hi im looking for people with the same condition angioedema to share advice x

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Hello ;-)

How are you today xxx im niggling, face up, but chest and throat ok . i have idiopathic angiodeama . I have been tested for hae and all autoimmune causes . I have daily symptoms and shock xxx I have managed a year shock free xxxxx

Tell me all about you hun xxxx

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Josie, just reread this. Your diagnosis is idiopathic angioedema but do you not have mast cell disease also ? Angioedema does not have all the symptoms that your exhibit, would it ?

What do my normal labs, C1Esterase inhibitor, C3, C4 rule out ?

Nurse called from Allergist's office yesterday and said that the Allergist thinks my symptoms are due to autoimmunity---thyroid etc

I talked to 2 Pharmacists yesterday about the fentanyl and both said that the opiates release histmaine, some more then others. I also printed the info you sent me on surgery precautions and emergency plan and dropped it off for Gastroenterologist yesterday.

Does the pathologist need to be told to look for mast cells or anything else or is that routine ?

Why do so many people with mast cell disease have GERD ?

Thanks, think I will send this to your email also.


My EGD is tomorrow.

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Hi Katinker ,

The doctors here in the UK are not diagnosing mast cell activation syndrome . It is likley that mast cells are playing a role for me and antihistamines work , which they don't in heridatory angiodeama ;-) But because angiodeama has triggers like mast cell but the biological process is different I have smiliaraties with arowl xxxxx

Idiopathic angiodeama actually describes my condition most accurately as , just now, i can't prove mast cell activation ;-) I know meds to control mast cells work , but some drugs like singulair work for angiodeama regardless of how it is happening ;-)

HAE angiodeama is due to compliment 1 is low or missing or it doesnt work properly, so a system in the blood called kinin , makes blood vessels pours causing swelling. It also causes muscle spasms amoungst almost all mast cell symptoms ;-) it just how the swelling happens which is different . In HAE the emergency treatments are different tho epipen s can work to hold the airway until help arrives if needs be ;-)

For my angiodeama , we are trailing a drug which controls plasmin , which is the substance responsible for swelling in HAE. if i respond well to this then other angiodeama treatments may be worth considering . i am also starting nose gastrocrom which is drug which stabilizes mast cells ;-)

In essence I have afoot in each camp ;-) I have been tested for all causes of angiodeama inc histamine ( tryptase ) so my diagnosis is - we don't know why( idiopathic) swelling ( angiodeama )

Yesterday I had 2 incidents 12 lunch and 1am , in which i flushed , swelled , my BP dropped a little , my throat became itchy . But antihistamines bought it under control ;-) so i am relaxing today / sleeping most of it . i think it was the alcohol gel the nurse used when she came to do my bloods yesterday xx i felt it on my tongue when she left . i am fed up of these attacks. i have stayed out of ed , which is a huge improvement on before where i was there weekly , but i was more settled than this. Hormones impact on me big time and its that time of the month xxx i know the worry about tomorrow is bothering me as well xxxxx

I hate the 24 hours before appointments for procedures or specialists ;-) It will be over soon hunni xxxx
many many huggles

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Josie, sorry that you had some incidents yesterday. Glad you can bring it under control.

What criteria would you need to meet to be considered to have a mast cell disease ?

I hope and pray that you get good news tomorrow.

Yes, I know what you mean, about the 24 hours prior to a procedure. I had a pretty good day until I had acupuncture after which I seem to be in a flare, darn, hope my body settles down by tomorrow.

MA left a message on machine that. Dr.W got my papers, that I can take ranitidine if I want in the AM, do not have to take the claritin since I will be taking 25 of benadryl ??? I had thought they would give it to me IV. I called back for clarification when I got home but did not get a return call so not sure what to do. Surely, they have IV Benadryl on hand. MA said I need to talk to Dr. in AM about concerns and if I have taken the benadryl, I might be too zonked to do so.

Hugs and positive thoughts are being across the Atlantic to you, Josie.


