Visit the Microscopic Colitis Foundation Website
So my appt with Dr. Hamilton was sched. for the end of April. I have been getting a lot of rashes lately after eating but the D has backed off bc I am taking immodium. I called the office today and told them I really wasnt feeling well and asked to be sooner since my appt was still over a month away. They didn't even ask for my symptoms or what was going on. All they said was, he just got back from vacation, let me email him and I will call you back. I got a call back with in 2 hours and they told me he would see me on Friday at 4pm. I would have to call and get my records transferred asap!
I will let you all know what happens, I have my fingers crossed he isnt going to say IBS to me like he recently did to Beth. We'll see!
Jenny
Dr. Hamilton-Bringham
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
I just got home from my appt with Dr. Hamilton @ Brigham..
My appt was at 4pm, was brought in right away and left at 5:45pm. He spent SO much time with me. After about 40 min., I asked, "am I keeping you with all of this?" and he said "no I usually have a specific amount of time with pts but you are my last one". Then about 25 min later he asked "wait, am I keeping you?" haha he was very nice.
After listing all of my symptoms and going over my previous meds, drs notes etc.. He thinks I def have "mast cell activation disorder". After the appt. I went for blood work and cked my tryptase levels along with a few other things and also left with a container to take a 24-hour urine test. He also scratched my chest during the first half of the appt to see how my skin would react and it is STILL there! (almost 2 hours later now...)
Overall I think it was a good appt and I am Im looking forward to finally getting to the bottom of all of my symptoms!
ps-He also asked me what days work well for me to come in for appts., I said wednesdays bc they are my day off. he said he didnt work wednesdays but, he would be willing to come in if it worked for me! How nice?!
Jenny
My appt was at 4pm, was brought in right away and left at 5:45pm. He spent SO much time with me. After about 40 min., I asked, "am I keeping you with all of this?" and he said "no I usually have a specific amount of time with pts but you are my last one". Then about 25 min later he asked "wait, am I keeping you?" haha he was very nice.
After listing all of my symptoms and going over my previous meds, drs notes etc.. He thinks I def have "mast cell activation disorder". After the appt. I went for blood work and cked my tryptase levels along with a few other things and also left with a container to take a 24-hour urine test. He also scratched my chest during the first half of the appt to see how my skin would react and it is STILL there! (almost 2 hours later now...)
Overall I think it was a good appt and I am Im looking forward to finally getting to the bottom of all of my symptoms!
ps-He also asked me what days work well for me to come in for appts., I said wednesdays bc they are my day off. he said he didnt work wednesdays but, he would be willing to come in if it worked for me! How nice?!
Jenny
Hi Jenny,
Welcome to our little MCAS group. (Mast cell activation syndrome and disorder are interchangeable.) I believe that makes you, Mary Beth and myself who officially carry this diagnosis around here. I'm sorry that you have to deal with a mast cell disorder, but it's so much better knowing what is wrong, rather than feeling terrible and not knowing why. At least you have an answer now and can therefore get the right treatment. This is actually very exciting news! You're on your way to better health!
I have lots of info on MCAS, as does Mary Beth, so don't hesitate to ask any questions. Here's the mast cell forum that I frequent which may be helpful:
http://mastcelldisorders.wallack.us/yabb/YaBB.pl
Also, you can visit the Mastocytosis Society site and that also has lots of good information as well. They can be found at:
http://www.tmsforacure.org/welcome.php
I'm going to post (separately) a very comprehensive presentation on mast cell disorders that my mast cell doctor gave last year. It has more info in it than one person could possibly absorb all at once, but it presents the many "faces" of MCAS, which is the major challenge to physician and patient alike in "connecting the dots" with symptoms.
I believe in time that mast cells will be implicated in more and more health issues. It's so great that you have a physician who is on the cutting edge of that knowledge.
Good luck to you Jenny!
Julie
P. S. You may already know this...24 hour urine test measures the N-methylhistamine in your urine. N-methylhistamine is a metabolite of histamine and of course histamine is one of the primary mediators that mast cells release when triggered. Mine was sky high when measured, which firmed up my diagnosis.
Welcome to our little MCAS group. (Mast cell activation syndrome and disorder are interchangeable.) I believe that makes you, Mary Beth and myself who officially carry this diagnosis around here. I'm sorry that you have to deal with a mast cell disorder, but it's so much better knowing what is wrong, rather than feeling terrible and not knowing why. At least you have an answer now and can therefore get the right treatment. This is actually very exciting news! You're on your way to better health!
