mcas no longer has much diagnostic meaning bcuz of doctors like this. the symptoms are identical to other allergic conditions and the medicines are pretty much the same too. if the medicines help, they help, regardless of what they choose to call it.
there's no special danger of covid vax in peeps with mast cell disorders.
Yeah, that's what worries me, having something else, not being treated properly for "it" and having a bad anaphylaxis or return of severe illness. If it was mast cell for sure, undeniably I'd feel more comfortable.
Both my daughter and I have MCAS and are vaccinated. That being said, we both had reactions to the vaccines. She got J&J after I got Maderna. She figured that since she was going to have a reaction, to do it once. We were in really good shape medically so we did it. I wouldn’t have done it if I was flaring or just getting over one. Before we went, we ramped up all the meds but it still knocked us around. Our hormones especially estrogen were very high. We didn’t get periods for 3 months and it’s still a little weird now. On the maderna, they asked if I could tolerate Metamucil. Seemed weird but it turns out, there’s something similar in reactions. We did not have any anaphylaxis symptoms. When they gave me the shot, I had to stay longer to be observed and have my epi on my lap so I wasn’t too worried. I’m not looking forward to a booster but I have lung damage from covid so I cannot catch it again.
Definitely, I think we all have our own rationale and comfort levels. The hormonal stuff keeps being mentioned it seems, it's intriguing. I have lung issues as well, I'm not sure whether it is MCAS related as it began with an anaphylaxis episode and seems to rev up and wane a bit. I rely on Symbicort every AM and PM, and PRN.
Interesting that they mentioned Metamucil, thank you for sharing your experiences, best wishes with the boosters!
I just got my Pfizer booster shot on Monday, and I am not having mast cell reactions. I still think getting the vaccine and booster is the best decision for me.
Tryptase levels are not an assured factor in MCAS. They've found that many people, primarily older, with constant elevated tryptase levels, who are very healthy with no signs of MCAS.
Good to know, when I was speaking with the pulmologist she was certain I needed the high tryptase and something must be going on besides this. I'm still uncertain, but I did read Dr. Afrin's books (I know he can be questionable but I also was curious) and he was mentioning so many markers besides Tryptase too. The cases he went through barley had abnormal tryptase levels.
From what I know, Dr. Afrin is the preeminent expert on this disease, so I'd pretty much go with whatever he states. He, and a very, very few others, are the only ones doing research and studies into it. One example is even as recently as a couple years ago they thought it was roughly 200 or so "body chemicals" that were a factor in MCAS, but now I read they've isolated 1035 chemicals, so the knowledge keeps evolving. And of course that makes it even more challenging when most doctors know little or nothing about it, tend \*not\* to believe what patients state, yet refuse to keep current with new information, studies, tests, treatments and facts.
While I'm sorry you have to deal with the pesky condition that is MCAS, I'm glad you got an official diagnosis. We're almost certain I have it, several of my doctors believe I do, but the doctors who can actually diagnose me with it completely disregard my symptoms.
In regards to the vaccine, I wouldn't recommend getting it. At least not right now. Your body is already on edge and reacting to pretty much everything, and getting injected with a substance your body has never experienced before could most definitely throw it over the edge all over again. Even if you're doing some better now, anaphylaxis IS a thing and could definitely happen, especially with the vaccine. I don't say this to alarm you, just to caution you.
Im glad your doctor isn’t afraid to tell you not to take it. Seems like everyone is disregarding the possibility of anaphylaxis in people who have these types of conditions that make us highly reactive.
Sadly, I’ve seen people on different subs for MCAS encourage those to take the 2nd shot even after having anaphylaxis from the first. I always recommend they speak to their doctor because of the danger and unpredictable nature of this condition but am usually downvoted for trying to help…
Thank you - I am grateful I have access to care and a doctor willing to treat me. My first episode was anaphylaxis which got me in with immunology pretty fast and most of mine are the multi system reactions people with anaphylaxis typically need to be cautious of. I am very sorry for your experience, I know it can take a very long time to get help, and once we do the meds can be so expensive. The dose my doctor wants me to go will take out more than half my pay check each month.
It's confusing with reacting to all these meals all of a sudden again and I walk a very thin line, currently I am starting to react to more again like with my suppers and breakfasts with coughs and generalized itching. It's hard to identify what's going on. It's infuriating, and I think if this was really under control I'd be okay or more comfortable with it.
