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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> Damage from mediators, regardless of antihistamines??? http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1296362335 Message started by Joan on 01/29/11 at 16:38:55

Title: Damage from mediators, regardless of antihistamines???
Post by Joan on 01/29/11 at 16:38:55

I don't know if I can clearly state my question, but I'll give it a try.....

If I understand this correctly, our mast cells are dumping histamine and other mediators much of the time, even though we take antihistamines. The antihistamines keep the receptors blocked, so our body doesn't really "notice" the mediators. So, the question is... Do the mediators still damage our tissues and organs, etc., even though we aren't reacting to them. Or is it the sheer numbers of mast cells that damage our bodies by edging out other useful cells in our bone marrow and organs? Or both or neither!?

Could use some medical insight, because I've always tried to take the fewest antihistamines, and maybe I should take enough so I have no symptoms at all. Do the researchers think it is healthiest to use more gastrocrom to keep the mast cells from dumping in the first place? (I'm generally a leaker, although I've had several instances of shocking from antibiotics.)

Title: Re: Damage from mediators, regardless of antihistamines???
Post by Riverwn on 01/29/11 at 18:59:54

I can only give my opinion, youve dealt with this much longer than I have.. and with such good humor too LOL.. ok, seriously.. I would say yes...because I know I have damage and the odds are that damage is from mast cell activity. I think the antihistamines block the receptors to a certain extent but never 100%. I read an article once that even said it is not possible to block 100% of mast cell activity --they are needed for communication in the brain and other urgent processes, so life itself would not be possible without some mast cells. To prove their point they stated that there has never been an autopsy done where they didnt find mast cells present.

In my opinion, I think youre right--about taking enough antihistamines to stop as many symptoms as possible.. I think any symptom means activity and possible damage.. I can say that when I shock I have erythema about 3 to 4 days after it--yesterday I flushed for the first time in about 3 weeks... and about 5 hours later I noticed erythema again on both arms..it didnt take me shocking this time and it didnt take me 3 to 4 days to show up... so my pattern is changing, not quite sure why. I pop an antihistamine anytime I feel a symptom..maybe it just makes me feel safer? lol
love ya
me

Title: Re: Damage from mediators, regardless of antihistamines???
Post by Joan on 01/29/11 at 20:25:38

So then gastrocrom would be the best med, because it stops the degranulation before the mediators can damage anything?

Title: Re: Damage from mediators, regardless of antihistamines???
Post by Lisa on 01/29/11 at 20:42:25

Joan,

Its are really valid question!! I wish I knew all the answers!

From what I've read even of the different experimental studies, the answer is Yes! It still does damage because we can never block it 100% because for many of us, the degranulation is chronic, meaning non-stop. Mine is anyway. And since histamine is but one of the many chemicals being put out by MCs, then taking the antihistamines is but one solution.

I've been really impressed at how good Singulair makes me feel, in that I feel almost normal when I take it! The other day I ran out of it and we couldn't buy it for a few days and I shocked just due to to the lack of the leukotreine blocker! It really, really impressed me cause when I told my doctor about it and asked her what it was the sent me over, she said, Lack of Singulair! I sometimes wonder if there are any other meds that are blockers we could take to deal with the other med that are constantly being dumped into our system! Yet it also makes me wonder what kind of damage they do as well!

I'm afraid that I've not studied enough to know those answers, but yes, Joan, damage they are doing, even if just calling in other inflammatory cells.

Is a mast cell inhibitor our best friend YES, YES AND YES!!! The more we can inhibit our MCs, the best! Why? Because this means less MC mediators released and therefore less damage and with this more stability. This is why my dose of Ketotifen is up to 6mg and I"m thinking to take it up another 2! I don't see what harm it could do versus the harm the mediators cause me. I'm still considering it.

Hugs!

