Good to hear that others have experienced it. I'll try to figure out what's causing it.

For the adrenals--no one knows whether they were shutting down before all of this started, if they were damaged during the high dose steroids of anaphylaxis, or if they are suppressed from me having been on steroids for 3 months.

In my simple understanding:

When you take steroids they convert to cortisol in your body. Because of these new high levels of cortisol, your body stops making it's own if you're on steroids for more than a week or so.  Initially it suppresses the normal brain signals sent to the adrenal glands. With time and the lack of this brain stimulation, the adrenal glands can atrophy now creating two problems--lazy brain and lazy adrenals. In this case, however, the good new is that MOST eventually regain normal function over some vague period of 3 months-4 years. The problem is, until that period of time has passed it's quite difficult to know whether it's permanent or temporary.

Steroids are so dangerous and should only be taken if absolutely necessary. They are powerful life savers when they're needed though. They should always be used for the shortest time frame possible when they are necessary, so that you don't end up like me.


So, I'm struggling with not knowing what I'm faced with--lifelong steroid dependency, or temporary dependency. I need to see a good endocrinologist which might require me traveling somewhere and I still have not been brave or feeling strong enough to travel.

An item of good news, I'm trying to wean my steroid inhaler and was struggling, but since I've increased Singulair, I've been able to decrease it slightly and I'm really hoping that I might be able to get off of it.

Thanks for all of the help and support!

Had a "low steroid" spell today I think, headache, got really out of it, drowsy, so had to take extra.

I am so afraid of falling into adrenal crisis and needing to go to the hospital.

I am going to try a road trip next week. I'm not better but I don't think I will be for ages and if I don't do it soon, winter will set in and the roads will be dangerous.  I will take it one day at a time. I've checked and at the most it's 2 hours between towns with hospitals. I'll bring extra steroid medication, Epipens etc but hopefully won't have to use them

I had lip blisters today and I suspect it was garlic in case that helps anyone....

Thankfully, i seem to be okay with chocolate!

I hear ya on the munchies. On the high dose steroids in hospital i was eating everything in site. I didn't gain weight then, but after 2 months of steroids and now going on four months I've gained almost 20 lbs total and who knows how much longer I'll be on them.

Anyway, I'm alive and thankful for it. I am going to stay on all of my antihistamines until I can get off steroids.

Lisa

It's SO difficult to know what is what.  However, my itching, flushing and other symptoms are almost non existent lately. Everything I feel is "classic" adrenal insufficiency and I have the low cortisol level to collaborate with that. Also, today when I felt that way, I took a bit of steroid and I perked up within 30 mins----now, I guess steroid might also improve masto Sx.

Adrenal insufficiency classically presents with fatigue, malaise, nausea, low BP, abdominal pain, dizziness, coma etc. It is an emergency and one needs to take steroids immediately or it becomes untreatable. Sometimes IV steroids are required to fix it.  So one tries to find a steroid dose that allows you to function then if there are ever signs of infection etc you have to double or triple your usual dose....if vomiting or unconscious you need IV meds.

So, you're right, it could be masto or adrenal, but the way I see it---I know for sure I have adrenal insuffficiency and it can be life threatening so I can't take the risk of not taking the steroid for now.

I honestly feel like I'm getting some "control" of the masto symtpoms and since when I feel like I'm in adrenal crisis my steroid level should be obscenely low and I haven't noticed a flare of the other stuff I usually get.

BUT--this is all new territory and I by no means know what i'm dealing with.

I figure though if I'm going to be sick for months I should try to get myself to another city that makes it easier on my family so I am going to try to go to where my parents live for now. I hope too to see an endocrinologist there which might help.

But, I am going to map out where each hospital is en route and reassess each night. If I'm sick I stay in the city I'm in and try to get better. I will not push on. Also if I get half an hour into the trip and it's bad, I'll turn back.

I just find flying SO stressful, though quick, and if there's temperature changes or anything I'm hooped because I just can't tolerate it.

I am terrified to be honest, but I just feel the urgency of winter approaching and don't know what else to do. My biggest fear is that I will become acutely ill and we will be too far from urgent medical care to save me. . .

But, if I can get to another city, even if I get sick there , I should be no worse off than here

Change of plan

I'm going to try to get to Mayo or Boston and be seen

I am getting worse and need to be sorted out

My country has recognized that they can't manage  me here so will hopefully fund it. I just don't know if I can endure the trip or how long it will take to set up

Yes it seems it will take  awhile to arrange

I wanted to get travelling to at least get me away from the hospital here but I've been feeling worse the past couple of days and developed a fever today which means I need to double my steroid dose and keep an eye on my stability as I might need to be hospitalized for fluids and steroids EEK

Don't want to go back in hospital

Oh my gosh Lisa! That is SO scary. I'm so glad you are okay now.

