We know that mastocytosis cannot be cured.
That only means we do not have a cure today. But research is progressing, and quite honestly, I have got the feeling that research is speeding up due to the herculean effort of some pioneer doctors and a renewed realisation that there may be more people affected by this disease than originally thought.
Don't quote me on it, that was only my personal feeling.
So, in the meantime, until we collectively (meaning doctors AND patients) find a cure, what the heck do we do to make our lives a bit easier?
There are several things that create the symptoms:
1) Too many mast cells are being produced
2) The mast cells release mediators for the wrong reason
3) Too many mediators everywhere are causing havoc in the tissues, organs, vessels, nerves, you name it …
4) Too high a concentration of mediators
So, if we want to get some semblance of control, here are the things that we can do
- You can inhibit mediator production, and there are various approaches to doing that.
- You can inhibit mediator release or stabilize the mast cell, and there are a variety of treatments for doing that.
- You can block the mediators after they've already been released (for example, with antihistamines).
- You can try and avoid adding histamine to your system by controlling your diet
- You can undertake a usually futile effort to try to kill the surplus cells
There is currently no cure for mastocytosis, but there are a number of medicines to help treat the symptoms:
- Antihistamines block receptors targeted by histamine released from mast cells. Both H1 and H2 blockers may be helpful.
- Leukotriene antagonists block receptors targeted by leukotrienes released from mast cells.
- Mast cell stabilizers help prevent mast cells from releasing their chemical contents. Cromolyn sodium oral solution (Gastrocrom / Cromoglicate) is the only medicine specifically approved by the U.S. FDA for the treatment of mastocytosis. Ketotifen is available in Canada and Europe, but is only available in the U.S. as eye drops (Zaditor).
- Proton pump inhibitors help reduce production of gastric acid, which is often increased in patients with mastocytosis. Excess gastric acid can harm the stomach, esophagus, and small intestine.
- Epinephrine constricts blood vessels and opens airways to maintain adequate circulation and ventilation when excessive mast cell degranulation has caused anaphylaxis.
- Salbutamol and other beta-2 agonists open airways that can constrict in the presence of histamine.
- Corticosteroids can be used topically, inhaled, or systemically to reduce inflammation associated with mastocytosis.
- Antidepressants are an important and often overlooked tool in the treatment of mastocytosis. Depression and other neurological symptoms have been noted in mastocytosis. Some antidepressants, such as doxepin, are themselves potent antihistamines and can help relieve physical as well as cognitive symptoms.
In rare cases in which mastocytosis is cancerous or associated with a blood disorder, the patient may have to use steroids and/or chemotherapy. The agent imatinib (Glivec or Gleevec) has been found to be effective in certain types of mastocytosis.