PMR Dosages and Managing Symptoms

Posted by maryft @maryft, Aug 16, 2021

I've read through the discussions and note all the different dosages of prednisone, different lengths of time taking prednisone, plus the addition of other meds, for PMR. I also note that the tapering of dosages and time frames are so varied from person to person. It appears there is not a set standard among physicians. How does one know if they were/are receiving the right dosage? Obviously, if symptoms subside, the dose is working, but after tapering if the symptoms return, was the initial dosage correct? I've also read that a person shouldn't be on prednisone long term, but there are many who've been on it for a few years. Its all very confusing.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

Interesting paper about IL-6 and inflammatory diseases

The Two-Faced Cytokine IL-6 in Host Defense and Diseases

5.2.1. Giant Cell Arteritis (GCA) and Takayasu Arteritis (TA)
The safety and effectiveness of TCZ for RA encouraged clinical trials of TCZ for various refractory inflammatory diseases. In 2017, the efficacy of TCZ was confirmed for diseases in a field other than inflammatory joint diseases. GCA is the most common large vessel vasculitis and cranial arteritis that affects individuals over the age of 50 and can lead to permanent visual loss. Most patients improve with glucocorticoids; however, some patients show disease flare after the reduction of treatment. A phase III GiACTA study involving 251 patients with GCA compared six months of treatment with prednisone taper plus TCZ (subcutaneous 162 mg) to prednisone taper alone. Fifty-six percent of patients receiving TCZ weekly and 53% receiving it every-other-week achieved sustained remission at 12 months compared to 14% in the six-month prednisone tapering alone group [111]. Treatment with TCZ plus prednisone led to a reduction in the cumulative dose of prednisone required to regulate GCA. In 2017, TCZ became the first GCA therapy to be approved by the USA, Japan and the EU. Another type of large vessel vasculitis is TA, often affecting women under the age of 40, in which arteries and their major branches narrow or cause aneurysms due to chronic inflammation of the vessel walls. Previously, glucocorticoids and immunosuppressive drugs, such as methotrexate or azathioprine, were usually used as treatment. In a phase III TAKT study, 19 patients with relapsed TA randomly received weekly TCZ (subcutaneous 162 mg) or placebo treatment. Although TCZ did not meet the defined primary endpoint for time to relapse TA, the hazard ratio for time to relapse was 0.41 (95.4% CI 0.15–1.10; p = 0.0596), suggesting a favorable effect of TCZ over the placebo [112]. A retrospective study of 46 patients with TA also showed the effectiveness of TCZ through significantly better event-free survival of patients who received TCZ compared with disease-modifying anti-rheumatic drugs (DMARDs) [113]. Japan approved TCZ for the treatment of TA in 2017. However, TA is known to frequently complicate inflammatory bowel disease [114]. Patients with inflammatory bowel disease should receive careful attention when receiving IL-6 inhibition therapy, because IL-6 has a protective effect of the intestinal epithelium.

5.3.2. Polymyalgia Rheumatica (PMR)
PMR is an inflammatory disease involving stiffness of the shoulders and pelvic girdles that occurs in people older than 50 years and is often associated with GCA. Usually, glucocorticoids are effective for treating PMR but some patients follow a chronic course and have glucocorticoid side effects. In a prospective study of 20 patients with active and recent onset PMR, all patients showed clinical improvement at 12 weeks after three TCZ (8 mg/kg) infusions at 4-week intervals [121]. A phase IIa trial involving newly diagnosed PMR patients also demonstrated the beneficial effects of TCZ on PMR [122]. All nine patients treated with intravenous TCZ (8 mg/kg) with a rapid tapering of glucocorticoids showed relapse-free remission without glucocorticoids after six months. Together, these reports suggest that TCZ is effective and reduces cumulative glucocorticoid doses in patients with PMR. Phase III clinical trial is being conducted (ClinicaTrials.gov NCT03263715).