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Hi Hun xxxx

I hope I have caught you before you need to leave ;-) I had along sleep and feel better for it.This is all normal after a biggie xxx

The criteria for mast cell activation are positive urine for histamines and or prostoglandins during an attack , the medications helping or symptoms increasing where a patient was previously stable ;-)
From where your test are now . I think you have autoimmune mast cell activation ;-) So it is all your mast cells splitting that are bringing your symptoms but we know why they are so easily triggered -unlike in mcas we don't know why they trigger so easily ;-)

Piriton - my version of benadryl ;-) only knocks me out if I am not reactive at all . So this morning , judge it hun . if you fell 100% fine wait and take it after you have spoken to the doctor and ask that they wait half an hour or take it before you go if you have any symptoms at all as the stress will increase them so having the protection in would be wise ;-) benadryl orally , as long as its had half an hour to absorb is as good as intravenous. ;-)Even if you have one dose before you go you can have a second just before the procedure if time has passed , or anyway as 50mg in one dose is absolutely safe ;-)

Thinking of you ,
many hugs

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Thanks Josie, I did not take oral benadryl before leaving the house---decided that IV would be better and that is what they gave me in addition to the versed.

Now, I get it,did not know what you meant in the past about the 2 types of mast cell disease, that one is autoimmune and that one is not.


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Hello my name is Tracey I am a 43 year old mum. I was diagnosed with Hereditary Angiodeama approx 20 years following tests by the MRI (manchster) immunology after suffering several swelling mainly facial. The swellings were irratic and I now realise that these seemed to be more frequent when i was on the contraceptive pill. Over the last few years the episodes have been few and far between and I have controlled them with Predisional steriods and antihistamines. The swelling has affected my voice box occasionaly and also my stomache, cramps, sickness, loose bowels etc.....
Since Jan 1st this year I have had one continuos episode. It started properly on the 1st Jan with itching, my whole skin ( never had this before) I assmed it was just an allergy. Later on facial swellings started, eyelids, cheeks, forehead. Then a rash appeared Ucataria ( never had this before) the rash got worse it was very red and angry, I had wheels also, raised lumps etc. I felt as though I had flu, achey bones, fatigue etc... The rash went up and down. The doctor who to be fair knows nothing about HAE told me to take 40mg of prendisional daily and two lots of ani histamine..... this didnt work. Went to A @ E had tightness of chest, craoky voice they sent me away saying that the C1 Inhibitor would create more problems that I already had and said keep taking the steriod 40 mg a day!! Carried on with this, the rash came and went then two weeks ago it came back again, I went to the MRI ER to see if they could help, I was admitted and given intravenous steroids etc/ . Whilst there a doc came from immunology and told me that i dont infact have Herdeditary angiodeama but they think idiopathic angiodeama. Because the attack was so persistant they spoke to a specilist at another hospital, he cahnged my meds again and im waiting an apt to see him. Im now on Rantidine, Malocast, ceritizine and another anti infammatory beginning with F plus the predisional ( down to 20mg a day, decreasing weekly) I have felt so ill, i was off work so tired, no energy, no motivation itchy at one point i felt like i was dying a slow death ! I went back in last week after a week off, not well but thought cannot stay off indefinetly. This weekend the rash is coming and going and I have that feeling inside of unwellness again...its as though I can feel somthing going on in my skin, my body. The doctors told me that the receptors in mny body have switched on and wont switch off hence trying all these meds... still clearly not working. I have no idea whats caused this? I have also been having flushes in my face since before xmas I think these are related, at night I have woken up dripping in sweat dont know if this is related or not? I have been under a lot of stree in the last 12 month or so could this be causeing this?. The docs said they would test my thyroid, not heard so assume this is clear. They said I AM NOt aneamic, blood counts were ok. They were going to test againg for Hereditary angiodeama again, apparently one was a low reading one was normal (tests from yrs ago) not heard about this either?? I feel like the back of my legs, calves swell, my head feels very tight on my scalp. Can you give me any advice I feel totally depressed after googling I am worried that i have somthing elses like Lymphoma or lupus these keep coming up?? can it be that there is somthing going on im my bodie that is causing my immune system to go into overdrive?? or just sparked by somthing trivial? any advise would be apprecited? do i need to ask anot the Mast cells? this is a new one to me??? Any help would be greatfully appreciated. Thanks Tracey

