Hi Tim,

Welcome to the forum!  Sounds like you've been through a lot. How do you feel now, if you don't mind my asking?

First of all, most ISM patients do not progress to aggressive disease.  That is very rare.  Dr. Akin, one of the leading researchers on mastocytosis told me that SSM patients often remain in that category their entire normal lifespan.  I don't think the researchers know yet why some people progress and others remain stable.

We are in the process of asking the mast cell disease experts whether or not there's anything we can do to prevent progression.  Some people think that avoiding triggers is important.  Some think we should keep our mast cells as stable as possible, using meds like ketotifen or gastrocrom.

There's a ton of information on this forum about all sorts of topics.  There is also a lot at TMSforacure.org?

Most patients feel better if they do what people with other chronic and/or auto-immune diseases do, which is to keep stress levels as low as possible and to take really good care of ourselves.  That is, eat a healthy (and low histamine) diet, get regular exercise, and plenty of rest.  

IMO, keeping our digestive systems functioning properly is a key to being healthier.  If we have malabsorption problems, we aren't getting the nutrients our bodies need to repair themselves.  

I believe that taking anti-inflammatory medicine and/or supplements might help in the long run.  One researcher, Dr. Theo Theoharides has a formula he recommends for mastocytosis, which is called Algonot.  There are several versions of it, and it looks promising.  Definitely run the ingredients by your doctors before you try anything new.

Some of us on the forum also have Hashimoto's thyroiditis.  Were you tested for antibodies?

If you have any other questions or want to post your current meds to see what others think about them, please do.

One thing for sure is to carry your epipen(s).  Most of us carry a twin-pack, just in case.

Welcome to the forum, Tim! Given your description, you are in a good position and don't need to worry.  I wonder what your symptoms are when you do drink alcohol? Obviously something made you realize that you were having symptoms, and this could provide us with a bit more info for us to offer advice.

Like you, I am highly triggered by alcohol (as are MANY mast cell people). I go into fullblown anaphylactic shock from many things, and one of them is alcohol. I knew something was not right in the beginning because whenever I had even one sip of alcohol, I would instantly start aching in every muscle of my body. It was very strange. So, that was my first clue. As you can guess, you should NEVER have even a taste of alcohol at any point in your life. The reason is that you don't want to get ill, AND you don't want to tempt your condition into progressing further.

I am a strong believer of avoidance for triggers. That is only logical that if you avoid triggers, you will stay stable and continue enjoying a happy life. Generally, I would tell someone that they need to be on the proper preventative medicines and avoid triggers. In your case, it doesn't sound as if you need any meds except as a rescue medicine to handle the symptoms if you trigger. Now, if you only trigger to alcohol, that should be easy to never need a rescue med as long as you don't drink any alcohol. If you begin triggering to other things, though, then you would want to identify as many triggers as possible, avoid them, and take daily preventative meds. It really sounds as if you are much luckier than many, though, and don't need the daily meds. The bottom line is to let how you feel be your guide.

By the way, ISM (abbreviation for your diagnosis), is not going to change your lifespan. Just be aware and make any necessary adjustments as needed.

Hi Tim!!
I just wanted to welcome you here, too! There is so much information you need to read, like Triggers, Low Histamine Diet, Symptoms. Did the doctor put you on any meds? Which ones? I live near to you (I think) Im outside of Gainesville in the boonies--about one and a half hours from Jax...Great to have you here!Hugs
Ramona

Hi Tim!!   Welcome to our family!!  I hope you find yourself at home amongst us.  Weve got several men who are also masto patients and we have one member who is an aggressive masto patient - perhaps our guys will pop in to greet you too.  They tend to let us women do all the talking, since we tend to do it so well!  

Tim, so much of this disease depends upon us.  As Heather said, it's very possiblet that you have triggers that you weren't even aware of.  Before my masto came out of hiding, I would be doing things in the heat and then begin feeling really, really weird, but I could never figure out what was happening!  I remember, I went to an outdoor wedding one day and got stuck sitting in the bright sunshine.  The day wasn't too hot, but it got me so hot and uncomfortable that I began to feel sick.  I thought perhaps it had pushed my BP up and that's why I was feeling so bad, but now, when I look back, it was that I was on the verge of anaphylaxis!!   I avoid the heat and sun like the plague now cause it will get me so sick so quickly that it's frightening!!  I feel like a vampire, the way I avoid the sun!!  So, try to listen more to your body and be sensitive to what it's telling you.  I have a feeling you do have more triggers than you realize.  

By listening to your body, by trying to see what makes you feel worse, and avoiding it, you can live a pretty healthy life.  

Lisa