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Finally someone that understands my plight. Yes, this disease is a nightmare and when I have an attack, my face almost gets disfigured due to extreme swelling and allergy type breakout. This in top of extreme itch that makes me want to use a knife and peel my skin off. One of my doctors states there is now a vaccination for mast cell, with conditions. First off you must have experienced this under Dr care for at l ast one year before being considered for the vaccine. He stated currently it is basically out of financial reach for those who need it (such as me) because it’s over four thousand a month, one vaccine and must be continued for around ten-twelve months in order to become effective. I failed to write down the name as he cost was enough to know I’ll never be getting it. Oh, and insurance as I am on Medicare, won’t pay any portion. This may change in the future however I shall not see this in my lifetime more than sure.
Replies to "Finally someone that understands my plight. Yes, this disease is a nightmare and when I have..."
Ah, good to hear such kind and hopeful words. I need that hope as do many. Any and all information on MCD is much appreciated.
I haven’t heard of any vaccinations for mast cell disorders. Is this something brand new that Mayo is trying?
Or maybe Did your doctor mean Xolair? It’s a shot I am seeing used more and more often. It has its own risks and side effects, but for those it works for it seems worth it. Insurance can cover xolair, or one of the others in the same class or medication, even Medicare if your doctor prescribes it correctly. S/he may not know how to do so. If he was recommending one of this class of drugs insurance only covers it currently for chronic urticaria or asthma patients, if you have certain test results. So if you have chronic hives or (I think) high leukotirines causing asthma like symptoms, it may be doable! Worth looking into if you haven’t found other treatments helpful.
There also are other treatments, many of which I mentioned in my reply above.
Best wishes on finding your best health within this weird and awful disorder!
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@jennybay that is really horrible that there is something that could probably help you but is beyond reach, financially. Maybe they won’t pay because it’s effectiveness is not yet proven. If so maybe it will eventually be covered.
The pharma companies are so greedy. Young people who want to make large incomes typically gravitate toward pharma, knowing the opportunity for big bucks is there. A young woman we know works in that field and is easily a millionaire at this point, with many perks.
JK