Lisa

Title: Re: Damage from mediators, regardless of antihistamines???
Post by ruth on 01/29/11 at 23:30:49

It is a really important question, and probably one for the specialtists who really know their mast cells. I have always tended to undermedicate for anything, and have not launched into medications for my son without it being sugeested that it is imperative. Up until now the medical advice has been typically about dealing with immediate symptoms that become unbearable, but as I come to understand this better I can see that he might need to be medicated as a more preventative measure. I am concerned about putting him on long term medications at his age, and the domino affect that we might be creating for him to deal with long term, but need to understand the long term consequences he might have from living with his immune system doing whatever it is.

As the mast cells are releasing other mediators, then those like heparin could be having a detrimental affect, and what are the effects of too much of all the other mediators? As Ramona said, our bodies need some mast cell activity, so how do you know if you are suppressing the mast cells too much? [/size]

Title: Re: Damage from mediators, regardless of antihistamines???
Post by DeborahW, Founder on 01/30/11 at 00:35:23

I will email Dr Akin and ask him this question next week. I have a feeling that he will tell me that it is not in our best interests to always jump straight to gastrocrom if the more minor meds do the job.

Title: Re: Damage from mediators, regardless of antihistamines???
Post by Starflower on 01/30/11 at 05:22:16

A different perspective...

I'll be interested to hear what Dr. Akin has to say, but in my case I beg to differ. Histamine causes annoying... sometimes disabling or even life-threatening... symptoms, but I don't think antihistamines alone are the answer. Personally, I can say they saved me from the worst attacks (the kind that landed me in the ER), but I still felt BAD. I had no energy, I was dizzy all the time, nauseated, having headaches and tachycardia, mild kidney damage, joint pain that made it hard to fall asleep... that kind of physical stress is hard on your body!!

Another important point about mast cell stabilizers... they also prevent the release of cytokines. IL-6, for example, stimulates the production and differentiation of B-cell lymphocytes. That might not be a problem in a normal person, but in someone with an autoimmune disorder this is a BIG PROBLEM. I do not want my body producing any more B cells than is necessary for survival!!!!! Some activity is necessary to clear infections, but my immune system is using my B cells to manufacture antibodies that attack my own organs. Flooding my body with IL-6 is not a good idea. I consider cromolyn sodium to be an essential part of my medication regime.

Now... if you're in the lucky 80% of the population that is not at risk of developing an autoimmune disorder... maybe a mast cell stabilizer is not essential. I seriously think each one of us must always consider what kind of mast cell disorder we have and whether the advice... even coming from Dr. Akin... applies to us specifically.

I know it sucks taking medications for the rest of your life... but I'd rather take them and work full-time at a job I love, raise my kids, and stay married... than end up on SSD. Because seriously... that's where I was heading before I added Gastrocrom and Singulair.

Heather

Title: Re: Damage from mediators, regardless of antihistamines???
Post by Riverwn on 01/30/11 at 07:42:12

And thats where I am now. Its ok for me, even good for me to be able to live as healthy as possible--for me. I really want to hear what Dr Akins says too.. but I cant help but have this gut reaction that tells me, anytime I have a symptoms, there is activity and I should stop it--maybe not with the strongest med but definitely something I respond to well. Symptoms mean mast cell activity which means an opening for damage... and not stopping symptoms means you now feel rotten and that alone is another trigger for us to get stuck in that cycle of reacting and one step closer to shocking. I feel that controlling symptoms is important to not advance any further with this disorder , to not react stronger or quicker in the future and to prevent damage. Just my gut reaction.
Hugs,
Ramona

Title: Re: Damage from mediators, regardless of antihistamines???
Post by Buster on 01/30/11 at 08:15:13

Starflower wrote on 01/30/11 at 05:22:16:

[...]

Another important point about mast cell stabilizers... they also prevent the release of cytokines. IL-6, for example, stimulates the production and differentiation of B-cell lymphocytes. That might not be a problem in a normal person, but in someone with an autoimmune disorder this is a BIG PROBLEM. I do not want my body producing any more B cells than is necessary for survival!!!!! Some activity is necessary to clear infections, but my immune system is using my B cells to manufacture antibodies that attack my own organs. Flooding my body with IL-6 is not a good idea. I consider cromolyn sodium to be an essential part of my medication regime.

[...]

