Hi Redbird!

Sorry for the episodes!  They're miserable and worse is when there seems to be no rhyme or reason to it all!!

A while ago the authorities would tell you that you can not get mastocytosis of the kidneys without fibrosis and so they would nicely dismiss any kind of issues you would have seeing that this is exceedingly rare and unusual to happen.   Well, recent research implicates the mast cell and the mediators in causing renal fibrosis and thus kidney failure.  For those who have systemic mastocytosis this is how the possible eventual proliferation of the MCs into the kidneys would then occur once fibroisis has sent it.   However, for those of us who don't have SM, our kidneys do take a beating but without anybody considering anything out of the ordinary.  There is one article which Dr. Molderings connects kidney stones to masto, so this is a possibility in your case.   But I would think that your kidneys are acting up as a direct connection to the mediators and the constant, but extremely slow wearing attack they are causing to your kidneys.  

Now, as to what you can do about it?  GOOD QUESTION!!   And since there is not a single researcher out there who is looking at the kidney in mastocytosis, excepting Molderings, you and the rest of us are up a creek without anybody knowing what to do about it.  

I, however, have ONE nephrologist researcher who has some suspicions as to what it is and how to help your kidneys, but it's only one doctor and looking at my case, so I can't even say that it will help anybody other than me.  And even then, this doctor us also unsure as to how much it might help me cause he's waiting for us to gain more understanding to the rest of my case in order to figure this out better.

Okay, here goes.   The nephrologist working with me thinks that the mediators are leaving my kidneys vulnerable and thereby open for attack.  He feels that the anaphylaxis and constant mediator attack as well as my case being auto immune in nature is wearing down the levels of cysteine which is protective to the kidney.   So, he  recommended that I take N-Aceteylcysteine 600 mg once a day for about a week or two as a means to rebuild those levels.  Sure enough, this helps me!!!  I takes the cloudy urine and intermittant pain and makes it totally disappear!   When I've regained that balance then I take the medicine at lower doses, 150mg about once ever 3 or 4 days.   This helps to keep things balanced.  

There is no way to know if this will help you.  Thankfully N-acetylcysteine is not really "medication" in that we have cysteine being produced in our bodies anyway.  This medication is a known expectorante and wonderful for the lungs when you've had a bad cold.  It is being tested for other off-label uses and is being considered excellent as a "suppliment" being that it is more like taking vitamines and minerals.  Yet whether or not you can tolerate it is also an issue.  It has an orange color and flavoring and if you react to those things, you may end up reacting to it in it's more popular form - packets of granulated powder to be mixed with water.

It's not much to go on, Red, but at least it's a beginning.


As to the epi, this is something that you really MUST speak with your cardiologist about.  Once we go over our mid-50s this becomes another issue as to whether your heart can handle the epinephrine itself.  I know, we're between a rock and a hardplace - what's worse for us, the strain of anaphylaxis or the strain of epinephrine????   I really don't know and only your doctor is going to have that answer for you.


I hope this helps!

Lisa