As clinical trials show Imatinib (Glivec, Gleevec) is not effective in most mastocytosis patients with C-Kit D816V mutation. But in other forms of mast cell activation syndrome it seems to relieve the symptoms as some cases show.
As I suffer badly from MCAS without D816V I am wondering why my doctors are unwilling to give it a try. Is it only because of the immense price of almost 30$ per 100mg pill?
Novartis just lost its case against Indian manufacturers of Imatinib, so I am considering going there and giving it a try. It sells there for about 2$ per pill.
http://en.wikipedia.org/wiki/Novartis_v._Union_of_India_%26_OthersIn my understanding improvement should show pretty fast. Of course I am scared of serious side effects but I am not willing to life much longer with all that fatigue and pain.
Another ray of hope is Masitinib: Phase III should end in June 2013.
http://clinicaltrials.gov/ct2/show/NCT00814073 Approval then may need another 6 months.
What I found at pubmed regarding MCAS and TKIs:
Mast cell activation syndrome masquerading as agranulocytosis.
Afrin LB.
http://www.ncbi.nlm.nih.gov/pubmed/22338992 Quote:Imatinib immediately increased neutrophils from 0% to 25% but did not help symptoms; subsequent addition of aspirin increased neutrophils further and abated symptoms.
Polycythemia from mast cell activation syndrome: lessons learned.
Afrin LB.
http://www.ncbi.nlm.nih.gov/pubmed/21642812 Quote:Imatinib 200 mg/d rapidly effected complete, sustained response. Diagnosis of mast cell activation syndrome is hindered by multiple factors, but existing therapies for mast cell disease are usually achieve significant benefit, highlighting the importance of early diagnosis.
Mast cell activation disease: a concise practical guide for diagnostic workup and therapeutic options
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069946/ Quote:However, in some case reports, imatinib and dasatinib have been significantly effective at relieving symptoms. In spite of potential significant adverse effects of these drugs, a therapeutic trial may be justified in individual cases at an early stage.
Dr. Afrin's presentation. He tells about 4 cases of MCAS where imatinib showed immense efficacy.
With slides:
http://www.mastocytosis.ca/2011%20MSC%20Medical%20Lecture%20with%20Slides.pdfWithout slides:
http://www.mastocytosis.ca/2011%20MSC%20Medical%20Lecture%20without%20slides.pdf...