Heather,

The information you posted about IL-6 is really interesting. I have two autoimmune conditions: Hashimoto's thyroiditis and dermatomyositis. Treatment can get really complicated when the effects of one disease you have can have a significant impact on others.

Buster

Title: Re: Damage from mediators, regardless of antihistamines???
Post by Starflower on 01/30/11 at 09:34:46

Quote:

Treatment can get really complicated when the effects of one disease you have can have a significant impact on others.

Buster

Isn't that the truth! In fact, if you have a "co-morbid" condition making it difficult to treat your mast cell disorder (or vice versa), I strongly urge going to one of the real specialists like Dr. Akin or Dr. Castells. This forum is great for support, self-education, and learning how to make lifestyle changes, but none of us are doctors. Not everything we say applies equally to everyone else. This is very important to remember!

Heather

Title: Re: Damage from mediators, regardless of antihistamines???
Post by Joan on 01/30/11 at 14:44:59

I guess I need to be tested for the auto-immune type of SM, since I already have one auto-immune problem (Hashimoto's thyroiditis). Guess I'll start back on the gastrocrom. I just keep forgetting to take it, and it's a pain to carry around.

I went off it because my digestive system was so much better. Debbie, thanks for checking with Dr. Akin. I'll look forward to his opinion.

Title: Re: Damage from mediators, regardless of antihistamines???
Post by Lisa on 01/30/11 at 16:30:32

Ruth,

I can really empathise with your concerns for as a mother, you are making decisions for your child which he will have to bear out for the remainder of his days. How serious are the medications we have to take on a long term basis? Those of us who are already around our 40s or older don't think too much about this even though it is in the back of our minds. But to consider a child who may find he must live with these meds for his full lifetime, this is a heavy question and one that really deserves a serious answer from an authority.

However, you must balance this as to considering what the other angle of this is. Those mediators and especially anaphylaxis do a whole lot more damage than I'm sure the antihistamines do. If he were taking steroids, that would be a different issue then for they are known for doing terrible damage. But the antihistamines are not.

If you read about the carcinoid syndrome, a tumor which produces mediators similar, but not the same, as mastocyotis, they say that although the tumor is a cancer, it is a fact that the patients will more likely die from the mediators those tumors release than from the cancer itself! Although the Carcinoid produces an almost identical constellation of symptoms that masto does, the mediators released are far more harmful and known to cause serious heart damage and other problems. Thankfull masto is not so and we are dealing with a much more kinder set of mediators than those patients face. However, we deal with anaphylaxis a very serious reaction which causes quite a lot of strain on our bodies. This is what you must consider, which is the lesser of the two evils here? You son can't live a good quality of life feeling as miserable as he must feel. I don't know if you have masto or not, but if you do, then you know how awful it is to feel this way constantly! As an adult there are times when all I want to do is crawl up into a ball on my bed and just lay there and try to forget how awful I feel! It's hard to do my regular duties as a mother and there are days when I just can't! How much more difficult must it be for a child who can't understand why he feels so rotten? How these kids can manage to sit all day in school studying subject like math and science when they don't see any purpose to it all, I don't know! God help them when they're feeling rotten and how they manage to pass, that's something I can't figure for my brain will literally shut down some days and I can't even answer a simple question posed to me by my 13 year old son!! So, although I realize that it's a hard choice to make, I think that you've got to try to put yourself in his shoes and say, which is worse and which is better and use that to help you not think of the things that are beyond our control like the long term damage. The chances are, your son will grow out of his masto, which 90% of the kids do! Let's hope that he's one of them!

I hope this helps!

Lisa

Title: Re: Damage from mediators, regardless of antihistamines???
Post by ruth on 01/31/11 at 00:45:52

Lisa one of the most amazing things about this forum is being heard and understood. Thank you for your words of advice, but especially when your words give validation and expression to my experiences and feelings. I have come from an appointment today with a new deramtologist, and I am still trying to figure out what I think about what he said. I came away feeling pretty discouraged, although I went in knowing this could be another dead end consultation. It wasn't quite that, but I'm not sure exactly where it leaves us. I think actually a lot of it I should feel positive about, but he ended by basically implying that I am a part of the problem and telling me to just treat him like a normal teenaged boy and let him get on and enjoy his life. He doesn't seemt o get it that that is exactly what I am trying to do, by geting him in a healthier state to do just that. at the moment whatever his body is doing is preventing him from living life like other teenagers, and that only by getting to the bottom of it and doing whatever will relieve his symptoms effectively will he be able to do that.

