Looking for feedback on tapering off Cortef

[Gingergrrl]

Hi @Gingergrrl - My new doctor in T.O. (who I like better than when I first met him ) wants me to try a low dose of Cortef - 5 to 10 mg. a day, as I see fit.

Hi @Mary ... I am so glad that you are liking your new doc in T.O. better than your first impression. As far as Cortef, I will tell you my experience which may not be applicable to you b/c we would be taking it for completely different reasons.

Last summer, as you know, I was having acute mast cell allergic reactions including anaphylaxis to all food but water. My doctor was trying everything to stop them and felt that Cortef could help suppress the allergic response so I started with 5 mg and quickly went up to 15 mg per day. I have now been on Cortef for almost 1.5 years. Once I found my MCAS doctor, I found a regime of other meds that worked so I attempted to taper off of Cortef last Jan. However, by the ninth day I was almost back to the point of not tolerating food again so all of my doctors told me to stop the taper which I did.

I've read so many negative things about it, am very reluctant to try it. I think he thinks that PEM is caused by weak adrenals. He's a nice guy and knows a lot but I don't think understands ME/CFS or PEM. My cortisol levels were a little low a year ago, and I haven't been retested.

My Endo (who I see for Hashimoto's thyroid issues) was very against me going onto Cortef and calls it a "very nasty med". However, even he realized that due to the severity of my MCAS at that time, that it was necessary. He has always wanted me to taper off of it though and reached a point where he was no longer willing to prescribe it (but luckily my main doc and my MCAS doc had no problem prescribing it so I was okay). I never took it for ME/CFS, for PEM, or even for adrenal issues vs. to control the insane allergic reactions that I was having to all food.

I guess I wanted to see if you had any thoughts in general re taking Cortef. I have taken a small dose of licorice several times - I seem to be very sensitive to it and only tolerate half a capsule maybe every other day.

I have never tried licorice so cannot compare. I literally have never had any side effects from Cortef and take a high dose of Solu-Cortef as an IV pre-med before IVIG and also have not had any problem with that.

My issue is with the weight gain and also with the potential long-term problems. I have gained a HUGE amount of weight (over 20 lbs) from Cortef and being in a wheelchair, I cannot even walk around. In addition, Cortef can cause diabetes and I learned that I have the autoantibody (anti GAD65) that can cause diabetes so I am at high risk. My Endo ran about 6-7 different tests for diabetes and I do not have it now, but I do not want to ever have it b/c I already have enough problems! Lastly, Cortef can cause osteoporosis and I have fallen several times in the past when I was weaker (not recently) so I also do not want to risk breaking a bone in the future.

And I have to watch what I eat every single day - I gain weight at the drop of a hat if I'm not careful because my activity is so limited due to PEM. So the thought of gaining weight on Cortef is a deal breaker for me.

I am the same way. I am shocked at my current weight and suspect I will not be able to lose it until I am off of Cortef.

I hope your taper is going okay!

Today is day 4 and so far there are no issues. For whatever reason, since starting IVIG (and my third infusion is in about ten days), my MCAS has almost reversed itself to the point it is gone. So I figured this was the perfect time to attempt going off of Cortef (while still on all of my other MCAS meds and supplements). I am doing a 15 week taper so it will be really slow and hopefully my allergic reactions will not return. My main doctor said it might not be a good idea to "rock the boat" per se but my Endo wants me off of it and I want to be off of it and this seemed like the perfect time to attempt it.

If you tried it, would it be temporary or something your new doc would want you on forever? Hope this helps.

 

[Mary]

@Gingergrrl - thanks for your detailed response - I am so glad to hear your MCAS has almost reversed itself due to the IVIG! I've said it before, I cannot imagine going through what you have and am very happy for you that you're finally getting some help with MCAS. Maybe more improvements will come down the line, but obviously one thing at a time.

The doctor downplayed any side effects from Cortef, saying the dose was too low to cause harm like osteoporosis, etc. But --- doctors do tend to downplay "side" (actual) effects of drugs. I think he mainly wanted me to try it and see if I felt better on it. He asked me if I was going to "pay" for the visit to T.O. - he meant physically, the next day - and I said yes, knowing I would crash from the travel back and forth. And he thought the Cortef would help, so again, I think he thinks crashing (PEM) has something to do with adrenals, but it really doesn't.

