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Posted 11/7/2016 4:36 PM (GMT 0)
So it's been 2.5 weeks since I've been completely pred free after about a year of pred use of some dose.

Question: Can withdrawal symptoms last this long? I still get real cold a good bit and have a crazy pulse every now and then after just simple tasks as well as feeling exhausted. First thing in the am when I get out of bed it's probably around 150-160 before it slows down. A bit concerning. I do go to the gym again to try to get my circulatory system working better again ( was able to bike 5 miles in 20 mins the other day and pulse never went above 160, pretty weird).

If this isn't withdrawal anymore, what can I do to fix it besides going back on pred and a slower taper....? I really don't want to take that anymore.

Thanks.
Posted 11/7/2016 4:59 PM (GMT 0)
It is withdrawal, the cold issue definitely from the withdrawal and I'm sure that the other stuff is from Pred too.

You probably have to go back on a steroid (doesn't have to be Pred) and taper down slower. There are other steroids that give the adrenal glad what it needs but doesn't have the same side effects as pred. Your Gi should be able to help you or refer you to an endocrinologist who can.
Posted 11/7/2016 5:11 PM (GMT 0)

ks1905 said...
It is withdrawal, the cold issue definitely from the withdrawal and I'm sure that the other stuff is from Pred too.

You probably have to go back on a steroid (doesn't have to be Pred) and taper down slower. There are other steroids that give the adrenal glad what it needs but doesn't have the same side effects as pred. Your Gi should be able to help you or refer you to an endocrinologist who can.

What if I don't? Will it eventually go away?
Posted 11/7/2016 5:17 PM (GMT 0)
When prednisone withdrawal doesn't go away it is usually suggestive that your adrenal system hasn't woke up and isn't producing cortisol at normal levels within your body. An endocrinologist can assess and recommend a treatment, should your withdrawal not go away on it's own. Prednisone is chemically similar to cortisol and puts your adrenal system to sleep, and a slow, careful taper normally wakes up the adrenal system and resumes cortisol production. Problems can occur though...

Usually withdrawl includes body aches, bad fatigue and other like symptoms. Experiencing any of those too?
Posted 11/7/2016 5:29 PM (GMT 0)

iPoop said...
When prednisone withdrawal doesn't go away it is usually suggestive that your adrenal system hasn't woke up and isn't producing cortisol at normal levels within your body. An endocrinologist can assess and recommend a treatment, should your withdrawal not go away on it's own. Prednisone is chemically similar to cortisol and puts your adrenal system to sleep, and a slow, careful taper normally wakes up the adrenal system and resumes cortisol production. Problems can occur though...

Usually withdrawl includes body aches, bad fatigue and other like symptoms. Experiencing any of those too?

Just some restlessness sometimes when I'm sitting or laying. can't get comfortable. I'm just sick of seeing doctors don't want to go to another one. Maybe I'll ask about it at my second surgery if it isn't better by then.
Posted 11/7/2016 5:49 PM (GMT 0)
You can certainly try to wait it out as two weeks isn't that long that it cannot happen on its own. Alternatively, you can try to coax the adrenals awake yourself with a small, daily alternating dose of pred (up dose, lower dose, up dose, etc.) for a week or so back down to zero. An endocrinologist might use hydrocortisone instead of prednisone and a similar technique.
Posted 11/7/2016 7:15 PM (GMT 0)

Bull101 said...

iPoop said...
When prednisone withdrawal doesn't go away it is usually suggestive that your adrenal system hasn't woke up and isn't producing cortisol at normal levels within your body. An endocrinologist can assess and recommend a treatment, should your withdrawal not go away on it's own. Prednisone is chemically similar to cortisol and puts your adrenal system to sleep, and a slow, careful taper normally wakes up the adrenal system and resumes cortisol production. Problems can occur though...

Usually withdrawl includes body aches, bad fatigue and other like symptoms. Experiencing any of those too?

Just some restlessness sometimes when I'm sitting or laying. can't get comfortable. I'm just sick of seeing doctors don't want to go to another one. Maybe I'll ask about it at my second surgery if it isn't better by then.

It's an easy fix and you'll feel better right away. Otherwise you may suffer with these symptoms for a while until your body takes over but that could be a while.
Posted 11/8/2016 2:10 AM (GMT 0)
My husband ended up seeing endocrinologist after suffering pretty tough prednisone withdrawal symptoms (shortness of breath, spaciness, super exhaustion, racing hearbeat). He thought he had done a slow taper, but after being on prednisone for 3 years, it apparently wasn't slow enough. Endocrinologist will tell you that with a proper taper you will have no symptoms. But it can take a long time. They would probably put you on hydrocortisone, which is shorter acting than prednisone. You can manage the dosage better to mimic what your adrenals glands do, and it makes it easier to measure through bloodwork to what extent your adrenals are working.

My husband ended up back on prednisone because he developed neuropathy and he wanted to deal with that. He is now tapering down one milligram every 6 weeks and probably will switch over to hydrocortisone when he is down to 5 mg. In our experience, GIs really don't know much about prednisone tapering for patients who have been on steroids for a long time.

If symptoms continue it is worthwhile seeing an endocrinologist. It may be worth it to make an appointment now, just because it can take a few weeks.
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