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Hi Tracy ,

Huggles hun xx Things can and will get better. You have found a place where you are not alone ;-) I am here in the UK, in Bristol xxx

I have idiopathic angiodeama finally diagnosed this January . i recognize everything you are saying absolutely everything. I have had weekly /daily trips to a&e and all the symptoms you have . The fatigue and itching - urrggghh I know hun xxx i have had and do around reactions , have that absolute exhaustion where i can't even hold my head up , my mobile or type . You mention knowing something is happening I understand , i get a bothered feeling that i cant explain as i begin to swell xx

HAE type 1 and 2 have specific tests , type 3 is estrogen driven but has no specific tests, this last type was discovered in 2006.

With HAE you dont get wheals/ hives . this suggests to me that mast cells are involved . Mast cells are normally a allergy cell . In angiodeama which isn't allergy , mast cells trigger with the smallest thing . because this has suddenly got bad we need to consider what has made it happen . possibilities are infection , early menopause as 2 starting points .

mast cells live in your skin or in eyes, nose , lips, mouth, throat, lungs , oesohegus, stomach , bowel to bottom , womb vagina, bladder and waterworks , heart and nervous system apart from the brain . the chemical which come out of mast cells cause the symptoms - These chemicals are ;- Histamine , prostoglandins , leucotrines , heparin and tryptase came from mast cells when they split from activation .( triggered )

These are they symptoms they cause

itching - anywhere / everywhere
skin writing - what you have when you scratch your skin
swelling - from fluid moving into tissues
dizzy - BP drop ( can go high on the way )
fast heart
going slow in anaphylaxis
brain fog - mixed organic brain syndrome
bone pain
short of breath
throat close
Bowel swelling
GERD - too much stomach acid
spasms of bladder , bowel , stomach , womb , chest wall
intersitial cystitis - sterile cystitis
recurrent infections
eye problems
ringing ears
painful sinus'
over heating
poor cold tolerence
pins and needles / numbness - parathsesias
nerve pain - neurogenic

headaches ( from blood vessels opening , dilating in an enclosed space )
smooth muscle spasms - bowel , stomach , throat , bowel , bladder , womb
BP drop

swelling of airways and all over
asthma type symptoms
throat swelling inside

blood thinner so leads to bleeds

high cholesterol .

Compliment is a part of your immunity which is capable of splitting mast cells . This is how autoimmune diseases cause mast cells to split . they also have their own symptoms
1) blood vessels opening - low blood pressure and flushing , headaches
2) anxiety
3) swelling where blood vessels leak fluid into the tissues , this also happens in HAE but by a different way - loss of fluid causes low blood pressure, thirst , fast heart, dizziness , swollen in tight places = throat and inside the chest, split mast cells leading to all other symptoms

Treatment focus' on controlling as many symptoms as possible ;-) This is by blocking histamine receptors and stopping mast cells putting the chemicals into the blood .

These are the treatments commonly used ;-)
H1 receptors are in skin , lungs , bladder ( can have mast cells ) The drowsy ones are stronger and work better and have the ability of stabilizing mast cells .

H1 blockade - drowsy making
benadryl - 25mg up to 8 times a day , commonly 6 doses and 50mg saved for emergency cover ;-)
Hydroxyzine - 25 mg up to 4 times a day ( I take 2 doses )- this has revoltionised my brain fog and spasms
Piriton 4mg up to 6 times a day ( i take 4 doses and keep extra for emergency - 8mg )
Ketiofen 1-2mg 3 times a day - also stabilses mast cells . Available in canada , italy and UK . Just not fda'd due to cost . Its a safe drug widely used with immense success
Doxepin - stabilises mast cells and is widely used . Some people dont tolerate it .