He's urging me to try it, but wasn't offended when I told him on the 2nd visit that I hadn't filled the prescription. I told him I would think some more about it.

I think for how I'll put it on hold, and continue to play with the licorice (especially since there's the possibility of weight gain! If for no other reason, I would not stick with it if I gained weight on it)

Have you looked into licorice? It might help raise your BP. But of course I have no idea how it would affect MCAS or anything else.

 

[Gingergrrl]

@Gingergrrl - thanks for your detailed response - I am so glad to hear your MCAS has almost reversed itself due to the IVIG! I've said it before, I cannot imagine going through what you have and am very happy for you that you're finally getting some help with MCAS. Maybe more improvements will come down the line, but obviously one thing at a time.

Thank you so much @Mary and I have no idea if this reversal is permanent or just temporary. I am using this opportunity to taper off of Cortef but my main doctor feels the Cortef is playing an important role and that I should continue (although he supports the taper). However my Endo very strongly feels that I should get off of Cortef b/c of the diabetes risk with the GAD65 antibody and in general feels steroids should be for short-term use (although he supported it 100% when I was having anaphylaxis to all food and we were desperate to find a solution).

So I am getting some conflicting opinions but truthfully, I have to stop the weight gain and the thought of adding diabetes to my list of problems is daunting. If I can reverse the MCAS with IVIG and my regime of other MCAS meds, I have to go for it. If the Cortef taper leads to me not tolerating foods again, then I will have to stay on it (but am praying this does not happen). Today is day five and last time I made it to day nine but I was much sicker (MCAS-wise) at that time.

The doctor downplayed any side effects from Cortef, saying the dose was too low to cause harm like osteoporosis, etc. But --- doctors do tend to downplay "side" (actual) effects of drugs.

It does have a lot of side effects but they seem to be long term. In the short-term it was worth it for me but in the long-term if I can get off of it, that is my preference. And now that I've been on it for 1.5 years, I am already past the "short-term" and hoping the only damage I did was the weight gain. One side of my family has a history of diabetes and the other has a history of osteoporosis and I know my muscles/bones are not strong from being in a wheelchair and Cortef is making them weaker in the long-term. Having said that, I will still be using Solu-Cortef every three weeks as a pre-med for IVIG which could affect the taper but I really have no choice and it is preferable to me than Prednisone or another steroid as the pre-med.

I think he mainly wanted me to try it and see if I felt better on it.

You may feel better on it and I don't want to discourage you. If I could walk around without the wheelchair, I don't think I would have gained 20+ lbs this year. I am also on antihistamines that cause weight gain but for now, I have to continue those and do not dare mess with too many things at once. I do not want to fear anaphylaxis with every bite of food I eat like last summer ever again.

Have you looked into licorice? It might help raise your BP. But of course I have no idea how it would affect MCAS or anything else.

In 2014 I was going to try licorice and my former naturopath strongly advised me not to and I just cannot remember why. I did not have MCAS until March 2015 so it was for another reason. I do not know if it was b/c of having POTS, Hashimoto's, or something else but it made sense at the time. I wish I could remember what it was!

 

[Mary]

Hi @Gingergrrl - I've decided I'm going to fill the prescription, and then see what muscle testing indicates, done by myself and my chiro. I know many (most probably!) people will think this is crazy but it's worked for me so many times. And it will only cost me $4 for the prescription and small copay for my chiro.

I had developed severe insomnia (worse than my usual), am not quite sure why that happened, but it seems to be under control now, by upping my 5-htp from 100 to 200 mg. (have just ordered 50 mg. so I can fine-tune it) and also taking Bob's Red Mill Potato Starch, unmodified, from the resistant starch thread - I was staying awake for at least 2 hours every night in the middle of the night no matter what I did, then awake again at 4:30 or so and last night I took 2 tablespoons of the resistant starch with dinner and did my usual wake-up but was back to sleep within 15 minutes, it's the best I've slept in weeks (months actually!)

The reason I brought that up is because I had stopped trying the licorice, afraid it was contributing to my insomnia but I think it's safe to try it again, will wait until tomorrow to see if I get two good nights in a row.

Well, good luck with everything! Thanks as always for all your input --

 

[Gingergrrl]

Hi @Gingergrrl - I've decided I'm going to fill the prescription, and then see what muscle testing indicates, done by myself and my chiro. I know many (most probably!) people will think this is crazy but it's worked for me so many times. And it will only cost me $4 for the prescription and small copay for my chiro.

