PMR Dosages and Managing Symptoms

It is very interesting to read these varied medication stories. I might as well add mine to the mix.

PMR came down like a hammer a year ago. It took the doc a few weeks to come up with a diagnosis. I do remember that the pre-diagnosis prescription (treating the symptom) was for tramadol, which had no effect.

Blood work revealed the culprit. I do not recall the initial dose of prednisone (aka "devil's tic-tacs"), but it may have been 30 mg. Anyway, I took the first dose about suppertime, basically totally disabled, and woke up 12 hours later symptom-free. It felt like a miracle.

The taper followed. The rheumatologist prescribed a single dose, but circumstances quickly had me move to the split dose, settling after experimentation on a much smaller evening dose. The only two flare-ups I have had to date have been when I tried the single dose (at the urging of the rheumatologist). Won't go down that road again.

It has been hard for me to sort out what is PMR pain and what is normal old man (73 yrs) stuff. I thought for a long time that hip pain in the inner hip was due to PMR but the rheumatologist pointed out that the inner hip (groin) is not characteristically a PMR issue. Sure enough, some PT cured it. At present the worst symptom, which may or may not be related to fluid retention caused by long term prednisone, is carpal tunnel syndrome in my dominant hand. Seeing a hand specialist soon to talk this over.

At present I am at 4 mg, 3 in the AM and 1 at bedtime. My next taper happens tomorrow, and I will go to 2.5 mg in the AM and 0.5 in the PM.

I have also been on Kevzara for four weeks, injecting myself every two weeks with a 200 mg dose. I have not seen any blood work since starting this med. At the time I first took it the PMR markers were rising slightly.

There is nothing straightforward about this condition. We are all fortunate that we do have an effective treatment for it, albeit one that comes with its own problems. To live with this malady without any effective means of treatment is almost unimaginable. I wish each of you luck in finding the path that is best for YOU!

I liked your story! I hope Kevzara will work for you.

I wanted to add something about inflammation markers or PMR markers as you say. When I started Actemra (tocilizumab) about 4 years ago my inflammation markers "bottomed out." Kevzara will probably cause your inflammation markers to drop too. Actemra and Kevzara both target the same inflammation pathway.

Due to the blockade of IL‐6 signalling, Actemra (tocilizumab) inhibits the hepatic production of C‐reactive protein (CRP) and other acute phase proteins like the erythrocyte sedimentation rate (ESR). This is true for Actemra (tocilizumab) and I assume it is true for Kevzara.

My inflammation markers were always elevated when I took prednisone. After Actemra was started my inflammation markers were close to zero. I was concerned because I had never seen my inflammation markers so low. I was so concerned that I asked my doctor if my inflammation markers were too low!

Actemra interrupts the production of C Reactive Protein (CRP) so it is no longer a reliable measure of disease activity. This was learned from patients with RA who were treated with Actemra.
https://acrabstracts.org/abstract/ultrasound-is-more-reliable-than-inflammatory-parameters-esr-and-crp-to-evaluate-disease-activity-in-rheumatoid-arthritis-patients-on-tocilizumab-therapy/
Another thing to be aware of --- if you have an active infection your CRP and ESR will stay low too. Potentially a doctor could overlook the possibility of an infection when you are on Kevzara or Actemra.

I confess I have done very little research on the whole subject, so I appreciate your insights!

It is very interesting to read these varied medication stories. I might as well add mine to the mix.

PMR came down like a hammer a year ago. It took the doc a few weeks to come up with a diagnosis. I do remember that the pre-diagnosis prescription (treating the symptom) was for tramadol, which had no effect.

Blood work revealed the culprit. I do not recall the initial dose of prednisone (aka "devil's tic-tacs"), but it may have been 30 mg. Anyway, I took the first dose about suppertime, basically totally disabled, and woke up 12 hours later symptom-free. It felt like a miracle.

The taper followed. The rheumatologist prescribed a single dose, but circumstances quickly had me move to the split dose, settling after experimentation on a much smaller evening dose. The only two flare-ups I have had to date have been when I tried the single dose (at the urging of the rheumatologist). Won't go down that road again.

It has been hard for me to sort out what is PMR pain and what is normal old man (73 yrs) stuff. I thought for a long time that hip pain in the inner hip was due to PMR but the rheumatologist pointed out that the inner hip (groin) is not characteristically a PMR issue. Sure enough, some PT cured it. At present the worst symptom, which may or may not be related to fluid retention caused by long term prednisone, is carpal tunnel syndrome in my dominant hand. Seeing a hand specialist soon to talk this over.

