Prednisone tapering

[IAmTheGlue]

So I've been on Prednisone for an entire year. So far so good I suppose. I have a few little side effects usually that aren't too bad. I tapered 20mg to 15 over the past 6 months. I dropped down to 10 mg last Friday and OMG.... I feel like a crazy person. Everything hurts. The glands in my neck feel swollen and painful. I had a complete mental breakdown, crying and everything before dinner. I know it is withdrawal.

So the question here is does it get better soon? I'm going to call my doctor in the morning and see what they say but for now, any advice?

[Bobbiesitzman]

I'm going through the same thing. I started on 60mg end of Jan 2018 went to 40mg May 20mg in July just went down to 15 mg last Friday. I have been on prednisone many other times in my life. You are not going crazy & yes it will get better but it will take some time. Keep the tissues handy & tell your loved ones to stay far away they may not like you much the next couple weeks. The pain gets worse, our bodys have not felt inflammation like we normally would. My son told me last time I got if prednisone I laughed, cried & screamed all in 30 seconds!!! Prednisone is a evil evil EVIL DRUG!!! I currently have 3 fractured ribs, 3 fractured vertebraes & a fractured humerus bone. Not looking forward to the pain. Hang in there it will get better. Just saw a endocrinologist he thinks my fractures are do to my prednisone use throughout my life.

[IAmTheGlue in reply to Bobbiesitzman]

Thank you. I guess I will just press on. I did have a dexascan in April and my bone density was still okay.

I'm sorry to hear you are having so much trouble though. Prednisone is a rough drug for sure. 😢

[Bobbiesitzman in reply to IAmTheGlue]

I promise it will get better. Do you also have AIH? Is that the reason your Dr put you in prednisone? Stay on top of your dexaascan. I was DX with PBC & AIH in Jan 2018 & Osteoporosis in March. My Tscore in my spine is .4-6 I'm only 52.

[IAmTheGlue in reply to Bobbiesitzman]

Yes and no. I was misdiagnosed as having PBC AIH overlap last year this time. She said it was very early, "pre-clinical". When my numbers were not improving and my Dr at IU was very nonchalant about the whole thing I came to the Mayo Clinic in Jacksonville FL for a second opinion in February 2018.

He began testing and said just by what he could see from my medical records I was either much further along than I had been told or there was another disease process going on. My husband did a corporate job transfer and we moved ourselves to Florida.

As it turns out, I am already in "early cirrhosis" and I actually have PBC PSC overlap. I was at the Mayo Clinic last week and he said not too much change from my imaging in April, my numbers are better (still high but better than they were) so I'm stable. for now.

So I got started on Prednisone for no reason.... I don't actually need to be taking it. And I hate it. I've not had too much trouble with it. I'm shaky and my vision gets bleary but compared to the side effects some people get it's been a walk in the park.

I'm sorry about your osteoporosis. 😢 I know Prednisone is awful for that.

[Bobbiesitzman in reply to IAmTheGlue]

I'm glad you have been properly diagnosed. Sorry you had to go on prednisone for no reason. I'm glad you didn't have a lot of the horrible side effects that come with it. Good luck with your PBC & PSC.

[IAmTheGlue in reply to Bobbiesitzman]

Thanks 🌸

[DRK1960 in reply to IAmTheGlue]

Will you be able to taper off of the prednisone now?

[DRK1960 in reply to IAmTheGlue]

I read your post again and see that you’re already tapering off of the prednisone. I hope you feel better soon.

[Becca75]

I was on it for 2 years - was supposed to be for life - but it turns out after two years - I was misdiagnosed with AIH so I was able to stop prednisone - by that time I was down to 5mg/day. Anything under 7.5 mg doesn't have side effects just FYI

It's totally normal for tapering prednisone to have emotional reactions. Prednisone affects your adrenal glands which is highly responsible for your hormones. Take it all in stride - it should get better

[IAmTheGlue in reply to Becca75]

Thanks, that is good to know! 🌻 I'm glad that you were able to get off of it!

[Becca75 in reply to IAmTheGlue]

me too - although I'm still working through my issues with taking something I didn't need for two years that changed my life - the weight gain in particular.

I know logically, I'd rather be treated for something they think I have but Prednisone is such a potent awful (but effective) drug.

I'm glad that I was mis diagnosed because I don't want to be on that for the rest of my life (which was the treatment plan)

[JaneAnderson1966]

Sorry to hear things are rough at the moment. I am still suffering from continuous aches and pains after tapering off pred in the middle of May. I was so worried that I had something else wrong that I was tested for RA and also had bone scan and thyroid tests (all clear). I am due to see my Gastro in a couple of weeks time and will mention it again to him. From what I gather, steroid withdrawal can result in joint pains etc. Whilst I have almost continual aches (worse when a get up in the morning and when I have been sedentary for a while) they aren't so severe they reduce me to tears or stop my daily routine but I do wonder if I will always feel like this. I have started taking turmeric capsules recently and will let you know in due course whether or not they have helped with the pain.

Hope you are soon feeling better and hang on in there.

Jane

[mjk98]

Call your doctor I had the worst experience with prednisone tapering I will never take that drug again regardless because the side effects are horrible and it only helps while you're taking it and then you get off of it and you're blood tests go Sky High good luck

[SunnyXXOO]

Shouldn’t withdraw prednisone unless taper is wrong, have to be very careful. Contact MD and explain.

Can do a lot of damage if steroids.

SunnyXXOO