Mast Cell Disorders Forum - Out of control!

gnbailey

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Out of control!
04/24/11 at 11:02:54

WEll, I have now had to use my epi - pen twice in three days! I wanted to see if you all had any advice to lend. The ER doc sent me home on my regular meds:
AM:
Zyrtec 10mg
Zantac 300mg
Singulair 10mg

PM:
Zantac 30mg
Zyrtec 10mg

Rescue med:
Benadryl
Epi-pen

HE added 5 day taper of methylpredisone. I was going to be driving back to Texas but thought that a 2 day trip would not be a smart thing to do. So I am going to fly back on Tues afternon.
I was wondering if anyone had suggestions as to what I might need to add to this to help prevent an even while on the plane! A little freaked out right now since I seem to be hyperreactive right now and I fly out Tues. afternoon.

I have an allergist in Dallas, but not one that is very knowledgeable about IA. I am seeing a mast cell researcher at UT Southwestern Medical School in Dallas - but my appt is not until June!!

Thanks for all of the great information you have on this forum. It was how I was able to try and manage my care while in the ER.

Thanks,
Gaynel

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DeborahW, Founder

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Re: Out of control!
Reply #1 - 04/24/11 at 12:42:10

Have you ever tried allegra? If so, you could add that (180 mg) in the morning and another allegra in the evening. If you haven't tried it and don't want to try anything new, you could just take an extra Zyrtec in the morning and an extra Zyrtec in the evening. What time do you take your meds in the morning and evening? Think about taking your evening meds earlier if you normally take them later. For example, I take mine at 7 am ( or when I get up if I sleep a bit later) and then at 4:00 pm. I also used to take my singular at 2:30pm (theory being that I wanted to spread my meds out for the best benefit throughout the day).

Now, did you say you have been put on prednisone? If so, that should help a ton. What dose were you given, and for what duration?

All of these meds should help keep you safe. Use them as preventative rather than wait for symptoms to appear. You will get home just fine.

. Dont forget to drink water all the the time to prevent dehydration, which could bothe your mast cells. Stay calm on the flight as well so that your mast cells behave and don't trigger from you worrying.

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gnbailey

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Re: Out of control!
Reply #2 - 04/24/11 at 13:09:01

First, thanks for the reply!

I have just bought some Allegra but I have not used it consistently and I was only taking 60 mg - so I have not been using enough to do any good it appears!

I take my am meds when I wake (around 8:00 while in LA because our schedule has later nights when we are here) And then I take my pm meds
around 8 at night. So, maybe they should be taken earlier in the day like you.

The doc did put me on a methylprednisolone pack. It is a 6 day tapering pack. It starts with 24mg and tapers down by 4 mg each day.
She also gave me a script for Prednisone 20mg to be used as rescue.

She was not really sure what to do to help and a just handed them the ER protocol sheet and prayed that it was going to work!

I really need to find a specialist in the Dallas area and I do remember reading on the forum of a specialist in OK City. That might be my best bet!

Thanks so much for you time - and on Easter!
Happy Easter!

Gaynell
Gaynel

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DeborahW, Founder

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Re: Out of control!
Reply #3 - 04/24/11 at 15:35:06

Hmmm...I can't be sure, but I think that whenever I have had to take prednisone, I have been given a higher dose to be tapered off over a 12 day period. I could be wrong, but I don't think so. I feel as if I was given 40 mg for 3 days, 30 mg for 3 days, 20 mg for 3 days, 10 mg for 3 days. I can't be sure, though, but maybe Ramona or Lisa will chime in (they have both been on it frequently enough to know, I believe).

I have copied and pasted some info for you below. This is on the website of The Mastocytosis Society. (http://tmsforac.ipower.com/dev/archives/869) I thought you might feel more comfortable traveling with this printed out and in your wallet.

Medical Emergency Response Plan for Systemic Mastocytosis, Mast Cell Activation, and Anaphylaxis
By Dr. Marianna C. Castells, M.D., Ph.D.