Thanks for the update and was curious if you ended up filling the prescription. It sounds like you are getting the generic hydrocortisone if it was so cheap. Sadly for me all of the generics had a food dye so I have to take the actual brand, Cortef, which is dye free. Am hoping some day that this will not be an issue for me. And I do not think that muscle testing is crazy, I just do not know how to do it and neither do any of my doctors including my chiropractor. I saw him this week b/c I re-injured my neck and lower back but he doesn't do any muscle testing stuff.

I had developed severe insomnia (worse than my usual), am not quite sure why that happened, but it seems to be under control now, by upping my 5-htp from 100 to 200 mg. (have just ordered 50 mg. so I can fine-tune it) and also taking Bob's Red Mill Potato Starch, unmodified, from the resistant starch thread - I was staying awake for at least 2 hours every night in the middle of the night no matter what I did, then awake again at 4:30 or so and last night I took 2 tablespoons of the resistant starch with dinner and did my usual wake-up but was back to sleep within 15 minutes, it's the best I've slept in weeks (months actually!)

I tried 5-htp many years ago when I had chronic insomnia and it gave me a severe headache. Insomnia is no longer a major issue for me although I am often awake for various reasons. I tried a tiny dosage of the potato starch (1/4 tsp a day) for a while many months ago but never really noticed anything- good or bad. Maybe my dose was too small?

The reason I brought that up is because I had stopped trying the licorice, afraid it was contributing to my insomnia but I think it's safe to try it again, will wait until tomorrow to see if I get two good nights in a row.

Am still trying to remember why my former ND told me not to take licorice and I know it did not have anything to do with insomnia in my case. Can it affect tachycardia or thyroid issues?

Well, good luck with everything! Thanks as always for all your input --

No problems and I always enjoy talking with you. Am going to post an update on my Cortef taper next.

 

[Gingergrrl]

Update: Today is day 6 of my Cortef taper and I am starting to have some doubts but for now am continuing with it. My main doctor feels that I should not rock the boat since I have had such a vast improvement in my MCAS but my Endo feels very strongly that I need to come off of Cortef b/c of future diabetes risk and I want to come off b/c of the weight gain.

Yesterday I had a return of some allergic symptoms for the first time since starting IVIG but they were not horrible and oddly, they were not connected to food/eating. I noticed that my throat was very itchy and I started to get phlegm in throat that was difficult to clear. However this was about nine hours after eating and it subsided on it's own and I did not need to take Atarax. In addition I was able to eat a normal dinner later last night with no adverse effects.

So for now, I am not certain if this was an isolated event or b/c of the Cortef taper. If I start reacting to foods and smells again on a regular basis or get severe reactions requiring Atarax, then I think the taper is over. But if I have minor allergic symptoms here and there, I plan to continue. It was to be a 15 week taper (reducing by 1/2 pill every three weeks) but I can slow it down even further if needed.

My next IVIG is on Sept 10th and will have a large dose of Solu-Cortef as one of my pre-meds and I'm sure this will affect the taper but there is really nothing I can do about this. It is possible I am not allergic to the IVIG (Gamunex) and don't need the Solu-Cortef but I just cannot risk it and prefer to be safe.

Thanks to @Mary and anyone who is reading this saga! It might be good reading for those with insomnia LOL.

 

[Mary]

I tried 5-htp many years ago when I had chronic insomnia and it gave me a severe headache. Insomnia is no longer a major issue for me although I am often awake for various reasons. I tried a tiny dosage of the potato starch (1/4 tsp a day) for a while many months ago but never really noticed anything- good or bad. Maybe my dose was too small?

The 5-htp did give me a moderate headache when I first tried it, for about a week, but it helped with sleep so much I stuck it out, and then the headache just stopped. But it wasn't severe - I don't think I could have stuck with it if it was.

I do think your dose of potato starch was too small, based on what I read on the resistant starch challenge. I believe the recommendation is up to 4 tablespoons a day, but to start with one and see what happens. I took 4 the other day, 2 a.m. and 2 after dinner, and did fine with it, and as I said, slept noticeably better - it was great! and then last night unfortunately woke up around 3:30 a.m. and could not go back to sleep, but I'm undaunted - I'm going to try again!

Am still trying to remember why my former ND told me not to take licorice and I know it did not have anything to do with insomnia in my case. Can it affect tachycardia or thyroid issues?

