Rowejack, DO NOT TRY THAT!!!

You could put yourself into a myasthenic crisis or an adrenal crisis. Both are potentially life-threatening!!!

Please call and speak to your doctor first.

I know that coming off of Pred is hard, but you want to do it slowly.

Please, guys, do not play with these meds. You can have rebound effects, especially with Pred.

BTW, alternating days (i.e., 30/0) was NOT MY idea! It's what some doctors do. And I am not a doctor!!!


Annie

Annie .
You say don't try that ... I had come down slowly over eight months from 60 MG to 2.5 MG ( per my neuro's advice ) and had problems and now I 'm back up to 15 MG daily. I was going to alternate 15 MG one day and zero the next, per your comment about alternating ......I believe you're now saying do not alternate ...Is that correct ...?
Jack

I came off high dose, long term pred and I did it VERY slowly. It was BRUTAL. In fact, the taper was almost as long as the course and I can say it was really hard for me. It was the first time I could understand what an addict goes thru as I felt physiological cravings. And with each reduction I felt like I'd been slammed by a bus.

Unfortunately all my sx came back 10 fold after the pred. Now it's onto what's next. Tried IVIG and not sure that's the answer due to some persisting hives.

Open to any suggestions otherwise. the de said cellcept, rituxan, imuran or methotrexate:

The above is what I said. Where in that sentence does it say that I recommend doing that?!!! I'm not a doctor, I can't and won't recommend anything when it comes to your care! I might bring up ideas or thoughts, but that is not the same thing.

SOME doctors BEGIN . . . meaning that when they begin treatment with Pred.

Once you have been on daily Pred for a long time, your adrenals are already not "working" because Pred is doing their job for them.

So, at that point, going every other day to zero can be dangerous.

If you drop to zero, you can have an adrenal crisis. Some symptoms are extreme fatigue, sweating, feeling dizzy or disoriented, much weaker, etc. It can absolutely kill you.

You can also have a myasthenic crisis.

Prednisone is a powerful drug. That's one reason why I often caution people to really think it through before taking it. And tell people to read the prescribing information.

TALK TO YOUR PRESCRIBING DOCTOR before you make any changes in that drug—or other drugs.

Caution: Some doctors don't "get" what can happen if they drop a dose amount too quickly. One of my dear friends went into an adrenal crisis when they did that. Luckily, she was okay. It can happen with just one day's dose being dropped, either lower or to zero.

Needananswer, Talk to your doctor. You might be able to adjunct therapies while on steroids to help wean you off of it. I am NOT recommending this (because I'm not a doctor and wouldn't even if I were), but inhaled steroids are an off label use for weaning.

Geez, guys, I know Pred is beyond frustrating to be on, but don't put yourself in danger while going off of it!

Annie

To clarify, Annie, I've been off ALL pred for a long time. I, too, advocate for the slow and steady wean for the safest outcome. I was just commenting that it was brutal!

I'm just deciding w dr which is best next step. Wouldn't it be nice if these decisions weren't even on our radar!

Be well all

The persisting hives might've been from the brand of IVIG you had. Did they try a different brand? Did you pre-medicate (and post-medicate)?

Thanks for clarifying that. I admit that I didn't read your post very clearly because I was a bit upset.

Annie

I agree with the post saying not to taper off the pred. without doctor. Coming off is difficult under the best of circumstances. Don't change doses until you talk to your doctor. ginnie