Comfort to all. I learned back in June that I have systemic mastocytosis. According the pathologist that performed my bone marrow biopsy I am the 27th confirmed case here New Mexico. Though I feel I have found a very good Doctor what I have discovered is that one has to become there own medical expert. I have read through several discussions in this form and have learn lots! What I am hopeing is that several of you will share with me your tryptase levels and how taking antihistamine effected them as well has which one and dose. My level was 42 and have been on over the counter Cetirizine once a day 10mg pluse 12 hour 5mg and 20mg Pepcid twice a day. I will learn results of tryptase tomorrow. I have a lot of other questions but would like to hear from all who are willing to share on this first. Thanks HelenD
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Looking for those with mastocytosis
- By HelenD
- Posted October 14, 2009 at 3:30 pm · 40 replies
- In My disease has no treatment
- Shared with the public
Explore topics in this discussion:
Exercise Zantac Kidney stones Anxiety Menopause Ambien Mastocytosis Stress Asthma Boniva Allergies Diltiazem Cetirizine Anemia Wellbutrin Tagamet Hydroxyzine Diarrhea Cancer Imuran Claritin Schizophrenia Loratadine Allopurinol Elavil Clonidine Allegra Osteopenia Anaphylaxis Prednisone Benadryl Flexeril Xanax Spironolactone Sweating Singulair Pain Memory Depression
40 replies
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- By Poetessa
- Posted October 15, 2009 at 5:30 am
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Hi Helen, welcome to the group, I think you will find it to be a great place for support and information which I know has helped many of us! Just being able to connect with those who have this mysterious illness is a great thing! It is so scary and overwhelming at first that it's really comforting, I know it was for me to interact with others who can truly relate!!
As for tryptase, when I was first diagnosed a year and a half ago mine was at 182 which was a tad on the high side. Since all the meds I have fluctuated between 115 and 159-ish depending on what is happening. I now take hydroxizine once a day, Zantac, twice a day,Cetirizine once a day, benedryl almost everyday as needed, iron twice a day because of the anemia as my bone marrow is up at 70%, flexeril twice a day, pain meds mostly every day for the bone pain... I know I'm forgetting something!! There's another stomach med I forgot...??? I was on gastrocrom but my doc took me off it after 6 months because there wasn't much change but many swear by it. Everyone is so different and meds affect everyone differently.
I hope your symptoms aren't too severe and you are coping ok, there is tons of support on here when you have those bad days!! Lord knows we all do!!
I would love to hear more about what is happening and how you got diagnosed etc... Best of luck to you and happy you found us!! Everyone is so wonderful here, interacting with everyone has made my masto journey so much more bearable!!!
Healing hugs!
- By slu
- Posted October 15, 2009 at 10:59 am
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my husband tryptase levels are usually between 65-70. he has been at 114. He has found a Dr. that has him off all the histamines and steriods. He is on gleevac. He feels much better than when he was on all this other stuff.
- By SM_30
- Posted October 15, 2009 at 2:03 pm
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Welcome Helen. I was diagnosed over a year ago. My tryptase levels are normal! I have not had them tested without being on meds. I have not had a bone marrow biopsy, though I respond VERY well to the Masto meds protocol. Unlike Poetessa, Gastrocrom is what keeps me from going into masto flairs. Levsin (smooth muscle relaxer) and Elavil (serotonin blocker) is what keeps my abdominal pain down to a minimum. I'm not on Elavil now...but many people use Doxepin as well. In very low doses they can help control some of the pain.
Feel free to keep asking questions.
Alexia
- By catdani
- Posted October 15, 2009 at 11:34 pm
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Slu: How long has your husband been on
Gleevec and what kind of side effects has he had so far?
Helen I was diagnosed 4 years ago. But I had it many years before, they could just never figure out what was wrong .
My tryptase usually runs 80s to 120. I did have a visit that it was at 56. That was after a week in Florida. But I was also very careful to take all my meds like I am suppose to due to travelling.
I take Gastrocrom. It is a miracle drug for me. I take Claritin. I take Benedryl. I also at time have to take pain meds for my bone pain. I also take Ambien because I never sleep. It helps me sleep and not constantly wake up to muscle and bone pain.