H1 blockade - Non drowsy
ceterizine hydrochloride - 10 mg once a day ( I take 2 doses )
fenofexidine 180mg once a day ( common dose 2 times a day some 3 )

H2 blockade - digestive system, Mouth to bottom
ranitidine 300mg twice a day - drug of choice - has taken my bowel pain on a daily movement much better , reduced frequency and bleeding

PPI - proton pump inhibitors
Omeprazole , lansoprazole and the like to control stomach acid

Leucotrine receptor agonists ( blocks )
Singulair 10mg once a day ( i take 2 doses as per doc off licence this is common

Parcetamol - sailcilates
tylenol 1g 4 times a day - reduces effects of prostogalndins in me

NSAIDS / ASprin cause mast cell activation so may not be tolerated but can lead to consistant degraulation aiding symptom control . i can't tolerate these at all

Opiates . Are not advised , some people tolerate them .
Mast cell stabilization drugs - gastrocrom - sodium, cromlyn . Is a good drug. It can be expensive but different preperations are available . Also available is nasal crom, reduced dose but a large percentage of the oral dose is metabolised on the first pass through the liver . So nasalcrom in real terms dosing is ok to begin.

Gastrocrom is used for mastocytic entrocollitis . A 6 week course is prescribed . In mast cell disease / mastocytosis gastrocrom is used as a daily prescription to stop mast cells splitting in the first place . I think this treatment will help you significantly .
up to 200mg 4 times a day .

EPIPENs , epinepherine , in self injections to be given in anaphylaxis .

When the list of meds is exhausted . Immunomodulation can be used . because you are suffering so much right now . I think using these meds would aid getting you settled . these include methotrexate , cellcept , interferon ( favoured by Dr castells ) gleevac . Immunomodulation is used for idiopathic anaphylaxis if the meds don't bring stability xxx

Steroids were used and do work , but have serious long term implications . So are favored for emergency only .

Do you have high blood pressure when you are in a poorly place ?

Triggers are what makes mast cells spill their annoying contents ( add your own explative )
I thought I chat a bit about triggers . The things that make us have symptoms .
Wether you have too many mast cells ( mastocytosis ) or badly behaved normal mast cells we get triggered by various things that make the cells split and its the chemicals within circulating that cause our symptoms . It is possible to work out triggers and avoid most . have you noticed any ? keeping a diary of everything that goes in food drink medications , and what you wash or rub in and all symptoms - this will help you suss triggers ;-)

This is the list from
Anesthetic agents
Antibiotics - mycin antibiotics
Bacteria or fungi
Certain foods
Cold (temperature)
Coloring & flavoring in foods
Coloring & flavoring in medications
Emotional upset
Environmental toxins
Exercise or exertion
Heat (temperature)
Infection with viruses, bacteria or fungi
Plasma expanders (i.e. dextran)
Room freshener sprays
mertoclopamide , tricyclic antidpressants , beta blockers - have contraindications that make them an absloute NO

My triggers are

Infection ,- wheezy up to anaphylaxis
stress - emotional ,- chest up to anaphylaxis
physical - hormones - wheeze , itch , swell ,
exercise - swell , itch , wheeze ,
Alcohol ,- anaphylaxis
vinegar,- bowel , then anaphylaxis
caramel coloring anaphylaxis
corn flour ,- bowel - histamine hits everywere
gelatin - chest / airway flush burning rash
certain drugs ,- vary -
CT contrast ,- anaphylaxis
sulphites ,- up to anaphylaxis - I have a naughty list which is exhaustive for sulphites
cleaning products ( all bar simple disinfectant ) ,;- flush , airway symptoms
sodium leureth sulpahte in personal care products - itching / burning
BBQ's - fumes from fuel and food ,- dizzy , pale , lie down . BP down
paints ,- BP drop / pass out
diesel ,- flush , vomit
heat ,- swell , dizzy , vomit , itch
direct sunlight ,- dizzy , vomit
deoderants ,
air fresheners -
My true IGE allergies - Pollen , cat dander , house dust - which get made more serious by other mast cell activity .

