Let me decode the medications kirkmc mentioned:

loratadine = Claritin
desloratadine = Clarinex (2nd generation Claritin)
"hydoxine" = hydroxyzine (Atarax, Vistaril)

rupadatdine is a new H1 antihistamine (it's also a PAF antagonist)... I would love to try it if it was available in the US!

So here's how I see the contrast situation...

Yes, iodine contrast is dangerous for people with mast cell disorders.  If it was me, I would ask three questions:

- Is this scan absolutely necessary?
- Could it be done with a different kind of contrast solution?
- Do I feel protected from a life-threatening situation?

The pre-medications you're taking (H1 antihistamines plus 15mg of prednisone) are less than what I would take.  Here's what Dr. Castells recommends on the TMS website:

- 50mg prednisone (once 24 hrs prior and once 1-2 hrs prior)
- 25-50mg Benadryl (or equivalent H1) 1 hr before the procedure
- 150mg Zantac (or equivalent H2) 1 hr before the procedure
- 10mg Singulair 1hr before the procedure

http://tmsforacure.org/documents/castells_emergencyplan.pdf

Going back for a second...

Iodine contrast is a known degranulator.  Many people (even normal people) experience flushing, itching, dizziness, etc...  Does that mean that everybody is in danger of a life-threatening reaction?  Not really.  Kirkmc: regardless of whether you have a mast cell disorder or not, you might sail through this procedure no problem.  But... there's also the chance that this could be your first experience with anaphylaxis.  It SUCKS.  Even if it's not life-threatening, it feels really, really awful.  Is the scan worth it?  Only you and your doctor can decide.  If you decide to go ahead, I would follow Dr. Castells instructions for pre-medication.  It can't hurt.

Heather  

It's not that I recommend pre-medicating within 24 hours of the exam... that's what Dr. Castells recommends.  Is your doctor an expert in mast cell disorders?  Dr. Castells is.  Maybe the pre-medication you're taking is enough for someone with "allergies."  Maybe not.  I don't know since I'm not a medical doctor.  All I know is that Dr. Castells (and other doctors like her such as Cem Akin, Luis Escribano, etc...) recommend that mast cell patients pre-medicate on a 24hr/1hr prior schedule like the chart I showed you.  (Lisa can give you the REMA protocol from Dr. Escribano... it's very similar).  

You're in a catch-22 since you don't know yet if you're a mast cell patient or not.  All I know is that Dr. Castells' protocol is very unlikely to cause any harm... and it could definitely prevent your first episode of anaphylaxis.  Very few people have life-threatening breakthrough symptoms on those doses.  If I was having a scan tomorrow I would take them in addition to the antihistamines, Singulair, etc... that I'm already taking on a daily basis.

Anaphylaxis is nothing to fool around with.  I hate to dwell on the "life-threatening" aspect of it, but truth be told... it can kill you.  Only you can decide who you trust with your life.

Heather

Ahh, so that explains those meds! Thanks Heather!

Of the meds you are taking, IF THIS IS MAST CELL DISEASE, only the hydroxyzine will have much effect. The other 2 simply aren't the preferred ones as they don't work nearly as well as the ones I listed. Hydroxyzine is a powerful one, though. I take that as my emergency med only, because it is more than I need on a daily basis and it knocks me out.

One thing to consider is this: with mast cell disease, it can often lie dormant in people for years. Then something triggers it to activate. The way that I look at it is that since there are different degrees of how sick we get with mast cell disease, we have to avoid things that could push us to a more severely sick level. Let's say that you do have mast cell disease. Right now you only have swelling (which seems worrisome from a safety viewpoint.) What if the iodine pushed you to a worse level and now you had other anaphylactix syptoms, such as hives, diarrhea, blood pressure drops, and organs affected? It is harder to get rid of the new symptoms on a permanent basis once they appear. So if you can keep them from appearing, that is to your advantage.

Now that is not to say that you cannot get rid of symptoms once they appear. Some people do. I have forced my symptoms back into hiding, but I do it through diligent avoidance of triggers and awareness of what those triggers are. Plus I take daily preventative meds and I totally changed my lifestyle to prevent symptoms. I don't have masto, though. I have Idiopathic Anaphylaxis, so in a way, perhaps mine is easier controlled. I don't really know. (Sometimes I feel IA is easier to have....only during an actual attack it is probably easier to be fatal! Yikes! So, you can see why I am so careful.)