On a positive note, as I think back on the consultation, he gave the best explanation yet for the mechanism that is likely going on, and essentially it is a case of 'mast cells behaving badly', but he just wouldn't go near any discussion about an activation disorder vs mastocytosis. I suspect he is just not current with the MCAD idea, and took his previous test results as definitively negative for SM therefore not interested in any further testing. He then reverted to a 'treat the symptom' approach, and is more focussed ondealing with histamine levels as distinct from mast cell activity. Because Cameron is actually really well right now, relatively speaking, I'm not really looking for immediate symtpom relief, he lives with it at the moment, but I do think it still affects him. I am more concerned to understand what is underlying his pattern of reactions over the years for a more effective response to them when they return with a vengeance, which they inevitably do.

He did suggest we start on antihistamines, but only zyrtec/xyzal, and I'm not sure if he is just humouring me and thinks there's no harm in it. it seems like a littel bit of a simplistic appraoch when his symptoms have been skin, GI and migraine. I think I can work with this doctor to a point, but I don't like that he doesn't entertain my questioning. He seemed to be implying that I am making too big a deal of Cameron being sick, when he actually knows nothing about us, barely listened to what we had to say, and like many doctors forgets that we have to come to them and emphasise the 'illness' to get our message across to them. That doesn't mean I spend my time with my son talking about it obsessively. Just because I am bringing him to a doctor to find some answers doesn't mean I am treating him like an invalid the rest of the week. I may be better off with my family doctor, who is happy to take a more collaborative approach with me, and does have respect for my position as his mother, she knows us and is prepared to listen. I think she will be prepared to look into how best to handle this, even though she admits that she knows very little about mast cell disorders.

One interesting point the dermatologist did make is that there can be a kind of 'histmaine burn out' - has anyone heard that idea before? I was explaining that Cameron has been better in the last month than he has been in a year or more, after a particularly bad patch in November. He said that can be a cyclic pattern with histamine levels - does that sound familiar or credible?

Sorry for having a bit of a rant, but I need to deal with my frustration over another arrogant specialist. In time, if we stick with this one, he may still have something to offer from the medical perspective, if we can get to the point of delving a little more into the sorts of questions you raise Lisa, which is exactly where I am coming from, about Cameron's long term best interests. I think I will need to figure out if we can get to a point of mutual trust and respect, otherwise I don't think I will be able to get the answers to the questions that I need to be able to ask.

Thanks Lisa for the advice and understanding, I won't address all the points you raised specifically now, but suffice to say you do know where I am coming from, your questions and comments reflect that exactly, and that means a lot to me just to be understood.

Ruth

Title: Re: Damage from mediators, regardless of antihistamines???
Post by Lisa on 01/31/11 at 02:06:40

Ruth,

This thing of dealing with doctors is exhausting! Welcome to the world of the masto patient! I teasingly call myself Lisazilla and imagine all kinds of little white coated doctors scurrying away from me beneath my feet! What a Lisazilla needs most is a DOCTORZILLA! And you know how easy they are to find! HAHA ;D

I FULLY understand your concerns, Ruth because I'm a mother as well. I wish that I could lend you my dermatologist because she's a DOCTORZILLA! She's learning about the MCAD form of masto with me for she never knew it existed either. Yet, she's got an open mind and perhaps you can open up your doctor'd mind as well. My doctor had a really hard time accepting MCAD but she couldn't deny her own eyes for she saw me with the flush and she saw my high histamine levels and she listed to my reports of how I would get sick. Yet she didn't know that masto had a hypertensive form and she hadn't any aggregates of mast cells to confirm anything and so for a long time she remained in doubt! But, God bless her, she knew I had nowhere she could send me for I live in Brazil and she is our highest authority. She was stuck with me and she's not repented of it for although I've challenged her, she's grown with me and now shes returning to university to get her PhD at 57 for my case has opened up a new world of masto she didn't realize existed and it's got her excited!