If the patient presents with flushing, rash, hives, swelling, abdominal pain, nausea, vomiting, shortness of breath, wheezing or hypotension, respond with the following:

Administer:

• Epinephrine 0.3 cc of 1/1000 and repeat 3x at 5-minute intervals if BP < 90 systolic (0.1 cc for children under 12);

• Benadryl (Generic: diphenhydramine) 25-50 mg (12.5-25 for children under 12) orally, intramuscular or intravenously every 2—4 hours or Atarax (Generic: hydroxizine) 25mg (12.5 mg for children under 12) orally every 2—4 hours;

• Solu-Medrol (Generic: methylprednisolone) 120 mg (40 mg for children under 12) IV/IM;

• Oxygen by mask or nasal canula 100%;

• Albuterol nebulization.

Call 911 and take the patient to the closest Emergency Room.

Pre-medication for major and minor procedures and for radiology procedures with and without dyes:

• Prednisone 50 mg orally (20 mg for children under 12) 24 hours and 1—2 hours prior to surgery;

• Benadry1 (Generic: diphenhydramine) 25-50 mg orally (12.5 mg for children under 12) or Atarax (Generic: hydroxizine) 25 mg orally, 1 hour prior to surgery;

• Zantac (Generic: ranitidine) 150 mg orally (20 mg for children under 12) 1 hour prior to surgery;

• Singulair (Generic: montelukast) 10 mg orally (5 mg for children under 12) 1 hour prior to surgery.

Drugs to be avoided:

• Aspirin and non-steroidal anti-inflammatory medications;

• Morphine, codeine derivatives;

• Vancomycin;

Recommend: Tylenol

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gnbailey

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Re: Out of control!
Reply #4 - 04/24/11 at 15:44:25

Thanks Deborah!

I really appreciate all your information! I know how time consuming it can be. My daughter was injured by the Gardasil vaccine 2 years ago and I often get emails from moms needing information. I am so willing to do what I can help and give them the information we came about during our 2 year trial. But, I do know that it takes time and effort to answer all the email.s!

So, again!
I appreciate it!

Gaynell

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Sandi

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Re: Out of control!
Reply #5 - 04/24/11 at 16:53:25

Gaynell, the OK City specialist is Dr Phillip Miner Jr, he's on the Masto board and has been treating patients since the 80's. He was at this last years conference. He is at both the Oklahoma Foundation for Digestive Research and is also clinical professor of medicine at University of Oklahoma. He is a gastroenterologist, if you do not have gastro symptoms that is the only reason I would not go to him. I have overwhelming gastro symptoms so I'd go to him. I could have sworn there was a texas doc! Anyone out there know? I believe he treated the aggressive form, but it' be someone with experience in mast cell issues.
Have you begun to figure out any triggers yet? I do not wish to alarm you at all, but Deb's reference of being fine on the plane? If I recall you were triggering when driving to fumes/ outdoor exposures. I have not been able to fly in probably 6+ years. Since the perfumes/colognes became so much worse. It's over for me. If you trigger to those, I would not get on the plane. My personal opinion.
I will go into full blown anaph if exposed to it too long fully medicated. It's one of those things I can't mess with. I go out in public but can immediately leave the scene and still can get sick. This may not apply to you but just be aware. I know that's the hard part right now theres so much to be aware of but not get paranoid! Right!
Have you made your diet as bland as possible for a bit? Even if food is not a trigger as far as you know, with you triggering so much it's not worth the stress on your body to have foods that are chock full of ingredients. Truthfully if you have just used the epi two times in three days I'm not so sure travel is a good idea right now, You need to get your body under some control. I understand have to's and working while feeling terrible, however two epis in three days is very very serious and your family would rather have you on the couch taking care of yourself than not with them at all! I hope you can add that allegra and glad you are on the pred right now as Deb said! Any chance of mold in the house at all right now? bathroom shower, etc something that is in the home air, any scents, bug sprays etc? YOu know the one thing that drive me BATTY about docs is why the heck your allergist cannot call DR AKIN or CASTELLES and get some direction on treatment! So many physicians should be doing that! Instead they just let you keep playing physician roulette! Ok off the soapbox! I think you need to keep yourself home for a bit woman!