Now, as to is Dr. Castell's protocal for pre-medicating better than your doc's or not? Well, there are only a handful of mast cell disease researchers/specialists in the WORLD. Dr. Castells is one of them. That means she knows the disease better than most people on the planet. If this is what she orders up, then you rest assured that it is the safest way to go. The best thing you could do is to request that your doctor email Dr. Castells and consult with her regarding your case and the best way to premedicate for a test using iodine.  (I can give you her email if you would like it.)

Now, back to your original question: do you have mast cell disease? That is a hard one, as your only symptom is swelling. There are so many causes of swelling and usually mast cell people have more symptoms. However, this is a rare disease and it affects everyone differently, which is exactly the reason that anything is possible with it and you could turn out to have mast cell disease. It is tricky!

Happy to help, of course! One last piece of info to share: people with mast cell disease often have no or few allergies. Yet we react as if we are highly allergic. You are right in that the vacuum and any other cleaning agents could be a trigger. I have a cleaning lady and she knows not to use anything with odor and to make sure that I am not in the room when she uses any cleaning sprays, etc.

Sounds like ebooks are the way to go for you!  . I love my kindle!

Oh yes, my husband loves his iPad as his ebook also! So, I am intrigued: you have mentioned that you are researching and use old books. I would love to know what you do and what type books you research. Is it literature or a different area? My doctorate work specialized in English Renaissance Lit, specifically Shakespeare. So, I just love to hear what other people are researching an writing about!

Hi Kirk ,

My brother is a poet and also has a large libuary . I can't go in there now . I do wander if other factors are involoved in the dust as that dust will carry other particles from the other home , cats , pollens , cleaning agents etc . An idea is to ask them to hoover off any dust before they post them . I know the pages may be very fragile so a cold blast from a hairdryer would do it . The covers should be able to be damp dusted .

I have written a a book about my experiences as I have been ill since 2008 . I did not get to specalist doctors quickly , so I am now disabled. Writing has been a really important thing for me in accepting my illness  . I also still have daily symptoms as my med regiemn is tweaked . I am under the care of specalists now so I am doing better this spring . Pollen is a problem for me . In my reading I found that when you move area it takes a period of time to get reactive to new pollens . Up to 2 years . They can also be blown for 15 miles . If you have a mast cell disease ........... then it acts as a magnifying glass over allergens . Mine in test land and minor , but in reality I am very sensitive . Mine are dust , grass and cats . I can't be in the same room as the hoover ( with a hepa filter ) and as Deb described I can't have any fragrances . I found I was especially sensitive to vinegar based cleaners and alcohol based . I am down to 2 products from my local supermarket . But they work .

Do you swell any after bathing ?

Is the phase 2 claratyn available over the counter in france ?? As if heather likes it ill be over ( From England ) to get a suitcase full .

Regards the CT , I am very glad your nephrologist has made that descision . I had a reaction to CT contrast . It was horrid . I had anaphylaxis and 7 doses of adrenaline .This is because its half life ( how long it is active in your system is 24 hours .  This was my 3rd CT with contrast . I will never have iodine based contrast again . I have had 3 MRI's with no problems . 2 since I got ill  No contrast . I know the contrast is felt to be NON allergenic . But I urge you to be cautious as most things I react to are NON allergenic !!!!!!!!!!!! But I react by the other pathways i described before . The pre medication protocol is not just for CT DYES but for any surgery or invasive procedure . It may not be necessary  , but it won't harm you to be pre medicated

I am in the dark ages tech wise . I only just got wifi for the first time !!! So I have ebooks on  my laptop .

I hope the meds are helping today I have just moved and its 5pm One of those days where resting is what I need to do I am having amazing results with hyroxizine . I am on 25mg twice a day now . Since last summer I have had singulair , ranitidine and hydroxizine added . Each works on a differnt symptom for me . Singulair on exteranal swelling and my chest , Ranitidine on my bowel spams and swelling and resultant flushing and frquency / diarrhoea . and hyroxizine on my brain fog and bladder spasms .

Josie