Yet, I also understand your concerns, Ruth, for I'm very concerned about my eldest son who just turned 20. He's been diagnosed with proctitis and was having intestinal bleeding. My gastrologist didn't think too much of it until I questioned her about what my own case might have to say about this formy case is autoimmune masto and autoimmune diseases are known to run in families and although nobody in my family has a history of an autoimmune disease, because I've shown these markers, I had to question what is going on with my son. So my gastro heard me for proctitis can be autoimmune caused. Sure enough some of the very same markers I've got, he's showing, especially the ANA test. His is 1:320, just as mine is! Well, I've tried to find an immunologist, but nobody wants me and they won't take him either! So I threw this concern of mine at my dermatologist - she's also a pediatrician! She got very concerned about this and had me get my gastro do another endoscope and colonoscope with biopsies taken up and down the line. I had the tested for masto and the findings are astounding! What to the gastro's naked eye looked like nothing, has turned out to be an eosinophilic and lymphocytic colitis! My dermatologist is floored and she's contacted a hematologist at a major university and asked her to take his case for this doctor likes hard cases and we're going to see where it takes us! Although in my case we don't find any eosinophils, we do find the lymphocyte aggregates and so all of this is somehow connected, but how exactly, we don't know, but my dermatologist suspects that my son may be in the inicial processes of developing masto, but without any answers, there's just now way to know!

Ruth, the point here is that you MUST keep pushing for answers! You also must teach yourself about masto!! There is no other option!!! You've got to educate yourself as to this disease so that you can feel less helpless with the doctors and speak to them in a language that they can understand. This will make it so that you don't fell so impotent with them and you will have more confidence in yourself. Doctors don't always like it when a patient knows so much, but they do give more respect to those who can understand what they are talking about. This dermatologist has a typical response and in truth, he is right to certain respect. The disease in the SM form presents much more danger to the patients due to the invasion of the mast cells into the tissues - it causes damage to those tissues. Yet, what doctors of his level don't know is that recent research is showing that there are cases which had previously been considered as not having the neoplasm, have instead been found. Research is beginning to reveal that there are cases where they can't see the neoplasm and very special testing is required to reveal it!

Ruth, don't you think it's time you take your son's case up a level? His case sounds like Kim's daughter Brie. If he has no spots, then he is a VERY RARE case of pediatric masto for the great majority of those kids have spots, so when one or two come along without the spots, the doctors can't recognize it! Your son may not be as sick as others like Brie, but it doesn't mean he's not needing attention. I don't know what your financial situation is, nor where you live, but you need to consider taking him to one of the experts! You've got two choices open to you, that of Dr. Schwartz in Virginia and that of Drs. Castells and Akin in Boston. Kim has been working with the doctors at the Mayo, but not gotten far and so this is why I don't recommend that route for she's looking to Boston now. And there's nobody really on the West coast either so I would recommend that you consider taking your son to one of those three.

Yet what I would suggest to you is that you give me your email in a PM and I'll send you what little information on MCAD and those forms of masto which are not showing the aggregates for your doctor and you print it out and leave it at his office for him. Educate him!

Also, I would also take your son's medications into hand yourself. You said he has GI issues. He needs Ranitidine - 150mg twice a day. This is over the counter medicine and so there's nothing stopping you from giving it to him. That with the other meds he gave you should suffice for now until you see how he responds.

