brethor9

sorry Alex lol! yep that's supposed to be 0.025mg (forgot my other zero!) basically a 1/4 tablet thanks for letting me know that so I can correct it......yeah so that's why I was so shocked to find out the pre-Cushings was florinef related because it is such a small dose. My internist is also an Oncologist so he is very familiar with steroids and he says its the build up over time that is the problem.....not so much the dose ;( ..... so the ultrasound showed a build up fatty tissue (nothing sinister thankfully but he said it is definately caused by the steroid and it will get worse if I don't taper down ...... yay! one more issue to deal with now

I hear ya Peace It gave me back some of my life too but now it seems to be going in the other direction I am so glad you are getting some good effects....you almost made me cry reading about taking your son for ice cream seems like such a silly little thing but for us it is such a milestone! I will keep you posted thanks for the support! Thank god for the people on this forum......life would be so much more miserable without it! Bren

Thanks Naomi it would just be nice if we could ever find something to really help without side effects and not just be a band aid Bren

Issie I am so glad for you that you are finally maybe making some headway....you go girl!! lol that is so sweet of you to think of me I have been going through an awful time right now with the possible onset of Cushings thanks to the florinef steroid.....so I am now having to taper and boy is my poor system feeling it I may have to look into having it compounded and wean that way? Also, I was told I am having liver issues now.....scary....the mast cell stuff is kinda at a stand still likely because of all the other things my body is dealing with.....I know in the past you mentioned you had kidney issues....every anything with your liver? I will try to look at the info you suggested later today when I get back from my ultrasound....PM me if you feel up to it I really am sooo darn happy for you Issie that you are seeing some positive changes Bren

Thanks Naomi yeah to be honest I have always been weary of taking it too.....I mean really how can doctors really know how a drug is going to affect you long term? and every patient is so different right? when I first started it my sister (she was a nurse for 20 yrs and now a drug researcher) warned me that ANY type of steroid is not good to be on for long term but honestly I was soooo sick at the time it was worth it! I am still not sure if I will be able to do without it....guess I will have to wait and see

Thanks guys! Peace I am always hoping for improvement......it seems I get better in one area and then something else pops up.......my body just likes being screwed up it seems ......doc has changed my dose to every other day for now to see if it changes anything. Funny enough my cortisol serum levels really were not high still waiting on the urine results though. I have an ultrasound tomorrow of my neck to rule some other things out too.....I knew something was wonky because just in the last month I had started to put on a lot of weight and went up 3 bra sizes!! ha, ha.....hubby loves that...me not so much ;(...... the weight gain has been ridiculous and I hardly eat....but it's the liver damage that is making me think twice about taking it at all...... hope you are hanging in there

wheat, dairy and tomatoes are a big trigger for me although I am not celiac (ruled out by biopsy) I definately have big issues with wheat. It causes instant back pain and leg cramps within a short time of eating it....so strange.... be warned it isn't always typical allergy symptoms....like Dizzy I have realized a lot of pain was being caused by reactions to things

I have been on it for almost 2 years at a small dose. My specialist said in some people they metabolize it differently and with it building up over time it can start causing side effects. None of this was ever mentioned to me; interesting enough after searching around I found a medical article about Florinef that clearly states it can cause Cushing like symptoms...oh boy lol.....I am hoping maybe this is a sign that my body just doesn't need it but I dont think I will be that lucky I am not trying to scare anyone just wanted people to be aware of the possibility Bren

same as Christy triggers are different for everyone and can even change from one day to the next......fun right? and I have the same specialists plus I am lucky enough to see a local internist/oncologist that I used to work with who oversees everything. Hang in there.....hope you start to get some relief soon Bren

so I am bumping this post as I just found out recently that I am showing the early signs of Cushings and liver enlargement thanks to being on Florinef. I was completely shocked! I had gone to my specialist because I have had some swelled areas around my neck lately and thought perhaps it was edema or infection. To my surprise he stated you are getting a bit of a "moon face" time to slow down on the florinef.......I only take 1/4 tablet a day. When I said to him that it is supposed to be a mild glucocorticosteroid he replied it doesnt matter it is still a steroid and over time even a small dose can build up in the tissues and start causing side effects. WOW who knew!!? So now I have been bumped down to every other day to see if the effects lessen. Just thought I would share this in case anyone else is experiencing funny side effects. Bren

Abby Sorry you are suffering with these episodes big hugs........when I first came down with POTS I suffered from horrible "jitters" constantly....I later found out through testing that I had extremely high levels of adrenaline hence that is what was causing the pseudo-anxiety attacks sometimes with or without tachycardia. I still get them especially when I get hit with a bad flare but thanks to being medicated they have reduced quite a bit.....are you any medications for your POTS? Bren

altruism, you are not the only one fluids do nothing to really help my symptoms either.....I have seen the most improvement since starting the MCAS treatment

