Would you share your experience with a successful Prednisone taper?

Hi @staylorrn2000
So sorry the prednisone is still giving you hell. I don’t have a successful taper yet but wanted you to know you were not alone. My Pulmonologist at Mayo says there isn’t a standard taper for prednisone so every Dr does it a different way. I start Nucala today so I am looking to start a taper in January - I’ll taper down a very small amount every two weeks until I get to 1 mg. Definitely keep us all posted if you find a better way!

Hang in there - it’s a horrible drug to be on and get off.

Thank you for your reply. My Endocrinologist said she will order 1 mg tabs so I can start a slow taper in smaller increments than doing the 5 mg/2.5mg every other day for a month then 2.5 daily for a month then stop as she originally ordered. I haven’t yet seen what the taper she is going to order in 1mg increments but I’m anxious for the pharmacy to let me know it’s ready so I can get started tomorrow on the new taper. I have never wanted off of a medication so badly in my life. This stuff is horrendous. Wishing you luck with your tapper!

Can you tell me what side effects are the reason behind your tapering off prednisone ?

Would really appreciate knowing, as prednisone is prescribed for a number of different medical issues. My son is currently having an issue with it. He is not being treated for a lung problem.

Thank you.

Good morning. A quick note about how I ended up where I am now. Originally put on multiple “bursts” for different reasons, including bronchitis, asthma flare, meta pneumo virus, and finally acute sinusitis that turned into chronic sinusitis.
I was always able to get off of prednisone by tapering however each time it became increasingly difficult to get off of it. This last time I have been put back on it because they thought I was having adrenal insufficiency from having been on so many courses of it. Then I had a cortisol level and a ACTH level drawn which apparently were at acceptable levels so I was told to stop it completely. The symptoms I had when decreased from 5 mg to 2.5 mg daily and then taken off completely were horrible, dizziness, nausea, stomach pain, constant cold clammy sweats with pale skin, extreme fatigue and headaches.
The symptoms I have while on the prednisone are horrible too, I can’t sleep, my heart races, horrible reflux, shaky, and worst of all my emotions are all over the place, I cry for no reason, I’m anxious and irritable, and now my hair is falling out the last 3 weeks. I have never wanted off of a medication so badly in my life. The message from my endocrinologist in response to me telling her I want off of it as quickly as possible but safely, don’t even make sense to me as she said, “you can stop it for a few days and see how you feel” or “I will prescribe 1 mg tablets and you can wean off more slowly.”
She didn’t follow through and send the prescription for the 1mg tabs that I told her yes I wanted to try, so I have been taking the 2.5 mgs for the past several days. As of this morning I couldn’t take the side effects of cutting back from 5 mg to 2.5 so I took 5 mg this morning and will hopefully get the prescription for the 1 mg tablets so I can start the slower tapper by Tuesday. I know this is a long winded message but I wanted to add some content to the journey I’ve been on in hopes of helping someone else maybe AVOID the drug if at all possible. It is definitely hell being on steroids and hell getting off of them. May I ask what dose your son is on, how long he’s been on it, has he tried to come off of it, and what his side effects are while taking it and/or trying to come off of it?

To staylorm2000…. Thanks so much for your explanation. I will get back to you as soon as I can contact my son to get an accurate answer to your question. I am hoping your condition will improve soon.

Thank you, and I hope your son can get his issues with Prednisone resolved.

@lluth412 , my Endocrinologist has just order a 4 month taper, which blows me away! 4 mgs daily for a month then 3mgs daily for a month then 2 mgs daily for a month then 1 mg daily for a month. This seems like an excessively long time to ween off of 5mg. May I ask what exactly your taper is going to be?

I am not sure what my taper will be - this morning I went from 20 mg to 15 mg and so far just a headache. My problem is when I get down to 10 mg. I won’t know what the taper will be until I know the Nucala is working and pulmonologist said there’s a chance I may never get off of 5 mg (yuck). I have an appt Jan 10 so let me ask what they think about a slow taper and what they are considering for me and I’ll let you know.

How long have you been on prednisone? I think that the longer you take it, the slower you have to taper.

Lisa

Hi Lisa. I’ve been on multiple bursts over the past year but I’ve been on it pretty much regularly since August at one dose or another. When I finally weaned off the last time in October then I went on fluticasone nasal spray and Dulera which. Obtains a steroid. After stopping both of those is when all of the steroid withdrawal side effects started at their worst and have continued if I take anything less than 5mg, and actually even at that dose I have some symptoms. It was at 10 mg of prednisone that I had no withdrawal type symptoms.