As to the long-term situation of the meds, Ruth, I hear your concerns, but I also hear what the doctor is saying too. For right now, until you can get to a higher level doctor, don't think about this end of it. Antihistamines are wonderful drugs and they cause very few side affects and are not known for causing any real long-term damage. Don't worry about this, not right now. This is a question worth posing to an authority in masto, this lower level doctor isn't going to know the answer which is why he may have blown you off. yet, again, I have to agree with him for although you may be concerned about the long term, you've got to consider the emotional and psychological impact of not being able to be a normal kid can have on your son. I've got my eldest son and daughter who are 21 and 20 and my youngest who is 13. My elder son never had issues growing up, we're only finding them now as he's moving into adulthood and the stresses of the adult world of working and studying and going 24 hours. This stress is what is bringing his illness out into the open. But boys, especially need to be able to get dirty, and sweaty and gross. We girls have different ways about us, but boys must be boys, it's part of their finding their manhood! They have great amounts of physical pent up energy and if you don't allow these boys to be "men" then you can cause a detrimental effect upon their self confidence as well as their manhood itself. There is an excellent book to read by the author Dr. James Dobson calle Binging Up Boys. I'm a school principal and I've given this as required reading for my teachers for women tend to get upset with boys for just being boys and it's not right nor fair! Boys have ants in their pants and can't sit still - it's punishment for them! They need to be active, but this activity works against masto, for this stirs up the mast cells and this is what causes the reactions. If your son is not adequately medicated with antihistamines, he's going to be unable to be a boy and the other boys will call him a wimp and he'll loose confidence in his manhood as a result of this! He won't understand that it's not a question of who he is, but of his body causing him problems. But children don't understand these things and they take it personally and think that it's who they are and they lose confidence in themselves and don't have the maturity to understand that it's the stupid disease and not them!! Your son need to be involved in sports in a situation where the temperature is controlled so that he can be cool - swimming and diving and any kind of water sports is ideal for they will help keep his body core temperature down and stable. He also needs to take extra antihistamines before he gets into any strenuous activity for it will help to deal with the degranulation that the mast cells will release.

So, this, I htink is what your doctor is trying to say to you in that you should not be overly concerned as to the long-term consequences at the cost of his maturing as a young man. This, the developmental damage and emotional damage, far outweighs your concerns of the physical damage being done. Yet this is also something you need to consider and talk over with an authority in the disease and this is why you need to go to either Boston or Richmond because these are very valid concerns you have.

I hope this is a help to you, Ruth! Again, I understand your worries, but sometimes we have to look at the bigger picture here and gain a bit more perspective over all.

Hugs!

Lisa

Title: Re: Damage from mediators, regardless of antihistamines???
Post by peter on 01/31/11 at 10:13:24

Joan wrote on 01/29/11 at 16:38:55:

Title: Re: Damage from mediators, regardless of antihistamines???
Post by peter on 01/31/11 at 10:26:37

hi joan this is the best ??? on this site and it needs to be ansawed
antihistamines and mast cell stablizers only block the
symptoms thay do not stop the damage
one is ostoprosis and there are a lot moore
peter

Title: Re: Damage from mediators, regardless of antihistamines???
Post by peter on 02/13/11 at 09:40:57

lets add a cuppel moore
inflammotry bowel disease
full body inflammation
full body ostoarthritis
gout
putting names to simptoms

Title: Re: Damage from mediators, regardless of antihistamines???
Post by Lisa on 02/13/11 at 14:55:18

I think it's very important that we are working with two different disease entities and no longer one that of mastocytosis and mast cell activation.

In the case of mastocytosis, so much of the damage incurred is not just the damage the activation of the mast cells cause but also the damage caused by the invasion of the aberrant mast cells into tissues. When those neoplastic mast cells don't die off as they should, they are going to take up space. The more they are degranulated, the more they are called into action and thus more invastion of the tissues there. Because they don't die off when they should, they end up taking up the space and crowding the tissues there and this causes damage, not only in that they need more room, but also with the concentrated mediator release they will cause the problems within the bone marrow and spleen and pancreas, etc. So, you have two major problems going on, not just one.

