Mast Cells

[Sheila6830]

Ok - I have a question. My flares last all summer long then they slowly go away into fall. I've had both a nurse and a doctor tell me its probably allergies due to mast cells. Zyrtec & Atarax do help dull the pain.

Do I have too many mast cells or are they just overly sensitive mast cells? What cuases mast cells to inflame? Is it stress or could it be an allergy in the environment (I know its not something I am eating).

[ICNDonna]

Are you following an IC diet? If not, it could be something you are ingesting.

Mast cells found in the biopsy is one indicator of IC.

Donna

[Sheila6830]

Oh yes - I am actually not eating very much of anything. I have lost 40 lbs so far this year. Sometimes the pain is just not worth it so I don't eat.

There seems to be a seasonal pattern to my IC. I just didn't realize that outside allergens could cause inflammation on the inside of our bodies?

[Tracey5399]

yes a huge part of IC is the allergies, just because you may not be sneezing and coughing like having an allergy to pollan, it's different for IC patients, the allergies are in the body pertaining to the mast cells.
I know I always have a harder time this time of year, the atarax helps but i feel much better when this time of year passes.
You may want to speak to your doc about uping the dosage of the atarax during those times when the allergies are worse for you.
Also the not eating thing ( which i think most of us go through ) can also cause a flare. There are days I just don't feel well and who wants to cook right? but when i don't eat i get sicker and my bladder hurts worse.
Wishing you to feel well,
Tracey

[Charisse]

How long did it take the Atarax to work for you? I only tried it for a couple weeks and just couldn't handle the side effects. I'm always worse in spring/summer too and so I am on Singulair, Claritin and sometimes Benadryl. I wish I knew more about mast cells but I don't. I saw in another thread you found a new dr too? He sounds really good.

[Sheila6830]

It took a couple of weeks before I started noticing that Atarax was dulling the pain. BUT - it also dulls my mind. Sometimes I feel very sleepy at work. I also take Singular, Nexium and sometimes Zyrtec. My new doctor upped my dose of Atarax to 150 or 200 mg a day and if that doesn't take down the allergic inflammation in my bladder I may have to use steriods. I'm terrified of next spring and summer. I will most likely have to be on steriods and high doses again of Atarax to combat my allergies. Werid thing is my sinus alleregies are not that bad. But the allergies on the inside of my body are terrible. I didn't know my internal organs could be effected by outside allergans. But Atarax is helping me a lot. Just makes me sleepy.

[Charisse]

Sheila oh my gosh this is EXACTLY how I am. My sinus allergies are not that bad but I feel like the inside of my body is reacting and I get sick all over feeling after I'm exposed to allergens. If it was just a runny nose or sneezing I would be so happy. I have tried explaining this to people before and they look at me like I'm nuts. Have you had any sort of testing to confirm this? Is this why your dr. prescribes you steroids?

[Sheila6830]

I've tried explaining this to people as well and I'm sure they think I'm making this up. I've even talked to doctors who look at me funny. I've has a few urologists in the past take pity on me after they've seen my bladder and perscribe steriods to reduce the inflammation and it did help. I wish I had some right now. I will probably have to be on them next spring. I'm going to stick with the new doctor and see what he thinks as time goes on.

[jen74]

Does everyone with IC have mast cells or can you have IC and not have mast cells? I always assumed mast cells indicated allergy. I honestly do Not believe my IC is due to allergy. I have been on antihistamines and they do nothing to help my pain. I figure that if my IC was allergy related, the antihistimanes would help some.
Also, I do not understand why doctors do not give IC patients trials of steroids. They give them for EVERY other ailment that causes inflamation( IBD,asthma,skin ailments,etc...). I know steroids are not good for you long term, but given intermittingly I think would be a good idea. I know having a constantly chronically inflammed bladder cannot be good for us, that is for certain. Especially if IC is autoimmune related, then steroids would be the treatment of choice. It is odd that doctors dont want to do this. Like I said, I know it is not good to take steroids continuosly, but I do not think it would be bad to do it off and on. Anyone here ever been on them to help with their bladder inflammation?
Jen

[Sheila6830]

I know I have always had allergies and have taken 1 Allegra or 1 Zyrtec a day and I thought it helped my nasal allergies. But, with this IC problem, I am taking larger amounts of antihistamines. I am taking Singulair, Zyrtec and 150- 200mg a day of Atarax. I thought if I had allergies one of these pills would help. I do think that steriods would help a lot, but the doctor would rather have me on antihistamines than steriods.

I never would have though about internal allergies as a cause of my bladder inflammation. I don't kow.

[jen74]

That is what I do not get. Antihistamine will do nothing for imflammation that is not caused by allergies, it is not that kind of anti-inflamatory. If that were the case then people with asthma and Chrons disease would be on antihistamines and not steroids, but it is not so. I was just curious if everyone with IC has mast cells.
Jen

[jen74]

Thanks Mothergoose, I will google it and see what I find.
Jen

[Mothergoose]

I looked it up on wikkipedia and there is quite a bit written there about it, too mcuh for me to relay, but it has more roles than just cause swelling from an allergie. Worth looking it up to read about, I need to read it again when I have a bit more time so I can digest it.

[Sheila6830]

So is that why Atarax works when other antihistamines don't? Is it because Atarax is better at reducing Mast Cells?

