Prednisone cumulative dose in PMR

It would be safe to say that my cumulative dose over my 13 years of PMR treatment with daily Prednisone was "massive." That doesn't count the prior 20 years of intermittent high doses of Prednisone to treat other autoimmune conditions.

I didn't have too many side effects during my 20 years of short term Prednisone use prior to PMR. I usually took 60-100 mg and tapered off again in a month or two. I had early onset and rapid cataract formation at the age 40 which was devastating to me at the time.

After PMR was diagnosed, my daily long term Prednisone use was approximately 30-40 mg for the first 5 years and 20-30 mg for the next 5 years.

A remarkable thing happened to me after 10 years of PMR. A person who experienced an adrenal crisis took me under her wing and explained a few things to me. She explained that many of my symptoms could be attributed to adrenal insufficiency caused by long term Prednisone use. She said it was imperative that I preserve whatever adrenal function I had left.

An amazing chain of events happened during my 10th to 12th years of PMR. I was able to have surgery on some "problem areas" and the corrective surgeries enabled me to taper down to 10 mg. Treatment with a biologic followed and I tapered down to 3 mg of Prednisone. I had to stay on 3 mg for six months in order to give my adrenals some time to recover. After my cortisol level improved and was deemed to be adequate as determined by an endocrinologist, I discontinued Prednisone.

I don't know how many side effects were caused by Prednisone. I just know my 13 years of daily Prednisone use were tumultuous and characterized by emergencies and hospitalizations.

While taking Prednisone daily, my medication list expanded to more than 10 other prescription medications. All of these medications were treating or preventing Prednisone side effects.

Currently I do a monthly infusion of the biologic and much lower doses of only two of my remaining prescription medications. The weight I gained while on Prednisone has been stubbornly resistant. I'm working on that side effect and I'm slowly making progress. At least I'm able to exercise again without having a flare and experiencing overwhelming fatigue.

I have been off Prednisone for 4 years. My overall health and quality of life have steadily improved since Prednisone was discontinued. I still have a prescription for Prednisone "as needed" but I never use it.

An interesting question occurred to me based on this post. I wonder how many people who have achieved remission actually stick around afterwards and keep posting on the forum. One of the biggest motivations for me to follow the forum is to learn about the diseases (PMR and GCA) and their treatments. I want to know what to expect, what the typical problems are, etc. Other motivations are to help other people and to feel less alone, since going through PMR and or GCA can be an isolating experience. So the motivation to be on the forum after remission would be a little different than before.

It would be safe to say that my cumulative dose over my 13 years of PMR treatment with daily Prednisone was "massive." That doesn't count the prior 20 years of intermittent high doses of Prednisone to treat other autoimmune conditions.

I didn't have too many side effects during my 20 years of short term Prednisone use prior to PMR. I usually took 60-100 mg and tapered off again in a month or two. I had early onset and rapid cataract formation at the age 40 which was devastating to me at the time.

After PMR was diagnosed, my daily long term Prednisone use was approximately 30-40 mg for the first 5 years and 20-30 mg for the next 5 years.

A remarkable thing happened to me after 10 years of PMR. A person who experienced an adrenal crisis took me under her wing and explained a few things to me. She explained that many of my symptoms could be attributed to adrenal insufficiency caused by long term Prednisone use. She said it was imperative that I preserve whatever adrenal function I had left.

An amazing chain of events happened during my 10th to 12th years of PMR. I was able to have surgery on some "problem areas" and the corrective surgeries enabled me to taper down to 10 mg. Treatment with a biologic followed and I tapered down to 3 mg of Prednisone. I had to stay on 3 mg for six months in order to give my adrenals some time to recover. After my cortisol level improved and was deemed to be adequate as determined by an endocrinologist, I discontinued Prednisone.

I don't know how many side effects were caused by Prednisone. I just know my 13 years of daily Prednisone use were tumultuous and characterized by emergencies and hospitalizations.

While taking Prednisone daily, my medication list expanded to more than 10 other prescription medications. All of these medications were treating or preventing Prednisone side effects.

Currently I do a monthly infusion of the biologic and much lower doses of only two of my remaining prescription medications. The weight I gained while on Prednisone has been stubbornly resistant. I'm working on that side effect and I'm slowly making progress. At least I'm able to exercise again without having a flare and experiencing overwhelming fatigue.

I have been off Prednisone for 4 years. My overall health and quality of life have steadily improved since Prednisone was discontinued. I still have a prescription for Prednisone "as needed" but I never use it.