Prednisone tapering is challenging. What does remission feel like?

@stackyboy1 I understand....I was on high doses of pred along with Actemra for GCA.....I gained, for a gal who was a size 14-16, I became the 3X queen.
Are you ready...over the last 10 months, I've lost 90 pounds, and it will fall off you too. I do not eat ice cream and avoid almost anything white. That just makes it easy to keep track of my intake.
I am better and better all the time. It is slow, and I don't think my legs will ever be as strong..I just haven't been that active. Yes, you will feel more normal, as you say. It's tough, it's slow...but it happens. Keep the faith; you are on the right track, for sure!💞

In my humble opinion.....you cannot 'hurry health'. What makes the body respond favorably to the taper and management of the disease...is the fact that you are doing a slow taper. In this matter...slow is best and give your body a chance to respond the way you hope. More good days are coming!
I've been trying to taper for three years...and I'm now at 3 mg and avoided any flares. I'm having some great days!! Just remember, the disease is the boss really...we just manage it. Good for you!!💞

Thank you

@stackyboy1 You are more than welcome. That is my whole purpose in being on the forums...is to let people know (like myself) that patience can be a real friend. It will come to a resolution but the secret is not getting off the pred ...it is going slowly, so remission comes and stays. I figure...if it comes back I'll be better equipped to handle it!😉💞

I was diagnosed with PMR in April 2022. Started on 15mg of Prednisone and after 4 days I was pain free.
I've been pain free ever since and have slowly tapered to the point where I am on my last month at 1mg.
I have to say that this forum has been my lifeline as I know no one in my situation. All of the comments on this site have made me a smarter person! I also recommended this site to my doctor.
Once I stop the Prednisone I hope to never have a flare up - wishful thinking I guess. But my question is if I do have a flare up, how do you know what dosage to start taking again? I know that in the process of tapering if I had issues I just upped my dosage to where I was pain free. But when not on Prednisone, where do you start?
My doctor has prescribed enough Prednisone so I have a stash that I can start up right away. But again, how do you know when and how much to start?

Hi @lawhoeburg, Connect was really helpful for me also when I was tapering off of prednisone my 2nd time around with PMR. I don't think it's wishful thinking for hoping to never have a flare up again of PMR. I had 6 years of remission after my first occurrence of PMR and I'm now going on 5+ years of remission from my second time around with PMR. I'm definitely hoping it never rears it's ugly head again! I feel a little better this time around even though I just turned 80. Since my first bout of PMR, I started making some lifestyle changes, lost some weight, eating healthier with less inflammatory foods, exercising daily when I can, and eliminating processed foods and greatly reducing the amount of sugar intake.

I think I would check with a pharmacist if you plan to keep a stash around after your PMR goes into remission. Here is some information on expiration dates that might be helpful.
--- Drug expiry debate: the myth and the reality: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7040264/

This is such a difficult issue. I still have a prednisone stash that I haven't used in years. I have every dose strength 1 -5 -10 and 20 mg tablets. All of my bottles have a dispense date in 2019 and a discard date in 2020. I even have hydrocortisone with instructions "take as directed in case of emergency." but that has expired without any emergency. I guess I will throw it all away and put it all behind me.

I just looked at 2 unopened boxes of Humira injections. I was told to stop taking Humira when supplies of Actemra improved. The expiration date on those boxes is 06/2023. I didn't pay anything for them but I know what each carton costs.
https://www.drugs.com/medical-answers/humira-cost-without-insurance-3537595/
I don't feel comfortable giving them to anyone and I wouldn't sell them either. The pharmacy won't take them back. Humira didn't really work well for me but I guess that I will keep the cartons in the refrigerator awhile longer.

My stash of prednisone is gone. I don't have any Actemra injections in the refrigerator. I don't take anything for pain although I still have some pain that is tolerable.

Pain control now depends on how well a monthly infusion of Actemra works but I'm told Actemra isn't a pain medication. I thought tapering down to zero mg of prednisone was a leap of faith but this even tops that.

My journey with PMR sounds like yours. Although I’ve commented before I’ll repeat it for you in case it helps. I am now 75 and was diagnosed in early 2021. I had immediate relief from Prednisone and finished tapering on January 31st 2022. The residual symptoms lasted a while such as leg weakness and butt pain but I’m now symptom free and have good muscle strength back. One day I just realised it was gone. I’ve got a Prednisone stash and if symptoms recur will start at the lowest dose immediately and increase if required . It can take weeks to get medical help where I live. Hopefully the Prednisone will expire and not be needed! These forums are a lifeline and I still read it every day. Good luck to you.

If you don't feel comfortable giving them to anyone & your pharmacy won't take them back try an animal charity. Many times they will take them for the animals.
If not find a RX disposal box in your community.