Christy_D Posted May 14, 2012 Report Share Posted May 14, 2012 We saw Dr Afrin today for my son's follow up appointment. MCAS is definitely an issue based on the test results. His PGD2 was 2.5 times to high and Heparin was the highest the doctor has ever seen. Both of these are produced by mast cells. So histamine is not always the issue.We are starting an aspirin therapy. This will be in addition to the H1 and H2 he is already taking that hasn't helped much. We are giving him .5 of a baby aspirin 2 times per day and upping the dose every 4 days until we finally end up at 975 mg of aspirin 2 times per day. We have to see if he has any issues with aspirin, he has never had any since you don't give children aspirin any more.The doctor reminded us that this can be a long process of trial and error and he starts with the cheapest medicines first. He said testing for each mast cell mutation is another 10 years down the road. Once that is in place they will know which meds help which mutation. (something to that effect).We have a follow up in 2 months, but can cancel if our local doctor truly in fact is willing to communicate with Dr Afrin for treatment plans.He told us many patients with MCAS live a life in misery until they are finally correctly diagnosed. It may take a while to figure out the correct treatment but most patients usually find some kind of combination of medications that are helpful. Again, slow process, one medicine change at a time.I am hopeful we find the correct combination of medications, but sometimes I feel like Charlie Brown, they set that football down for us to kick and then yank it away every time. We really want to kick that football this time!Christy Quote Link to comment Share on other sites More sharing options...
brethor9 Posted May 14, 2012 Report Share Posted May 14, 2012 Christy I wish you all the best and hope your son is on the road to recovery soon hope you score a goal!! I wish we had a specialist like Dr Afrin here in Canada...I have been consulting with him by email but unfortunately we have none of the applicable testing available here in Canada except for Tryptase....there is talk of it but it could be ages away right now mine is based on clinical symptoms only and only stumbled on it through an oncologist I worked with. Crossing my fingers for you Bren Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted May 14, 2012 Report Share Posted May 14, 2012 Christy:So glad you are getting some answers to the pieces of the puzzle. I hope your son starts feeling better soon. Quote Link to comment Share on other sites More sharing options...
issie Posted May 14, 2012 Report Share Posted May 14, 2012 Yeah, Christy - there is another forum I'm on that we are discussing the fact that aspirin is helping some. I just added it to my things to take and have only done it for two days and felt some better. What did the doctor say was the reason for the aspirin - except for anti-inflammatory issues? Some are going up on their dose - but, I don't recall any of them being at that strength. Why does he feel that this will be the amount for him to be on?Issie Quote Link to comment Share on other sites More sharing options...
Christy_D Posted May 14, 2012 Author Report Share Posted May 14, 2012 I'm not sure why aspirin is helpful, he might have mentioned it but I didn't retain it. These appointments are always so over whelming with information. That dose is where he is finding it most helpful, if my son can tolerate it. That is why they wean up from such a low dose, slowly. It seems like whenever my son is on a medication, it is on a dose so much higher than others take. At one point he was on 175 mg of doxepin(enough to take down an elephant,haha), which apparently most people don't go over 40 or 50 mg.Crossing my fingers this will at least be of some help. Quote Link to comment Share on other sites More sharing options...
CharmedLinz Posted May 14, 2012 Report Share Posted May 14, 2012 Christy,Soooo glad it went well.....been crossing my fingers for you.What does the PGD2 stand for???Also the Heparin level, was that just off a basic blood draw??It's probably in some of your posts but what have your son's tryptase levels been like?I know I can get a Heparin drawn just want to know if it's a basic draw.Let us know how the aspirin goes.I love hearing that they are within 10 years of actual tests, that's better than 50 years or the dreaded "I don't know". Quote Link to comment Share on other sites More sharing options...
Christy_D Posted May 15, 2012 Author Report Share Posted May 15, 2012 The heparin was a blood test, they took 12 viles from him on our first visit. PGD2 is prostaglandin D2. My son had his tryptase serum test done over a year ago and it was fine, but I didn't see the results in writing. The doctor who ran the test just told me over the phone and said mast cell was not an issue. Of course, he wasn't a specialist..just a pediatric GI doctor. While we were at the Mayo last fall I asked that doctor about mast cell, still not convinced it wasn't an issue and he did a urine test. That test was also fine, but I know Dr Afrin INSISTS on the urine being kept cold the entire 24 hours it is being collected. I will update on how the aspirin regime is working. I didn't realize how high a dose 975 mg 2 times per day really is. My sister in law, who had a heart attack 2 years ago, is on 325 mg once a day. So 975mg 2x per day is 6 times higher! Quote Link to comment Share on other sites More sharing options...
