Prednisone tapering is challenging. What does remission feel like?

HealthUnlocked (from the UK) is a good resource. It’s often recommended on this site. The “pros” on HU say the ACTH test for possible adrenal function is unreliable until you are under 5 mg, even 3. So don’t lose heart! I’m having a good day today, so ever hopeful.

I was diagnosed with GCA in 2019....and it IS a roller coaster. Sometimes it is just our bodies and other times I have found when I feel really good and do more then I am whipped. Sooner or later all those hills and valleys even out. I'm presently on 3 mg and Actemra. Since I plan a trip to my granddaughter's graduation, I'm going to hold at 3mg along with Actemra, until I return.
I also have neuropathy and it isn't getting any better...it is a beast that we have to just do our best with, slowly.💞

It took my almost 2.5 years to get to single digits of prednisone along with Actemra. So...I believe in slow tapering, personally. Once I hit 10 mg, my rheumy said .5 mg every month. To me remission is not being worse. I do think it pays to listen to your body because when it says it is tired, it is. My best to you!💞

Queenie, I'm 76 and happy to report that my adrenals seem to have remembered what they are supposed to do. It has taken 19 months of slow titration and I am down to 1/2 mg of Prednisone a day with plans to drop it entirely in a week. Don't give up hope--I suddenly realized that at 1 mg I was feeling energetic and well again, and my doctor just told me that if you feel that way and you are taking less than 5 mg a day, it means that your adrenals are working again!

Yeah!!!! That is great. I'm going to be on the lookout for some extra energy.💞

Thanks so much for your response @karinaph. I have had a difficult time getting below 17.5. Every time I have gotten to 15, my hip & shoulder pain has come back hard and I have had to increase to 17.5. I also have Degenerative disc disease and had my nerves burned out in my lumbar spine last year. It apparently worked much better than we realized but the pain has returned with a vengeance over the past month. I am trying to have a repeat scheduled by the end of the month so that hopefully back pain will be quiet again. I am also scheduled to start on Kevzara (the new medication approved to treat PMR) in the coming week and hopefully that will help me to reduce the prednisone. Very thankful for this group and the prospective that I get from others so thanks so much for taking the time to share your journey. I hope that we are all on our way to remission soon. Blessings!

Your experience gives me hope that my adrenals might someday also awaken. If not I will manage with the help of my excellent rheumatologist and endocrinologist whom I will see for the first time in June. I am so happy for you that you are feeling well and energetic again. May we all reach that point in our long journey through PMR and GCA.

I have had pmr for almost a year hopefully I will go in remission by year two. I have gained 15 lbs while on prednisone. Will I loose the added weight after I'm done taking prednisone and how long will it take me to get back to usual weight. Very depressed about not feeling normal and the weight gain. Please tell me that I will feel better in time.

Time will help but there are possible lifestyle changes you can make that will also help.
--- Can Diet Affect Symptoms of Polymyalgia Rheumatica?: https://www.healthline.com/health/polymyalgia-rheumatica-diet

What does remission feel like???

For me it is being off prednisone first and foremost. The next part of remission is feeling like an older version of me but one that correlates approximately with my age. It isn't how I felt when PMR was first diagnosed because that was 15 years ago.

The worst part of PMR was feeling like I had suddenly aged. I would tell my rheumatologist that I felt like I was 100 years old when I was only 60 years old. If I really wanted to make a point, I would say PMR made me feel like I was 150 years old and rigor mortis was setting in.

The pain was horrible in the beginning but as time wore on it was more about muscle fatigue and feeling absolutely exhausted all the time. I'm convinced that the sheer exhaustion was more about adrenal insufficiency.

I would have painful flares at lower doses of prednisone but I think that was also related to adrenal insufficiency. My inflammatory markers were such that inflammation was always present. Prednisone helped but it didn't stop the inflammation. Remission is defined as minimal disease activity. When my chronic inflammation wasn’t stopped or well regulated, I was prone to painful flares.

Too much prednisone suppresses the cortisol that the adrenals produce. This particular side effect of prednisone made it nearly impossible for my body to regulate inflammation which is a significant part of what cortisol does.

The following case study illustrates how adrenal insufficiency can be mistaken for flares of PMR. Also note that adrenal insufficiency responds rapidly to prednisone too.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3070320/#:~:text=However%2C%20although%20not%20fully%20recognised,in%20the%20literature%20to%20date.
Notice that PMR and GCA were on the list of potential causes of his symptoms.

I was able to get off prednisone when a biologic was prescribed for PMR The events that followed still makes my head spin. I was able to rapidly reduce my prednisone dose from 10 mg to 3 mg. An endocrinologist stepped in and diagnosed adrenal insufficiency caused by long term use of prednisone. When I told the endocrinologist that I had been on moderately high doses of prednisone for more than 12 years for PMR, the endocrinologist was surprised that I had any adrenal function left.

The treatment for secondary adrenal insufficiency is less prednisone in order to give the adrenals a chance to recover. Otherwise the treatment is a small maintenance dose of prednisone of preferably hydrocortisone if the adrenals are unable to recover.

The problem with poor adrenal function is that it can be easily confused with PMR symptoms. The cortisol the body produces is tightly regulated by the HPA axis. Too much cortisol or not enough cortisol causes problems in both directions. The prednisone we take is a poor substitute for the cortisol our bodies naturally produce.

It takes a long time for PMR to go into remission. . All I know is remission is possible and I feel infinitely better now that I’m off prednisone. I still take a biologic for PMR so technically I’m not in remission yet. However, my rheumatologist said PMR was "probably in remission" in her documentation of a recent visit I had.