Guest guest Posted October 20, 2001 Report Share Posted October 20, 2001 Hi, all. Gastrocrom, as you probably know, is a medication that was developed specifically for mastocytosis (mast cell disease). It stabilizes the mast cells and prevents them from degranulating, hence reducing the histamine and other chemicals being released into the system. There is also a cream that some of the masto patients use, which they make themselves from gastrocrom. Because of the way this drug works, it seems to me like it should be extremely helpful for CU patients as well. Got my hands on some, and I am so amazed at what it has done for me. As you know, I suffer from some major stomach involvement (GERD and severe diarrhea) with my CU. I started taking gastrocrom a few days ago, and already I am getting relief. Sorry to be graphic, but I have had major, " get the hell outta my way, I gotta go NOW " diarrhea for 13+ years, and these past few days, everything has been normal. My stomach does not hurt for the first time in ages, the reflux is backed off, and I am getting very little hives. The few that do pop up, I dab a little masto cream on them, and they are gone within 15 minutes or so. It was actually funny - I woke up the other morning, and I felt weird...really strange. I'm thinking, 'oh great, now what's wrong' and started doing an assessment; then I realized what the problem was. No aches, no pains, no tummy troubles, no itching, no headache - I felt like I haven't felt in years! I don't know how easy it would be for any of you to get your hands on this stuff, since it is indicated specifically for masto. But if you have a doctor that is willing to try things, it might be worthwhile to ask for it. It's expensive, but what is feeling normal worth? Plus, if we can show that it does help CU patients, maybe a doctor out there will take note and push for it to be made easily available to us as well. Air hugs, Jackie Life is tough, but I'm tougher. ----Original Message Follows---- Reply-To: urticaria To: <urticaria > Subject: Gastrocrom Date: Sat, 20 Oct 2001 10:30:37 -0400 Here is some good information on Gastrocrom http://www.centerwatch.com/patient/drugs/dru92.html May the wind be always at your back. mtnbiker@... mountainbiker41@... ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ If you do wish to unsubscribe then you can click on the following link: urticaria-unsubscribeegroups ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ This list is in the service of those who suffer from Chronic Urticaria (hives). We strive to support and lift each other as a worldwide cyber-family. We share whatever needs to be shared to help one another in our struggle with Chronic Urticria. Information provided in this forum is not to be taken as medical advice. Always consult your health professional before trying anything new. Any posting that is off the main topic of Chronic Urticaria, we post with a prefix of NCU -. This is done out of respect for those who do not wish to read such postings. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2001 Report Share Posted October 20, 2001 WOOOOOOHOOOOOOOOOO JACKIE!!!!! That is music to my ears!!!! I hope it does continue to work for you!!!!! I have some " special " cream made up if anyone wants to try it. Keep us posted on how it works for you in the next few weeks!!!! I am so happy I could burst!! Love, ~Alena's Mom Gastrocrom > Date: Sat, 20 Oct 2001 10:30:37 -0400 > > Here is some good information on Gastrocrom > http://www.centerwatch.com/patient/drugs/dru92.html > > > May the wind be always at your back. > mtnbiker@... mountainbiker41@... > > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > If you do wish to unsubscribe then you can click on the following link: > urticaria-unsubscribeegroups > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > This list is in the service of those who suffer from Chronic Urticaria > (hives). We strive to support and lift each other as a worldwide > cyber-family. > > We share whatever needs to be shared to help one another in our struggle > with Chronic Urticria. Information provided in this forum is not to be taken > as medical advice. Always consult your health professional before trying > anything new. > > Any posting that is off the main topic of Chronic Urticaria, we post with a > prefix of NCU -. This is done out of respect for those who do not wish to > read such postings. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2001 Report Share Posted October 20, 2001 Dear Jackie... What a wonderful message!!!! You describe so well that feeling of waking up and checking to see what feels strange..... taking inventory....and for once it was the absence of discomfort. Wow! What a great moment that must have been. I am so happy that you could actually feel better than you have in years. And in addition this may be a real discovery that could help lots of us!!!...How exciting!!! Best wishes....Tree Gastrocrom > Date: Sat, 20 Oct 2001 10:30:37 -0400 > > Here is some good information on Gastrocrom > http://www.centerwatch.com/patient/drugs/dru92.html > > > May the wind be always at your back. > mtnbiker@... mountainbiker41@... > > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > If you do wish to unsubscribe then you can click on the following link: > urticaria-unsubscribeegroups > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > This list is in the service of those who suffer from Chronic Urticaria > (hives). We strive to support and lift each other as a worldwide > cyber-family. > > We share whatever needs to be shared to help one another in our struggle > with Chronic Urticria. Information provided in this forum is not to be taken > as medical advice. Always consult your health professional before trying > anything new. > > Any posting that is off the main topic of Chronic Urticaria, we post with a > prefix of NCU -. This is done out of respect for those who do not wish to > read such postings. