Gingergrrl
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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.
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