DoozlyGirl Posted May 15, 2012 Report Share Posted May 15, 2012 Spent the afternoon with Dr Afrin and his staff. He confirmed many of my suspicions and feels that misbehvin' mast cells is the only disorder that can explain my vast array of diagnoses and dysfunction. Will have to see if any of my testing comes up positive before he can confirm my diagnosis. Meanwhile he advised me to hit the antihistamines HARD whenever I have any symptoms. Prostaglandins can cause pain and swelling, which is why NSAIDS (ibuprofen, asprin, advil, naproxen) will block these, often eliminating pain. But many of the pain meds also flare mast cell reactions, so tylenol and tramadol are recommended. While asprin can flare symptoms, at the right dose, asprin can also block the prostaglandins. Dr Afrin also shared that my forced sleep episodes are likely caused by PGD2, which he calls the worlds best natural sedative. Most of the 17 tubes of blood I had drawn today also needed to be drawn into prechilled vials and put on ice as soon as drawn. This chilling stablizes the mediators and may influence the results. Sounds like no one else in the country is talking this much care in chilling and then keeping the samples cold throughout the entire process. Urine must also be kept on ice/refrigerated the entire collection time, processing time and testing time. Lyn Quote Link to comment Share on other sites More sharing options...
issie Posted May 15, 2012 Report Share Posted May 15, 2012 Ha! Tramadol is good for me. One of my best POTS meds. Why does this work? I thought it was just a band-aid. It does help with pain and works on seratonin and dopamine levels. Given off label to those that don't tolerate SSRI or SNRI's and lowers NE levels. (Just a side note - I'm really, really afraid of tylenol cause I've heard some stories of it doing major liver damage - even at recommended doses - if you don't eat with it or if you already have a weak liver. Lyn,Did he explain about the asprin more? I'm still trying to figure this one out - other than it being an anti-inflammatory and it thins the blood. What's it supposed to do?Christy, I'd ask about that high a dose - cause it does thin the blood. That sounds like a lot and I've also heard of it causing stomach irratation and ulcers if too much is used.I had to hit the anti-histamines hard today. And man did it make a fast difference. Yayyyyy!!!! Ate something two different times that sent me into an eposide. I guess when you get in that sensitive mode anything can set it off.Issie Quote Link to comment Share on other sites More sharing options...
futurehope Posted May 15, 2012 Report Share Posted May 15, 2012 You all got so much more information than I did. When I had my first visit, he spent most of the time trying to get me to recall all my difficulties. I forgot to mention several things I have had in the past. There are too many weird things and many I had forgotten.Anyhow, once he was done asking questions, he ordered tests, and I won't be seeing him until July 9th - a long way off.Thanks for sharing your info. I want to know as much as I can. It's difficult for me to sit and wait. My visit was on April 30th. Quote Link to comment Share on other sites More sharing options...
LindaJoy Posted May 15, 2012 Report Share Posted May 15, 2012 Hey, all,Lyn said it when she said the aspirin blocks prostaglandins. It's one of the things mast cells dump if you have a mast cell activation problem. Histamine isn't the only thing people with MCAD have a problem with. Prostaglandins can cause terrible symptoms, as well, and aspirin blocks these. My prostaglandins went pretty high after my induced episode at OSU. This is one reason the mast cell doctor who was overseeing the testing thought I may have a mast cell activation problem.Christy, I'm so glad Dr. Afrin is helping your son. I know there's going to be a lot of trial and error, and he's not going to feel well for a long time, while you find the right regiment of meds, but getting a diagnosis is the first step, and thank goodness for that first step!Hang in there and blessings to you and your son.Lindajoy Quote Link to comment Share on other sites More sharing options...
kclynn Posted May 16, 2012 Report Share Posted May 16, 2012 Christy, I SO hope that you get your answers this time. Quote Link to comment Share on other sites More sharing options...
anna Posted May 16, 2012 Report Share Posted May 16, 2012 I am glad you are onto something here and hope your son soon finds a regime that helps him reduce his issues.The mast cell angle has been of interest for me for a while as my children have some very odd allergy type symptoms, the main being a swelling throat and breathlessness that comes out of the blue, but is reduced when given high does antihistamines. The big problem is that my children get angiodema and GI ulcers when they have NSAIDS of any sort. Quote Link to comment Share on other sites More sharing options...