I take extra calcium and Vit. D because I have osteopenia due to bone marrow involvement. I there is more because that list wasn't long enough.
I also have started being careful of food I eat. I have started taking notice to different foods that seem to set me off.....
Good Luck. There are quite a few people on here with masto that have a lot of knowledge of the disease.
- By catdani
- Posted October 15, 2009 at 11:34 pm
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Slu: How long has your husband been on
Gleevec and what kind of side effects has he had so far?
Helen I was diagnosed 4 years ago. But I had it many years before, they could just never figure out what was wrong .
My tryptase usually runs 80s to 120. I did have a visit that it was at 56. That was after a week in Florida. But I was also very careful to take all my meds like I am suppose to due to travelling.
I take Gastrocrom. It is a miracle drug for me. I take Claritin. I take Benedryl. I also at time have to take pain meds for my bone pain. I also take Ambien because I never sleep. It helps me sleep and not constantly wake up to muscle and bone pain.
I take extra calcium and Vit. D because I have osteopenia due to bone marrow involvement. I there is more because that list wasn't long enough.
I also have started being careful of food I eat. I have started taking notice to different foods that seem to set me off.....
Good Luck. There are quite a few people on here with masto that have a lot of knowledge of the disease.
- By CSIII
- Posted October 16, 2009 at 1:05 am
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Welcome Helen, Like the others I am on a pharmacy full of anihistamines; loratadine, hydroxyzine, Zantac, singulare, benadryl to name a few. For me, as with catdani, gastrocrom has been a miracle. My tryptase levels are in the mid 40s. I am what is commonly known a gastro shocker. When I have an attack i have sudden and severe diarrhea, vomiting,and my body is on fire, my heart pounding and sweating bullets. I pass quickly into anaphylaxis. I have used 6 epi pens and never leave home without two of them. Since taking the gastrocrom, I have had a some close calls, but as yet have not had a full blown attack. My biggest complaint now is swollen and achy feet. I saw my allergist today and he said that is to be expected. The mechanics of walking releases histamines and that is the way my body reacts. I know that by the end of the day it is agony to do any walking at all. Have others had this problem, and what do you do for relief?
I am still trying to figure out the triggers. I know that stress is a big one for me and now I am finding that pickles and pickled peppers need to be avoided. Other than that everyday can be a new and exciting experience. Helen, know as we have all learned, we are all in this together and are here for each other.My best to all. Dale
- By HelenD
- Posted October 16, 2009 at 2:42 am
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It is so great to hear from all of you! I do not understand this stuff! This is really frustrating. I can read each of your comments and relate with bits out of each one. I'm up late feeling awful. I have to keep moving when my stomach is acting up. Thank you all for your time. I am so questions for all you. I'm sweating those bullets Dale is talking about. So I'll be back to chat once I get through this. Thanks again Helen
- By Poetessa
- Posted October 16, 2009 at 5:28 am
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So sorry you are going through this Helen!! We really all can relate so well!! I know how frustrating it is!! I keep finding new allergies which is so annoying!!
It seems like most of us are up late, I am forever being referred to as "The Vampire" and I don't even get offended anymore! I have gotten used to the lovely sunsets!! LOL
If you have ANY questions please do not hesitate to ask, someone on here must know the answer, we've all been through just about everything related to this disease.
And as Dale said, we really are in this together, you will find some comfort in that, I know I did!!
Wishing your gastro episode passes quickly!! Did you take a Zantac? I usually hit the floor once I've taken my meds, it's cool down there!
Healing hugs!!
- By slu
- Posted October 16, 2009 at 8:36 am
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My husband has been on all those drugs, and he really wasn't doing that well. He used to take like 12 pills every day now he take the extra calcium and vitamin d. along with the gleevac. He has been on it for 3yrs. he was on all the other meds for 6 yrs. He is going for a bone desinty test. The side affects that I noticed is he will be nauses in the morning from gleevac but it passes quickly. He was on suck high dosages of predisone 60mg. and that made him blow up like a ballon. His potassum get lows so they watch that. He get blood test every 2month his tryptase levels have not changed much so now they are doing the blood test every 4 months. His Dr. visit are now every 6months. This is such a strange disease now one really new how to treat it nor can they answer any questions. We had gone to Mayo Clinic went through 4 cancer specialist before we went to Moffit Cancer center. I think it is all a trial to keep your tryptase levels low. My husband has had this going on for 13 yrs before he was diagonised. He was lucky enough to have a new Dr. suggest a bone marrow biospy.