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Sandi Guiding Light Offline I Love YaBB 2! Posts: 205	Re: Out of control! Reply #6 - 04/24/11 at 17:12:10 Gaynell, Heres doc Miners contact info for Univ of OK Medical center, he's also at the other place so you can feel out which center is best for you if he's the one. http://www.oumedicine.com/body.cfm?xyzpdqabc=0&id=6&action=detail&ref=15...
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Sandi

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Re: Out of control!
Reply #7 - 04/24/11 at 18:14:47

Gaynell, the texas info is MD Anderson Cancer Center, they obviously treat the aggressive form of Masto but I'm sure they'd treat a non aggressive patient also, possilbly you could contact them one doc's name is Dr. Srdan Verstovsek , now if I could travel very well, I'd just go to Dr Akin or Dr Castells or for Me DR Miner. This may be worth a try because it is close and they do know mast cell disorders. Now my only very limited info on Texas was they don't know as much and treat all masto as aggressive and put everyone on chemo. I truly doubt that! I've read it online by a few people but it just makes no sense at all, I have run into folks that truly should not have been on a treatment protocol for aggressive masto when they had indolent but it's always been by a unknowledgable general pract/allergist/oncologist. ( Physicians that think all mastocytosis is aggressive and do not understand the categories at all) As long as you are educated you can keep that from happening. You need management ASAP. I wish I could find more texas docs for you! Possibly e mail Dr V.

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Riverwn

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Re: Out of control!
Reply #8 - 04/25/11 at 03:25:08

Hi Sweety,
Now for MY two cents LOL... At this moment I dont think you are stable enough to be trying any new med ok.. Not for the moment. BUT you have what you already need to go home and do it safely. You are on some wonderful meds there, lets just juggle the way you are taking thrm ok?? You already have some heavy artillery LOL.

I want you to go home.. like a citizen who observes speed limits IF you are driving... OR...like a relaxed person IF you will fly.. Lets Consider both.

1# You WILL fill that emergency script for prednisone (not take it , just fill it). You are already on the reducing dosage and that should be enough to keep you safe from shocking until you get home. I want you to use Benadryl like you would use valium or Xanax until you get home to see your doctor. (on the airplane, I mean). NO alcohol. You can take 25 mg pill/tab... wait for 45 minutes and you can always take a second one then if you feel you need it. Now dont drive on it LOL.. but you can fly on it.

I also want you to take one (or two) Benadryl with your night time meds until you are stable OR can get in to see your doctor.

IF you drive (and I would rather you didnt, just go HOME ok?? LOL).... then having that emergency prednisone will protect you, I promise. Most of us seem to have a line of lets say 20 mg prednisone where you will not shock while taking that once a day--With some people its 30 mg. You have that script, fill it and keep it on you.

OK your NEW emergency kit goes like this...
1 300 mg Zantac
50 mg Benadryl
40 to 60 mg Prednisone
2 epi pens
a few extra zyrtec
letter explaining that you have an "anaphylactic shocking disorder" and instructions for medical staff
Your doctors phone number

IF you feel you are starting to have a reaction , you take (first);
1 zantac
1 Benadryl
1 or 2 zyrtec
take all of these at the same time

These take about 25 to 45 minutes to kick in.

wait 30 minutes--if it isnt getting better, you now take;
1 more Benadryl
40 or 60 Prednisone
This takes about 2 hours with me for prednisone (by mouth) to kick in.
Stay CALM, dont work agsaint yourself, watch a comedy!

IF at anytime you feel like you will pass out, you take the epi, but if you take these other meds quickly enough, you stand a very good chance of reversing the reaction and you wont need it!

