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596605 tn?1369946627

Low dose Dexamethasone vs cortef

Hi-
I've been hearing about many patients who are being put on low dose Dex 0.25 mg a day vs cortef for AI. One woman in particular has mentioned to me that this has been a great therapy in that she has no highs and lows. I am on cortef due to pituitary AI. And while I have managed to get a pretty good dosing scheme, I still have early morning fatigue. Once I take my cortef I am fine. Is there anyone on the low dose dex therapy that was previously on cortef that has found this to be a better med for you?
Thanks
Horselip
Best Answer
Avatar universal
They developed it for CAH as they noted people on replacements all got heavy (gee!) and cushingoid... I know one brand under consideration is called duocort - and I thought it was available in some countries but just in trial in the US. I told my doc that as soon as it was out, I wanted it.

You can probably take dex at night as it should take several hours to kick in. It lasts long, but it also takes a bit to kick in - again if you look at the calculators, you should see that the corticosteroids are grouped in fast acting, short lasting all up to long acting, long lasting.  To do pred, some do well to wake up and take it at 4am and then go back to sleep and it is a nice 8am boost. Also those that are super energetic do well on the long lasting ones as they *use* all the steroid - unlike me who is a slug... I only take 15mg.
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596605 tn?1369946627
Same here sorry to hear that you are sick Rumpled. Sinus and chest crud is not fun. Agree on the bleah to sinus surgery. Worse than pit surgery. since they mess around so much in the soft tissue. Last July when I had that second skull patch done the ENT took out about 1/3 of my sinuses. That was a bloody mess that s*cked. There i did it for MedHelp.

Ok I slept fine last night. I put the ceiling fan on because I get so hot even though we have a/c. It's a little spat between the hubby and I, Anyways slept like a babe. So I know the reason now. hah. now I can one up the hubby :-)

So I need the ceiling fan for my mental health thus for my hormonal health!
Helpful - 0
Avatar universal
I'm sorry you're sick. Hope it doesn't last long. Have you ever tried bromelain enzyme for your sinus trouble? I take quercetin with bromelain whenever I have sinus or other possible inflammation issues. It didn't seem to help the first time I tried it, but after going to three capsules at a time, it really works!

I do think everyone's hormone issues are very individualized and you're right about timing having an effect on symptoms. Hypopituitarism (include word here which would be deleted by the moderators) !!!
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Avatar universal
Maybe yogurt?

I just got a shot of dex - sick as a dog (thanks to my hubby bringing home something!) but it helps me breathe when I get all this dang sinus/chest crap again. I was able to sleep for a while, but now I am all antsy... ENT wants me to get another sinus surgery... thinking I may have to - bleah.

You may have to time the pill just like people time the pred - time it to you and how your body uses it.


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596605 tn?1369946627
Day two-
Feel pretty good. Had probs falling asleep again last night-ugh
But I am going to give this more time. It could be my mind telling me  "taking steroids before bed is crazy"
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Avatar universal
Thanks for the idea. He won't eat applesauce, but maybe something else. He did have stomach issues for awhile, but now we are careful to see that he always has food in his stomach first.  8 )
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Avatar universal
Instead of in water - has he ever tried in a spoon of applesauce? Maybe all will go, and the food may help but a dose that small should not cause tummy issues.
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Avatar universal
Yup. Tried the 1/4 tablet dose. That didn't seem to last long enough. Also, he dissolves his pills in a glass with a bit of water, and I think a few grains always stick to the glass. 1/4 tablet is so tiny to begin with, I don't think he can spare even those few grains!
I hope you have no trouble sleeping.
Helpful - 0
596605 tn?1369946627
I can't do pred, nightmare for everyone in my house including the poor dog.

I tend to be more the slug type, like you. So yes, I am very cautious about taking more than I need.

No, I don't need any more weight. Nor dost thou want to be a raging Cushie.

I must say that it was nice to be able to be coherent upon waking rather than 30 minutes later when I've had my Cortisol and coffee. Also felt pretty good today energy-wise but not "flight or fight" amped either.

We shall see about whether I am able to go to sleep tonight and what day two will bring.

xxHoselip
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596605 tn?1369946627
I took my first dose last night and voila, I did feel more energetic this morning. Not like a complete corpse.

I did have a little trouble falling asleep last night but I'm not sure if it was the dex or not. hmmmm

Enzy I will keep the every other day dosing in mind, as I was on a lowish dose of cortef (10-15 mg). I am in communication with the endo. So particularly if I am feeling overly energetic I will bring this up. What about taking 1/4 tablet instead of 1/2 tablet? Just wondering if you've tried that route?

Horsey
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Avatar universal
I should add, now that he has been on the dexamethasone for quite a while, he is able to get away with taking it every other day, without any ill effects. In fact, I think he is doing better not taking it every day, but then, he doesn't exert himself at all, because he still has orthostatic intolerance. If he was very active, I don't know if he'd still be able to take it only every other day. (still 0.25 mg)
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596605 tn?1369946627
Thanks enzy and rumpled-
Rumpled, when is the long lasting cortef coming out, do you know?
Good info to know. I think that I might just give it a try. I can always switch back to cortef or the long lasting version when it comes out. I would love to nip the morning fatigue. I mean I am either on or off. It would be nice to be more on if it does not affect my sleep and bones.

I do get regular bone scans and the growth hormone and calcium supplements have def helped me in bone and muscle depts. I'm only taking 0.3 mg a day but I've gone from osteoporosis to osteopenia to "watch it".  Now I wonder when I will take my calcium? hmmm, ideas?

Ok thank you folks, will keep ya posted. I'm e-mailing my endo right now.
Horsey
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Avatar universal
0.25 dex is equal to 6.67 HC. But dex can last (half life) 36-54 hours - thus when you take another dose, the first dose is not out of your body.

Until the long lasting cortef comes out - and they are working on formulas that mimic a normal diurnal rhythm, the longer lasting steroids are kinda iffy as they work for some - but they do have hidden side effects like eating bone and weakening muscle etc. So keep an eye out for that.
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Avatar universal
Hi!  You may remember that my son also has pituitary AI. He was originally put on Cortef, and was kept on it (for 2 years) until we switched doctors, and he got the surgery to remove his pit tumor. While on Cortef, he still had a lot of morning fatigue, severe daily nausea, and lots of lows in the afternoons, but felt better at night. (I should mention that he was also taking Thyroxine, for pituitary-caused hypothyroidism). The Cortef never seemed to last more than 2 or 3 hours (except at night). It helped, but he still was very sick, daily.

He was switched to dexamethasone by his new endocrinologist, just a few weeks before his surgery. It has definitely been a better choice for him, since dex does such a good job of reducing nausea, and his nausea was the symptom that usually upset him the most.
He is on 0.25 mg daily and feels so much better!
Now of course, the removal of the tumor probably has a lot to do with how much better he feels, but I do believe the dex keeps his cortisol level more consistent, and he has no trouble getting up in the morning anymore (as long as he gets at least 6 hours of sleep).
And getting rid of the nausea is wonderful!

Enzy



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