I wish your country would fund a trip for you. I don't know for sure if mine will be covered yet but I am really hoping.

I will pray for you too! It means a lot to have prayers from Brazil.

I think I am going to take the risk and fly---like you said it's over faster. Ive had to stress dose my steroids for this fever so I'll just do the same for flying and hope for the best. If I get really bad, then at least the trip isn't too long.

Hold on Anaphylaxing! I wish if I would have something useful to say, but I don't Hold on!

Lisa, sorry, I didn't know that you had such a bad day

Ana, have your doctors tried speaking with either Dr. Castells or Dr. Akin?  They really should prior to your getting on a flight.  That tachycardia is a real concern!  The problem is that not everything can be blamed upon masto even though it would be easy to do so!  Yet it sounds to me like you've got something MORE happening, something triggering that fever.  Have they checked you over for infections or some kind of bacteria or virus perhaps for these things will also trigger the masto.  It's the Masto double whammy, you get hit by the truck which is the infection or virus and then it rebounds by triggering the masto and you take a beating with it too!

Yet, here's another thing, Ana, not all of us react well with our antihistamines.  My dermatologist played with mine about 7 or so months ago because the combination of the H1 and H2 blockers had a beta blocker effect with me and was giving me bradycardia.  I've always taken allegra and ranitidine and I respond very well to both, but at the doses I was taking, this was what created trouble.  It may be that this could be part of the problem, however, without a doubt, your emotions have a role here.  Your fear and anxiety is a HUGE trigger!  When I was hospitalized for my surgery last year they were constantly catching hypertension with me.  Welll, I'm NOT hypertensive, but when I'm reacting, the masto kicks in and is what makes me hypertensive.   My doctors, whenever they test my pressure in their offices, depending upon the doctor and how comfortable I am with that doctor, will catch either normotension or hypertension!!  It's a real joke because they never know what they're going to get with me!  It's all the masto.

It wouldn't suprise me that the tachycardia is due to the reacting and as you saw, in getting into an emotional situation which made you even more anxious and scared, your mast cells degranulated, thus causing more tachycardia.  

It's interesting Ana that we are all so very different for although I have palpatations, my tachycardia doesn't come during reacting, it will come at other hours!  My holters have caught my heartbeat up as high as 120 bpm and as low as 41bpm!  and not at hours when I was reacting!  I've been seen by doctors while on monitors with tachycardia happening while reacting, but most of the time they say, Hmmm why isn't your heart racing???   Gosh, like I'm going to know that answer!!!   We're all kind of quirky this way.   However, I'm sure that you and your doctors are frustrated, for you say, "I'm taking the meds for the tachycardia, why aren't they holding me?"   Well, the answer is because when you're reacting, the meds do hold you, but, they can't combate the rush of the mediators.    This has also had my doctors scratch their heads with my hypertension.   I take the meds all the time to help give me some protection, and to help with the arrhythmia, which they do.  However, you get me into a crisis and my BP is going up and it doesn't care what medication I've taken!  It's going to respond to the chemical explosion going on inside of me, period!   This is exactly why your doctors aren't seeing anything working.    Perhaps there's a need for some kind of anti-anxiety medication, just to be able to work on the stress mediators coming out of the brain.   They have an incredible impact upon mast cells!

However, again we can't just blame the masto for everything.  I can't help but wonder if there is something else going on for you to be doing all of this reacting like this.  But if everything checks out, then the one major thing that I think has to be considered is that perhaps you are reacting to your medication, which can indeed happen, or you've gotten your anxiety levels so cranked up that they are causing all of the degranulation to get you back into the hospital.  


So, what to do then?   Since I'm no doctor, Ana, what I suggest is that you, yourself, write to Dr. Castells or Dr. Akin explaining what you are going through and what your doctors are planning to do and ask if they would kindly speak with your doctors tomorrow morning ASAP and see if there is any advice or guidance they can lend.  

You're in no shape to be taking a long flight, especially alone!  Your husband has got to accompany you!  You're just too unstable and be it overland or by air, the stress of the flight is enough to trigger you.  Also, you must have a wheelchair service arranged from the door of the airport all the way to the exit of the  next for the walking around is just way too much for any of us!

So, if you can, write to Dr. Castells or Dr. Akin tonight please.  I'll give you their email addresses.  I'm certain that they will do what they can to help you!


I hope this helps you!

Lisa