1. < Polymyalgia Rheumatica (PMR)

New to PMR diagnosis

Posted by deborah57 @deborah57, Mar 6, 2024

Hi, I am new here and just finding my way. I have some questions. I was recently diagnosed with PMR. I took the initial diagnostic dose of tapered Methylprednisolone and responded immediately so my Dr prescribed 5mg Prednisone while I am waiting to see a Rhematologist.
I haven't started taking it yet.
I am terrified of prednisone. I'm sensitive to drugs and have had numerous bad experiences with some of them. I'm healthy, eat clean, don't drink or smoke, get exercise daily.
Here are some of my questions:
I see a lot of discussion about people trying to taper off Pred. How long are people usually on it before starting to try and taper? If you have been on the drug for awhile, when and why would you decide to taper?
Does anyone have experience with inter muscular injections? Or the new Biologic KevZara?

thanks for any information!

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

wellsbjt | @wellsbjt | Feb 16 5:12pm
In reply to @rnm "Hello, I was diagnosed with PMR just about two weeks ago. I have been on a..." + (show)
@rnm

Hello,
I was diagnosed with PMR just about two weeks ago. I have been on a low-dose of prednisone, 10 mg daily for about a week. The prednisone does seem to help with the pain, particularly as the day wears on. My question is has any one out there ever started on a biologic to begin with? I am very frightened and fearful about the side effects of prednisone. Any and all information and insights would be helpful. I feel very scared about this diagnosis. Thank you in advance for your help.

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I wish that I had started on Kevzara at the beginning. I felt better within 2 days of starting Kevzara and wish I had started on it earlier. There is no down-side risk. Both drugs depress the immune system, but only prednisone causes bone loss, high glucose, high cholesterol, thin skin, and a round face.
I can’t comment on whether having a nurse administer an injection would make it easier to get Kevzara approved by your insurance. I didn’t have to fight that battle.

REPLY
jeff97 | @jeff97 | Feb 16 5:53pm
In reply to @rnm "Thank you for sharing this info... Do you wish that you had started on Kevzara? Also,..." + (show)
@rnm

Thank you for sharing this info...
Do you wish that you had started on Kevzara?
Also, one of the members of this group seemed to imply that if Kevzara was injected at a hospital rather than self injected, that it would be covered by insurance.

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Regarding whether Kevzara would be covered by insurance if it was injected at a hospital, I can speak to that a little based on my experience with Actemra. I have a Medicare Advantage plan. When I was discussing Actemra last year with my doctor, he said that it is available through infusions or injections. My understanding is that the infusions would be covered by Medicare Part B, and the injections (which are done by the patient at home) would be covered by Medicare Part D. For me the Actemra either by infusion or injection had to be pre-approved by the insurance company. They approved weekly injections for me. I think in most cases the copays are higher for drugs covered by Medicare Part D than the ones covered by Part B. Last year the maximum out of pocket cost for prescriptions under Part D was $8000, and this year it is $2000. I assume Kevzara is similar to Actemra in regard to insurance.

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2 replies
maye | @maye | Feb 16 9:27pm
In reply to @jeff97 "I disagree with your statement about Actemra. The only side effect I've had is possibly high..." + (show)
@jeff97

I disagree with your statement about Actemra. The only side effect I've had is possibly high cholesterol. I've seen many more comments about bad side effects from Methotrexate than from Actemra.

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I have GCA and PMR diagnosis Nov 2024 . Immediate start on 50mg pred rapid taper and weekly Actemera 162mg subcutaneous weekly. I too was concerned about pred side effects. The worst I experienced was insomnia when on high dose . I had some other side effects such as minor raise in blood sugars, and blood pressure. No fluid retention, no moon face , no weight gain. I was quite strict with low GI diet , low salt diet. This probably helped.

I’m now off prednisone completely, all done in 3 half months . Blood sugar and blood pressure returned to normal. No problem with my bone density either. For further bone scan later this yr .

I was in full remission according to my blood results and zero symptoms within 2 months of treatment.

