I know, I know! This should not be necessary to go off meds for testing, however, Dr Afrin suggested that IF I can stand to give up the relief from symptoms that I have found on the antihistamines for a week prior to my appointment with him, to stop taking them so there is no risk of the meds altering my tests. I'm SO DESPARATE for answers that I would kiss a skunk's bottom every day for a week if it meant I could get answers. Although no one would want me near if I did that  
So I stopped taking all antihistamines starting yesterday, Sunday, morning. I was fine until just before noon when my tummy started burning with some cramping and extreme Gerd kicked in. Then as the day progressed so did my symptoms. Although I'm not entirely sure, I had been thinking that the antihistamines were not helping with my bone/joint pain. It was either the lack of meds or the front that moved in from Tropical Storm Lee that has my bones screaming!!!! Tongue is swelling, eyes are somewhat swelling and burning and aching. Lump in throat just below the Adams apple has loudly announced it's presence and causes me to continually clear my throat! So many more symptoms but if I continue writing them down you all will be bored to tears and WISHING i'd go find that skunk so I would be occupied with that instead of drooling on here
SO, last night I was sitting up watching tv and got so tired I fell asleep sitting up. When I woke 10 min later I went to bed and do you know I COULD NOT sleep! If I laid on my back I would flinch and jump as if someone were starling me (which no one was). If I laid on my side one side of my nasal passage would get stopped up. If I laid on my tummy my neck would hurt. All this while my bones hurt and I have 4 bizarre bug type bites that came about during the day in remote areas and the itching is crazy mad itching!!!!
To summarize, I don't know if being off meds or just lousy timing but I did not sleep worth a darn and now wonder g if being off meds is the culprit, whether I will make it a while week without them and still be able to drive myself the 900+ miles to see Dr Afrin. One day at a time I suppose.
Thanks for listening and letting me vent
Kim

I´m so sorry Kim you´re going through such torture!!

Dr. Castells insists that patients should NOT go off of their meds, but in YOUR CASE, I do agree with Dr. Afrin.  Not all of us are obvious cases of masto and there are some of us who defy even the authorities and if Dr. Afrin has a valid reason to ask you to keep off of them if you can, then I agree with his motives.

Kim, one of my most important exams was only acheivable this way.  In order to do the ASST skin test it´s essencial that the patient be totally off the antihistamines for a full week and this is because otherwise their skin will not react when they are injected with histamine and their own serum.   I reacted to my own serum thus proving beyond all doubt as to my autoimmune form of masto!!  This is really one of the most important exams I had done and without being off the meds we would NEVER HAVE KNOWN!!  

So, although I fully agree with Dr. Castells, I´m sure that she has asked patients to do the same DEPENDING upon the exams she was going after.  

You see, being off of the antihistmines also means you are going to be more reactive than on those meds, which means that although they will not directly interefere with the blood and urine testing, it will do so indirectly by not having you be so reactive and this will thus lower your measurements of histamines and prostaglandines and even tryptase.  They antihistmaines won´t keep you from not having elevated levels, but they can keep your reacting down so that if you are a borderline case, then it may keep your levels within normal ranges, thus causing a false negative.

Yet, IN YOUR CASE, Kim, there has been so very much doubt around your case that you really do need to let the doctor see the naked you without those antihistamienes!   Then he can get a much clearer picture of what your situation is.  And, since you´ve run around in circles for so very long, the very LAST thing you want is for him to not see your case clearly!!

So, sweety, HOLD ON if you can!  DON´T DO A SINGLE THING ALL WEEK!!   Don´t leave the house!  Don´t be in the heat!  Don´t do any dishes or cook!!   SERIOUSLY!!   Keep a really LOW PROFILE all week long so that you don´t get yourself into trouble.   As to the stomach pain, you need some omeprazol and this will help you get  through that.  And, as long as you don´t go anywhere or do anything you will find that you are able to get through the week!

Now as to that trip, as Dr. Afrin what he suggests as to get to him.  Prednisone may help and taking only one day´s dose may not cause you issues.  I would not try driving that all in one day, however!!  Isn´t there a girlfriend or one of your sons who could drive you?