There is an issue with licorice and tachycardia, lots of hits when I googled it.

Re your Cortef taper - could you just stop at the level you are at right now for a few weeks and see how you do? I know you want to get off it all the way, but maybe just stop for awhile to make sure you're doing okay?

Keep us posted!

 

[Gingergrrl]

The 5-htp did give me a moderate headache when I first tried it, for about a week, but it helped with sleep so much I stuck it out, and then the headache just stopped. But it wasn't severe - I don't think I could have stuck with it if it was.

For me the headache was severe although it was minor compared to the headache that I got from that first IVIG!

I do think your dose of potato starch was too small, based on what I read on the resistant starch challenge. I believe the recommendation is up to 4 tablespoons a day, but to start with one and see what happens. I took 4 the other day, 2 a.m. and 2 after dinner, and did fine with it, and as I said, slept noticeably better - it was great! and then last night unfortunately woke up around 3:30 a.m. and could not go back to sleep, but I'm undaunted - I'm going to try again!

Sorry you are having so much trouble with sleeping and I have had this in the past and remember how horrible it was. Maybe I will try the potato starch again at a higher dose in the future. I always start very low with everything to be safe!

There is an issue with licorice and tachycardia, lots of hits when I googled it.

It must have been b/c of the tachycardia/POTS issue although I still feel like it was something else.

Re your Cortef taper - could you just stop at the level you are at right now for a few weeks and see how you do? I know you want to get off it all the way, but maybe just stop for awhile to make sure you're doing okay?

I am actually at this level for three weeks either way so it is a pretty slow taper. But if I reach the three week point and feel I need to stay at this level longer, then I definitely will and I control the speed of the taper.

Keep us posted!

I will and am hoping it is all good!

 

[Gingergrrl]

I have to post a new update and my Cortef thread seemed like the best place. Putting aside this is not good from a weight loss perspective I have to share this b/c I am in awe right now and almost feel like this is a dream.

I was able to eat gluten free crackers with vanilla almond butter and a cup of hot chocolate without taking any of my food meds first and without any allergic reactions. I know this may not sound like a big deal but this is unprecedented for me since the day my MCAS began. It's been about an hour since I ate it and absolutely zero reactions PLUS this was without my food meds that I take 30 min before eating.

So I will definitely be continuing with the Cortef taper and the only thing I can attribute this to is that the IVIG has shifted something in my immune system back to the center. Am typing this to make sure it was not a dream. And I plan to continue all of my food meds throughout the Cortef taper and beyond but just wanted to try this as an experiment and it worked. I cannot believe that I can drink hot chocolate again!

<--- am pretending that is hot chocolate vs. coffee

 

[Gingergrrl]

Today is day 8 so I am officially starting the second week of my Cortef taper with no issues. My new foods yesterday were Monterey Jack Cheese and peas (not together LOL). The hard cheeses are on the list of foods that are the highest histamine offenders so I decided to try a "semi-hard" cheese first and had no reaction to it even without any food meds.

My MCAS reactions seem to be in remission but am not sure how far to test things. I would LOVE to attempt to dye my hair but anything involving a dye is the absolute last thing I will try. But I will definitely continue with the Cortef taper and have two more weeks at this dose before I reduce it again by 1/2 pill.

@Mary Have you done the muscle testing or started Cortef yet? Was curious what the final verdict was?!

 

[Mary]

Hi @Gingergrrl - Glad to hear so far so good re your taper! Whew!

I haven't got the Cortef yet, I dropped off the prescription on Friday and haven't gotten back to pick it up, I hope to do that tomorrow or Tuesday. Unfortunately something has gone very wrong with my sleep, I don't know what's going on. All my usual tricks (lots of glycine, GABA, l-theanine and niacin) are not working, resistant potato starch seemed to work fabulous one night, and then my sleep got very bad the next. I can't remember the last time it was this bad so I'm having trouble functioning right now - arghh! I have a prescription for trazodone (for sleep) which I've had for 2 years and haven't touched, as I hate ADs, but am almost desperate enough to try a small dose. Will see how tonight goes -- I'll let you know once I get the Cortef what the muscle test verdict is. I'll be seeing my chiro either this week or early next, as I want to get his take as well, I don't trust mine alone on this.

 

[Gingergrrl]

Hi @Gingergrrl - Glad to hear so far so good re your taper! Whew!