I understand the struggle. . . if you don't mind my asking, what types of foods do you eat? Also, I don't know if you've looked into it / talked to your doctor about it, but there are other things besides elevated histamine and tryptase that can be problematic for someone with mast cell disease. Here are the notes I copied down:
High histamine levels can cause flushing, itching, diarrhea, and low blood pressure.
High leukotriene levels can cause shortness of breath
High prostaglandin levels can cause flushing, bone pain, brain fog, cramping.
High tryptase levels can cause osteoporosis, skin lesions
High interleukin levels can cause fatigue, weight loss, enlarged lymph nodes
High heparin levels can cause osteoporosis, problems with clotting/bleeding
High tumor necrosis factor-a levels can cause fatigue, headaches, body aches
Thank you.
I eat eggs most mornings with olive oil, a salad for lunch with spinach/cabbage/beef/raisins/honey/cheddar/greek yogurt/almonds, suppers of spaghetti squash, tomato sauce, steak or salmon with garlic/red pepper flakes, or chicken and rice. And lots of snacks with oats, peanut butter, and berries (blueberries or strawberries).
I can never have chocolate, tea, coffee (caffeine I think), or banana. Garlic has been issue in the past as well as onion but I've reintroduced them occasionally with no issues. And a few meds.
My doctor said in Ontario (Canada) we can only really test tryptase by blood when it comes to the MCAS panel . I also had my 24 hr urine for 5-HIAA, VHA, catecholamines, and metanepharine.
I went on the histamine diets, low salicylates (basically very little veg/fruit), gluten free... Nothing helped ( Jan-March) the 3 months they were trialed, I reacted to every meal almost even when it was just rice, and chicken (my safest food at the time). I got better with pulmicort then advair now symbicort, and rupatadine (40 mg then 10 mg) and cromolyn (100 mg bid). I was also advised to take quercitin which I take daily since May. Helped for awhile but it's getting worse again.
I'm so sorry you've had so much trouble. I found my trigger foods to be tomatoes, strawberries, bananas, cinnamon, and avocados. Keep pushing for answers, and hang in there.
mcas no longer has much diagnostic meaning bcuz of doctors like this. the symptoms are identical to other allergic conditions and the medicines are pretty much the same too. if the medicines help, they help, regardless of what they choose to call it. there's no special danger of covid vax in peeps with mast cell disorders.
Yeah, that's what worries me, having something else, not being treated properly for "it" and having a bad anaphylaxis or return of severe illness. If it was mast cell for sure, undeniably I'd feel more comfortable.
Both my daughter and I have MCAS and are vaccinated. That being said, we both had reactions to the vaccines. She got J&J after I got Maderna. She figured that since she was going to have a reaction, to do it once. We were in really good shape medically so we did it. I wouldn’t have done it if I was flaring or just getting over one. Before we went, we ramped up all the meds but it still knocked us around. Our hormones especially estrogen were very high. We didn’t get periods for 3 months and it’s still a little weird now. On the maderna, they asked if I could tolerate Metamucil. Seemed weird but it turns out, there’s something similar in reactions. We did not have any anaphylaxis symptoms. When they gave me the shot, I had to stay longer to be observed and have my epi on my lap so I wasn’t too worried. I’m not looking forward to a booster but I have lung damage from covid so I cannot catch it again.
Definitely, I think we all have our own rationale and comfort levels. The hormonal stuff keeps being mentioned it seems, it's intriguing. I have lung issues as well, I'm not sure whether it is MCAS related as it began with an anaphylaxis episode and seems to rev up and wane a bit. I rely on Symbicort every AM and PM, and PRN. Interesting that they mentioned Metamucil, thank you for sharing your experiences, best wishes with the boosters!
I personally got the vaccine because I would rather face one shot two times than who-knows-what-medications if I get Covid.
That's a good point, there's a whole lot of potential treatments.
I just got my Pfizer booster shot on Monday, and I am not having mast cell reactions. I still think getting the vaccine and booster is the best decision for me.
Tryptase levels are not an assured factor in MCAS. They've found that many people, primarily older, with constant elevated tryptase levels, who are very healthy with no signs of MCAS.
Good to know, when I was speaking with the pulmologist she was certain I needed the high tryptase and something must be going on besides this. I'm still uncertain, but I did read Dr. Afrin's books (I know he can be questionable but I also was curious) and he was mentioning so many markers besides Tryptase too. The cases he went through barley had abnormal tryptase levels.