Christy_D Posted May 17, 2012 Author Report Share Posted May 17, 2012 I just read from the internet "Prostaglandin D2 production and circulating levels are drastically suppressed by aspirin and Indomethacin." So I guess that answers the 'Why aspirin' question. Thought I would share that.Christy Quote Link to comment Share on other sites More sharing options...
anaphylaxing Posted May 17, 2012 Report Share Posted May 17, 2012 I hope it helps him Christy!Agree about aspirin, it inactivates a COX II enzyme which is required for prostaglandin synthesis. But some of us mast cell people will have severe negative reactions to aspirin. Let us know how your son is doing. It is good to have results to know which mediators to target!I wonder about the ASA and the known elevated heparin....most ppl take ASA for the antiplatelet effect to help prevent heart attack. I wonder if those of us with elevated heparin are at higher risk of bleeding when also on ASA, or because of our messed up PGs does it not have that effect. HmmmmI've been tempted to trial aspirin at home myself but have been too concerned about and adverse reactions and my docs mentioned it should be done in hospital if I try it. Did he say if your son's risk of Reye's syndrome from aspirin is too small to be relevant given his MCAS? Quote Link to comment Share on other sites More sharing options...
Christy_D Posted May 18, 2012 Author Report Share Posted May 18, 2012 I read not to give aspirin to children under 16 and another site said not under 19. My son is 17, 6'2" so quite adult sized. So I'm not sure about Reyes Syndrome. We are starting out on a very low dose and gradually working our way up. We are to monitor and look for any reaction or side effects.FYI- I also read PGD2 effects sleep and lowers body temperature. Quote Link to comment Share on other sites More sharing options...
issie Posted May 19, 2012 Report Share Posted May 19, 2012 I looked up PGD2 and they are also connecting it to baldness and hair loss. They are doing studies to try to block this enzyme process thinking it might cure/reverse baldness and hair loss. It also has connections in asthma. Since, I have alopecia and am losing my hair - I wonder if this could be the cause. Since mast cells release large amounts of this and they are finding an increase of this in the areas of hair loss - it makes you wonder. There have been so many people, women especially, worried about their hair loss. What if it is this protein and we could lower it by taking aspirin? I guess, I'll be on the bandwagon - trying to see if this will make a difference. I've tried all kinds of things to stop my hair loss and nothing is working. I'm even doing an expensive laser light thing - and it doesn't appear that it is working either. I'm supposed to go back for a 3 month check to see if there are any new microscopic hairs - that I can't see. But, my hubby - isn't noticing any new hair growth and neither am I. Except - where I lost that round circle of hair (alopecia) and took the steroid injections in my head - hair is coming back ---and it's a pure silver white color. No pigment color. The docs say that alopecia and vitiligo attack melanin (color) and won't attack where there is no color. Since I have both of these things - interesting that they are so closely related.Christy, what symptoms/side effects are you supposed to be looking for? And do they still want you to go up so high in the dose amount?Issie Quote Link to comment Share on other sites More sharing options...
futurehope Posted May 19, 2012 Report Share Posted May 19, 2012 Issie,Boy, can I relate to you. I paid big bucks for the hair laser thing, sat under it three times/week for a year and noticed nothing. If this MCAS turns out to hold the key, maybe we will be able to grow our hair back? Wouldn't that be nice.Sorry about hijacking the thread. Quote Link to comment Share on other sites More sharing options...
issie Posted May 20, 2012 Report Share Posted May 20, 2012 You're not hijacking the thread.Let's hope this could be a piece of the puzzle and maybe we find a big answer to a lot of things and issues. Wouldn't that be wonderful?I started out with going to sit under the laser lights at the doctors office - 3 times a week and when I went into my low in the last 3 months - couldn't do it. So, there is a laser cap that you can do at home (it's supposed to be even more powerful and better then the doctor office version) - and that's what I've been doing. Can't tell that it is doing anything But, still giving it a go.How many of you with MCAS issues have lost or are losing their hair? I wonder if this could be a part of the problem. It is considered an autoimmune condition with me because of the alopecia (coming out in clumps) and also vitiligo. But, what if part of the autoimmune issue is connected to the PGD2 protein. I wonder if there has ever been any studies on that and if there is a connection.Issie Quote Link to comment Share on other sites More sharing options...