Thanks and today I decided to test a food that was much higher risk, yogurt, to see how it goes. Yogurt is high histamine both b/c it is fermented and contains histamine inducing probiotics. But the IVIG has put my MCAS into some kind of remission and I felt confident to do it. So I ate a normal size container of Noosa blueberry yogurt with no reactions! This time I did take all of my food meds 30 min prior to be as safe as possible.

I am really wondering now if I can resume eating any and all foods but am still testing one food at a time to be safe. I am going to try to research if there is a mechanism in which IVIG resets the immune system to eliminate mast cell reactions. For anyone who has not had these reactions, I know hearing about eating yogurt is as exciting as watching paint dry LOL, but for me, this remains mind-boggling and I want to believe this is permanent but afraid it might not be.

I haven't got the Cortef yet, I dropped off the prescription on Friday and haven't gotten back to pick it up, I hope to do that tomorrow or Tuesday.

No worries and I was just curious.

Unfortunately something has gone very wrong with my sleep, I don't know what's going on. All my usual tricks (lots of glycine, GABA, l-theanine and niacin) are not working, resistant potato starch seemed to work fabulous one night, and then my sleep got very bad the next. I can't remember the last time it was this bad so I'm having trouble functioning right now - arghh! I have a prescription for trazodone (for sleep) which I've had for 2 years and haven't touched, as I hate ADs, but am almost desperate enough to try a small dose.

Am so sorry about your sleep. I know this is controversial but are you able to take a small dose of something like Klonipin? When I had severe insomnia many years ago before I was sick I tried Trazadone but had a horrible reaction to it (my head was stuffed up like cotton and mouth/throat very dry/parched and severe pressure behind my eyes). I was at a tiny dose (like 25 mg) but just didn't tolerate it. But others do great with it and don't get the weird side effects like I do.

Will see how tonight goes -- I'll let you know once I get the Cortef what the muscle test verdict is. I'll be seeing my chiro either this week or early next, as I want to get his take as well, I don't trust mine alone on this.

Good luck and curious to hear what your chiro thinks about the Cortef.

 

[Mary]

I know hearing about eating yogurt is as exciting as watching paint dry LOL, but for me, this remains mind-boggling and I want to believe this is permanent but afraid it might not be.

We all get excited about things like this! I know it's huge for you and am crossing my fingers it lasts --

I've never had Klonopin. Actually, I was tapering off 1 mg. lorazepam in the middle of the night - doing fine it seemed, am down to 0.5 mg now. I don't think this current crazy insomnia is related to this taper, but don't know for sure. I have read about people having a horrible time getting off of klonopin - I seem to be between a rock and hard place here! I had a bad reaction to both Prozac and Elavil (amitryptiline) - so am very leery of trazodone, but that tells you how desperate I am that I would consider it. I'm going to try one more night with my usual stuff, I had been taking niacin after dinner and for some reason stopped that and took it later, and maybe that's partly why I'm having such a hard time so will go back to taking some after dinner. Cross your fingers for me!

I'll keep you posted on the Cortef --

 

[Gingergrrl]

We all get excited about things like this! I know it's huge for you and am crossing my fingers it lasts --

Thanks!

I've never had Klonopin. Actually, I was tapering off 1 mg. lorazepam in the middle of the night - doing fine it seemed, am down to 0.5 mg now. I don't think this current crazy insomnia is related to this taper, but don't know for sure.

I suspect your current insomnia is related to the Ativan taper and if you can wait it out, it might improve on it's own. Or you could try the Trazadone and may not have the horrible side effects that I did when I tried it about 10+ yrs ago.

I have read about people having a horrible time getting off of klonopin -

I am in the group that has never had a problem with Klonipin and take a small dose. Last summer when my MCAS was killing me, my doctors told me that benzos are actually mast cell stabilizers (which I had no idea) and had me raise the dose but once I improved, I lowered it significantly and had no issue with this and am now back to my tiny dose. For whatever reason, I just do better with tiny doses of meds and I usually know very quickly if it is something that I can tolerate.

Cross your fingers for me!

Absolutely and hoping you sleep well tonight

 

[Gingergrrl]

Am on Day 13 of Cortef taper and if not for the weight gain and potential diabetes risk with my antibody, I would abandon the whole thing b/c it is too challenging.