I have lots of info on MCAS, as does Mary Beth, so don't hesitate to ask any questions. Here's the mast cell forum that I frequent which may be helpful:
http://mastcelldisorders.wallack.us/yabb/YaBB.pl
Also, you can visit the Mastocytosis Society site and that also has lots of good information as well. They can be found at:
http://www.tmsforacure.org/welcome.php
I'm going to post (separately) a very comprehensive presentation on mast cell disorders that my mast cell doctor gave last year. It has more info in it than one person could possibly absorb all at once, but it presents the many "faces" of MCAS, which is the major challenge to physician and patient alike in "connecting the dots" with symptoms.
I believe in time that mast cells will be implicated in more and more health issues. It's so great that you have a physician who is on the cutting edge of that knowledge.
Good luck to you Jenny!
Julie
P. S. You may already know this...24 hour urine test measures the N-methylhistamine in your urine. N-methylhistamine is a metabolite of histamine and of course histamine is one of the primary mediators that mast cells release when triggered. Mine was sky high when measured, which firmed up my diagnosis.
Gloria,
You are correct that Gastrocrom (anti-inflammatory and mast cell stabilizer) is not one of the meds that I currently take for my mast cell issues. However, I did try it sometime within the first year of my diagnosis of mastocytic enterocolitis. (IOW prior to my systemic mast cell diagnosis.) At that time I was having significant GI issues and the hope was that the Gastrocrom would help calm down those specific symptoms.
I tried the Gastrocrom for roughly a month and hated it. It didn't seem to help and it was such a pain to take 4x/day. (As you know the vial of Gastrocrom has to be mixed with a specific amount of water when taken.) I also found that it caused slight burning in my throat which for me is bad news. I get triggered very easily through oral contact. (Lots of mast cells in your mouth so not surprising.) Once the oral symptoms start they are very difficult to get under control and have sent me to the ER repeatedly. (Typically leads to facial hives, wheezing, itching, tremors, body temp drop, etc.) So, between it irritating my mouth and feeling like it wasn't really helping, I discontinued using it. (Why pay so much $ for something that wasn't making much of a difference?!)
My mast cell meds currently are Zyrtec, 20 mg/2x day; Zantac, 150 mg/2x day; Singulair, 10mg once daily and lots of Benadryl on an "as needed" basis. I would also add Nexium because when I tried to stop using it, my mast cell symptoms came roaring back with a vengeance. My allergist is considering putting me on Ketotifen, (H1 antihistamine AND mast cell stabilizer) which is currently not available here in the US. I believe I would get it from Canada and I have absolutely no idea how that would work. But, he used to run the Allergic Division at NIH, so I'm assuming he is familiar with the process of securing the Ketotifen. Assuming I can get it, I think there is high probability that I'll end up trying it. I just can't get my symptoms under control, which I know equates to more meds.
It's typical that a mast cell patient (who doesn't fully respond to standard H1/H2 antihistamines) is put on either Gastrocrom or Ketotifen. Since Gastrocrom did zip for me, I'm holding out hope on the Ketotifen. But, it's always scary when you have to try a new med. Mast cell patients are advised to NEVER try a new drug while alone. Just too unpredictable if it will be tolerated or if it will trigger a big mast cell dump, leading to a vast array of symptoms, some which could be life threatening.
Where are you with your mast cell issues Gloria? I know you've tried a few things. Any luck with reducing your symptoms?
It's definitely a process of trial and error with meds, which can be frustrating. But, as my mast cell specialist always tells me "patience and persistence" will eventually pay off. I hope he's right!
Julie
You are correct that Gastrocrom (anti-inflammatory and mast cell stabilizer) is not one of the meds that I currently take for my mast cell issues. However, I did try it sometime within the first year of my diagnosis of mastocytic enterocolitis. (IOW prior to my systemic mast cell diagnosis.) At that time I was having significant GI issues and the hope was that the Gastrocrom would help calm down those specific symptoms.
I tried the Gastrocrom for roughly a month and hated it. It didn't seem to help and it was such a pain to take 4x/day. (As you know the vial of Gastrocrom has to be mixed with a specific amount of water when taken.) I also found that it caused slight burning in my throat which for me is bad news. I get triggered very easily through oral contact. (Lots of mast cells in your mouth so not surprising.) Once the oral symptoms start they are very difficult to get under control and have sent me to the ER repeatedly. (Typically leads to facial hives, wheezing, itching, tremors, body temp drop, etc.) So, between it irritating my mouth and feeling like it wasn't really helping, I discontinued using it. (Why pay so much $ for something that wasn't making much of a difference?!)
