Godsgal

Hello, I wish I could help you on the John Hopkins part but I wanted to mention to you that Benadryl is how I started treating my mast cell issues and it helped me greatly. Since I started taking Singulair 10 mg twice a day, and zyrtec at night 10 mg, that has helped me feel really wonderful. I feel really fortunate these meds are working. I'm slowly trying to increase my meds. The zyrtec made me REALLY woozy at first. It knocked me out. Maybe you could take it at night? That's how I started it. Now I take it in the morning too and surprisingly it doesn't bother me. Maybe your doc could order the 24 hour urine methyllhistamine on you? And the tryptase....although a normal one does NOT rule mast cell disease out.

Lieze, He said there is no research to support this histamine free diet but I don't care. I can tell a BIG difference in myself so that's what I go by. I'm continuing the diet!

Wow Kluesyk....have you considered getting test for MCAD? A friend of mine that has POTS/dysautonomia had high catecholamines and they thought she had pheochromocytoma for sure. She went to NIH and everything. But she has mast cell activation just diagnosed by skin biopsy. Your situation just struck me for MCAD.

Hello....I have the opposite problem. I have lost too much weight with this condition. But I wanted to throw in that if you want to exercise do it sitting on a recumbent bike or rowing machine. Hang in there!

I'm grateful you're doing this too! I don't have a connective tissue issue but I did want to acknowledge the great thing you are doing! Thank you!

Go see Dr. Grubb in Toledo!!!! Jenwic on here just saw him and loved him! And he was knowledgeable about MCAD!!

Hello all, I had a really great visit with Dr. Lawrence Afrin in South Carolina. What an incredible mast cell specialist!!!! I would highly recommend him. He is great at corresponding with you via email and consults with your doctor as well. And to boot he had a 7 page synopsis for me of his thoughts, recommendations, meds to try, etc. within a day of seeing him emailed to me along with a letter stating full disability for me. What a doctor! I have since started singulair 10 mg twice a day and that has helped me tremendously. And he told me if I had a really bad reaction to something I could take up to 100 mg of benadryl every 2-3 hours. I'm only 100 pounds so I was floored when he told me that! I also can't believe the problems mast cells can cause....pots/dysautonomia, healing problems, being prone to infections, rotting teeth, cancer, etc. I was very pleased with him as a doctor and he emailed me a full 7 pages plus a letter for my disability case. He has an incredibly knowledgeable nurse as well....Kathy. She told me to give new mast cell meds a chance for a couple days because new meds aggravate the mast cells and they get stirred up for the first few days and after that they settle down. 1-2 weeks at least to see if a new med is working or not and they are only to be started low dose one at a time.And just to throw this in there, the mast cell specialists in Boston wouldn't help me at all over the phone or by email until they saw me in person first. Dr. Afrin was willing to work with my doctor on multiple occasions plus consult with me by email several times prior to me even coming there. There is not enough good said about this doctor and I want to spread the word. Are mast cell problems hereditary? Genetic transmission is rare BUT what is inherited is some unknown susceptibility factor. That unknown susceptibility factor is transmitted and that in concert with some exposure or trigger (surgery, medication, exposure to some environmental stimulus, car accident, etc.) results in the development of mutations of mast cells. It is not uncommon for mast cell activation syndrome to be hereditary. I know it's a bit wordy but it's nice to see the types of meds being used for the mast cell disorders--- Medications recommended for mast cell disorders in his exact words: "She should immediately escalate antihistamine therapy from her current low-dose scheduled H1 blocker to high-dose scheduled H1 and H2 blockers (e.g., loratadine 10-20 mg bid, as tolerated, and famotidine 40-80 mg bid, as tolerated). If she tolerates another non-sedating H1 blocker better than loratadine, or another H2 blocker better than famotidine, that's fine, though loratadine and famotidine (relative to the other drugs in their classes) are thought to have the fewest interactions with other drugs. Doxepin, too, can sometimes be helpful in controlling histaminic effects such as pruritus and headache(typically 25-50 mg bid-tid). Other pharmacologic considerations that may need to be entertained over time include NSAIDs (e.g., aspirin(relatively high dose (e.g., 650-1300 mg bid-qid), targeting a plasma salicylate level of 20-30 mg/dl, or as tolerated), or similarly high-dose ibuprofen (up to 3200 mg/d), naproxen, celecoxib (100-300 mg bid)), benzodiazepines (e.g., lorazepam (0.25-1 mg bid-qid), clonazepam,alprazolam), leukotriene antagonists (e.g., montelukast 10 mg bid), oral cromolyn (100-200 mg bid-qid), nebulized cromolyn (20 mg bid-qid), tyrosine kinase inhibitors (e.g., imatinib 100-400 mg/d, dasatinib 20-70 mg/d, nilotinib 100-200 mg bid), hydroxyurea, azathioprine,cyclosporine, mycophenolate, prednisone and other steroids, PEG-interferon, thalidomide, cladribine, cyclophosphamide, taxanes,daclizumab, or alemtuzumab. Omalizumab, too, has been demonstrated to have some utility in this disease regardless of whether the IgE level is elevated. mTOR inhibitors (e.g., sirolimus, everolimus) in theory might be beneficial, but one small study to date of everolimus showed no benefit. Also, given that activated KIT drives activation of the JAK/STAT pathway which is thought to drive many downstream effects including assorted constitutional symptoms, the forthcoming JAK inhibitors may eventually prove to have some utility, too."