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6274717/
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@edwardh

Interesting paper about IL-6 and inflammatory diseases

The Two-Faced Cytokine IL-6 in Host Defense and Diseases

5.2.1. Giant Cell Arteritis (GCA) and Takayasu Arteritis (TA)
The safety and effectiveness of TCZ for RA encouraged clinical trials of TCZ for various refractory inflammatory diseases. In 2017, the efficacy of TCZ was confirmed for diseases in a field other than inflammatory joint diseases. GCA is the most common large vessel vasculitis and cranial arteritis that affects individuals over the age of 50 and can lead to permanent visual loss. Most patients improve with glucocorticoids; however, some patients show disease flare after the reduction of treatment. A phase III GiACTA study involving 251 patients with GCA compared six months of treatment with prednisone taper plus TCZ (subcutaneous 162 mg) to prednisone taper alone. Fifty-six percent of patients receiving TCZ weekly and 53% receiving it every-other-week achieved sustained remission at 12 months compared to 14% in the six-month prednisone tapering alone group [111]. Treatment with TCZ plus prednisone led to a reduction in the cumulative dose of prednisone required to regulate GCA. In 2017, TCZ became the first GCA therapy to be approved by the USA, Japan and the EU. Another type of large vessel vasculitis is TA, often affecting women under the age of 40, in which arteries and their major branches narrow or cause aneurysms due to chronic inflammation of the vessel walls. Previously, glucocorticoids and immunosuppressive drugs, such as methotrexate or azathioprine, were usually used as treatment. In a phase III TAKT study, 19 patients with relapsed TA randomly received weekly TCZ (subcutaneous 162 mg) or placebo treatment. Although TCZ did not meet the defined primary endpoint for time to relapse TA, the hazard ratio for time to relapse was 0.41 (95.4% CI 0.15–1.10; p = 0.0596), suggesting a favorable effect of TCZ over the placebo [112]. A retrospective study of 46 patients with TA also showed the effectiveness of TCZ through significantly better event-free survival of patients who received TCZ compared with disease-modifying anti-rheumatic drugs (DMARDs) [113]. Japan approved TCZ for the treatment of TA in 2017. However, TA is known to frequently complicate inflammatory bowel disease [114]. Patients with inflammatory bowel disease should receive careful attention when receiving IL-6 inhibition therapy, because IL-6 has a protective effect of the intestinal epithelium.

5.3.2. Polymyalgia Rheumatica (PMR)
PMR is an inflammatory disease involving stiffness of the shoulders and pelvic girdles that occurs in people older than 50 years and is often associated with GCA. Usually, glucocorticoids are effective for treating PMR but some patients follow a chronic course and have glucocorticoid side effects. In a prospective study of 20 patients with active and recent onset PMR, all patients showed clinical improvement at 12 weeks after three TCZ (8 mg/kg) infusions at 4-week intervals [121]. A phase IIa trial involving newly diagnosed PMR patients also demonstrated the beneficial effects of TCZ on PMR [122]. All nine patients treated with intravenous TCZ (8 mg/kg) with a rapid tapering of glucocorticoids showed relapse-free remission without glucocorticoids after six months. Together, these reports suggest that TCZ is effective and reduces cumulative glucocorticoid doses in patients with PMR. Phase III clinical trial is being conducted (ClinicaTrials.gov NCT03263715).

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6274717/

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Thank-you for sharing this. I think the results of this study were published in 2016. That year is considered to be a breakthrough year for GCA.

My personal breakthrough started on January 1st, 2019. That was the day I gave myself my 1st injection of Actemra (tocilizumab). My rheumatologist said Actemra was my best hope of ever getting off prednisone. I didn't believe my rheumatologist at the time. I was getting negative feedback about Actemra.

There are some downsides to Actemra. I don't want to take Actemra forever anymore than prednisone. However, I'm "better off" on Actemra and "totally off" prednisone.

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@walkamok

Four weeks in I see no difference on Kevzara, although I have speeded up the prednisone taper to 1 mg every two weeks with no ill effects. Today I take my third 200 mg dose of Kevzara and reduce from 4 mg to 3 mg P. From what I read, reducing when at a low dose of P is where it gets tricky. Not surprising as the percentage decrease increases, i.e., 4 to 3 is a bigger drop than 10 to 9.
I will post again when I have news. Best wishes...to all of us.

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Hi; I just had my 4th Kevzara injection yesterday and I am seeing a difference. All the literature says 2-3 months for Kevzara to be fully effective. At the same time I am down to 5mg of prednisone for the next two weeks, have my fifth dose of Kevzara on Dec 19 and move to 2.5 prednisone until I see doc on Jan 9. Plan is to come off prednisone entirely at that point since I will have had six doses of Kevzara and see what happens. If I have to stay on Kevzara for a period of time, so be it. Interestingly, it will be just short of 1 year since my diagnoses.
Good luck, Merry Christmas and Happy New Year.

