Hi Vinnie ,

Welcome to the forum . I am Josie and I am also in the UK.  I ahve angiodeama ( swelling ) and other histamine symptoms . I am being investigated to get the right diagnosis . I am sorry you have had such a horrid time .

A mast cell disease certinly sound possible. Do you have any food problems or drug reactions .

Mast cell problems can be mimiked by other conditions , which it would be wise to be tested for whilst you find a good doctor in the Uk . These are carciniod syndrome - from hormones relased by lung and or bowel slow growing masses , The tests are :- a 24 urine collection for 511HA and a chemical chromatogranin A . between them these 2 tests are conclusive . The second is a pheaocryocythoma , a mass on the adrenal glands , this is tested for with a 24 hour collection of urine , for cateclamines - adrenaline and nor adrenaline . Your GP can do these .

I am sorry your dermo isnt capable of recognising a problem that presents in dermotology. Unf this is not uncommon in mine and others experiences here .

Where in the UK are you ??   As you need refering to a knowledgable dermotologist .

To help you and your GP there are 3 vids on you tube on mast cell activation symptomology - they are by the Americian specalists who know masto 100 %.

mastocytosis is diagnosed by skin and or bone marrow biopsy . A chemical from mast cells which comes out when they burst is called mast cell tryptase . A raised level in this is seen as a guide of mastocytosis . In the UK the level is over 12 . All bloods for tryptase go to the same lab Nr birimingham to ensure a good level of consistancy .

This is a blood test . One can be taken randomly and should be done asap  . Tryptase in masto is felt to be high all the time . This is not always the case . Sometimes it is only raised when a lot of mast cells burst and give out tryptase , histamine  , prostoglandins and heparin amoungst other chemicals .  So it is important you ahve one taken in the first 2 hrs of a major increase in symptoms .

In the UK at the current time , with a normal tryptase and no anaphylaxis the doctors do not like doing bone marrow biopsy .


Some people have mast cell activation - symptoms ,  but the raise in tryptase can not be caught . Their condition will be further investigated for other causes of histamine release and if no others can be found , they will be diagnosed with idiopathic urticaria (rash ), angiodeama ( swelling )  or anaphylaxis .

A new diagnosis is coming through as the masto doctors have noticed a group of patients who do not fit the mastocytosis criteria but have all the symptoms . This is called mast cell activation syndrome .

The UK docs will not diagnose this currently .

BUT

In either case the doctors will assess you and treat you . there are a body of treatments available .

Antihisatmines - type 1 - drowsy - piriton , ketiofen , cyclizine ( anti sickness ) , hydroxizine

Non drowsy - ceterizine ( benadryl , zyrtec ) ,  fexofenidine ,

antihistamines type 2 - ranitidine ,

leucotrine receptor agonists - singulair

mast cell stabilser - nalcrom

The treatments aim to block the actions of histamines and stop them being released .
What medications are you on now?
Many of these your GP will try . Many are also available over the counter . You can begin with antihistamines to see if they help Caution should be used if you ahve a history of SVT or any other underlying heart different rythym . With your history I would discuss any Over The Counter  meds with your GP first

Keeping a diary is also really important . As getting to know your triggers is vital . There are sections here on triggers

Reducing your ingested histamines and foods which trigger histamine release can help reduce symptom severity , esp at this time whilst you get to the right doctors . I use a low histamine diet from the international idiopathic urticaria society .

I will stop there I hope this helps

Josie

Hello Vinnie,
My grandmother had lymphoma and battled it for 10 years. There were not many months where we were not undergoing chemo, radiation, surgery or the battling severe effects from one of those. Check into the side effects of your particular chemotherapy treatments.  A lot of the chemo before it is started you are given antihistimines and steroids to prevent severe reactions, usually intense flushing and itching, numbness, burning were still lucky benefits along with diarrhea etc even with the pre medication before the chemo was administered. So definately check into the side effects of your chemo. Also any medications you are currently on. Are you on Tamoxifen? I believe it causes itching and flushing also? Keep educating yourself and investigating all avenues!

Hi Vinnie,
I just wanted to know how youre feeling now?? You said you had a few other anomalies... can you tell us what they were?? I have a few questions to ask that might point you to an answer.

