Prednisone cumulative dose in PMR

Good questions, maye, and a subject that I will be interested in hearing more about.
Just back from the entomologist, no that's not right lol, the endocrinologist. I am off Prednisone after 18 months, and PMR is in remission. Now we are trying to determine the cause of the muscle and cognitive fatigue and muscle weakness that I am still experiencing. It came on when I was down to a 7mg. dose of Prednisone and has persisted. I have been off the med for 4 months. The doctor thinks it may be corticosteroid myalgia which can take a year to resolve. Waiting now for the results of blood tests since there may be other causes such as thyroid or the possibility that the PMR is not in remission (in which case I will need to go back on Prednisone).

Good questions, maye, and a subject that I will be interested in hearing more about.
Just back from the entomologist, no that's not right lol, the endocrinologist. I am off Prednisone after 18 months, and PMR is in remission. Now we are trying to determine the cause of the muscle and cognitive fatigue and muscle weakness that I am still experiencing. It came on when I was down to a 7mg. dose of Prednisone and has persisted. I have been off the med for 4 months. The doctor thinks it may be corticosteroid myalgia which can take a year to resolve. Waiting now for the results of blood tests since there may be other causes such as thyroid or the possibility that the PMR is not in remission (in which case I will need to go back on Prednisone). While on Prednisone I was also prescribed alendronate, the generic version of Fosamax to protect my bones (which has its own side effects).

Thanks for your response Edwardh.
Hopefully your symptoms resolve without more pred .
Best you stay clear of the Entomologist though!

Maye, I was diagnosed with GCA at the end of June of 2024. I had undiagnosed PMR for about a year before that. I haven't achieved remission yet. Calculating the cumulative dose of prednisone would require a lot of calculations, but here is the taper plan that I followed. Note that I started weekly Actemra injections about 6 weeks after I started prednisone, so that has helped me taper. Also, because of vision problems from the GCA, my first 3 days of treatment involved daily IV infusions of high dose steroids (prednisone?).

Weeks 1-6: 60 mg per day prednisone
Weeks 7-22: taper 5 mg every 2 weeks down to 20 mg
Weeks 22-28: taper 2.5 mg every 2 weeks down to 10 mg

I'm currently at 10 mg per day. I don't have the taper plan yet to go below 10.

For side effects, I've gained a little weight - 3 pounds, and have a bit of a moon face. I've had some muscle problems that prevent strenuous exercise. I had a lot of insomnia until the prednisone dose got down to around 40 mg. My cholesterol has increased significantly from the prednisone and or Actemra, so I'll probably have to go on a statin for that. My rheumatologist recommended I take calcium and vitamin D supplements, and I also take a vitamin K2 supplement. I also take a proton pump inhibitor to control stomach irritation from the prednisone and low dose aspirin recommended for the GCA.

Otherwise, I feel pretty good. I usually walk 4 miles every day, and lift weights and stretch every other day. Early in treatment I was usually tired at least every other day, but that has decreased over time. I still have to pace myself and take extra rest as needed.

Edwardh, I've posted before about having muscle problems. I have GCA and PMR, and started having muscles problems after tapering the prednisone from 60 mg/day to 17.5. I strained several muscles in my legs jogging, and had to stop doing strenuous exercise. I was afraid of doing permanent damage. Other than that my muscles seem sore fairly often even though I'm just doing the same activities and exercises I've always done. I'm hoping the muscle problems will go away eventually as I continue to taper the prednisone.

I was also on Alendronate for about a month, but I had to stop due to stomach irritation.

@maye - Good question that I really never thought about when my PMR was active. I did a quick search and it shows 22 comments by members, including the ones in this discussion - https://connect.mayoclinic.org/search/comments/?search=cumulative%20dose%20+prednisone.

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.

What biologic are you on? I am taking prednisone, but would love to NOT be on it. Thank you.

Great question 🙂. My second time with PMR has been in remission since Sept 2018 and I still am following the PMR group along with many others. My interest is mainly in keeping the PMR in remission.