- By HelenD
- Posted October 16, 2009 at 5:08 pm
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Well, I'm alive. I've had my cutaneous spot for 10 yr. but these stomachaches have only been occuring for about 7 months. Yesterday I woke up feeling great, went to see my Dr. then did a little shopping. Still feeling good when I got home I ate a half a sandwich with a dap of mayo and a thin slice of cheese. I didn't feel to bad just a little up set but I had a bit more cheese at dinner. The intensity of pain rose slowly through the eveing that by mid night I was sweating. Lesson learned! Just because you feel good stay with what you know does not up set. So far I know I am safe with Glucerna, rice protein powder, apples, potatoes (boiled) and steak. Most vegetables I can have but only small amounts they cause a mild ache. But! have any of you experienced that emotions set off stomachaches, feeling dizzy and funny rush feeling in your skin? I'm looking forward to see if the cromolyn helps with this. In Jan. I have my next Dr. appt. in jan that will give me enought time to check out the Gleevac and ask some questions. My Dr. wants me to increased my calcuim, D3 and take a B-complex along with the daily multi-vit. She admitted to me that those of us who have this stuff are the one who become the real experts on it. I'm so glad you are so willing to share. Just thinking about how scared I've been is making my stomach. Life is so precious you don't realize all the dreams you have until your faced with something like this. I know I don't have it as bad as most of you but just adjusting to having it has been hard. Many tears of gratitude Helen
- By SM_30
- Posted October 17, 2009 at 11:06 am
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Here are some useful resources for you Helen or anyone out there newly diagnosed with mastocytosis:
http://www.tmsforacure.org/
http://homepages.ipact.nl/~milco/ivo/masto/
You can sign up to receive email about Masto research and other discussions.
Histamine Free diet:
http://www.urticaria.thunderworksinc.com/pages/lowhistamine.htm
Hope you are feeling better Helen. I know it's tough, hang in there! When I'm in a flair or the urticaria pops up I go to a histamine free/gluten free diet. It seems to calm things down, but it's so restrictive that I don't stay on it all the time. I mean, a girl needs pizza!
- By cherylpenner
- Posted October 17, 2009 at 11:14 am
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I don't want to assume you have checked out The Mastocytosis Society web states in USA; and Canada has a site too, along with several sites on Facebook; giving tips to help you from people who are putting their heads and hearts together to help each other
- By HelenD
- Posted October 19, 2009 at 4:05 pm
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Thank you all for your responses. I had a great week end like I don't have a problem at all! I'll check out the web sites I do think I I've been to the TMS one. I'll check out the others and Facebook. If any thing come to your mind that you think may be helpful please let me know! Helen
- By jr7449
- Posted October 20, 2009 at 9:33 pm
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Hello again to one and all!
So sorry for each and every one of you for the pain suffered. I certainly can relate.
I have had this affliction for at least 13 years.
Diagnosed only by bone marrow biopsies. I am now in my 6th stage of a clincal trial at MD Anderson in Houston. My physician is Dr. Sdan Verstovsek.
The mast cells in the bone marrow have decreased from 50-60% to 20%. Tryptase in blood has been decreasing steadily, from 234 to 145. These numbers are comparatively high to most, but they are improving. The treatment I am receiving is called Obataclax IV. Every two weeks, three days in a row, three hours each. I also take Cromlyn Sodium, Hydroxizine, Loratadine. Doxepin, Vicoprofen, an occasional Xanax and Ambien.
The pain has almost ceased, but the spots are still there in full force.
I had tried Gleevec, without results.
If anyone would like to know more, please don't hesitate to ask. Best to one and all.