Hello....My heart really went out to you when I read your post. There can be a lot of terrible days with this condition. But there is so much room for hope and possibility for your daughter. She is young and her body is stronger than an older person with this. Patience is definitely virtuous and it helps with this a lot. Whatever you can do to stay strong for her and research this condition would be so helpful. I got this very suddenly and I researched it like crazy. I can tell you some very small adjustments can make a very huge deal in the life of your daughter. Watch her and see when she feels the worse. Is there something that correlates with that? After a shower? Water could be too hot. After eating? Maybe something there. Could she wear compression garments? They have the toeless kind that are a little better but what a difference they make. Perhaps there is an underlying cause for your daughter's illness that you can research when you are up to it. That would make a huge difference as well....to find the root cause and treat it. But hang in there and take one day at a time. The dynakids is a great place for her. This is a hard spot you are in and it's so hard to see the light in all this but believe me it's there. Hang in there and saying prayers for you and your daughter.....Jared

Hello everyone.....I have had LOW blood pressure for like 11 days now....low blood pressure is not new to me but it lasting all day for so long is definitely new. 80 over 60's for like 10 days. I'm walking around like a dizzy, lightheaded, zombie. I take midodrine 5 mg 3 times a day. I drink tons of water and eat salt. Some days it will be in the 70's on top. What could be causing this ridiculously low blood pressure. The midodrine doesn't even seem to touch it. I just took 10 mg. per my doctors suggestion. I feel it numbing, tingling my head, making my brain feel like it's going to explode so I know it's doing something in there. Yet my blood pressure is 88/60. Huh? So my friend thinks I drink too much water. Which that is all I drink. I'm 100 pounds so I know I shouldn't be much higher but my goodness.....my quality of life is really suffering from this. What could be causing this? I know I have some type of mast cell problem. I noticed I took the midodrine and the lump in my throat got much worse and so did my breathing. I have to wonder sometimes if the Midodrine is causing this for me.....like I'm reacting to IT or something. I just want to make sure my sodium isn't thrown off or some crazy condition is causing this. Maybe it's the POTS, I don't know, but this is definitely new for me.

Dr. Vankat (EP) and Dr. Cheschire at Mayo Clinic Jacksonville....I went there and was overall satisfied.

My prostaglandin d-2 is perfectly normal. But we now know that I do have a mast cell problem.

Thank you everyone.... and YES....that was a mis-type on the 180 zyrtec....that would kill us!! Sorry about that!!! Brain fog in action over here! Yes....I took the 10 last night. I think I might try the compounding suggestion as well. Great idea there.

I say if he has found something that is making him better and he's not reacting....don't mess with it! I've had SUCH difficulty with that lately....trying to find something that will actually help and not hurt. I wish you could get in to see a mast cell person. I was just diagnosed with a skin biopsy. I am still amazed at the amount of meds people with mast cell problems take. And if that is the case for him, then a mast cell specialist will help him so much. Has he had a 24 hour urine methyllhistamine test? That would help in a diagnosis. I know that a lot of the mast cell people I know take claritin in the morning and at night. In fact, that is what Dr. Afrin suggested I do...10 mg in the morning and 10 mg at night. If this is helping him, ask his doctors if he can add in an extra one at night. Same with the zantac...to take one in the morning and one at night. On the mast cell forums it would shock you the amounts these people are recommended to take by the mast cell experts!!! You can get an idea by looking at Sarah4 and Mack's Mom's meds. But I will tell you the box says not to and no pharmacist will approve it. Plus my doctors who know nothing about mast cell issues were hesitant until they spoke directly to Dr. Afrin himself. Where are you located? Maybe there is a mast cell doc he can see. But first some of the testing would be great for him to have done to confirm if he has this. The urine test would help, a serum tryptase level (blood test), and others maybe depending on those come up. Just thought I'd mention those just in case. And you mentioned store brands......if he's taking one he tolerates, I wouldn't change it because the ingredients, fillers, etc. are different sometimes when you change brands. So glad though he seems to be responding positively to these meds! Take care and prayers for your son, Jared

I've been on it a couple weeks....helps with some of my uncomfortable difficulty breathing/shortness of breath episodes that happen randomly. No side effects noticed for me either

I see both of you take zyrtec....at night? How would you feel if you took it in the morning? And should I start with 180 or less than that?