My autoimmune disease is diabetes , which is going to be investigated for poly endocrine autoimmunity as my adrenals have given up the ghost as well . having an autoimune disease shines a microscope on any mast cell activity . So control of any autoimmunity helps . It doesn't take the mast cell issue away - but it stops aggravating it , like poking it with a big stick , its going to complain ;-)

High histamine time in the body is 2am ;-)

Avoiding high histamine foods helps hun ;- This link has full information on this ;-)
the lady who wrote this has had idiopathic angiodeama and anaphylaxis for 40 years and this is a safe site for information ;-)

yep . I may remember more.So , if you think its a trigger it is a trigger ;-)

To diagnose your swelling as idiopathic several conditions need excluding . An immunologist can do these . If you have one please start with them. If not the British leading team are at St Thomas' in London . Your existing doctor can contact them or you can for advise and whether you need to see them or a local doctor can do the tests .

Mast cells can build up in a condition called mastocytosis . This can be tested for with a blood test for mast cell tryptase . This should be taken on a good day and on a bad day as both results are needed for comparison . if its over 20 it indicates extra mast cells are your cause and a bone marrow biopsy is done . mastocytosis is very slow building up, you may read it is a cancer , it is extra cells but it is so slow moving that it is not a concern like a cancer in the traditional sense .

Mastocyctosis / mast cell disease will not shorten your life if not caught .It will lead to other symptoms over time such as osteoporosis . In 3% of cases it can become a cancer which needs treatments . Good treatments exist ;-)

mast cells can build up to a lesser level , this is anew diagnosis.

or mast cells can be normal in number - but they split very easily

All the mast cells split easily . hence why the symptoms list is long, can you let me know all of your symptoms ?;-)

The chemicals attach to receptors . these are points on cells where the chemical attaches which causes symptoms . medications block these receptors by filling them , so the chemicals cant cause trouble ;-)

As you can see the treatments list is long as well . Most of us need 2 drowsy making h1's and 1 H2 +singulair - montelukast to gain control . i am on 3 H1 , 1H2 and singulair . This has taken me from where you are to feeling much better . h1 drugs are drowsy and non drowsy making . most of us find the drowsy ones don't affect us or if they do the side effect wears off in 2 weeks max . The drowsy ones are stronger and work best for us .

Your list of meds seems good but it is not controlling you . rantidine can be up to 300mg twice a day , ceterizine can be twice a day or can be changed for a .
the f drug is fenofexidine . this is usually prescribed twice a day 180mg in us .
montelukast is 10mg but we respond well to 20mg a day

You are not on a stronger Histamine receptor 1 blocker . ceterizine and fenofexidine are weaker . i was still steroid dependent when I was on only these . Hydroxyzine is a good drug - 25mg once a day to begin with at night then 2 times a day . Also you are not on a mast cell stabilizer - piriton available OTC is a good place to start. By stabilizing mast cells it reduces how easily they are triggered . 4mg 4-6 times a day will help bring your mast cells in line ;-) Your GP can add these . Do one at a time . these can be taken alongside all the other medications .

Ill advise more once I have seen your full symptoms list hun xxxx

I was on steroids and where you are before i went to London . I am now off steroids and on a good mix of medications . im rougher just now but only normally react twice a month around hormones .
Are you bouncing on and off steroids ? In which case London can check you Dont have anything else which can cause angiodeama and then depending on this pick the right drug to give you extra cover .

These other things are autoimmune conditions - these may or may not be the problem . if they are they will treat them and this will settle your angiodeama . mast cells I have mentioned ;-) which use all the treatments I mentioned . HAE which you know about but have never been treated with the ideal HAE drugs . So these may be worth trying ;-) they are tranaxamic acid and danzol . One works to control the chemical which is overactive in HAE which is plasmin . the other is testosterone and this controls plasmin and stops estrogen production .