[Charisse]

Wow this is really interesting. I didn't realize that allergic inflammation and other types of in inflammation would not be the same. This would make sense why Advil doesn't work for me right? Also my GP ran some blood tests to check for inflammation and found nothing and it was during a major IC flare so I always wondered why if I am so inflammed did my bloodwork not show inflammation but if mast-cell inflammation is different than that makes sense. And I KNOW I'm inflamed because my uro took pictures of my urethra during my hydro and said it is SO inflammed but he recommended I take tons of Advil to try and get the inflammation down.

[sickofmybladder]

I am in the middle of a horrible allergy attack (into it's second week now) - and I can tell you that absolutely my bladder is NOT Happy. I take Aterax nightly and tried Singulair - but this round it's not helping.

I can absolutely tell you that there is a connection....just wish they knew more about it.

[jen74]

This is interesting. Though, my gastroenterologist did tell me that when one thing in the body gets irritated, then other ailments will act up as well usually. Not sure about the role of mast cells. But last year when I took my dog to the vet, he had to have a biopsy of an infammamed area. The vet said that she thought it may be allergy and mentioned looking for mast cells so I guess it may be related. I however have to say that I do not have seasonal allergies at all but do have chemical sensitivities, usually to meds. I know that antihisitmanes do not help my bladder at all. Atarax made me worse, I know that.
Jen

[Charisse]

I was doing a little research on mast cells and inflammation today and I found some really interesting stuff online. Basically mast cells can affect all the tissues in our body and are related to slow digestive motility (which I have been diagnosed with), IBS, IC and possibly fibromyalgia. My IC has never gone away since stopping my allergy meds so abruptly in '07. Being on Singulair helps which would make sense since Singulair prevents release of leukotrines(sp?) which cause inflammation but I am wondering if I could take a higher dose of Singulair. I never gave Atarax a good try or maybe I need higher doses of it but I'm still not sure I can tolerate it. It just makes total sense to me that it's a mast cell thing although unfortunately I don't think my Uro-GYN biopsed my bladder during my hydro. I have been trying to get copies of my records now and no one is responding to me. I have to find a new Uro so I will bring this up to him and see what he can do. Also it appears steroids have not worked so well in ICers but I do plan to ask about it . . although I believe that Heparin is supposed to act like a steroid when instilled in our bladders and that didn't work for me either. Also I read that NSAIDs can sometimes cause further release of histamine in a person's body. All really interesting stuff. I don't have much hope in any Uro in my town so I'm seriously considering going to UC Stanford once my baby is born and meeting with someone in their clinic. Do you know if they accept health insurance?

[Mothergoose]

There are other antihistamines, just discuss them your gyno or gp, because some are alright during preg or as you said maybe you were not on the right dose of Aterax. I do feel antihistamines have helpped me greatly. I tried reaction first I was allergic to it, it caused severe chest pains, I tried singular it caused wicked nightmare, then I tried hydroxizine and it was the ticket for me. I started at 10 mg, I kept upping the dose to about 50mg at night and got relief, and after a while I started seeing if i could reduce the dose, at times I have gone back down to 10 mg but mostly I stay at 20mg, if things get bad I up dose again for a while. You may ask why if 50 was working did I reduce, I like to take the minium I can get away with and still get help.

Talk to your doctor, I would not just go buy any over the counter, because each one has a little different make up. You may want to start on OTC meds or go on a scrip. just depends on how your doc veiws it. I would also take copies of reach you did on mast cell.

[girl]

Yes, everybody's body has mast cells. There have been some studies which show that people with IC have more and more active mast cells than the general population, however. Mast cells release histamine, which gives you the symptoms of your allergic reactions. Thus, we take antihistamines. (Can you tell I have severe, severe allergies?)

I have taken the steroids for IC - in the beginning they were the only thing that helped me at all. I just weaned off a few months ago after being on them for three years this time. Out of the last twelve years, I have been on steroids nine of them daily, the rest of the time sporadically.

The reason most docs don't want to give you steroids for IC is that most people can get relief first with other methods, and steroids SUCK to be on long term. I am forty two and taking IV medication for osteoporosis due to steroids. In my case, I wasn't taking them just for IC however; I was having such bad allergic reactions I kept going into anaphlayctic shock. And it almost never showed on the outside - my nose doesn't run too much, I never ever sneeze - I just break out in hives, have a horribly inflamed bladder and go into anaphylaxis. And still, as soon as I could, I weaned off the prednisone. It makes you fat, and hungy all the time, it messes with you bones, and it makes a lot of people (including me) either depressed, or very irritable or both. (Mix that with perimonopause and people give me a veerrrry wide berth!)

Anyways, just wanted to let you know you are not alone with the allergy thing, and steroids do work for some of us. I will continue to use dose packs as needed all fall - I will feel better about December or January. Then get to start it all over again next spring!!!! Maybe I should move to Alaska.......

[Charisse]

I know all too much about Prednisone. My mother took it for several years due to guess what? Bad bad allergies! She didn't sneeze or have a runny nose much either but she felt like total crap and would itch her eyes until they were raw and swollen unless she was on it. She took up to 40 mg per day at one point for several years and developed osteoporsis and cushing's syndrome. She also had lupus so the Prednisone may have helped her feel better due to that as well. When you do the sample packs do you notice any weight gain or other major side effects?

[girl]

No, I don't usually have any problem with the dose packs. I might gain 3-4 pounds, but they only last a week or less, so it really avoids the cushings and the osteoporosis issue. I was on 60 mg for over 3 years - I know how your mother feels!! The last few I've been able to keep it to 20 or so most of the time - still have major issues though just to the lenght of time taking them.