When you get home, I want you to ask your doctor for some xanax or valium. Stress is a big trigger and either of those will help you chill out long enough for your emergency meds to work MUCH better ok?? If you dont chill out, you are working against your meds Hon. So be KIND to yourself

So go home, and let us know when you get there.. You can make further plans then. We're here for you, we have your back and you will be fine (gotta love that prednisone security blanket!).

WE got your back! Wink

Love and hugs,
Ramona

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Riverwn

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Re: Out of control!
Reply #9 - 04/25/11 at 03:40:34

One more thought.. If you fly, I want you to call the airline ahead of time, and identify yourself as disabled--they pay attention to that word and they MUST make arrangements for you that other people dont get. So you tell them you may need to switch seats quickly IF anyone wears heavy perfume for cologne, they will be ready for it and they MUST accomidate you--by law

I dont think you will need this but here are directions, for just in case...IF that scenario happens, you go as far away from that person/smell as possible, you pop one prednisone (20 mg), take one benadryl, one zantac, and one zyrtec.. and they do have O2 on the plane in a small tank. Let them bring it to you and use it just to not smell any odors--put it at 2 L on the gauge, easy . You will be FINE

Love ya
Ramona

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DeborahW, Founder FOUNDER/ADMIN Offline Posts: 1224 USA	Re: Out of control! Reply #10 - 04/25/11 at 04:34:55 FABULOUS advice! Okay, Gaynell, I think you are set to go!
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gnbailey

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Re: Out of control!
Reply #11 - 04/25/11 at 05:39:20

Thanks so much to all of you! I am actually feeling shocky this morning but reading these posts has made me feel better! I did call my Dallas allergist and he said basically the same thing. He put me on 40 mg Prednisone every day till I get home tomorrow night.
In a regular situation, I would totally wait until I was more stable but my daughter is an actor and we have to be back in Dallas for a film callback on Wed. morning.
I woke this morning at 5 feeling nauseous and that "shocky" feeling so I took my usualy meds then. And by 8 I did take the 40mg of Prednisone and Benadryl 50mg and then threw a little Allegra 90 mg into the mix.
I think I am feeling better and not going to need the epi! Yay!

Once again, thanks for all the great advice!

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DeborahW, Founder

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Re: Out of control!
Reply #12 - 04/25/11 at 06:28:40

Good job! See, you are in control of the situation! You will find that when YOU are controlling your symptoms, your stress (and symptoms) diminish greatly. You might flare here and there, but just tell yourself that you know what meds to take and you know you will push those symptoms back.

Write in and let us know when you get home tomorrow!

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Riverwn

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Re: Out of control!
Reply #13 - 04/25/11 at 07:33:04

Im VERY proud of you!! Youre gonna do fine.. and remember while traveling, throw the word "disabled" around alot.. I know it hurts the ego but.. that alerts people that they MUST make arrangements for you by law or get in trouble LOL... NO walking in that airport, they MUST take you by tram, golf cart etc to the gate and you go on board first. (walking is a trigger, dont do it, let them spoil you).

Once you get home, then talk to your doctor about tapering down from the prednisone.

Im SO happy that YOU are in control!! Youre learning so fast and it feels wonderful, when you tell the masto "Down Boy" and it does it LOL. Have a GREAT trip. sleep and watch a funny movie and let us know when you get home!
extra hugs for a job well done!
Ramona

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gnbailey

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Re: Out of control!
Reply #14 - 04/28/11 at 16:02:01

WEll, Ramona and Deb, I did make the flight back to Texas just fine. I had one "shocky" feeling so I loaded up on my emergency meds and I had no problem. Thanks to the advice of flying disabled. It did decrease the stress.
I saw my allergist today and his plan is to work me up to rule out a Carcinoid tumor. I was referred to a Gastroenterologist and started on a 24 hour urine.
However, I never made it to my afternoon referral appointment because I ended up having to use my epi-pen (the 3rd time in a week) and went to the ER instead!
I will see the Gastro doc in the morning and hopefully get some sort of work up started towards a diagnosis so that I can get some sort of stability!!!

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