Now I’m on Actemera as a mono treatment for one year.
No side effects so far, just a slight cholesterol increase. Not a problem since my cholesterol has always been on the low side anyway.
Rheumatologist says any relapses would be treated with Actemera, no more prednisone
Thank you modern medicine made it all manageable.
Actemera has been effective for me and saved me from high cumulative doses of damaging pred .

REPLY
1 reply
jeff97 | @jeff97 | Feb 17 2:47am
In reply to @maye "I have GCA and PMR diagnosis Nov 2024 . Immediate start on 50mg pred rapid taper..." + (show)
@maye

I have GCA and PMR diagnosis Nov 2024 . Immediate start on 50mg pred rapid taper and weekly Actemera 162mg subcutaneous weekly. I too was concerned about pred side effects. The worst I experienced was insomnia when on high dose . I had some other side effects such as minor raise in blood sugars, and blood pressure. No fluid retention, no moon face , no weight gain. I was quite strict with low GI diet , low salt diet. This probably helped.

I’m now off prednisone completely, all done in 3 half months . Blood sugar and blood pressure returned to normal. No problem with my bone density either. For further bone scan later this yr .

I was in full remission according to my blood results and zero symptoms within 2 months of treatment.

Now I’m on Actemera as a mono treatment for one year.
No side effects so far, just a slight cholesterol increase. Not a problem since my cholesterol has always been on the low side anyway.
Rheumatologist says any relapses would be treated with Actemera, no more prednisone
Thank you modern medicine made it all manageable.
Actemera has been effective for me and saved me from high cumulative doses of damaging pred .

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Wow, it's really amazing that you were able to get off of prednisone so quickly. I would think you have to be in the top .1 percent of people for minimal treatment time. I've been under treatment for almost 8 months, and I expect that I'll be taking prednisone for at least another 6 months. I think the Actemra has the GCA and PMR under control, but it will take that much time to get off of prednisone and avoid adrenal insufficiency issues. I think my rheumatologist was conservative with my treatment due to significant visual involvement with my GCA.

REPLY
1 reply
maye | @maye | Feb 18 4:35am
In reply to @rnm "Hello, I was diagnosed with PMR just about two weeks ago. I have been on a..." + (show)
@rnm

Hello,
I was diagnosed with PMR just about two weeks ago. I have been on a low-dose of prednisone, 10 mg daily for about a week. The prednisone does seem to help with the pain, particularly as the day wears on. My question is has any one out there ever started on a biologic to begin with? I am very frightened and fearful about the side effects of prednisone. Any and all information and insights would be helpful. I feel very scared about this diagnosis. Thank you in advance for your help.

Jump to this post

Great to hear Pred and Actemera working for you too Jeff97, albeit a slower taper . Hope your eyesight is preserved? My GCA is with no temporal / cranial involvement. Medical emergency non the less with aortic involvement and other major vessels.

I know my experience with rapid pred taper is contrary to many others experiences I have read in this forum. However fortunately for me it has worked to plan .

I’m back to pre diagnosis health, travelling overseas at the moment. Keeping Actemera refrigerated as i travel is a small concern, but doable.

REPLY
2 replies
jeff97 | @jeff97 | Feb 18 6:05am
In reply to @maye "Great to hear Pred and Actemera working for you too Jeff97, albeit a slower taper ...." + (show)
@maye

Great to hear Pred and Actemera working for you too Jeff97, albeit a slower taper . Hope your eyesight is preserved? My GCA is with no temporal / cranial involvement. Medical emergency non the less with aortic involvement and other major vessels.

I know my experience with rapid pred taper is contrary to many others experiences I have read in this forum. However fortunately for me it has worked to plan .

I’m back to pre diagnosis health, travelling overseas at the moment. Keeping Actemera refrigerated as i travel is a small concern, but doable.

Jump to this post

Maye, my vision is ok. I got treatment for the GCA just in time to save it. I was hospitalized for 3 days and treated each of those days with an infusion of high dose methylprednisolone. I think my GCA is only cranial. I'm feeling much closer to pre diagnosis health as I keep tapering.

