How did you cope with the side effects tapering off prednisone?

I was diagnosed with PMR 3 years ago. I started at 40mg of prednisone. Then slowly tapered down to 5mg. After about 2years+
at 5 my rheumatologist wants
me to slowly taper down to zero. I’m also on hydroxycloriquine.
It’s been almost 3 weeks at 4mg. I’m miserable. Body ache, and a mild
nausea. My doctor told me it would be rough, and to ride it out.
Is the sick feeling normal? How long does this last? I’m ready to throw
in the towel and swallow a handful of prednisone.

Yikes, have you asked about lowering the dose of hydroxycloriquine? Obviously you can't stop taking it abruptly.
Perhaps ask them to call in a prescription for the nausea. I take ondansetron (aka Zofran) during a bad diverticulitis flare. That'a often given to chemo patients. The over the counter anti-nausea I've found effective is Nauzene. You shouldn't be miserable while dealing with this.

There are unfortunate problems that surface when people get into the neighborhood of 5 mg of prednisone after long term use. Prednisone supplies cortisol but suppresses your adrenal function. Your cortisol level is probably low at this stage of tapering. Your doctor is correct because it will be rough going at this stage because of adrenal insufficiency.
https://www.endocrine-abstracts.org/ea/0056/ea0056p44
The only way to get past this stage is to continue to taper slowly but some people are unable to successfully taper off prednisone completely.

That sick feeling you describe and overwhelming fatigue were my symptoms when my adrenals weren't producing enough cortisol. I also had muscle aches and pains but they were nothing like the pain I had when PMR was originally diagnosed.

Adrenal suppression is why we are told to taper off prednisone slowly and not stop it abruptly. I had adrenal insufficiency when I tried to taper off prednisone without a backup medication to help me control my inflammation levels.

Cortisol is a hormone that "regulates inflammation." . The backup medication that helped me was Actemra which kept inflammation in check while I tapered off prednisone. Actemra doesn't suppress my adrenal glands like prednisone does. There are other "steroid sparing" medications that may help. Hydroxycloriquine is one of them.

Fortunately, my adrenal suppression wasn't permanent and my cortisol level slowly returned to an "adquate level for normal days." My endocrinologist said I was still at risk on abnormally stressful days. It took about a year for me to start feeling better and my cortisol levels returned to normal.

Adrenal insufficiency and suppression of the HPA was hard for me to overcome. I took prednisone daily at moderately high doses for more than 12 years for PMR and other autoimmune problems. It is a complicated problem as the following link suggests ...

Good luck ... not everyone has a big problem. However, everyone will experience at least some problems after long term corticosteroid use.

Hi @johnarbaugh, You will notice that we moved your post to an existing discussion on tapering off of prednisone so that you can meet other members like @vellen @dadcue @suetex @sued70 and others to learn what they have shared. If you click the link below it will take you to the top of the discussion where you can read what other members have shared.
--- How did you cope with the side effects tapering off prednisone?: https://connect.mayoclinic.org/discussion/taper-side-effects/

I showed my bruised arms to my dermatologist and asked "Is there anything I can do to counter the effect of prednisone thinning my skin?" He looked at me and said, "Nope." I'm getting used to touch-bruises and gashes on my legs but I don't like it. Presently on 8 mg prednisone.

This is so helpful, thanks for posting it.

I am the same way and have to be careful playing with the cats. Also the other day I was down my front metal stairs and turned, bumping my arm against the end of the railing. I looked at it instinctively and was surprised it was bleeding. I had scraped a small triangle patch of skin off. Crazy. Prior to that, I banged the back of my hand against a wooden chair. It healed but I have a bump there now. ugh.
I'm so clumsy and we need to be careful.

I never had a big problem with bruising and thin skin while on prednisone. I did have patches of skin so thin it was translucent. I had to cover those areas because the sun would burn right through my skin.

There wasn't much anyone could do except encourage me to taper off prednisone. I appreciated their concern for the areas of skin on the outside that were visible. I didn't like it when they said the same thing was happening on the inside where it can't be seen.

I'm off prednisone now and the translucent areas of skin are now opaque white and looks like scar tissue.

I wish you good luck with tapering off prednisone. It was so easy taking prednisone when the pain was bad. All I had to do was increase my dose and pain relief was almost instantaneous.

The hard part starts to happen when you get down to the physiological dose of prednisone.

"Tapering is generally based on provider, patient preference, and tolerance of the taper. Work closely with specialists (eg, rheumatology, endocrinology) to ensure unified goals for the patient."

There are lots of creams, talk to your dermatolagist

I had to go on a blood thinner, Plavix, while on 12 mg of Prednisone. I look like I have been in a fight!