Have you seen your doctor again this week and what does he say?
Have you tried any antihistamines to see how they affect the way you feel?
Do you have any family history of problems with the liver?
Did you ever have a Tryptase level drawn? Ask for one. Ask for urine for histamines too.
Have you had a recent MRI or CAT scan and do they plan on doing one?

Liver problems alone can cause itchy skin, but usually not the flushing.  Are you still having  episodes of flushing?

I hope you are feeling better and have a restful calm weekend
hugs
Ramona

Hi Vinnie ,

I was thinking about you earlier Nice to have you back.  I am pleased you are going to a proper dermatologist

many hugs

Jose

Gosh, Joan, those symptoms line up with Masto symptoms!!!


No wonder the doctors ask us what meds we take in the process of working us up!!

You are right that contraindications and ingredients are very important.  However, I have never seen a contraindication that warned people with mast cell disorders.  In mast cell disorder patients it can be deadly not to read the potential side effects.  I don't tend to obsess on them, but I do want to know what to watch for.

I realize a lot of drugs have huge lists based on their small studies, and that the drug companies have to list side effects even if one person had a hangnail while taking it.  (Well, maybe not that extreme).  Still, if I'm starting something new, and I've had three serious anaphylactic reactions from medicines, I read everything I can.  Most of the time I can get a feel for whether I can tolerate it or I can take a tiny dose first to see what happens if the potential side effects look hazardous for me.

Hi All ,

I think I need to clarify . I am not having a go at anyone and I am very careful with medications . I find this works for me . It is mainly due to the example below  . I do start with small doses and work up as you have said Joan . I recommend this to others .

I just wanted to make the point That we need to remember what has come first , as our doctors may blame masto symptoms on the drugs , when in fact these symptoms have already been present .

I want to share my experience ;-

In the first  reactions , I hadn't had any steriods previously / was off them when I reacted .

From June 08 , after 9 epi pen level reactions , I was given a rescue package , which had steriods in . I was shocking every 3 weeks from dec 08 . So from June I was put on 40mg when I shocked , titrating down after a week at 5mg a week . So I was not getting any lower than 25mg .( 3 weeks )  As a result of steriods for 8 months I put on 42lb in fluid and was extremely swollen , blue on minimal exertion and very unwell . Inc stridor in my reactions .

I had a new MD .  they blamed my whole illness on steriods . This doctor had not met me before and I continued to say I had these symptoms before , which i did ,

I knew they were wrong .

So , I spent a month in hospital , to reduce the steriods observed , being patronized by a consultant , who I got so fed up of .

On a ward round , when he said i was going blue for no reason , I explained  that  he had not worked me up for carciniod , hashimotos thyrioditis or IGE anaphylaxis or HAE , in front of  all his staff , that  it could be any of these .

Throughout the whole month I did what i needed to do to prove my point . I was good . Even when he said he was not looking for a diagnosis on this admission .

Since the steriods have completely gone for therapeutic purposes , over 5mg prednisalone a day . I am still ill ,  have daily symptoms and shock .

I knew I was ill and it was not just steriod side effects .

I have had an apology

I have much respect for steriods , that they work for us , but have side effects we need to respect . I have days where I wish they had been right .

So , this is why i said it is important to see the symptoms that have pre existed .

I can see the connection with the tamoxifen side effects and I am glad Joan and Lisa have spotted it  

I am bag of examples :- another is i was put on hydrocortisone tablets . This is like prednislone but more bio available . To which I had vomiting and diarrhea .( profuse and continuous )  Which are known side effects . I knew it was more than that .

I was swapped to liquid hydrocortisone without maize starch - which I knew bothered me but the hospital doctor did not believe me . The vomiting and diarrhea returned to my normal levels , which are controlled in the most part .

So :- My established symptoms were made worse by a trigger to an unbearable level , in which my meds were not staying down .

When the preparation was changed , I returned to my normal symptoms . So , It was not the drug but the maize . I remain on hydrocortisone at the same level as is naturally produced as my adrenals are not working . I still don't have any side effects from the hydrocortisone

I hope this has clarified my view point

Josie