My mast cell meds currently are Zyrtec, 20 mg/2x day; Zantac, 150 mg/2x day; Singulair, 10mg once daily and lots of Benadryl on an "as needed" basis. I would also add Nexium because when I tried to stop using it, my mast cell symptoms came roaring back with a vengeance. My allergist is considering putting me on Ketotifen, (H1 antihistamine AND mast cell stabilizer) which is currently not available here in the US. I believe I would get it from Canada and I have absolutely no idea how that would work. But, he used to run the Allergic Division at NIH, so I'm assuming he is familiar with the process of securing the Ketotifen. Assuming I can get it, I think there is high probability that I'll end up trying it. I just can't get my symptoms under control, which I know equates to more meds.
It's typical that a mast cell patient (who doesn't fully respond to standard H1/H2 antihistamines) is put on either Gastrocrom or Ketotifen. Since Gastrocrom did zip for me, I'm holding out hope on the Ketotifen. But, it's always scary when you have to try a new med. Mast cell patients are advised to NEVER try a new drug while alone. Just too unpredictable if it will be tolerated or if it will trigger a big mast cell dump, leading to a vast array of symptoms, some which could be life threatening.
Where are you with your mast cell issues Gloria? I know you've tried a few things. Any luck with reducing your symptoms?
It's definitely a process of trial and error with meds, which can be frustrating. But, as my mast cell specialist always tells me "patience and persistence" will eventually pay off. I hope he's right!
Julie
Julie,
There is a pharmacy in Washington state that will get ketotifen for you. I read about it on the mast cell forum. From what I understand ketotifen is pretty well tolerated compared to gastrocrom. BTW, we had another member a while back (faithberry) that had elevated tryptase. She never followed up with a mast cell specialist but I am guessing she had MCAS as well. I actually suspect alot of folks here have some degree of mast cell involvment, but only a handful of us experience extra-intestinal symptoms.
Jenny,
Hopefully you will finally get some answers. Your new doctor sounds like a gem. When I went there they also spent a long time with me and I really appreciated that. Don;t hesitate to ask any questions but PM me as I cannot keep up with the volume of posts on the forum these days.
Mary Beth
There is a pharmacy in Washington state that will get ketotifen for you. I read about it on the mast cell forum. From what I understand ketotifen is pretty well tolerated compared to gastrocrom. BTW, we had another member a while back (faithberry) that had elevated tryptase. She never followed up with a mast cell specialist but I am guessing she had MCAS as well. I actually suspect alot of folks here have some degree of mast cell involvment, but only a handful of us experience extra-intestinal symptoms.
Jenny,
Hopefully you will finally get some answers. Your new doctor sounds like a gem. When I went there they also spent a long time with me and I really appreciated that. Don;t hesitate to ask any questions but PM me as I cannot keep up with the volume of posts on the forum these days.
Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
I still get mouth sores, usually a couple of days a week. I most recently tried a generic Zantac, but it didn't seem to do anything. Benadryl helped my BMs firm up for about a week, then they deteriorated. I probably began reacting to an inactive ingredient. I may try to find a compounding pharmacy to make it for me. I've tried Zyrtec, and Claritin (both types) and haven't seen any change. There's a $7 coupon for Allegra this week so I will probably buy it to test. I haven't tried Singulair or Gastrocrom; both require a prescription and my GI is clueless about mast cells. My PCP has other patients with mast cell issues, but he's told me to go to a teaching hospital. He's never wanted to treat my MC problems.Julie wrote:Where are you with your mast cell issues Gloria? I know you've tried a few things. Any luck with reducing your symptoms?
I'm getting some relief from my intestinal symptoms by taking 1/2 Imodium a day while starting to reduce Entocort.
DH is retiring in two days and we will be on Medicare.
I've tried to pick a Part D drug plan which will give the best coverage for Gastrocrom and Singulair, in case I find a doctor who will prescribe either one. First I have to find a mast cell specialist who will accept a new Medicare patient. After reading your experience with Gastrocrom, perhaps it wouldn't be the best solution for me, either. I've read about Ketotifen. I'll be interested in your response to it. I don't understand why it's not available in the U.S.
Gloria
You never know what you can do until you have to do it.
Jenny,
I'm glad you're getting answers, and from such a kind doc!! I have a question regarding the scratch test he did on your chest. I'm guessing he knew you had dermographism, but was the length of time the scratch stayed there significant? Did he explain? My skin writing lasts about 20 minutes...
I'm glad you're getting answers, and from such a kind doc!! I have a question regarding the scratch test he did on your chest. I'm guessing he knew you had dermographism, but was the length of time the scratch stayed there significant? Did he explain? My skin writing lasts about 20 minutes...