Because you mention bowel problems which are very common with all these conditions , I need to mention 2 other conditions which are highly unlikley as you have had this for 20 years . these are most relevant if you get high blood pressure .
Carciniod syndrome - which releases histamine but also adrenaline . its a slow growing small cancer which is hard to find . But with the right blood test then a specific scan if it is positive , will find it and it can be removed ;-) But if left is a risk for you ;-) The test are a 24 hour collection of urine for 5-IIHA and blood for chromatogranin A. carciniod has high blood pressure and high sugar in a crisis
The second is a pheocryocythoma , which is rare - its a small tumor in the adrenal gland which releases adrenaline . This wont give swelling but other symptoms of fast heart , problems breathing etc xxxx It is tested for with another 24 hour collection of urine for cateclamines and if suspicion is high then blood taken from a line placed 2 hours before ;-) for cateclamines . then a MRI -NOT A CT SCAN as CT contrast is bad for pheos and mast cells ;-) the pheo can then be removed with specific medicines covering it ;-)

Apart from the antihistamines you have mentioned what other meds are you on ? ;-)

i will leave it there for now hun xxx please ask me any questions at all xxx
I promise things will get better than they are ;-) feel free to show this to your GP if you think it will help . I have a nursing background .

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I have Angioedema and also have Mast Cell Activation Disorder. I actually am recovering now from an episode of angioedema caused from a head cold. I had been taking additional Benadryl to help avoid this but woke up a week ago with my eyes almost swollen shut and my cheeks swollen and flushed. Additional Benadryl and steroid inhaler have seemed to gotten it under control again. I know for me infection is a sure trigger so I try to prevent it by medicating for it but I'm not always successful. I also get swelling in my lips and if it gets bad enough my throat swells and I get a metallic taste in my mouth. It tends to stir up the mast cells in my gut also and I get yellowish diarrhea simultaneously. I carry an epi pen with me although I'm not a "shocker", but you need to have it just in case. My tryptase level has always been normal but my Urine Prostaglandin levels have always been around 2000 when having an attack. I take Aspirin 325mg twice a day for this with Pepcid 4x a day, and Nexium and 50mg of Benadryl at night. I also take Allegra 180mg daily and have Neo-synephrine nasal spray when needed and other prn anti-histamines. I've never had any genetic testing done to my knowledge but believe my angioedema is hereditary.

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Wow Tracy you sound like me 10 years ago. Started out with some flushing and fine facial rash. Then flushing / fatigue increased. Then throat/tongue swelling and hoarse voice. Admitted to ICU. Flown to chicago and put in their ICU. Then sent to Mayo's where they diagnosed me with Multiple Sclerosis and Mast Cell Activation Disorder. My tryptase has so far always been found to be normal but my Prostalandin levels have been very high and my medications focus on keeping it under control. I also monitor my intake of high histamine foods. Josie is such a wealth of info and I've learned so much from her. You're not alone and we'll all help any way we can! My triggers are infection, heat, cold, some perfumes, stress, alcohol, vinegars, tomatoes, exercise, bright sunlight, and smells from air fresheners / flowers, etc... So far I'm still working but daily wonder how long I can keep this up. I suffer from the "brain fog" with the MCAD and today I'm having trouble remembering 2 things on a list if I look away from it. Ugh. Going to be a long day.

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Hello Josie and 911RN ( sorry I do not know your name !) Thank you so much for your comments. It is so refreshing to speak to people who understand and have knowlledge of this condition. Firstly, the meds I am on is prendisolone reducing to 10md daily tomorrow. Cetrizine 10 mg twice a day. Rantiidine 150 mg x 2 daily, Fexenadine in the morning 180mg. montelukast 10mg evening. They also gace me diprobase cream?. In addition to this I take 20mg of citralopram a day and have done for approx 2 years.
I am waiting for an appointment with a Dr at Hope Hospital I believe he deals with these issues, he is the Dr that has prescribed this medication regime until I see him...hopefully soon. Do i suggest that he tests my Mast cells? would this show if I had mastyocytosis?

I did mention early menopause to my doctor and asked for a test, she said it wasny always clear??. readings are different throughou the month. I feel that this current episode appears to increase in verocity a leading up to my period 10-14 days... the immunologist at the MRI manchester said this was classic and is ofern a trigger? why though now?? have my hormones changed/ onset of menopause ? I am assuming that the specialist will ask all this? and test accordingly?.

