Tapering pain

I started at 10mg and started feeling some discomfort at 6mg. I stuck it out for a few days because the soreness wasn’t too bad when I took Tylenol. Then intense fatigue set in and I had dizziness. I increased back to 7.5 . It seems to help but it’s only been a few days. I’m not sure what to expect next. I took the grin and bear it approach but when I had other symptoms that were not previously present, I didn’t hesitate to increase.

What you have described sounds like a PMR flare. The recommendation is to go back to the dose where you didn't have pain. Something more than 10 mg but not all the way back to 30 mg. The idea is to find the "lowest effective dose" of prednisone.

@farnhamlaf1, I think Mike has the right approach for tapering by not going all the way back to the starting dose but back to the dose where you didn't have pain. It might help if you keep a daily log with your level of pain when you get up in the morning and your prednisone dose for the day. That way you have some history to look back on if you have a flair. Do you keep a daily log?

Your symptoms sound more like what I experienced when I tapered down to 7 mg. The intense fatigue, dizziness and other symptoms that were not previously present all sound very familiar to me. An endocrinologist said my symptoms were consistent with adrenal insufficiency from long term Prednisone use.
https://pmc.ncbi.nlm.nih.gov/articles/PMC10257969/
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Unfortunately, the way to get over this hump is to resist the urge to increase your Prednisone dose. An endocrinologist was more helpful to me than my rheumatologist. However, my rheumatologist provided me with another medication that kept PMR in check while my Prednisone dose was reduced. The other medication didn't suppress my adrenal function.

It was still a long process to taper off Prednisone. After I tapered to a low dose of Prednisone, I needed to stay on 3 mg of Prednisone for more than 6 months. That amount of time was necessary for me to overcome adrenal insufficiency. The amount of time needed is dependent on many factors and varies from person to person. However, the goal for me was not to increase my Prednisone dose unless it was absolutely necessary. Easier said that done!

The newer medication didn't suppress my adrenal function while keeping PMR controlled. Staying on 3 mg of prednisone replaced the shortfall of cortisol. When my adrenals were able to produce more cortisol and my cortisol level improved, it was easy to discontinue Prednisone but not until that happened. My adrenals needed time and time was possible as long as I stayed on the other medication that controlled PMR.

I do keep a log of tapering thanks. I guess 12.5mg was a good vintage. I see my Rumey this week.Another person mentioned Glucocorticoid

What was the "other" medication your rheumatologist prescribed? The three times I've been able to get down to 5.5 or 6mg the pain and stiffness were pretty bad. I jumped to 12.5mg for a couple of days to quickly knock out the pain and then went back to 8mg and started my .5mg taper every three weeks all over again. My rheumatologist said that I was tapering too quickly and to taper every 6-8 weeks (after previously being told I was tapering to slowly!) . I see my endocrinologist next week and plan on having a good conversation with her.

Thanks, Terry

Thank you so much for the detailed information, it’s extremely helpful. I feel much better after 3 days at 7.5 but anxious to get back to 6. Do you mind sharing the name of the newer med that you mentioned?

What is the other Medication that you took along with Prednisone?

@terrym
Why do you see an endocrinologist?

I was originally referred to an endocrinologist when I was still on 10 mg. The endocrinologist said there wasn't much she could do if I still needed that much Prednisone. She said if I could ever get to 3 mg that I needed to come back to see her.

@susanalka
A year later, my rheumatiogist wanted me to try Actemra (tocilizumab). Before this time, I mostly stayed around 10 mg. I would have an "inevitable flare" at 7 mg.

After Actemra was started, I tapered by 1 mg per month to 7 mg. I decided to get the "inevitable flare" over with so I tapered by 1 mg per week to 3 mg.

All those symptoms of extreme fatigue, dizzyness and generalized aches and pains started to happen but nothing remotely like a PMR flare. My cortisol level was "rather low" so I was instructed to stay on 3 mg of Prednisone until I could be seen by an endocrinologist. I saw the same endocrinologist I had seen previously. She was surprised but "somewhat optimistic" that I could get off Prednisone.

It took another year but I eventually took my last dose of Prednisone about 4 years ago. I still do a monthly Actemra infusion to control PMR. My symptoms of adrenal insufficiency gradually disappeared. I still see an endocrinologist for "metabolic abnormalities" like insulin resistance and other things. The endocrinologist encourages diet and exercise the most.

Kevzara is FDA approved for PMR and is another medication similar to Actemra.

Actemra is only FDA approved for GCA. There is another medication called Rinvog that was recently FDA approved for GCA.

All of the above medications are called biologic DMARDs. There are other medications like methotrexate and leflunomide that are called conventional DMARDs.

"Conventional and biologic DMARDs are both used to treat inflammatory conditions like rheumatoid arthritis, but they differ in how they target the immune system. Conventional DMARDs suppress the overall immune response, while biologics target specific parts of the immune system, often by blocking inflammatory proteins. Biologics are generally more effective but can have a higher risk of side effects."

My rheumatologists believes that either conventional or biologic DMARDs have fewer side effects than long term Prednisone. I don't have any serious side effects from Actemra after more than 6 years since my first dose.

Thanks to genetics (my father and maternal grandmother) I have type 2 diabetes, so I've been going to endocrinologist for about 10 years.