Christy_D Posted May 20, 2012 Author Report Share Posted May 20, 2012 Issie,We are looking for easy bruising and tinnitus. There was something else, I'm going to have to find my notes from the appointment. We will stop at the dose where there were no side effects if that occurs.As for hair loss, I've read that also and am not telling my son. He is very attached to his hair and has always kept it longer that most boys. He is living in the wrong times, he loves 80's music and the big hair from that era. His hair is his trademark. When he played soccer, other teams always thought we had a couple of girls on our team because of the hair. I don't want to worry him about losing his hair since he has so much already to worry about. We'll cross that bridge when we get to it, unless the aspirin helps.Christy Quote Link to comment Share on other sites More sharing options...
issie Posted May 20, 2012 Report Share Posted May 20, 2012 Well, lets hope that what you're doing will prevent it in the first place. Interesting how things start to come together sometimes. I'm a 70's teen and love rock n roll and disco and of course the long hair too. So, totally understand. Maybe, we're on to something here and it will save his hair and get some of ours back.Issie Quote Link to comment Share on other sites More sharing options...
issie Posted May 21, 2012 Report Share Posted May 21, 2012 There are other things that may block PGD2 other than aspirin. Although aspirin was said to be the best on all the forums and research papers, I read today. But, things like Quercetin, Boswellia, Olive Leaf (lutelin), Magnesium, Tumeric, Ginger, Fish oil, indole, maritime pine bark, milk thistle - all seem to also have properties that may block it - in that they help with inflammation - NSAID's were said to help. Some of these things wouldn't be good for some because they will do more then just block PGD2 - they can also lower your blood pressure and some will lower NO levels. But, there may be other alternatives then just the aspirin. It will be interesting to see how people tolerate this. I know aspirin can also thin your blood - so you must be careful with it.I'm also wondering if any others are having problems with the H1's causing really bad fatigue. I'm taking Claritin - but, it still is making me tired and sleepy. Thinking to going back to my higher doses of Quercetin and see if that works again. I used to be able to control the allergy things with this and B-complex and Vitamin C. I also, used to take ginger and tumeric regularly and stopped because of some questions as regards to the effect on NO levels. Haven't really found the H2's to be very tolerable to me - they all make my stomach hurt. I'm better with zantac over pepcid - but was better with tagament over either of these. But, due to the recent research about it not being good for histamine intolerance problems with DAO - had stopped the tagament - but, it didn't hurt my stomach. I would like to see how others are doing on their regimen and how it's affecting them.Issie Quote Link to comment Share on other sites More sharing options...
anaphylaxing Posted May 22, 2012 Report Share Posted May 22, 2012 Oh your son sounds very adult like! I wouldn't think Reyes would be a big concern at 17, but who knows!I get tinnitus as part of my MCAS symptoms. Started on no meds. Bizarro. I also had easy bruising before but I have joint hypermobility, think skin etc.I've been tempted to try aspirin. I hope it goes well for him . Let us know! Quote Link to comment Share on other sites More sharing options...
futurehope Posted May 22, 2012 Report Share Posted May 22, 2012 I'm better with zantac over pepcid - but was better with tagament over either of these. But, due to the recent research about it not being good for histamine intolerance problems with DAO - had stopped the tagament - but, it didn't hurt my stomach. I would like to see how others are doing on their regimen and how it's affecting them.IssieFYI I take Tagamet. Zantac causes insomnia in me as does Pepcid. Besides, the Zantac uses red dye and the Tagamet does not, so Tagamet it is for me, unless Dr. Afrin convinces me otherwise. Quote Link to comment Share on other sites More sharing options...
issie Posted May 23, 2012 Report Share Posted May 23, 2012 I'm better with zantac over pepcid - but was better with tagament over either of these. But, due to the recent research about it not being good for histamine intolerance problems with DAO - had stopped the tagament - but, it didn't hurt my stomach. I would like to see how others are doing on their regimen and how it's affecting them.IssieFYI I take Tagamet. Zantac causes insomnia in me as does Pepcid. Besides, the Zantac uses red dye and the Tagamet does not, so Tagamet it is for me, unless Dr. Afrin convinces me otherwise.Yes, that will have to be what it is for me too - If I have to use a H2. But, it will lower DAO levels and that can cause histamine intolerance issues. So what do you do???? I tried cutting the zantac in half and using it am -but, it just doesn't agree with me and pepcid really hurt my stomach. So, not going to use that.Issie Quote Link to comment Share on other sites More sharing options...
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