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@wilmingtonemperor

Hi; I just had my 4th Kevzara injection yesterday and I am seeing a difference. All the literature says 2-3 months for Kevzara to be fully effective. At the same time I am down to 5mg of prednisone for the next two weeks, have my fifth dose of Kevzara on Dec 19 and move to 2.5 prednisone until I see doc on Jan 9. Plan is to come off prednisone entirely at that point since I will have had six doses of Kevzara and see what happens. If I have to stay on Kevzara for a period of time, so be it. Interestingly, it will be just short of 1 year since my diagnoses.
Good luck, Merry Christmas and Happy New Year.

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Thank you for this post. It seems that we are following parallel paths.
Good to know that 2-3 months can pass for the Kevzara to become fully effective. I will tamp down my expectations.
Now at 3 mg I am starting to feel pain in my left shoulder creeping in--difficult to raise the arm. I would say that I will try to keep a close watch on it but somehow I think that that is not going to be a problem...
And the joys of the holiday season to you as well!

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Are you experiencing any weight gain with the injections?

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@tsc

Hi all. I do think it is best to seek out a rheumatologist for treatment of this disease. My rheumatologist commented that many people are on high dosages of prednisone for way too long. PMR and GCA (Giant Cell Arteritis) are companion disorders. I've been diagnosed with both. GCA is more severe - so I was put on 40 mg. prednisone for two weeks, initially (given my size = about 100 lbs), then told to taper down by 5 mg. every two weeks, but if symptoms returned to go back up to the previous dosage. Luckily, I had no flareups while tapering down. I am now down to 10 mg. The doctor said to stay on this dosage for a month, then taper down by 2.5 mg for a month, etc. I do get a sense from reading posts that many people are left on their own to figure out tapering. Prednisone is such a powerful drug with so many side effects that it seems most doctors want to get patients down to the lowest dose possible to manage symptoms, and it is trial and error. We basically have to stay on prednisone until our immune systems calm down...and then it seems, they can get excited again. Cecil and Goldman's Textbook of Medicine states that "Steroid treated PMR + GCA are self-limited illnesses..." Eventually, they burn out, for some, sooner than later.

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Looking forward to the BURN OUT!

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@nancy53

Looking forward to the BURN OUT!

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Hi @nancy53, I'm one of the lucky ones so far. I've been of prednisone for about 14 months with no flareups. How long have you had GCAor PMR?

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@tsc

Hi @nancy53, I'm one of the lucky ones so far. I've been of prednisone for about 14 months with no flareups. How long have you had GCAor PMR?

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You are lucky.

I'm not even 100% sure I have PMR yet. We're guessing, but I sure have all the symptoms.

This ordeal started right before Thanksgiving.

I've learned that the Holidays are a terrible time be sick!

Hoping for a quick remission.

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@nancy53

You are lucky.

I'm not even 100% sure I have PMR yet. We're guessing, but I sure have all the symptoms.

This ordeal started right before Thanksgiving.

I've learned that the Holidays are a terrible time be sick!

Hoping for a quick remission.

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Hi @nancy53, I had PMR for about six months and the results of lab tests only showed a slightly elevated CRP score so my doctor didn't diagnose it. I wasn't prescribed any medication. About eight months later I had a host of new symptoms and the inflammation markers for my blood tests were off the charts. I had GCA, diagnosed by a biopsy of the temporal artery.
Sometimes with PMR if the inflammation markers aren't there yet, the doctor may prescribe a trial dosage of prednisone. If it relieves the symptoms, then PMR is usually diagnosed. If not, then it's most likely something else.
The holidays are bad because no one's available.
I wish you the best.

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@tsc

Hi @nancy53, I had PMR for about six months and the results of lab tests only showed a slightly elevated CRP score so my doctor didn't diagnose it. I wasn't prescribed any medication. About eight months later I had a host of new symptoms and the inflammation markers for my blood tests were off the charts. I had GCA, diagnosed by a biopsy of the temporal artery.
Sometimes with PMR if the inflammation markers aren't there yet, the doctor may prescribe a trial dosage of prednisone. If it relieves the symptoms, then PMR is usually diagnosed. If not, then it's most likely something else.
The holidays are bad because no one's available.
I wish you the best.

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Thank you. Prednisone is definitely helping.

I wish you the best too - this is a nightmarish condition. When you do occasionally feel good, it's heartbreaking that it disappears.

GCA sounds awful too.

Gotta keep positive.

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