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2001 Report Share Posted October 20, 2001 Thanks, Tree. It was and still is very exciting. (happy dance time!) I've been reading everything I can find about this medication, plus asking questions of people who know more about than I do. One of the people I asked is our own walking encyclopedia, Myra. One of the things she pointed out to me is that many meds have cross-over uses. Look at the meds we all use: Singulair was actually developed for asthmatics, our H1 antihistamines were designed for use with allergies, H2 antihistamines were made for treating ulcers, and epi was made to treat severe allergic reactions (anaphylatic shock), often from bee stings. Some of us already use a form of the active ingredient in Gastrocrom, which is cromolyn sodium. Some of us have cromolyn inhalers for shocking, and some take Nasalcrom. So we already know that cromolyn can be of help in CU. As Myra said to me, " the short answer to your question is YES absolutely it (Gastrocrom) can be helpful to certain urticarians. " She also pointed out that people who have the gastrointestinal problems (GERD, diarrhea, stomach pain, etc) to the extent that Gastrocrom would help when taken orally, " are probably pretty good candidates for mastocytosis. " As for the cream, which is something developed by some of the people who have mastocytosis, mentioned to me that she tried it on a bug bite (or sting) on herself, and it even helped for that. I believe, from what I've read and from what Myra told me (and she agrees), the cream could help a LOT of CU'ers with the itching and hives. The biggest hurdle is finding a doctor willing to prescribe it. There is a pharmacy I found mention of that will actually make the cream up for you if you have a prescription for it. If anyone is interested, just email me for the address to contact them. Air hugs, Jackie Life is tough, but I'm tougher. ----Original Message Follows---- Reply-To: urticaria To: <urticaria > Subject: Re: Gastrocrom Date: Sat, 20 Oct 2001 18:54:19 -0400 Dear Jackie... What a wonderful message!!!! You describe so well that feeling of waking up and checking to see what feels strange..... taking inventory....and for once it was the absence of discomfort. Wow! What a great moment that must have been. I am so happy that you could actually feel better than you have in years. And in addition this may be a real discovery that could help lots of us!!!...How exciting!!! Best wishes....Tree _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2001 Report Share Posted November 7, 2001 Hi , I tried something different last night. Since I wake up with hives, I decided to smear the cream all over the backs of my hands last night and see if that made a difference. When I woke up this morning, there were only a few small hives, usually they are big and itchy, they weren't at all!! Even the appearance of my hands are different. Usually my hands are reddish, as if they are blushing!!!! Today they almost look normal. What a difference!! I'm hoping the cream worked and it's not just a coincedence! I'll try again tonight and let you know!! Thanks for your help, Ann _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2001 Report Share Posted November 7, 2001 Hi Ann, I would definately bet it was the cream. I have heard many many of the same types of stories. So I say woooohoooooooooooooooooooooooooooo to some relief for you. Love, ~Alena's Mom and anyone who would like the stuff to make the cream I have some extra here I would be glad to share. Re: Gastrocrom > Hi , > I tried something different last night. Since I wake up with hives, I > decided to smear the cream all over the backs of my hands last night and see > if that made a difference. When I woke up this morning, there were only a > few small hives, usually they are big and itchy, they weren't at all!! Even > the appearance of my hands are different. Usually my hands are reddish, as > if they are blushing!!!! Today they almost look normal. What a > difference!! I'm hoping the cream worked and it's not just a coincedence! > I'll try again tonight and let you know!! Thanks for your help, Ann > > _________________________________________________________________ > Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > If you do wish to unsubscribe then you can click on the following link: > urticaria-unsubscribeegroups > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > This list is in the service of those who suffer from Chronic Urticaria (hives). We strive to support and lift each other as a worldwide cyber-family. > > We share whatever needs to be shared to help one another in our struggle with Chronic Urticria. Information provided in this forum is not to be taken as medical advice. Always consult your health professional before trying anything new. > > Any posting that is off the main topic of Chronic Urticaria, we post with a prefix of NCU -. This is done out of respect for those who do not wish to read such postings. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2001 Report Share Posted November 7, 2001 , Do you have any idea of how many times a day I can use this stuff? My hands still look good, I have a few more hives, but they aren't big and itchy and the redness in my hands is still gone!!! I'm so glad that this stuff is working!! Maybe I should eat some of it and it will take care of the rest, LOL!!!! Take care and thanks again, Ann > >Reply-To: urticaria >To: <urticaria > >Subject: Re: Gastrocrom >Date: Wed, 7 Nov 2001 09:10:11 -0500 > >Hi Ann, I would definately bet it was the cream. I have heard many many of >the same types of stories. So I say woooohoooooooooooooooooooooooooooo to >some relief for you. Love, ~Alena's Mom and anyone who would like >the >stuff to make the cream I have some extra here I would be glad to share. > Re: Gastrocrom > > > > Hi , > > I tried something different last night. Since I wake up with hives, I > > decided to smear the cream all over the backs of my hands last night and >see > > if that made a difference. When I woke up this morning, there were only >a > > few small hives, usually they are big and itchy, they weren't at all!! >Even > > the appearance of my hands are different. Usually my hands are reddish, >as > > if they are blushing!!!! Today they almost look normal. What a > > difference!! I'm hoping the cream worked and it's not just a >coincedence! > > I'll try again tonight and let you know!! Thanks for your help, Ann > > > > _________________________________________________________________ > > Get your FREE download of MSN Explorer at >http://explorer.msn.com/intl.asp > > > > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > If you do wish to unsubscribe then you can click on the following link: > > urticaria-unsubscribeegroups > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > > > This list is in the service of those who suffer from Chronic Urticaria >(hives). We strive to support and lift each other as a worldwide >cyber-family. > > > > We share whatever needs to be shared to help one another in our struggle >with Chronic Urticria. Information provided in this forum is not to be >taken >as medical advice. Always consult your health professional before trying >anything new. > > > > Any posting that is off the main topic of Chronic Urticaria, we post >with >a prefix of NCU -. This is done out of respect for those who do not wish >to >read such postings. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2001 Report Share Posted November 7, 2001 Ann, As far as I know you can use it as often as needed. I will double check and make sure though. I know some people just use it as needed and I know a few that use is habitually. Love, ~Alena's Mom Re: Gastrocrom > > > > > > > Hi , > > > I tried something different last night. Since I wake up with hives, I > > > decided to smear the cream all over the backs of my hands last night and > >see > > > if that made a difference. When I woke up this morning, there were only > >a > > > few small hives, usually they are big and itchy, they weren't at all!! > >Even > > > the appearance of my hands are different. Usually my hands are reddish, > >as > > > if they are blushing!!!! Today they almost look normal. What a > > > difference!! I'm hoping the cream worked and it's not just a > >coincedence! > > > I'll try again tonight and let you know!! Thanks for your help, Ann > > > > > > _________________________________________________________________ > > > Get your FREE download of MSN Explorer at > >http://explorer.msn.com/intl.asp > > > > > > > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > > If you do wish to unsubscribe then you can click on the following link: > > > urticaria-unsubscribeegroups > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > > > > > This list is in the service of those who suffer from Chronic Urticaria > >(hives). We strive to support and lift each other as a worldwide > >cyber-family. > > > > > > We share whatever needs to be shared to help one another in our struggle > >with Chronic Urticria. Information provided in this forum is not to be > >taken > >as medical advice. Always consult your health professional before trying > >anything new. > > > > > > Any posting that is off the main topic of Chronic Urticaria, we post > >with > >a prefix of NCU -. This is done out of respect for those who do not wish > >to > >read such postings. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2001 Report Share Posted November 7, 2001 Ann, I was wondering if this cream can be used only on your face or could you use it in sensitive areas such as face, neck or belly? I am very interested in the ingredients, if you have already posted this I'm sorry for asking you to repeat it again. Thank you Sandy B. in IN. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2001 Report Share Posted November 7, 2001 Hi Sandy, I was wondering the same thing. Maybe or Jackie will chime in here. My opinion is, as long as you are careful not to get it into your eyes, I probably will use it on my face. was kind enough to share the ingredients with me, here goes: Your favorite lotion Gastrocrom (cromolyn sodium) glycerin Hope this helps. Sorry it took so long for me to get back to you, I had computer troubles!! take care, Ann >From: sbakerdwg@... >Reply-To: urticaria >To: urticaria >Subject: Re: Gastrocrom >Date: Wed, 7 Nov 2001 20:41:54 EST > >Ann, I was wondering if this cream can be used only on your face or could >you >use it in sensitive areas such as face, neck or belly? I am very >interested >in the ingredients, if you have already posted this I'm sorry for asking >you >to repeat it again. >Thank you Sandy B. in IN. _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 8, 2001 Report Share Posted November 8, 2001 I read on the masto board that caution should be used when first applying it to the face - just a tiny dab at first, then wait and see if there is any reaction. I've been using it on my face (especially around the jawline) with no problems. Air hugs, Jackie Life is tough, but I'm tougher. _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2001 Report Share Posted November 30, 2001 Thanks Barbara in Boston My doctor just told me that my case is the worse he has ever seen...OH JOY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2001 Report Share Posted December 22, 2001 Hi-- I've been using Gastrocrom for about 1 1/2 weeks, when I first started taking it the hives were gone completely, lately seems like something is making them come back slightly, they are nothing compared to what they were, just one or two. Yesterday after taking my daughter to a salon to have her nails done, as I was sitting there, I started to get several hives, the chemical smell was nasty in this place, so i'm wondering if this somehow triggered me to break out. Also, I've noticed an improvement with flushing, it is NOTHNG like it was, another thing I've noticed an improvement was my GI problems, I've actually been able to have some things that was a big " no no " for me. So all in all, I'm happy to be on the Gastrocrom, I would really like these darn hives to be gone completely, but from what I understand Jackie said, they do come back a little, so that makes me feel better. Are you on the Gastrocrom or just thinking about talking to your doctor about it?? Please share your symptoms with me so I can undersstand your situation. Take care, Ann > >Reply-To: urticaria >To: urticaria >Subject: p.s. cholinergic drugs >Date: Fri, 21 Dec 2001 23:52:39 -0000 > > Has oral gastrocrom worked for anyone? Thanks. > Ann " I get by with a little help from my friends. " _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp. Quote Link to comment Share on other sites More sharing options...
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