Re: Help it's a long one Thanks!!! -- Steroid Warning Network

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Date Posted: 08:54:58 05/31/07 Thu
Author: Karen (praying)
Subject: Re: Help it's a long one Thanks!!!
In reply to: ma 's message, "Help it's a long one Thanks!!!" on 00:43:17 05/31/07 Thu

Dear Ma:

I am new here, but have been on steriods since last May 2006. I have a rare lung disease that was probably started from a bad virus I got in the winter. Anyways...supposedly steriods were the only way to help me. In fairness to the doctor, I do think they helped the acuteness of disease, but I got left on the high dose waaaay too long. They have ravaged my body too. I am little bitty thing and have lost tons of weight, I am a mental nut case - anxiety/depression/mood swings. I have blood sugar issues, high cholesterol, and osteoporosis. I had the acne, excess hair growth, and the moon face. All the side effects I had, but the weight gain. I look like a skeleton and feel like one too. I started weaning in January because I really feel as if the steriods are not helping me at all anymore - just destroying my body. I am finally down to 8mg from 24mg of medrol. Medrol is the same as prednisone (5 mg pred. = 4mg medrol). As I have weaned I have been losing hair, I am nauseated all the time, I feel shaky and weak, and my heart just races out of control for no reason. Thanks to Ivy I am finally figuring out that these are withdrawal symptoms. So..long story short - I feel your pain too.

I am so sorry that you are going through all this. I just don't think the doctors really know how hard it is to reduce. They say, "just go down 2 mg this week and 2 more next week." Some people just can't do that. They never believe you when you tell them it's the drugs. It could "never" be their drugs?!?! It's always all in your head. I think a lot of us have been through that whole routine. I just feel so bad for you that you can't get the help you need. It's bad enough that you don't feel well, but to have the hospital not respond to your needs is down right scary! I will be praying for you.

I too feel guilty and a burden to my family, but I hear something this morning that might help. It honors God for people to help one another. It honors Him for you to let people help you. He may need you to let someone help you so that He can complete His plan for that person. Don't feel as if you are burdening the people that love you. God loves you and so do they!

On to your question about every other day dosing. I have a friend that had a really hard time reducing. When she got to 10mgs. She would do every other day dosing going down a mg. Until she felt comfortable and then she would stay at the lower dose. She would then wait a few weeks and do it again from the lower dose. It has taken her a long time to get down, but she is now at 3 mgs and doing okay. You wouldn't think 3 mgs would affect you, but for her it still does. So see everyone is different. I would try it if I were you. I might try that the next time I reduce.

I hope this helps. Just know that I am praying for you!

Karen

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