Yet, with the Activation syndrome, this may be limited to only the damage that the mediators themselves cause and if this is so, then the use of the medications may indeed be very beneficial, but in both cases it is beneficial. You see, according to research, mast cell stabilizers do help to prevent more damage and they think that the leukotreine blockers and anithistamines may help as well in that if you can stop the mast cell from releasing their mediators, that's a big step towards preventing more damage because it keeps them from degranulating as much. The degranulation of mast cells creates an inflammatory process of calling in other inflammatory cells to that site of degranulation. If you can limit this degranulation with the use of mast cell stabilizers, then you interfere with the inflammatory process going on. This is very important. However, by using the blockers, you also calm down the effects of the mediators systemically which means that you help to cut down on some of the degranuation - it's a matter of a chain of events and one thing connects to the next. Reverting the process helps to decrease the damage. It may not make is so that no damage occurrs, but at least you may diminish or prevent some and that's very important.

Here is an abstract of an article on the use of these medications and the conclusions that researchers have come to regarding mast cells within the artery walls of aneuyrsms.

If this is so for aneurysms, then it is also so for other areas where the mast cells cause inflammation due to their deganulation.

Mast Cells: Important Players in the Orchestrated Pathogenesis of Abdominal Aortic Aneurysms.
Swedenborg J, Mäyränpää MI, Kovanen PT.

Department of Molecular Medicine and Surgery, Karolinska Institutet, Stockholm, Sweden; Department of Vascular Surgery, Karolinska University Hospital, Stockholm, Sweden; Wihuri Research Institute, Helsinki, Finland; Department of Pathology, Haartman Institute, University of Helsinki, Finlind; and HUSLAB, Division of Pathology, Meilahti Laboratories of Pathology, Helsinki University Central Hospital, Finland.

Abstract
Mast cells (MCs) regulate inflammation and immunity. Their granular content includes heparin, histamine, and several enzymes (tryptase, chymase, carboxypeptidase, and cathepsin G). In addition, activated MCs synthesize and release eicosanoids and a large number of cytokines and chemokines. Recent findings suggest a role of MCs in abdominal aortic aneurysms (AAAs) in humans, where they are found in the media and adventitia. Experimentally induced AAA in MC-deficient animals and animals treated with MC inhibitors demonstrate that MCs are involved in the pathogenesis of AAA via several different mechanisms. MC-dependent activation of metalloproteinases and the renin-angiotensin system, contribution to smooth muscle cell apoptosis, and release of proteolytic enzymes are some key examples. Human studies indicate that MCs are the main source of cathepsin G in AAAs and contribute to activation of the renin-angiotensin system via chymase and cathepsin G. Activated MCs also contribute to neovascularization, inflammation, and atherosclerosis, all hallmarks of AAA. Thus, we may envision that MC stabilizing agents, as well as leukotriene receptor antagonists and histamine receptor blockers already in clinical use for treatment of other diseases, could also be tested for their efficacy in preventing development and growth of AAA.

Title: Re: Damage from mediators, regardless of antihistamines???
Post by peter on 02/15/11 at 10:30:25

Hi lisa long time no chat YES i agree with you strange A
HOWEVER once damage has been done to the bone
GI track conective tissues the more they degranulated
so more damage YES mast cell Sabilizers stop GI INFLAMMATION
in my case thay have not stoped the bone damage or
tryptase level or body inflammation
it depends on the level of mast cells or the level of
activation and where in the body if it is full body activation
then the pills cant keep up
the big thing is to prevent activation in the first place
it is grate to see all the work been done on all mast cell related
disorders
wont be long now there will be a coure
mine is the only case that I know about so that is where i stay
peter

Title: Re: Damage from mediators, regardless of antihistamines???
Post by Joan on 02/15/11 at 16:18:51

Hi Debbie,

If you're out there, I was just wondering if you'd heard back from Dr. Akin on the subject of antihistamines and mast cell stabilizers.

Thanks!

Title: Re: Damage from mediators, regardless of antihistamines???
Post by Josie on 02/16/11 at 00:21:19

Hi Joan ,

The weight of medication we have to take is hard at times . I ahve asked the question of myself , am i overmedicating ?? The answer in my case is definately NO .

I have found I have had a significant improvement now my meds are mopping up the majority of my histamine overproduction . I am a leaker and a shocker , much like Ramona .