At present I am at 4 mg, 3 in the AM and 1 at bedtime. My next taper happens tomorrow, and I will go to 2.5 mg in the AM and 0.5 in the PM.

I have also been on Kevzara for four weeks, injecting myself every two weeks with a 200 mg dose. I have not seen any blood work since starting this med. At the time I first took it the PMR markers were rising slightly.

There is nothing straightforward about this condition. We are all fortunate that we do have an effective treatment for it, albeit one that comes with its own problems. To live with this malady without any effective means of treatment is almost unimaginable. I wish each of you luck in finding the path that is best for YOU!

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.

Will 3 mg be the lowest dose you have been on since the start of PMR?

How long have you been taking prednisone? What was your average dose during this time?

These questions are important because of how prednisone suppresses adrenal function and cortisol production. I took prednisone for 12 years so my doctors expected that I would have problems tapering off prednisone.

My tapering problems would begin at 10 mg and pain would get much worse at 7 mg. I couldn't tolerate being on 7 mg very long. I didn't think Actemra was working either for the first 3 months until I reached 7 mg. I was doing Actemra injections every 2 weeks back then. I didn't have an increase in pain as I was tapering from 10 mg to 7 mg --- I only tapered by 1 mg per month.

I wasn't liking Actemra and I was receiving negative feedback from another PMR forum about using Actemra for PMR. I increased my taper to 1 mg per week thinking I wanted to get the inevitable PMR flare over with in order to increase my prednisone dose again.

When I tapered by 1 mg per week, I felt unwell by the time I got to 3 mg. I told my rheumatologist who was surprised that I was on 3 mg already. My rheumatologist told me to stop the taper. My cortisol level was low so that explained the overwhelming fatigue I felt.

Long story ... but I had to stay on 3 mg for 6 months before my cortisol level improved.

An endocrinologist told me when it might be safe to stop prednisone --- it wasn't my rheumatologst. The two doctors did talk to each other. The endocrininologist said from an adrenal standpoint it might be safe. My rheumatologist wasn't so sure from a PMR standpoint but said I should give it a try and go to zero.

The reason we taper slowly in the first place is because prednisone suppresses the cortisol production from the adrenals. When we taper our prednisone dose lower, the adrenals need some time to resume cortisol production.

How much time the adrenals need is mostly related to the duration of prednisone use and the cumulative dose of prednisone over the time period prednisone was taken.

It is very interesting to read these varied medication stories. I might as well add mine to the mix.

PMR came down like a hammer a year ago. It took the doc a few weeks to come up with a diagnosis. I do remember that the pre-diagnosis prescription (treating the symptom) was for tramadol, which had no effect.

Blood work revealed the culprit. I do not recall the initial dose of prednisone (aka "devil's tic-tacs"), but it may have been 30 mg. Anyway, I took the first dose about suppertime, basically totally disabled, and woke up 12 hours later symptom-free. It felt like a miracle.

The taper followed. The rheumatologist prescribed a single dose, but circumstances quickly had me move to the split dose, settling after experimentation on a much smaller evening dose. The only two flare-ups I have had to date have been when I tried the single dose (at the urging of the rheumatologist). Won't go down that road again.

It has been hard for me to sort out what is PMR pain and what is normal old man (73 yrs) stuff. I thought for a long time that hip pain in the inner hip was due to PMR but the rheumatologist pointed out that the inner hip (groin) is not characteristically a PMR issue. Sure enough, some PT cured it. At present the worst symptom, which may or may not be related to fluid retention caused by long term prednisone, is carpal tunnel syndrome in my dominant hand. Seeing a hand specialist soon to talk this over.

At present I am at 4 mg, 3 in the AM and 1 at bedtime. My next taper happens tomorrow, and I will go to 2.5 mg in the AM and 0.5 in the PM.

I have also been on Kevzara for four weeks, injecting myself every two weeks with a 200 mg dose. I have not seen any blood work since starting this med. At the time I first took it the PMR markers were rising slightly.

There is nothing straightforward about this condition. We are all fortunate that we do have an effective treatment for it, albeit one that comes with its own problems. To live with this malady without any effective means of treatment is almost unimaginable. I wish each of you luck in finding the path that is best for YOU!

Three mg is the lowest dose I have taken since starting prednisone almost exactly a year ago. Most of this time I have been decreasing at 1 mg per month, but speeded up the decrease when I started the Kevzara.
I do not have an endocrinologist involved, only a rheumatologist. We have not discussed cortisol or adrenals at all.