For what it's worth, my understanding is that Actemra can go unrefrigerated for up to 2 weeks.

REPLY
1 reply
DadCue | @dadcue | Feb 18 7:30am
In reply to @maye "Great to hear Pred and Actemera working for you too Jeff97, albeit a slower taper ...." + (show)
@maye

Great to hear Pred and Actemera working for you too Jeff97, albeit a slower taper . Hope your eyesight is preserved? My GCA is with no temporal / cranial involvement. Medical emergency non the less with aortic involvement and other major vessels.

I know my experience with rapid pred taper is contrary to many others experiences I have read in this forum. However fortunately for me it has worked to plan .

I’m back to pre diagnosis health, travelling overseas at the moment. Keeping Actemera refrigerated as i travel is a small concern, but doable.

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"I know my experience with rapid pred taper is contrary to many others experiences I have read in this forum. However fortunately for me it has worked to plan ."
----------------------
For GCA, people doing the slower prednisone tapers aren't on Actemra (tocilizumab). There are several advantages to being on Actemra. 1) people are able to taper off prednisone faster, 2) the cumulative dose of Prednisone is less, 3) a sustained remission lasts longer.

With the availability now of an approved steroid-sparing agent for GCA, it’s reasonable to ask whether a more rapid glucocorticoid taper would be feasible. This question needs more research but according to the following link --- maybe a taper as fast as 8 weeks is feasible.
https://www.steritas.com/insights/rapid-tapering-reduces-steroid-toxicity-in-gca

REPLY
coachg7420 | @coachg7420 | Feb 18 11:52am
In reply to @jeff97 "Wow, it's really amazing that you were able to get off of prednisone so quickly. I..." + (show)
@jeff97

Wow, it's really amazing that you were able to get off of prednisone so quickly. I would think you have to be in the top .1 percent of people for minimal treatment time. I've been under treatment for almost 8 months, and I expect that I'll be taking prednisone for at least another 6 months. I think the Actemra has the GCA and PMR under control, but it will take that much time to get off of prednisone and avoid adrenal insufficiency issues. I think my rheumatologist was conservative with my treatment due to significant visual involvement with my GCA.

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I’ve been taking Prednisone for about four years. I was down to 2.5 mg a day. Lately back to five as symptoms increased dramatically during attempts to sleep. I see my Rheumatologist tomorrow and am truly frustrated and at my wits end

REPLY
1 reply
jeff97 | @jeff97 | Feb 18 2:14pm
In reply to @coachg7420 "I’ve been taking Prednisone for about four years. I was down to 2.5 mg a day...." + (show)
@coachg7420

I’ve been taking Prednisone for about four years. I was down to 2.5 mg a day. Lately back to five as symptoms increased dramatically during attempts to sleep. I see my Rheumatologist tomorrow and am truly frustrated and at my wits end

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My brother-in-law has been taking Methotrexate for 12 years for PMR. He's tried to get off of it several times, but the PMR has always come back. I hope your rheumatologist can help you get some relief.

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1 reply
dlc2025 | @dlc2025 | Feb 18 2:48pm
In reply to @seniormed "You will find many helpful suggestions scrolling through the PMR group comments. It sounds like your..." + (show)
@seniormed

You will find many helpful suggestions scrolling through
the PMR group comments. It sounds like your physician
is aware of your concerns on handling prednisone.
Not all of us experience long term need for prednisone.
You well might be done in a matter of months. The
side effects are manageable and mostly preventable at
your early diagnosis. Know all your lab results and keep
a copy of all your records. If you are concerned about
blood pressure you can easily monitor it with a home
unit.I always took my meds with a meal and use an antacid at night. Mediterranean diet helps with inflammation and weight control. Blood sugar can be checked every few weeks at home. A bone density scan and vitamin D with calcium supplement is indicated as well. If you need a higher dose for symptom control
you can feel more confident and stay active. Walk
every day. If you are proactive and stay positive you
are most likely to do well. Share all your concerns at
regular visits with doctor.

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Does anyone take probiotic with Prednisone?

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