Thursday, September 2, 2010

Winny Big Lips

Angioedema is Not My Friend

Went to my new immunologist Dr. Calm today to see about my hive outbreak.  He has reviewed my records and thinks I may be having a flare up of mastocytosis.  I told him that I have had intestinal biopsies and a tryptase level taken and they were all negative for mastocytosis, and he said that negative tests did not rule out mastocytosis, and that there wasn't any single test that could rule out mastocytosis - symptoms said more than tests decide the diagnosis unless you showed a definite postivie test. My continued allergic reactions and growing list of medication sensitivities (apparently muscle relaxants are a known issue for persons with mast cell disorders so no wonder I had problems) hives angioedema and the abdominal cramping I get with a bad hive "flare" are all symptoms.  Headache can be a symptom and multiple chemical sensitivity problems.

I got a bunch of blood tests done (ha ha - I was prepared and drank a lot of fluids before going there!!!) No problem with the blood draw although they had me marked to use a hypodermic and butterfly instead of the standard vacutainers so I guess they keep track of people like me who have trouble with blood draws - efficient for a change!!  I am on prednisone with a taper per my request because my hives tend to double back (get worse) if I don't taper prednisone. 

I am going back on Gastrocrom, a medication you drink four times a day with water - it is supposed to decrease the number of mast cells in your digestive system.  It's not very convenient to take because you have to carry these little plastic vials of liquid with you everywhere.  The pharmacy has to special order it, but I had some from the last refill I did about a year ago that should still be good (it's light sensitive so you keep it in a box of foil wrapped packages in a dark cabinet).   Dr. Calm said that it won't help my hives (it certainly didn't do that before) but it should help some of the belly pain.  Hoorah for that!  I have to take 8 vials per day, and its sorta flat salty tasting even diluted.  Guess its no worse than Gatorade!

The hives are some better tonight after prednisone although my angioedema (swelling of the lips, under the eyes, ears, inside the ears, my vocal chords, inside the nose, and it feels a little like my tongue at the moment, plus my feet and hands off and on) is worse.  It always is worse on day two - don't know why but when the hives starting popping back this morning inspite of my medication of the night before I knew I better get to Dr. Calm to get something to stop the progression.  I worked a couple of hours, but didn't get to stay as my face had started to swell.  I tried to skedaddle before the lips became Angelie Jolie lips. 

I was a bit upset this morning, not only because prednisone kills my stomach and pancreas, but because Dr. Calm wanted me back on the Gastrocrom which is a pain in the patootie and he wants me to consider taking cyclosporin, a heavier duty immune suppressant, to get things back in control.   I know the longer the hives stay flared up the more danger I have from anaphylactic reactions, which is truly life threatening, but more medication is not what you want to hear when you already have to travel with a handbag full of medication.

I go back in a month and maybe the blood tests will be the decider for me on the clyclosporin.  My blood sugar goes too high on prednisone, my body rebounds from it so maybe this will do the trick quickly.  Dr. Calm did say I probably should only take Botox for The Headache if I have a tiny tiny test dose first maybe in the upper arm to see what happens, and it would be no guarantee that I would not an allergic reaction.  I guess Dr. Hannibal Smith is going to have to take that off my possible treatment regimens, because kind of like The Headache I try very hard not to rile The Hives.

I'm traveling next week.  Praying that I will be able to stick it together for another week.  I would love to have a full month of good health and feel back to my normal level of work.  At least now I thank heaven my very very nice bosses have a trainer, and now a medical billing/coding specialist! If I fall by the wayside like the walking wounded I am I won't be leaving them in a bad place personnel wise.  I just need to hang on for a few more months and get the new guy (who is soooo organized and willing to learn!) trained,  then some of the sleepless nights where I worry about my employer I can worry about something else!  You know, if I didn't have supportive bosses and co-workers I would be SOL (or FUBAR as we said when I worked with military veterans).  This is a great advantage of working where I do, and the awful dilemma of having landed a job I love with people I enjoy but physically difficult for me to be well enough to work productively.  FUBAR indeed.

My boss, The Big Guy, turns 60 tomorrow. In my family not a lot of people live to hit 60 so I hope he can celebrate with happiness.  I'm gonna be dancing the happy dance if I make it - only nine more years to go!  At the rate I seem to be accumulating maladies I fear its going to be a tight race to the finish line for me.

I am including some links to discussions about mastocytosis by specialists, and how it is often missed as a possible diagnosis.  Most adults who are diagnosed with mastocytosis are middle aged by the time they get a diagnosis.  Maybe it is my causitive agent for everything - The Headache, The Belly, and The Hives.  I'm afraid The Legs can't be blamed on it.  Worried about the cost of additional meds.  Sigh and sigh again.


  1. I most certainly hope that you live past 60 years old!

  2. I certainly hope so too!

    I try to be realistic tho. Just based on my own experience from 40 to 50 (cancer, mast cell disease, radiation therapy issues, SOD dysfunction, chronic and acute pancreatitis, hemicrania continua all happening in the last 6 years) 50 to 60 will either be better or a fast paced descent! Still on the downward slope at 51, but I keep hoping for an upturn!

  3. Drinking lots of fluids before giving any blood is a definite helpful hint we should all follow. It makes it so much easier. It was nice that they had you on a special draw list. 50 to 60 and beyond will be much better!

  4. MP: My nightmare is almost always I am dehydrated when emergency blood draws or IV's are started, so I am so glad I was able to gulp down a few glasses of liquids well before the draw time. You have to give it a little time to get through your system to the veins.

    I'd be happy with 60, hoping for beyond. My dad only made it to 58.