Somthing I fing confusing is the talk of autoimmune disorders? will I have one? what are they? I know they tested for thyroid, ave not heard so am assuming this was normal. I'm not aneamic, belive clotting etc was ok. My blood pressure must have been ok as this has been taken when at A & E, doctors and when I stayed in hospital a couple of weeks ago. I must say though that my heart does race when an episode is in full swing, i can feel it in my chest as though my blood is pumping faster.

Why is it that when you google Angiodeama it always mentions Lymphoma and Lupus? are these tested for? should I ask? my gran died of Lymphoma so this obviously concerns me?? In saying that when bloods were taken at the hospital would my white count not have been high if somthing like this was ongoing?

Reading different pages it states that stress, shock, trauma affect angiodeama. I had a fall in a shop 2 years ago resulting in a hip operation 18 months ago, I have had a lot of issues with this, plus physio plus accupuncture before Xmas could this be a trigger?

Also I found a lump in my breast in Dec 2011, was told in Jan that these lumps are cysts? could these be a factor? triggering this episode? It may sound silly but I'm just trying to think of anything that could be the cause.

I totally get the brain fog thing wow i was begginning to think i was getting alchscheimers, sometimes I just cannot fuction or concentrate at all...

Stomach acid yep another sympton and already take lansoprazole never realised this was related.

The tightness of chest thing is also very prevalent when the episode is bad its like someone has a belt just under my cest, I cannot seem to get a deep breath. when ih hospital they tested this but did not seem to be overally concerned?

Do you suggest that I also request urine samples?? from the specialist? what levels will these show?.

I am so sorry to ask so many questions but feel I have o try and gather as much information as possible before seeing this specialist, to be prepared.

Again thanks sooooo much hun, I really appreciate your time an assistance you really are a star !!

Tracey :)

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Got my tryptase in the mail today, is it 10, range is 2-10. Nurse had left message it was normal. Don't like it so close to the top of upper range. I was not having symptoms when it was drawn.


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Hi Tracey , Sorry I have been abit slow in getting back to you xx I am up and down a bit at the moment ;-)

The blood test for mast cells is the tryptase I metioned . if its over 20 it is reliable as a test of mastocytosis. But if its below the urine test for histamine and prostoglandins will be ideal , depnding on these levels most importantly on abad day for all , will direct the doctors . A new bone marrow biopsy may need doing but they are done with gentle knock out so you will be fine . the testing of bone marrow or any sample for excess mast cells and tryptase is complex and easily buggered up. samples can be sent to Boston if needed for the specialist specialist lab to do the work ;-)

The treatments apply to all forms of mast cell disease . I am pleased he has begun a sensible regiemn already ;-) Have you noticed any improvements at all ? Don't worry if not , your are on stage 1 of 7-8 medications wise so you have many options .

Your doctor is right about hormones as you are going into menopause. but having the levels will be useful for the speclaist as if certian ones are high it will suggest controlling them would be a serious consideration ;-) IF hormones are triggering you which they sound like they are , once the menopause is done many find their angiodeama is better , not cured but easier ;-)

Autoimmune conditions can cause angiodeama . a couple in particular are more common . 1) thyriod , where the body attacks it and the over active immune system goes in to give angiodeama by triggering /splitting mast cells . the thyroid condition leads to the thyroid failing eventually but not immediately . so TSH , may be normal. doctors need to do a thyroid pyroxidase antibody level . this diagnosis hashimotos thyroiditis . Once all the other potential causes of angiodeama doctors can use immune suppressant drugs to suppress the process on the thyroid and the angiodeama .

