Adrenal -Cortisol Levels

[Bobbi17]

I am wondering if it is even possible to withdraw from steroids once you have been taking them for a long period of time. Everything I read says you will have withdrawal symptons and I am, but I don't know how you can tell if your adrenal glands are working again or not. Can anyone tell me? I also have hypothyroidism and have been diagnosed with an autoimmune problem. I think the disease would be better than the side effects of the steroids. I have been taking them for over 2 years and I am losing myhair, skin is very dry and bruises easily, I do not get over being ill easily, I have eye problems and now I am trying to gradually decrease my steriods with a Dr.'s help but I would like to know how much coryisol a person needs daily, does anyone have a clue? Thanks

[Bobbi17]

It wasn't my Dr. who suggested I get off the steroids, it was me. I think they are making me more sick. I am hoping the endo Dr. will take a more active roll in my health than the rest of the Dr.'s I've been to. I appreciate your help and I hope you don't quit doing what you do, you will never know how much it is appreciated from those who need someone to answer some questions when their so called Dr.'s won't even take the time. I shouldn't have been on these steroids for as long as I have, but not one of the Dr's seemed to care when I would tell them how long I had been taking them. I got upset one day during one app. with the pulmo Dr. and that is when he decided he needed to help me. Since then he has been doing his best, but I decided to call and endo. I go on the 20th and hope he will be better in helping me. Thanks again, you are much appreciated.

[rumpled]

The weight around the middle is the steroids and why, probably, the doc wants you off them. It is a side effect of the medication - it is called steroid induced Cushing's syndrome.

Hang in there - take tylenol or whatever with the approval or your doc to help you but you do have to get over the hump and eventually, you should feel better again.

[Bobbi17]

Thank you so much for your responses. Sometimes I feel as if I am doing this all on my own. No, the pulmo has given me anything for the anti-iinflammatory problem. Except my inhalers. I hate using them but they do help when I start wheezing. You are right when it comes to the pain all coming back, yuck yuck yuck. I have gained so much weight I think that is part of the hard breathing part. I have developed a spare tire around my middle and feel bloated most days. I think the pain is almost better than the way I feel on these steroids. If I had know it would be like this, I never would have taken them to begin with. Anyway, I do so appreciate you taking the time to answer me and at least I know what to expect and I will try the see saw thing to see what happens. Thank you again.

[rumpled]

If you are already in the 6mg range is that pred or HC? Weaning hurts. So you just have to expect it - but you have to be careful not to push it to the point of illness.

Some times it can help to see saw in that you can to 6,5,6,5,5,5, to get over a hump? So going up and down can help a lot.

If you read up on what causes an adrenal crisis - it is low sodium and in general, high potassium (I say in general as I know a lot of people including myself that go low in K as well) so adding salt when you feel bad may help.

Re breathing - the corticosteroid is an anti-inflammatory that was keeping your lungs in check - has the pulmo given you another non-steroidal drug instead? Going off any any drug like that brings back the inflammation and pain (for lung. joints, etc.).  That is the yuck all over.

If you go too fast, the adrenals can get mad and go into crisis - that is what needs to be avoided.

[Bobbi17]

I meant to say, I HAVEN'T been to and Endo. Dr. before now. I called one after reading some info on the internet and made an appointment.

[Bobbi17]

I have been on 10 mg for about 2 1/2 years. My pulmonary Dr. is trying to help me get off the steroids, no other Dr. seems to know what they are doig. I have had 2 Dr.'s tell me to "just cut the pill in half" and when I tried that, I got deathly ill. Now I am weaning off them by cutting off 1mg every 2 weeks. I am now on 6 mg and about 4 hours after taking my 6 mg, I can feel the "ill" feelings coming back. I don't get real bad, but it is hard to breathe and I feel yucky all over. It's hard to explain. You said it gets ore difficult the lower the dose, could you please try and explain why that would be a little more? I don't want to be a pest, but it would really help to know what to expect. I do go see a Endocrinologist excuse the spelling on the 20th. I have been to one before now and I am hoping they can help me.

[rumpled]

Every *body* differs and if you are weaning/withdrawing - you need to do it under supervision of a doctor.

The body needs about 20mg of hydrocortisone/5mg prednisone to have the adrenals fully suppressed - once you get below those levels, then the wean gets more difficult at times as that is when you are waking up the adrenals.

Rest, fluids, and taking the wean slowing can help. There are ways to wean such as going down slowly or alternating up and down a bit to move down if you are having problems.