Cutaneous Mastocytosis

• By CSIII
• Reply 3706636
• January 15, 2013 at 12:54 am
• Report post

Ray
I can see how both of you would be depressed. To know that you care enough to have used his special soaps, and so on, tells me that you want very much for this relationship to continue. Sometimes it can be the smallest thing that will have the greatest affect. Things as simple as a cologne or hair dressing or lotion can serve as a trigger. It could be something neither of you notice overtly, but it is there. Another thing that could be contributing to his reactions could just be the stress of a new relationship. Masocytosis is a peculiar disease that sometimes seems to defy logic. Take things slow. It's going to take lots of patience on your part. Let him know you are not put off by his disease and become a partner in helping him cope. This will take a lot of work on your part, but if you care as much as you say, you can do it.
My best to the both of you. Dale

• By KarieARadtke
• Reply 3707273
• January 15, 2013 at 9:34 am
• Report post

Great advise Dale and best of luck to you Ray and your friend! Your friend should also check with the doctor about meds, he may need more or something in addition to trying to find the triggers.

• By itsallgoodnow
• Reply 3707489
• January 15, 2013 at 10:46 am
• Report post

I have TMEP (cutaneous) Mastocytosis but it flares up mostly internally. I have had skin reactions too. I also have subcutaneous reactions (angioedema). As Dale said, stress can be a trigger. Also, I became "allergic" to Downy fabric softener after using it for 30 something years. I have had reactions to commercial air fresheners in restaurants. Many cleaning fluids trigger me (not always in the same way - this is part of the 'defying logic'). Some meds, especially Inactive ingredients set me off. I can take one generic brand of something but not another. The funny thing is ... a Pharmacist and I tried to find a common denominator in the ingredients of different meds I react to but can't find any. Things we think it could be are found in meds I can take. Makes absolutely no sense. Sometimes something bothers me alot, sometimes a reation isn't noticable.
I really wish some doctor or research center would unlock the secret of this disorder and we could all have relief.
In the meatime, I really wish you both happiness and wellbeing! He really is lucky to have someone who cares and wants to understand and help. You are a rare jewel. I agree with Dale's advice about taking it slow. Excitement of a new relationship can create reactions that the body interprets as stressors that either calm the immune system or aggrevate it. It's not on a conscious level. Karie has a good point about talking to a doctor familiar with Masto about this. It may be a tweak of meds will help alot!
Denise

• By pendelphin
• Reply 3708295
• January 15, 2013 at 3:12 pm
• Report post

Im sorry to hear about your problems, I have systemic masto, my main triggers are, change in temperature going from one to another, perfume, had a bad reaction in hospital waiting room, because of the perfume a lady was wearing, at christmas I had a doll bought for me one of thoes real looking ones, the plastic made me ill, also like other people have said. Stress, it could be an item like your handbag, jewellery, etc hope you manage to sort it outwishing you both happiness for future x

• By josie75
• Reply 3708783
• January 15, 2013 at 5:56 pm
• Report post

Hi Ray xx

My visitors use my soap use no fragrances or deodorants .Eat my food etc .As Dale said sometimes things happen but doing things like keeping clothes at his you chnage into as soon as you arrive so your bringing triggers from home with you will help xx Things like leaving handbags at home and just bringing as little as possible in his environment .Also any stress or excitement can trigger things so this may not be you xx His symptoms dont sound very controlled . Cutaneous mastocytosis can be controlled .It can also affect the whole body and this needs stronger meds . I am not suggesting he medicate just because but we have lots of info and advice and maybe in you coming here we can make his life better than it is .We have strong communities and good doctors xx In the meantime he could increase his meds to help control internal triggers while you work on others xxx You are amazing for not running a mile xx I have site on mast cells - www.iamast.com .feel free to message me xx Jose

• By adamsray344
• Reply 3718456
• January 18, 2013 at 7:02 pm
• Report post

Thank you all for your very helpful responses!!! Earlier this week he had a bad relapse. I am letting him know that I am there for him, I feel that is all I can do for now. He can't find the cause of the trigger for this relapse. We are trying to figure it out. All I hope is that he doesn't give up on living a full life and on us. It would kill me to know he is living a systematic routined life with little to no hope for happiness. Any other suggestions would be helpful!!
Thanks
Rayray

• By CSIII
• Reply 3723174
• January 20, 2013 at 3:20 pm
• Report post

Hi Ray
There are two things you should both consider. First, as Denise said, find a doctor familiar with mastocytosis. This is not one of the "normal" diseases seen by doctors. Many have never heard of it, or if they have, they really know nothing about it. You might be surprised at how many of us have been the doctors first patient with this, and how many of us have been teaching our doctors, or learning with them, about this disease. The second is advice I give to anyone new to masto. Keep a journal, not of just what has been eaten, but things in the environment as well. Even the weather can cause reaction in many of us. Many are sensitive to change in temperature as pendelphin said, some to heat and others to cold and some just to the change. Also take note of situations, whether stress inducing or calming to realize what may cause a reaction or calm what could have been a reaction. It's a crazy disease with so many faces. It is not easy to find two of us alike in our symptoms or our triggers. There are some common things to avoid that you will learn about from Josie and her web site. But that is not a definitive list for everyone, just a good place to start. Don't become discouraged. This not something that has come along with a "simple" solution. This is not a one size fits all disease, but it is not a disease that cannot be controled with lots of work and patience and with the help of a doctor familiar with mastocytosis. Let us know the region of the country you live in and perhaps we can help you with doctors in your area that can help.
One other thing, don't be afraid to ask questions. There will be some one of us that understands exactly what you are asking about because they have experienced it themselves. And if you feel like going on a rant, we understand that as well.
I wish everyone my best. Dale