Hey Dana Good for you! I actually bumped this after seeing my specialist yesterday for swelling I was having in my neck. He did his examination and told me he thinks I am showing early signs of Cushings which absolutely stunned me he believes it is related to the use of Florinef.....he said any time you are on a long term steroid regardless of the type of steroid, and the fact that it builds up in the tissues you are at risk for Cushings? I had no idea of this as I was told that florinef was a very mild steroid, apparently for me its not. Also, I am showing an enlarged liver which he believes is steroid related.....and that is all from a 1/4 dose of 1mg tablet....yikes!!!!! I am not that familiar with Addisons, is it like Cushings? Bren

Hi I was told by my specialist that it can take many months to see improvement when starting the MCAS treatment.....his words were "it is a long a difficult journey" mainly because every presentation is different......what works for me may not work for you so the meds have to keep getting tweaked. The gastrocrom in particular I was told could take up to 6 months before any improvement and that I would feel much worse when initially starting it. I take benadryl mainly for breakthroughs....I also take zantac, claritin, gastrocrom, lorazepam and sometimes aspirin. Hang in there! Bren

the gastrocrom is the mast cell stabalizer

At first Benadryl was the only H1 I could tolerate too......all the others just made me way sicker .....but I kept at it and finally after taking really small doses throughout the day (like 5mg at a time) I have been able to tolerate Claritin. In my case though I have found that its the Zantac and gastrocrom that are more important for controlling a lot of my symptoms......but I still use Benadryl for breakthrough symptoms. My MCAS specialist is more in favour of mast cell stabalizers rather than high dose antihistamines because they can be hard on the system and for us with hypovolemia can wreak havoc with hydration

I am like you Naomi.....my head symptoms are the worst I actually take a small dose of bisoprolol (less than 1.25 mg)and it does have an effect.....but only on an as needed basis and my specialist is perfectly fine with it. I have MCAS so technically he doesn't want me on a BB but some days my HR and BP are just swinging too much that I have to take a tiny dose to stabalize it and luckily the very small dose doesn't mess with the mast cell degranulation too much.....but I do find if I take it daily it builds up and then I run into troubles.....because it is such a low dose I don't have to be concerned with tapering.....he said that is usually a concern with larger doses and over long periods of time. Also, when I was starting out I was having my BB compounded into liquid so I could take smaller doses......have you tried that approach? Bren

me too! I have gained a lot of weight after starting Florinef...... my specialist says he doesn't think the low dose I am on could cause that but I know it's the Florinef.....it still has steroid components even if it is a small amount. I think it somehow has effected my hormones too in turn causing the weight gain. I hardly eat and yet still have gained weight it is frustrating fighting with that along with all the other annoying symptoms........

I am the same with my MCAS......I don't get a lot of infections except for sinus....but I suffer symptoms of some kind 24/7. There are good days and bad days but never Great! days if that makes sense. In regards to the regular allergy testing I was negative to almost everything also but had flushing on the chest but not at the RAST sites. My specialist said this was a good clinical criteria for mast cell involvement ....also every person with mast cell can present differently...it is not an absolute science. The best way to go about it would be to have your GP do a trial run of MCAS meds ie; Zantac, antihistamines and see if your son has any improvement....that really is one of the best indicators....good luck Bren

I have had carotidynia several times. When I get it I get severe pain in my neck veins and my blood pressure spikes really high.....I can literally see my carotid artery throbbing very forcefully in my neck and it is very painful! the only advice I have been given to help is anti inflammatories......small dose beta blocker helps a little too because it slows down the blood flow a bit.......

It could be an MCAS episode.....mine are very similar......benadryl usually knocks me out of one....when I was diagnosed I was told that many spices can trigger mast cells and that I must never eat cooked food that has been left out or leftovers because they are very high in histamines. If I am going to eat leftovers they must be from a frozen state. Apparently even after 1 hour a lot of foods double in the amount of histamine so if you know you have an issue with mast cell it may be a good idea for you to stay away from leftovers and spicy food. A good website I use for reference is http://www.urticaria...ksinc.com they give you a list of restricted and non-restricted foods regarding histamine. Although histamine is only one of many receptors that trigger in MCAS.....fun stuff NOT! hope you are feeling better today! Bren

I find Zantac is one of my most important meds.....I also have MCAS and for me yes it does help alot with the shortness of breath and other issues......I definately know when I have missed a dose.

Bless you Issie for being the guinea pig I do so hope you see results with it.....interesting enough Lyme Disease was one of the first things my internist tested me for but all came back negative but even he said the tests aren't very good .....at this point I am willing to try anything....the MCAS protocol is helping but only by a little so far.....diet is also my next step.....what is there left to lose? Please keep me posted on how you are doing Bren

I have the exact same waking pattern as you with my adrenal surges even without tachycardia...its one of my worst symptoms. I am going through a bad flare up right now in fact. Apparently histamine and cortisol levels can be a contributing factor; I have found that my MCAS regime is helping a bit with this. I know I have very high catecholamines as proven on my TTT so I just chalk it up to that....believe it or not sometimes when that happens I will have half a cup of coffee or take a zantac and it settles down. Also are you drinking enough fluids before bed? you could be dehydrated

Big hugs pumpkin <3 Don't immerse yourself in this guy's negativity......it is his loss to have you as a friend Bren