May 23rd is the date for Dr. Afrin! So excited!!! I definitely need help. The low blood pressure is terrible. It's taxing me. And my compressions are starting to trigger me so that doesn't work. I only take Singulair, Midodrine, pepcid, and benadryl as needed. I tried claritin and realized I was itching like crazy from it and I was being triggered. I tried allegra a couple of times and I think I was reacting to that so I stopped...it has iron in it, as does zantac...which I reacted to both. The trouble is that I'm reacting all the time to seemingly everything and it's hard to get calmed down enough where I can even try something new. It's an awful state of fear, trying these new meds, having scary reactions, but knowing I need something. I was just prescribed prednisone but I believe this can cause blood clots and I have a protein s deficiency & factor V leiden so probably not a good idea. I'm only 100 pounds so these doses just knock me out! I have been debating about trying zyrtec tonight at bedtime. I took my son's liquid dose in the a.m......just an infant dose, and I felt intoxicated!

Got my bone marrow biopsy and CT scan results back!!!! Thanks be to GOD it's all negative!!! Just have the cutaneous masto!!!! Now to the tricky part.........I feel terrible!!! Low blood pressure, tachy, itching, hives, itchy spots, difficulty breathing, numbness/tingling in throat, face, etc. I can't seem to find any meds that help me. I think the fillers in these meds are messing me up because I get hives, difficulty breathing, itching, or whatever when I take them. Claritin makes me itch....took zantac 75 mg last night and woke up with hives. Took allegra 180 and woke up the next day with hives. I feel intoxicated on zyrtec. Maybe I could try that out at night instead. I do take Singulair 10 mg. I need more meds! Any suggestions on how to add in meds and get relief?????

I like my prescription grade mediven compressions....they work great!

I'm getting a ct scan today....very nervous. Praying lots...

I think I'm hitting my breaking point. I found a firm mass in my stomach this morning when waking up....I feel my heart beating inside of it. Good grief. I'm really skinny.....only 100 pounds. I pray to God this is just an organ and not an aortic aneurysm. I had this a few weeks ago but I never felt it again. I assumed it was food from a heavy dinner. Now I'm not so sure. I just laid down to try to find it and I can't. I have always found it in the mornings when I wake up. But as the day goes on, I can't find it. I try so hard to support everyone on here. I have needed that from you all lately more and I appreciate what you all do for me.

I'm just wondering....do us MCAD/masto POTS people.....do we get better??? Ya know, and lead normal-ish lives???? I remember when I first got all this and I was bedridden trying to be positive....I started on some meds and I got some better. I'm hoping and praying it will be the same with this. I'll get the right med and it will help me so much.

So yesterday was day 5 of constantly low blood pressure....knock me out, lay on the floor low blood pressure. Top is in the 80's, had one episode where I was really jumpy.....77 on top. Mercy! And that's after 5 mg of Midodrine 3 times a day to raise it!!!! I just happened to start Amoxicillin for a sinus infection 5 days ago. So I'm thinking that's the culprit. I am not taking any antihistamines right now......only pepcid and singulair. So 2 days ago I take 60 mg. of allegra and it really didn't seem to do anything....although that same day I was REALLY orthostatic....jumping around from 77/50 blood pressure up to 120/90 in just 3 minutes. Yesterday I took allegra 180 mg. in the afternoon. My throat started burning, I felt some weird breathing stuff but I figured I was in a hot car and extremely nervous about taking the stinkin' pill to begin with. Well this morning I woke up and I have more brown spots, one the size of a dime, a lovely speckled rash, and some of my previous brown spots have turned red and swollen. What in the world?!? That has never happened before. So is it my antibiotics, the dust mite ridden bed I sleep in, or the allegra???? One thought is lately I get adrenaline surges every night I lay in my bed. But that's after I take these antibiotics too. My allergies are always bad in the mornings. I'm confused.....don't know if I should keep taking the antibiotics, or keep taking the allegra, or what? I tried taking Claritin and don't tolerate it. I gotta find an antihistamine that works!!

Yes!! I have had 3 of them and had it all 3 times. Even the techs told me that it was normal for people to get that. Hope that makes you feel better.

I do believe that the rash can turn into brown spots. And you can also develop freckles from sun damage as an adult. The easiest way to find out is to get the mast cell stain but make sure you have a doctor that knows what they are looking for. My dermatologist told me that TMEP looks very benign and is very often overlooked by skin doctors.

I can't tell you why but wiping myself down with a cool rag works a lot of wonders for me when weird stuff starts flaring up with this condition. It just does something to my body and makes it stop the weird place it starts going. I can be pretty sensitive to stimulation too. I have to avoid looking at things or certain sounds....a misused blackboard would send me to the crazy place! I agree with the other poster about distraction as well.