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very hard to tapering pred is it normal, advice?

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Posted 8/4/2020 1:26 AM (GMT 0)
so i take long time ago ( i think 3-4 years )10 -12 mg medrol( prednisone). Now i was almost 100 % remission.

Recently i am on 10 mg prednision and try to decrease to 9 mg. But it is very hard, the symptoms are coming back. This is my second day since i am on 9 mg.
We have checked my cortisol level in myblood, it is very low, dhea as well, in this way recenlntly i have a little adrenal problem as well.

Can be problem to my body produce 1 more mg cortisol ? why? i dont understand..

what do you think my body/ anybody's body can produce 10 mg amount cortisol by itself? ( ok i know we take cortisone not the same ) or it is to much to produce this quantity by the human body?
Posted 8/4/2020 3:34 AM (GMT 0)
The body naturally produces about 5 mg of cortisol - that's what keeps your heart beating, among other things. However, if you have been on 10 mg of prednisone for quite a while the body will cut back on what is produced naturally. You have to come down off it VERY slowly and best to do it under a Drs guidance, as coming down off it looks different for different people. Come off it too suddenly and ... your heart could quit beating!!

If just going from 10 mg to 9 mg brings back your symptoms quickly, I have to ask: Why does the Dr want you to come down? Or is this something you think you should do? Maybe 10 mg is the better dosage for you!
Posted 8/4/2020 5:06 AM (GMT 0)
thans the response.

we discussed with doctor that 1 month = 1mg decreasing.

i would like come down from this drug...it has terrible sideffect... this drug put lot of fat to my body, to my face.... and it has other not so good sideeffects.
this is the reason while i try the cut the quantity of this drug.
Posted 8/4/2020 2:32 PM (GMT 0)
What other drugs are you on? If you can’t cut back on steroids without symptoms returning you may need to consider a climb up the medication ladder. I was in the same situation and went to entyvio which worked to put me in remission
Posted 8/5/2020 1:26 AM (GMT 0)
i take xeljanz and pentasa 4 mg.
with 10 mg steroid i am almost full remmision but with 9 mg is terrible.
I hate myself when i see my face in the mirror....
very hard to accept it....
Posted 8/16/2020 4:26 PM (GMT 0)
Are you able to see an endocrinologist to help you with the taper? They have a different perspective than GI or GP.

It may take a long time to taper but you will be able to do so. My husband was in same situation as you. He got down to 8 mg, and then started tapering .5 mg at a time -- every four weeks. Once he got down to 2.5 mg of prednisone he switched to hydrocortisone which is in your system for a shorter period of time so you can manage it better which should jumpstart the adrenal glands. It took over a year to be completely off, but for most people the adrenals do kick in on their own. He is in complete remission on Xeljanz after 4 years, and off the steroids for 2-1/2 and feeling totally fine and recovered. You will get there.
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