You may not have an autoimmune cause. the online info, which i am working on ;-) is limited and lists scary options . I would expect the doctor you are going to to know what needs doing to work you up for the various causes. But if he is lacking in this respect ;-0 go to this site and print off this guide ;-) . this will guide him ;-)

I can't say you haven't got lymphoma hun , only that you have had swelling for a number of years so it makes it less likley . Put it on you list and where the mass is you metioned and let he do whatever may be needed. You are correct bloods are off in the majority of patients ;-) i went through the is it cancer thing , it was horrible and I absolutely understand how you are feeling. I even had a nurse warn me gently of a potential diagnosis . I don't have cancer nad mine -angiodeama - is a we don't know - idiopathic . I know what things are happening when I feel rough up to very ill. So this helps . i will help you understand these things over the next few weeks ;-)

My angiodeama came screaming out when I was beyond stressed - no job , family money problems as my sister was gambling , away from my kids and no money to see them etc etc xxxxxx We generally just now dont know why it comes out or suddenly goes from irritating to serious . but i do know that we can gain control with the right mix of the right medications ;-)

I call my brain fog mono-syballic moron mode ;-) and the moment when i can't find a word a coupe moment as it was the first word I couldn't find when I needed it several years ago, when trying to describe a coupe car ;-) i also get suddenly grumpy as I am about to swell hun xxxx like serious angry and then within 5 minutes i am flushing . Also i get channel flicky and poor concentration that would make a demented goldfish look on the ball . especially in the 24 hours building up to a reaction . i also get down thoughts, which I now recognize it and medicate and within 15 min I am back to my happy self . Then ill forget what i am watching in the ad break and turn the tv over ;-) Oh yes , i am joy to watch tv with xxx

With your tight chest , what tests did the hospital do hun ? histamine from mast cells travels to the heart and the heart itself has mast cells and places histamine can attach and cause trouble . So your fast heart is no surprise . the tight band may be discomfort because your heart is beginning to get a little uncomfortable and / or because your chest is closing your airways . having antihistamines helps a huge amount in this ;-) If it is running very fast all the time a med can be taken for it. its called calcium channel blocker . We MUST NOT have beta blockers - the drug name written small will end in ol ;-) as they give us reactions and stop epipens working .

Now ;-) with angiodeama which is making your chest tight and heart very fast and I imagine you very dizzy ? ;;-) i want to talk about anaphylaxis . Angiodeama can get to the point that our bodies need help , other wise we will collapse and it wont be a good outcome . So we have epipen , which the doctor needs to prescribe for you. You will need 2 . If you get very short of breath , feel very dizzy, feel faint, know you cant get air out of your chest and or you throat is swollen inside - low croaky voice - i call it my sally sex worker voice . So we give ourselves an epipen and call 911 . As we may need 2, which is common and need intravenous medications to stop the histamine causing trouble ;-) these work for me EVERY TIME. I have needed over 40 ,30 odd given myself . My heart is fine, not damaged and so are my organs because the epipen has done what it needs to do ;-) I have talked about this because I am sure you will end up reading about it and its always better to know the reality ;-) as its ok ;-)

You can get practice pens on the epipen website ;-)
the adult dose is safe as long as you are over 30kg , which most of us are ;-) 2 doses are safe over 30kg ;-)

From what you say you have symptoms building up. it would be useful to take note of these as you will have symptoms which come before flushing etc. Armed with this knowledge you can take some antihistamines xx It may not stop a reaction needing an epipen but it can stop those which will be stopped . ;-)

You have had fairly typical ED experience , i would like to email you an emergency guide to carry even while you are being investigated ;-0 as it directs doctors to stop horrid experiences . most doctors haven't heard of mast cell disease so we go armed ;-) It also tells them what is needed so you get treated rather than them goggling it ;-) if you could friend me and send your email address , it is private and I will send you the guide ;-) Its by the top mast cell/ angiodeama doctors ;-) and is fab ;-)

Please keep asking questions hun and start writing a list as you think of things otherwise you will forget a question ;-)xxxxxx
many many huggles

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p.s - go slow with reducing the steroids hun, as if you do it too quick you can have rebound angiodeama . drop 2.5mg every 5 days to be safest ;-) and if you start swelling Dont lower it any further ;-) i add 2.5mg when I am swelling and it helps control it, wait 5 days and try again ;-)

many many huggles

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