Extreme Degranulation Event
Posted , 3 users are following.
Hi everyone. I am having a really bad degranulation event. I can't seem to get it under control. It has been going for almost a month. I went to the allergist, saw his new NP, and she had no answers. They want me to try Allegra, but I am leery of trying another med as I had reactions to Nexium and Zyrtec. I think I have mastocytosis as my tryptase was over 20 even without reactions. Been in the ER 3 times, but they don't help. Yesterday I took my Vitamin D3 and calcium and had a reaction. I am talking about sudden feeling of doom, low bp, and I grabbed the benadryl. It pulled me out of it, but now I don't know if it was that or if my histamine levels are not being controlled by the meds. She wouldn't order any blood work. My urinalysis is showing a high pH and I'm going into ketosis, slight for now. I am limited to only a few foods I can tolerate and they are bothering me now. I am on cromolyn, Zantac, Claritin, Flonase, eye drops, and Benadryl as needed. The benadryl really helps, but don't want to use it all time. The NP said if it continues they might have to consider a food line. I said no. It is in my GI tract. I have had polyps removed that were full of lymphatic tissue and other cells, but at the time they didn't test for mastocytosis. The Immunologist is pretty sure I have it in the gut. Joy. I have constant heartburn (helped by benadryl! That's why they think the mast cells are everywhere), terrible abdominal pain, diarrhea, and now blood. I am existing on bone broth. I can't eat anything not organic. It is getting expensive. I can't take any antibiotics, antifungals, etc. I have to avoid people, even my grandchildren for fear of catching something. I see Dr. Akin at U of M in September. I am trying to stay alive until then. Any suggestions would be appreciated. My PCP just won't even consider discussing this and says go to the specialist. My gastro's office says the same thing! I am hoping Dr. Akin can suggest a good PCP and gastro who will work with him. BTW, I had a bone biopsy that just showed low ferritin, which I didn't know is a sign of mastocytosis too. I really don't want another one done, but the doctor said sometimes they miss the spot. Joy! I really want some decent blood work done. I have swollen lymph glands and a tender spleen, but they just keep passing me off to the next doctor to try to find an answer. The NP just held me hand and told me there's nothing she can do!
0 likes, 3 replies
jen6dawters adonnya
Posted
You sound a lot like me. My gastroenterologist finally sent me to have methane hydrogen breath test. She put me on Xifaxan and it works temporarily. I have SIBO and have lived on only one food for weeks at a time. Because I'm older and my weight goes below 100 pounds and my skin was covered in blisters and bumps I've been on Xifaxan for 15 months. My weight is above 100 and my skin is better.
It's not a cure buy helps rid the intestines of some bacteria overgrowth. I'm getting worse again so they usually add another antibiotic. There is no cure for SIBO and natural stuff makes me itch. Probiotics make me itch. Once bacteria gets a hold the inflammation gets worse. I had infections in my eyes since 1982 which finally went away after weeks of Xifaxan.
My doctor said she's learn a lot from me and my different issues.
jen6dawters adonnya
Posted
Mike_1973 adonnya
Edited
Hi Adonnya,
Just wanted to respond. To give you some background, I was diagnosed with systemic mastocytosis in 2001 and have lived with it until the present (27 years). I have undergone hundreds of episodes and over 150 full blown 911 ambulance rides to the ER during anaphylactic shock events. You might say I'm a journeyman at this. And I've become one by my faith in God. I was misdiagnosed countless times and sent home with a new bunch of meds and a poor plan.
Some input for you.
1. Was Systemic Mastocytosis firmly and exactly confirmed by the bone marrow biopsy. The biopsy I had done was at the The National Institue of Health in Bethesda, MD
2. Where was the bone marrow biopsy done. And if they "missed the spot" they're incompetent and should not be used again. That's your call, not theirs.
4. Do you keep Epinephrin with you at all times?
5. What climate are you in? Geographic area?
6. I, personally, have had better results with Famotadine (Generic Pepsid) than with (Rinitadine) Zantac.
7. Careful with the long-term use of Flonase. It's a corticosteriod and long term use thins the tissue in the area.
I used it until I developed a profuse nose bleed that couldn't be stopped or controlled and had to go to the ER and took them 20 minutes to stop it. A real gusher. Needless to say I stopped the corticosteriod use and the problem has never arisen again. I was told of the tissue thinning effect by my ENT doc.
8. And, yes, "Systemic" Mastocytosis does typically involve mast cell accumulations in the stomach and GI tract. I find I have to stay clear of Cheeses, Cottage Cheese, Yogurt, Milk and dairy items.
9. Do you have a supportive partner in your life? My wife is my most wonderful blessing and biggest supporter.
10. Do you have uticaria pigmentosa? Little reddish-brown spots on you abdomen, trunk, thighs? If so, are you getting any UV light? Just a little sun almost every day. It helps. It helps everything including your state of mind.
11. This disorder "can" become almost all-consuming......If you let it. DON"T LET IT! Try not to take internal psychological ownership of it. Avoid planning your day around the disorder. Live your life as best as you can. Always take with you the meds you need to take profylactically, Loratidine (Generic Claritin), Famotadine or Rinitadine and take them on schedule. But don't over-take them. You can actually start having reactions and episodes from taking too many antihistamines. Also, Always take with you the Benedryl and Epinephrine for emergency onset.
12. Find a way to get some exercise every day. Walking, Bicycling, something. And try to go with another person if possible. Keep your phone and your meds on you always. I keep everything in a camo shaving kit bag my wife was good enough to organize for me.
13. I reduce costs by using generics of everything possible. Over the counter Generic Claritin ( 60 tablets- 10mg Loratadine tablets) $4.00 at Walmart. (50 tablets- 20mg-Famotidine) Generic Pepsid) $3.50 at Walmart. "They also have the Rinitadine-Generic Zantac if you prefer or the doc prescribes" and (Generic Benedryl-100 tablets Diphenhydramine HCL) $4.00 at Walmart. The powdered caplets are faster acting, especially in sudden onset. I bite the end off and pour the powder under my tongue. The response is typically almost immediate vs. the little pink pill type.
Avoid excessive heat and humidity, obvious allergens and triggers.
LIVE ! Put one foot in front of the other. PLAN THINGS, DO THINGS. Just be smart about how you do them. My wife and I love to fish. But are we going out on the boat in the mid-day sun on a 95 degree summer day, NO WAY. It's a plan to fail. If you do have a supportive partner in your life, be smart and caring enough not to put them in potentially dangerous situations where they have to deal with an attack in a remote area. Be mindful of walking or biking on remote paths that an ambulance can't access.
I have 6 years of college education and made a good living for years as an Environmental Management Professional. I have slugged through about every debilitating aspect of living with this disorder. But I did go back to college for four and a half years at age 56, the first six months of which I was living in my truck and visiting the campus food pantry occasionally to survive.
I have an empathetic and sympathetic love and understanding for anyone living with this disorder. Getting to know Jesus Christ as savior and healer is paramount.
"I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, ‘move from here to there’ and it will move; Nothing will be impossible for you” (Matthew 17:14–20). Next, in Luke 17:6, Jesus tells His disciples, “If you have faith as small as a mustard seed, you can say to this mulberry tree, ‘Be uprooted and planted in the sea,’ and it will obey you.” By using the uncommonly small mustard seed as an example, Jesus is speaking figuratively about the incalculable power of God when unleashed in the lives of those with true faith.
YOU CAN DO THIS! NEVER GIVE UP! Life is just too precious.
I greatly appreciate the opportunity to interact with you.
Best regards, Mike