I am getting allergic reactions again, not even specifically to food which is odd, but just in general with everything from my head/ears stuffed up, to throat so itchy/swollen I can't stand it, to histamine surges with agitation and tachycardia, nausea/ulcer type feeling, insomnia, etc. It is miserable but my third IVIG is tomorrow and hoping it puts the MCAS back into remission like it did for three weeks so I can continue with the taper.

I e-mailed my Endo to ask if maybe doing a faster taper would be better (like two weeks at each stage vs. three weeks, etc) and waiting for a response. I think once I hit the lower dose, my brain will kick in and make the excess Cortisol. Am afraid if I do not continue with taper, I will be on Cortef for the rest of my life and timing-wise, the remission of allergic symptoms from the IVIG is the best chance I have to attempt it.

The weight gain is very fast and unbearable even when I skip dinner for 2-3 nights in a row, it makes no difference. Plus the thought of it kicking my anti GAD65 antibody into actual diabetes is the last thing I need. My Endo *really wants me off the Cortef, and I really want to be off of it, so for now am going to stick with it. I've tapered off of meds at different points in my life (pre-MCAS) and this one is without question the most challenging and is messing up the vast improvement that I had from the IVIG. But unless I were to become so allergic that I was close to needing an EpiPen, I plan to continue with this.

Cortef --> (for me right now, not saying this applies to anyone else)

 

[Gingergrrl]

Update for whatever kind souls are still reading this long saga...

I started to feel very dizzy, light-headed, confused, and something was just really off in addition to my throat being unbearably itchy/swollen and even my rescue med, Atarax, did not improve it.

I called my Endo (and have never called him once in 3+ years of seeing him but I was that concerned). He said that I absolutely should stop the Cortef taper b/c my body is not ready for it and it was too risky. I asked him if "risky" meant allergic reactions progressing to anaphylaxis and he said no, risky meant, "Adrenal crisis leading to shock leading to death leading to you go to Heaven" (verbatim end quote ).

He said that the dizziness, nausea, insomnia, agitation, allergic reactions, etc, means that I either stop the taper or we slow it down. He said speeding it up (which had been my thought) was the worst possible thing to do. So we are going to try alternating days of me taking 15 mg and then 12.5 mg until I do the blood work and see him in about 2-3 weeks. ETA: At this point am now thinking even the alternating is too much and I am going to stick with the 15 mg dose as usual.

An additional factor (but I have no choice) is that I get a large dose of Solu-Cortef as a pre-med before each IVIG (next one tomorrow) and he said that messes with my brain's ability to produce hydrocortisone on it's own. But not having a steroid pre-med before IVIG is risky b/c of potential anaphylaxis and I'd much rather have Solu-Cortef than Prednisone or something stronger.

He understood and said we'd discuss it at the appt. So this taper is now going to take a year (vs. 15 weeks) if it happens at all. I am never going to lose the 20+ lbs that I gained and I am certain that by trying to taper the Cortef, I messed up the three week remission that I had from MCAS from the IVIG. All of the other factors were the same and my main doctor said not to "Rock the boat" but I thought this was the best time to taper off the Cortef but instead I ruined the MCAS remission and maybe I will never get it back. It was amazing while it lasted though.

 

[Mary]

@Gingergrrl - wow, I'm so sorry the Cortef taper has been so rough! and that it may have messed up your MCAS remission. I've been off the board for a couple of days because of the severe insomnia, just was not functioning very well, but I seem to be getting a handle on it, I'll go into this later.

I'm wondering if you might do okay with licorice after all. I'm not recommending making any changes until you get stabilized. But I looked up Cortef, and tachycardia is a potential side effect (same as with licorice). I finally got my Cortef prescription from my pharmacy and both my testing and my chiro's muscle testing indicated it was good for me; however, I also test strong for licorice, and actually stronger. I think licorice may be safer than Cortef; my chiro was strongly against me taking Cortef and if I don't have to, I don't want to.

With all my experimentation trying to get sleep (and you were right! the insomnia was from my lorazepam taper), I ended up taking something which initially helped with sleep but ended up causing my cortisol levels to tank - it was l-ornithine. So I stopped that, but did have rather severe fatigue for a couple of days and so am now taking licorice and getting my energy back, and also taking niacin and niacinamide and l-theanine and theanine serene and my remaining 0.5 mg. lorazepam at night, plus 25 mg. trazodone, which I seem to be tolerating okay and with all of this, I've finally had 2 pretty good nights of sleep in a row. Whew! It has been a balancing act and still needs some tweaking, but I think I'm finally on the right track.