An increase in symptoms for me is a warning sign of an oncoming biggie - EPI PEN for me . Often 2 with the full range of IV and inhalant treatments . I ahve found that a shock will shock if its going to as my oral meds are overwhelmed by the mass release of mediators . BUT my recovery is greatly helped by suitable dosing ( higher than daily levels ) . I have aftershocks as I call them in the week after which I manage with oral meds .

But these observations have only come with stable dosing on the right meds for me .

I aggree with deb abd ramona . I use the med that works best , not necesserly the strongest . I also suffer within hours of my singulair waring off ( Ive learnt my lesson there ).

You said something very wise to me when i was discussing diet . That you were told we need to do both to get better .

Hashi's itself is a recognised cause of increased compliment cascades and angiodeama / anaphylaxis . This supports your experience in infection . As your body has to fight , it just goes a bit bonkers . I have also swapped to corn starch and gelatine free antibiotics which has helped as this alone was enough to tip me :-) I tale kiddie clear / white formulations .

If I can suss an infection early i can avoid the reaction with it . This only applies to abcesses . UTI's or chest infections lead to biggies whatever i do . My logic is , bigger infection , more compliment cascades . Also I am more symptomatic with a chest or UTI , by the time i start antibiotics so avoiding the compliment realted reactions and when my body is making antibodies is neigh on impossible :-)

You said :-

I went off it because my digestive system was so much better.

This tells me it was working for you :-) . It is a pain to carry about . But I think you may have been onto a winner.

As for your question :- My thoughts from a nursing medical background and some mast cell knowledge , that is by no means exhaustive . :-

I think there may be damage going on from the presence of the mediators BUT the damage from activation and or anaphylaxis is greater .

The other factor is , we are not on meds to block H3 or H4 which are in the development phase . i suspect some of us are still getting symptoms through activation of these .

So blocking release in the first place in those of us with many symptoms is wise . Now I am on a level of meds that work for me I can manage all bar major reactions :-)

Before i was in bed or being wheeled to the sofa for a couple of hours a day . Even then flushing , dizzy , sweaty , pale suddenly . With constant symptoms . Alongside the meds i am controlling my diet and am aware of triggers :-)

I think we all await the answer with bated breath xxxx

Josie

Title: Re: Damage from mediators, regardless of antihistamines???
Post by Joan on 02/16/11 at 05:26:50

Hi Josie,

I've actually been off the gastrocrom for more than 2 months, and the digestive symptoms have not come back. I don't know if that means it worked, or whether it didn't help but the supplements I took did help (l-glutamine, bromelain, quercetin, probiotics). I now still take the bromelain and quercetin daily, but the probiotics only a few times/week. Whatever it was, this has been one of the most stressful months in my life (my father died), and yet my digestive system has done well, and a really long flare seems to have subsided. My GI doc who treats people for mastocytic enterocolitis told me that 6 weeks on the gastrocrom would make a huge difference, and he was right.

One reason I'm concerned about whether I should be using gastrocrom as a primary medicine, even though my symptoms are minimal now, is that a side effect of ear ringing (tinnitus) has been reported, and my ears have been ringing more often and a lot louder since a few weeks into taking it. The ENT couldn't say (and neither could the manufacturer) whether the gastrocrom might have caused it. Still, would rather have some hearing problems than ruin my internal organs! So, will be curious to see if Dr. Akin gets back to Debbie on this topic.

Everything is so individual with these disorders. I think it's difficult to treat us!

Title: Re: Damage from mediators, regardless of antihistamines???
Post by Josie on 02/16/11 at 08:41:40

Hi Joan ,

I completely understand . I ahve ear ringing as a part of my illness , esp with an increase in swelling . It is daily .

My specialit here in the UK asked me about this but did not expalin why he was asking :-) . I will persue it when i go again on the first of march , to a close colleuge of his , luckily for me based in my city .

Ill post the response .

I know , we are a group of syndrome people all with an illness but having variable symptoms and reactions to medications . I am glad your problem got better with the gastrocrom .

We are all interested in this question . Thanks for asking it xxxxx I am considering gastrocrom as my abdo symptoms remain my day to day biggest problem . I have had anaphylaxis , purely from my gut mast cells .

Josie