Also, NOTE DOWN EVERYTHING you are going through!!   Afrin needs to know what ended up coming up out of hiding the moment you stopped those meds.  It will help him gain understanding as to what the influence of the antihistamines are and what are true symptoms of your disease.  It will help him figure out the GORDEON knot you´ve got there Kim.

Remember, being off of those antihistamines are a BIG CLUE and they speak REAMS of information as to what is happening to you!!  Yet, it´s essencial that Dr. Afrin get a chance to see exactly what you are going through without any masking by those antihistamines, so HOLD ON TIGHT, Kim.  You´ll get through this week, have no fear!!!

I´m praying for you sweety!!!

Lisa

Those bites might be hives.  In any case, you might want to ask about over-the-counter cortisone cream for the itching.  Also, did the doc give you a plan in case the symptoms get too bad?  You might be able to take something short-acting or a different type of med that would help besides antihistamines.

Weather fronts can cause pain.  I sometimes can't tell if it's joint or muscle or connective tissue, but it's definitely caused by the weather.  I think for me it's related to barometric pressure.

If sitting up is the only way to sleep, why not sleep sitting up?  Or grt an extra pillow or two.

Hope the rest of the week is easier.

Oh geez oh crimineez! I fell awful! Heart rate and BP up and then down and up again. I vp utter I hurt palpitations nausea! I didn't expect all this! I wAsnt this bad before I started the antihistamines. I've turned into a blubbering, sick mess!

Thx Susan.  Seems my BP and heart rate have balanced back out. I'm so sleepy now. I will stop using the topical on my bug bits or whatever they are. It didn't really help much anyway so no loss. I just don't know who I could get to drive me. have to think on that
thanks for advice!

Deb, it's a very VALID question you raise and worth answering.   To the very best of my knowledge, the antihistamines will not directly affect the prostalandines nor urine histamines nor tryptase.  They will not lower their levels DIRECTLY speaking because you are on them.   However, they could INDIRECTLY affect them by making you more stable and thereby you would not be releasing as many mediators because you would not be reacting as much.  

However, if you are doing a test like the ASST test, then this would indeed DIRECTLY interfere and affect the outcomes of the testing.  So if you were to take them, then your tests would not come back with the same results.   But these tests, as far as I know, are SO FEW that unless the doctor is specifically testing for this, I really don't believe there is any real need to go off the antihistamines.  


Yet, as I said, in a case like Kim's where she's come up against complete dead ends with EVERYTHING and even your case where everything was negative, then the challenge is to find SOMETHING that may show an off reading and in this case then YES, it would be better to be off the antihistamines and reacting in hopes of catching SOMETHING than to be taking the meds and still coming up empty handed.  

I understand your position, Deb and Dr. Afrin is not a high level authority on masto and is working his way up the line.  But I think that there are even cases where Drs. Akin and Castells and the others will sometimes ask their patients to be off their meds only in these very specific and rare situations.   They are both immunologists and they know that you can't do an ASST test while the patient is on the antihistamines.   I believe the RAST testing is also affected, so depending upon the case, they too may ask this, but I have a feeling that it's very unusual.  

So, this is what I've figured, Deb.  

Lisa

Thanks Lisa and Susan! Very valid points that you raise. I think it helps for those new to testing to realize that it is NOT the norm to go off meds. However, in rare cases, it might be advised by a specialist.

The important thing that I want everyone to realize is that you can see that it is a very individual situation as to who this should apply to and who it should not. We are all so different. Some go into anaphylaxis and some don't. For example, had this been me when I first got ill and was going into anaphylaxis at the drop of a hat, it would probably have been disastrous for me to go off meds for testing. In fact, the testing probably would have put me into anaphylaxis and, as we all know, those can be fatal instantaneously (at least in my case).

So, as always when reading this forum, educate yourself with the info, but then think it over and decide if it applies to you or not. Don't take someone else's word for how you should make decisions for your own medical care.

Thanks everyone!

Joan is correct...my allergist still has this suspicion that my symptoms are caused by hidden allergies.  So, awhile back he wanted to do allergy testing.  I tried to go off the antihist, but after a day realized I just wasn't going to make it.  He gave me prednisone and said it would not affect the results.  This was for skin allergy testing for foods.  Good luck....I couldn't make it, but gave it my best for about 24 hrs!