I know you said one doctor recommended against licorice, but I really think it might be worth looking into again. It is pretty powerful stuff. Before my cortisol levels tanked, I felt a difference just from one-half of a capsule of licorice, but am now taking 1-1/2 capsules a day and I'm improving. Also, I think many doctors (including my own MD) believe prescriptions are better than herbs - I think they have a bias. It's what they've been taught.

I hope your IVIG infusion went okay! Let me know how it went --

 

[Gingergrrl]

@Gingergrrl - wow, I'm so sorry the Cortef taper has been so rough! and that it may have messed up your MCAS remission.

@Mary Sorry for my very slow reply to this thread and I saw my Endo this morning and wanted to write an update in here for you and a few others who have asked me. And my MCAS went back in remission once I went back on the full dose of Cortef . Am hoping you are having some improvement with your sleep situation.

The most interesting piece of info that I learned from my Endo, which I completely had misunderstood prior to today, is re: my GAD65 autoantibody and it's diabetes risk in relation to being on daily Cortef. It turns out that the GAD65 Ab puts a person at risk of Type 1 diabetes or autoimmune diabetes. Whereas Cortef (or any steroids) puts a person at risk of Type 2 (non-autoimmune) diabetes. They are completely separate and do not intertwine. So whether I stopped Cortef today or took it for the rest of my life, it will never be related to the GAD65 autoantibody risk!

I had thought that the combination increased my diabetes risk (i.e. having the GAD65 Ab AND being on Cortef together made it a higher risk) but it does not. So if the GAD65 Ab is going to ultimately give me diabetes, there is not much I can do about it and stopping Cortef does not help. My Endo said that if anything, taking Cortef could actually end up suppressing the GAD65 Ab and reducing the risk of Type 1 diabetes.

He said that the GAD65 Ab represents "an autoimmune attack against the glandular organs" but since I have Hashimoto's disease, the GAD65 could be there b/c of the current attack of the two Hashi's Abs on my thyroid. He tested me again for other markers of diabetes (both normal stuff like fasting glucose and some autoimmune markers like "ZNT8" and everything is totally normal).

I told him how IVIG twice has put my MCAS into remission and I can eat normal foods without 6-7 pre-food meds, can tolerate smells, have not needed my rescue med, Atarax, etc, but when I attempt to taper off of Cortef, within one week I am back to not tolerating food and being a potential anaphylaxis risk. I asked him, given the total picture, what I should do? He is very against steroids but he said, "I would be a fool if I were to tell you to taper off Cortef right now and I think you should stay on it"! This was a huge relief b/c my main doctor and mast cell doctor want me to stay on Cortef and now that my Endo agrees, no one is in conflict.

He said from my blood tests that I have an "intact adrenal axis" (from an endocrine perspective) and that my body is still producing it's own Cortisol so that the 1.5 years of being on Cortef has not created a secondary adrenal insufficiency. He said this was very good b/c it means I can still potentially taper off Cortef in the future even though not now or any time soon.

My TSH and other thyroid numbers were all normal except that the two Hashi's autoantibodies had both gone up. He said this is to be expected (that they will fluctuate) and was not concerned. I had wondered if IVIG would lower them but it did not. But I also am not at the autoimmune dose of IVIG so I am not surprised. I don't feel concerned re: the Hashi's autoantibodies and am just hoping that IVIG will lower my calcium channel antibody (which is a cancer risk) and ideally increase my muscle strength and ability to breathe.

I told him about my worsening startle response in relation to the GAD65 Ab and my concern re: having a mild version of SPS (Stiff Person Syndrome) and he said this was really a question for my Neuro. My Vit D and Magnesium tests were in normal range. I am going to ask my Neuro if it is okay for me to increase Mg (which improves my startle response and muscle symptoms) BUT two prior Neuros told me not to take Mg b/c of my calcium Ab. I never asked her this question so am curious what she says. My Endo deferred this question to her as well which is okay.

So overall, I am thrilled that I do not have to attempt the Cortef taper again b/c it always ends in disaster and hopefully this means my MCAS will stay in remission!

 

[Mary]

@Gingergrrl - I'm very glad to hear all this! Whew!

 

[Gingergrrl]

@Gingergrrl - I'm very glad to hear all this! Whew!

Thanks Mary and I am relieved too!