Jan
- By HelenD
- Posted October 21, 2009 at 12:28 pm
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Dear Jan and inspiring group, My heart goes out to all of you. I have not had to endure near what you all have. I'm not sure I could. For the 10 years I've had the spots, it has only been recent I've had the stomach problems. Yet there are some symptoms, like a feeling of dizzyness that will suddenly come on me and linger for hours, that has affected me for years. And a funny kind of anxiety that causes me to feel very self-conscious. Do any of you experience anything like this? See now I'm feeling like a whinning weirdo! May we all have a wondeful day. Helen
- By cynclaire
- Posted October 27, 2009 at 8:11 pm
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Hi Helen. Great reading everyones post and like you I can relate to much. I have had the "spots" for 32 years and I am 51. They were not diagnosed until 36 but the systemic symptoms did not occur until early forties and it took several years to get diagnosed in 2003. My tryptase started at 37 and decreased as my life destressed to 29. This last year my stress level has shot straight up and so did my tryptase to 42 in less than a year. I like allegra, zantac, wellbutrin as I have clinical depression. I have a lot of the brain issues; memory lapses, emotional highs and lows etc... My last bone density showed a thinning but not enough to go on meds yet. Little nervous as I think that may accelerate with menopause and dread the thought of hot flashes. I've had a couple and you talk about flushing from the inside out OMG. Anyone else had this? I have had swelling especially in the feet but did not attribute it to the masto. CSlll Interesting.
- By cynclaire
- Posted October 27, 2009 at 8:12 pm
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Hi Helen. Great reading everyones post and like you I can relate to much. I have had the "spots" for 32 years and I am 51. They were not diagnosed until 36 but the systemic symptoms did not occur until early forties and it took several years to get diagnosed in 2003. My tryptase started at 37 and decreased as my life destressed to 29. This last year my stress level has shot straight up and so did my tryptase to 42 in less than a year. I like allegra, zantac, wellbutrin as I have clinical depression. I have a lot of the brain issues; memory lapses, emotional highs and lows etc... My last bone density showed a thinning but not enough to go on meds yet. Little nervous as I think that may accelerate with menopause and dread the thought of hot flashes. I've had a couple and you talk about flushing from the inside out OMG. Anyone else had this? I have had swelling especially in the feet but did not attribute it to the masto. CSlll Interesting.
- By HelenD
- Posted October 27, 2009 at 9:25 pm
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Hi CSlll, Good to hear from you. A few days ago I became so frustrated with the awful side effects of the over the counter antihistamine I stopped taking them and made an appointment with a very respected Allergist here in New Mexico. He was great! He had just seen another masto patient late last week who is taking ketotifen (not sure that is spelled right) any way she says of all the drugs she had taken it has been the best. It is not FDA approved so she gets it some how through the vatican. I have a perscription for cromolyn, have you ever used it? I have read it helps not only with the stomach but with the brain fog. The allergist addressed that a bit today as well. According to him the rush of histamine release has a very interesting effect on our brains. I'm looking forward to learning more. He did send me home with what he say is one of the best write ups on Mastocytosis he has read. Once I get it read I'll try to outline it for us. I have had some trouble getting my insurance to pay for allegra but today since he is the second dr. to want me on it it was approved. I hope it doesn't effect me like the loatadine did. If anyone has more info on ketotifen please let me know. Together we can find comfort and hope. Be well Helen
- By Cocoapuff68
- Posted October 28, 2009 at 8:59 am
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This disease is just aweful to have...I hope they figure it out soon..I have the flushing all the time without the ton of meds that I am on..I take the gastrocrom and all the antihistamines..At one point I was taking so much benadryl to breath, I started getting shocking in my head! That was not good...I am on my third month of Xolair shot and I will let you know how that goes but so far haven't been in ambulance for anaphlactic reations in couple months..that is awesome for me... Lots of vitamins and started myself on the asprin therapy few weeks ago ...I have high prostiglandin d levels and that has been shown too help bring them within normal range,,IF you are able to take it..CAN cause major reactions !!! Other than that so far just a ton of depression and crying for loss of what was and is to come...
- By catdani
- Posted October 28, 2009 at 9:36 am
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Helen
What side effects do you have from the loratadine?
Does anyone see a rheumatologist? I see an oncologist for my masto. Her only solution is I either need to do Interferon again or start Gleevec.
Plus she wants me on Boniva.....
I am not really wanting to do that yet. I did do Interferon for 4 months a couple years ago. It helped the bone pain for almost a year. But it made me so sick! I am having a lot of joint pain and joint swelling so I was thinking I needed to switch specialists....
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