for just a short few days - I was sicker than my usual sick. My heart rate was totally out of control and my blood pressure was all over the place.
The general rule of thumb with Doc's is that beta blockers and Epi doesn't make for a good mix - as beta blockers lessen the effects of the epi. But, like I mentioned above I can often get all the relief I need from a shock with a children's epi.
Beta blockers don't block the epi, the only lessen its effects, but still most of the time I am using a children's epi - so for me I'm not sure how much less of an effect I'm getting and I am taking twice the amount as you are - still a very low dose.
You could consider a calcium channel blocker, they do most of the things that a beta blocker will do with out interfering with the effects of our other meds. I'd be reluctant to try that though, if you are getting good results from the beta blocker.
Another thing to consider is this, in masto land, if it is working for you, it may be just the thing to keep doing. Most often, I think I'd rather wrestle wild beasts of any sort than to try a new medication.
All the best to you,
Sharon
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01 October 2008 04:06 PM

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Re: Medicines that have helped you
Reply #9 - 01/04/11 at 16:20:32

(Archived from deborahw - original forum)
deborahw

Something that I would like to add is that it would be very helpful for you to always carry in your wallet an ER protocol instruction letter (from your doctor on his/her letterhead) that instructs the ER what your medical conditions are and what they should consider when treating you. I carry one from my doc, Dr. Cem Akin, and it is prominently displayed in a window in my wallet with "medical alert" written on it in bold letters so that someone would know to read it.

Also, the medic alert bracelets are really a good safeguard as well. I wear one 24/7.
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01 October 2008 05:56 PM

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Re: Medicines that have helped you
Reply #10 - 01/04/11 at 16:21:48

(Archived from terry-wi - original forum)
terry-wi

Thanks for your support Sharon,and your right on the money about new meds. I have a panic attack everytime it crosses my mind. That is something doctors will never understand. Once you swallow that pill and lose consciousness you can't take it back. Once again thank you for your kind words and understanding. Terry
02 October 2008 08:46 AM

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Re: Medicines that have helped you
Reply #11 - 01/04/11 at 16:22:51

(Archived from terry-wi - original forum)
terry-wi

Thanks Deborah,
I have one also but I used the one I found on line.( I believe on the masto society page) Including all my Doc's phone and fax numbers. If I am taken to the ER awake they are not treating me unless they contact Dr. Butterfield first.If I'm not awake my family and friends all know the rules. After working in ER for 4 years I have a good understanding how they operate and most of them are very accomidating to an informed pt.
Your suggestion is very very helpful and very important to everyone with Masto.
It has been my experience, that none of the doctors with the excepion of one,in my area have ever even heard the word mastocytosis much less treated it. They really a need a game plan for them to follow, they will beg you for one.It can be the diffrence between life and death. Thanks for the good info. Terry

02 October 2008 09:26 AM

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Re: Medicines that have helped you
Reply #12 - 01/04/11 at 16:24:03

(Archived from deborahw - original forum)
deborahw

My pleasure Terry. I have found that sometimes the ER docs (and paramedics) actually don't want to believe that the patient knows what he is talking about. One year I went into anaphylaxis in Disney World. We ha dto call an ambulance, and the paramedics were telling me that I was fine and just needed to go to sleep! Uugh! I don't have breathing issues usually when I am in anaphylaxis, and the paramedics didn't believe what was wrong with me. Of course, this was before I knew I had a mast cell disease, but I knew that something very dangerous was happening to me. Luckily for me, my brother's girlfriend (who was a brillian internal medicine doc from Rush Hospital in Chicago) was with me and she told the paramedics that they were wrong, that I was in serious trouble and needed to go to the hospital. It was actually due to her that I discovered I had a mast cell disease! After I was all better, she told me that what she observed made her think of a few rare diseases and she set me up with a doctor at Rush Hospital, which got the ball rolling on me figuring out what I had. I was quite lucky she was there, otherwise I might still be one of the misdiagnosed!
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02 October 2008 09:58 AM

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Riverwn FORUM MODERATOR/ADVISOR Offline Posts: 993 Gainesville, Florida	Re: Medicines that have helped you Reply #13 - 01/04/11 at 16:25:19 (Archived from terry-wi - original forum) terry-wi Great to be traveling with med staff hay? My brother in law is studing at Rush. He is in the Nurse Anestesia program Its a grate school. I travel with him and my sister who is an RN. Sure helps if there is excitement along the way. 06 October 2008 10:04 AM
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Re: Medicines that have helped you
Reply #14 - 01/04/11 at 16:26:24

(Archived from blessedbfo - original forum)
blessedbfo

Hi,
New here and not sure how to email directly and this is a location specific question for Deborah. Could you share your Rush doc contacts. I was dx'd recently by a Rush immunologist and am pending surgery and not sure which hospital in our area is best or what docs are best to line up in case of and I am strongly considering a trip to Dr. Akin as well so if you can tell me best way to communicate about Chicago area with you I would be so much appreciative--understatement Wink

TIA, Carol

13 October 2008 12:28 AM

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