(Archived from kciucci - original forum)
kciucci

I am new to this so forgive me if I am wrong. I see an oncologist for what he calls my orphan disease. But he is the only doctor around my area willing to listen to the famous list of Masto symptoms. I was diagnosed with UP as a child. I believe it returned in early adulthood as systemic masto. When I read all your posts it is so hard not to scream.. that is me , too .. that is me !!  Anyway, my oncologist prescribed Gastrocrom oral solution . And three pharmacies have told us you cannot get it anymore .. only some eyedrops ?? Is this wrong.. are we off base here? Can anyone tell me if and what is available for the bone pain and intestinal issues? I am on hydroxizine and famotidine as of now. (this has reduced slightly my symptoms.. ).
Any help in this matter would be fantastic .

K
20 May 2009 06:03 PM

(Archived from kciucci - original forum)
kciucci

Yes.. East Coast (PA).. and I had it once before.. but now they are telling me at a CVS here that it is not available? Only the eyedrop.. is this correct? If so , what else works for the bone pain and gastro problems.. I get major pain in my stomach that will last for days .. then go away only to come back at another time... the bone pain is relentless...

Great site !!

K
20 May 2009 07:26 PM

(Archived from thefoxx - original forum)
thefoxx

KC - I'm right outside of PA (South Jersey - right near Philly).  Have you tried other pharmacies?  Does your insurance offer mail order (which is usually the cheapest way to go - gastocrom is an expensive drug).

Julie
21 May 2009 09:07 AM

(Archived from jillg - original forum)
jillg
guru - member

CVS will special order it for you, it only takes a few days to get it in.  Have them order up an extra box to keep on hand in case you run out.  I can get mine here in Michigan in about three days.
24 May 2009 06:58 PM

(Archived from thefoxx - original forum)
thefoxx

Just an update - I just ordered mine through Wegman's and it took them 24 hours to get it.  No letter necessary - probably because I already have confirmation of SM via BMB.
02 June 2009 08:23 AM

(Archived from abbagailw - original forum)
abbagailw

Hi there,  I just found this site and have seen a couple of posts about Gastrocrom.  I have been so very sick for over 20 yrs now and was diagnosed with systemic mastocytocytosis in 1992.  And, I's been quite the rollercoaster ride eversense.  I have been on so many cocktails of meds to keep things under control and not having very much luck doing so.  Finally, I found some info on the net which included taking Gastrocrom, then I printed out the info I had and brought it to my Dr's office with hope that she would take a look at it since she has told me that she does not know much about the disease.  She took the time to read everything and now has a great deal more insight into what she is actually dealing with with me.  She decided to give gastrocrom a try and within 3 days I felt like a different person.  Thank God because my patience has been running out as anyone who has it will confirm that many times during a bad flare, some do admit wanting to go to sleep and not wake up.  I do still take both h2 and h1 hystamine blockers as well as anti-hystamines as well as a couple other meds due to degenerative disk disease.  But, now after over a week on Gastrocrom, I actually feel better tummy and gut wise and am being able to enjoy a bit of life now and then.  Things are now tolerable and I really hope it lasts.  As far as getting the drug, cvs told me to give them a weeks notice and they will get it no problem.  I hope everyone is doing as well as can be expected!  But, if you have not tried Gastrocrom, if at all possible, try it.  Ya never know!!  Big Hugz For All!!  Abbagailw
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Abbagailw
06 June 2009 04:34 PM