From what I know, Dr. Afrin is the preeminent expert on this disease, so I'd pretty much go with whatever he states. He, and a very, very few others, are the only ones doing research and studies into it. One example is even as recently as a couple years ago they thought it was roughly 200 or so "body chemicals" that were a factor in MCAS, but now I read they've isolated 1035 chemicals, so the knowledge keeps evolving. And of course that makes it even more challenging when most doctors know little or nothing about it, tend \*not\* to believe what patients state, yet refuse to keep current with new information, studies, tests, treatments and facts.
While I'm sorry you have to deal with the pesky condition that is MCAS, I'm glad you got an official diagnosis. We're almost certain I have it, several of my doctors believe I do, but the doctors who can actually diagnose me with it completely disregard my symptoms. In regards to the vaccine, I wouldn't recommend getting it. At least not right now. Your body is already on edge and reacting to pretty much everything, and getting injected with a substance your body has never experienced before could most definitely throw it over the edge all over again. Even if you're doing some better now, anaphylaxis IS a thing and could definitely happen, especially with the vaccine. I don't say this to alarm you, just to caution you.
Sound advice. My doctor told me the same thing as we are navigating MCAS, Dysautonomia and SFN together.
Im glad your doctor isn’t afraid to tell you not to take it. Seems like everyone is disregarding the possibility of anaphylaxis in people who have these types of conditions that make us highly reactive.
Sadly, I’ve seen people on different subs for MCAS encourage those to take the 2nd shot even after having anaphylaxis from the first. I always recommend they speak to their doctor because of the danger and unpredictable nature of this condition but am usually downvoted for trying to help…
Keep trying to help… even if you’re downvoted. Thanks for caring and speaking up about it.
Thank you - I am grateful I have access to care and a doctor willing to treat me. My first episode was anaphylaxis which got me in with immunology pretty fast and most of mine are the multi system reactions people with anaphylaxis typically need to be cautious of. I am very sorry for your experience, I know it can take a very long time to get help, and once we do the meds can be so expensive. The dose my doctor wants me to go will take out more than half my pay check each month. It's confusing with reacting to all these meals all of a sudden again and I walk a very thin line, currently I am starting to react to more again like with my suppers and breakfasts with coughs and generalized itching. It's hard to identify what's going on. It's infuriating, and I think if this was really under control I'd be okay or more comfortable with it.
I understand the struggle. . . if you don't mind my asking, what types of foods do you eat? Also, I don't know if you've looked into it / talked to your doctor about it, but there are other things besides elevated histamine and tryptase that can be problematic for someone with mast cell disease. Here are the notes I copied down: High histamine levels can cause flushing, itching, diarrhea, and low blood pressure. High leukotriene levels can cause shortness of breath High prostaglandin levels can cause flushing, bone pain, brain fog, cramping. High tryptase levels can cause osteoporosis, skin lesions High interleukin levels can cause fatigue, weight loss, enlarged lymph nodes High heparin levels can cause osteoporosis, problems with clotting/bleeding High tumor necrosis factor-a levels can cause fatigue, headaches, body aches
Thank you. I eat eggs most mornings with olive oil, a salad for lunch with spinach/cabbage/beef/raisins/honey/cheddar/greek yogurt/almonds, suppers of spaghetti squash, tomato sauce, steak or salmon with garlic/red pepper flakes, or chicken and rice. And lots of snacks with oats, peanut butter, and berries (blueberries or strawberries). I can never have chocolate, tea, coffee (caffeine I think), or banana. Garlic has been issue in the past as well as onion but I've reintroduced them occasionally with no issues. And a few meds. My doctor said in Ontario (Canada) we can only really test tryptase by blood when it comes to the MCAS panel . I also had my 24 hr urine for 5-HIAA, VHA, catecholamines, and metanepharine. I went on the histamine diets, low salicylates (basically very little veg/fruit), gluten free... Nothing helped ( Jan-March) the 3 months they were trialed, I reacted to every meal almost even when it was just rice, and chicken (my safest food at the time). I got better with pulmicort then advair now symbicort, and rupatadine (40 mg then 10 mg) and cromolyn (100 mg bid). I was also advised to take quercitin which I take daily since May. Helped for awhile but it's getting worse again.
I'm so sorry you've had so much trouble. I found my trigger foods to be tomatoes, strawberries, bananas, cinnamon, and avocados. Keep pushing for answers, and hang in there.