I am afraid the pain will never end.

Posted by toryf @toryf, Sep 3 5:57pm

Hi.

I am a 61 year old female and woke up after surgery in January with what the rheumatologist (and I) think is PMR. My life is so diminished as the pain has not relented. I had 90-95% relief at 20 mg of Prednisone but was told (and understood) that it was unwise to stay there so got myself down to 8mg.

The pain was just too bad so I bumped back to 10 mg. And then back up to 12 mg. The last time I felt ok/functional was at 15 mg but don't want to go that high again of I can help it.

I started Kevzara 2.5 weeks ago. I am looking for some hope. Straight up. Thank u to all.

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

I just wish to add a couple of things. Your taper from 20 mg to 8 mg in 8 months is phenomenal but needing to go back to 12 mg isn't surprising. Not many people are successful with their first attempt at tapering off prednisone. It isn't a failure ... it is just part of the learning curve.

Hopefully, Kevzara will make it easier to taper Prednisone the second time. I understand your misgivings about higher doses of Prednisone but if 12 mg isn't enough to be functional then that defeats the purpose of taking Prednisone in the early stages. Think of Prednisone as a "bridge" to better treatment with Kevzara. Hopefully Kevzara will provide better pain control with fewer side effects relative to long term treatment with Prednisone. A biologic like Kevzara takes at least 3 months to notice much of a change for the better.

Many people report good results from Kevzara for the treatment of PMR. I don't have any personal experience with Kevzara but I have experience with Actemra which is another biologic similar to Kevzara, By comparison, I was on Prednisone at higher doses for 12 years before I ever reached the bridge to more effective treatment with Actemra.

REPLY
Profile picture for tweetypie13 @tweetypie13

Hang in there . The Kevzara has been very good for me. My guess, It took me abt 2-3 months to have the Kevzara kick in. I was at 8mg prednisone when I started. Was able to taper to “o” by 4 months.
Remember, a PMR flare may not be the same as prednisone withdrawal.
Believeeeeee.

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What were your symptoms of withdrawal? I am at the point of tapering Prednisone from 5mg( which gave me my life back) now to 2.5mg. Pain is noticeable, but the crushing fatigue and weakness is better. My Rheumatologist said most likely PMR was triggered by Covid. Cholesterol shot up quickly on steroid treatments. This is what my Rheumatologist wants to avoid: heart disease.
Did you notice help with pain and fatigue using Kezvara as efffectively as with Prednisone? Thanks!

REPLY
Profile picture for yah7 @yah7

What were your symptoms of withdrawal? I am at the point of tapering Prednisone from 5mg( which gave me my life back) now to 2.5mg. Pain is noticeable, but the crushing fatigue and weakness is better. My Rheumatologist said most likely PMR was triggered by Covid. Cholesterol shot up quickly on steroid treatments. This is what my Rheumatologist wants to avoid: heart disease.
Did you notice help with pain and fatigue using Kezvara as efffectively as with Prednisone? Thanks!

Jump to this post

Note: I am 79yo.
My personal goal is to be in remission next year by my 80th bday.
My self tapering schedule was 10% a week if no discomfort. Easiest for me was alternate 5mg one day and 4 the next day which equals 4.5 total.
If not ok stay for 5-7 days until comfortable.
If no discomfort, then go to 4 every day.
Repeat.
As long as I have had PMR, I force myself to get exercise everyday. Minimum a 2 mi walk. I have a Corrective Movement Specialist, i,e, trainer/pt who keeps me moving.
With that said, she has been a HUGE help and my number one resource.
One of my drs sent me for Pool PT that was PT in a tank against jets which led me to pool walking which is easy on the body. I have taken advantage of Accupuncture, shock wave therapy, TVT (targeted vibration therapy). I have been throwing everything at the PMR except the kitchen sink. It has been a slooooowwwww road, by inches, with occasional big leaps. BTW: I do have problems with the weather, humidity dew point…..a trip to Alaska away from it and I was a new person.

So the answer to your question “ Did you notice help with pain and fatigue using….”……I have no clear answer.
DON’T give in!

REPLY
Profile picture for tweetypie13 @tweetypie13

Note: I am 79yo.
My personal goal is to be in remission next year by my 80th bday.
My self tapering schedule was 10% a week if no discomfort. Easiest for me was alternate 5mg one day and 4 the next day which equals 4.5 total.
If not ok stay for 5-7 days until comfortable.
If no discomfort, then go to 4 every day.
Repeat.
As long as I have had PMR, I force myself to get exercise everyday. Minimum a 2 mi walk. I have a Corrective Movement Specialist, i,e, trainer/pt who keeps me moving.
With that said, she has been a HUGE help and my number one resource.
One of my drs sent me for Pool PT that was PT in a tank against jets which led me to pool walking which is easy on the body. I have taken advantage of Accupuncture, shock wave therapy, TVT (targeted vibration therapy). I have been throwing everything at the PMR except the kitchen sink. It has been a slooooowwwww road, by inches, with occasional big leaps. BTW: I do have problems with the weather, humidity dew point…..a trip to Alaska away from it and I was a new person.

So the answer to your question “ Did you notice help with pain and fatigue using….”……I have no clear answer.
DON’T give in!

Jump to this post

Thank you for all of that information! I do not feel so alone now. I will keep pushing. It's been such a strange and life altering experience. My first rheumatologist was not helpful. My new rheumatologist (while a very poor communicator) is quite smart, is current on research and genuinely cares. I feel like between him and this new community I have found that I am going in the right direction. Again, thank u.

REPLY
Profile picture for yah7 @yah7

What were your symptoms of withdrawal? I am at the point of tapering Prednisone from 5mg( which gave me my life back) now to 2.5mg. Pain is noticeable, but the crushing fatigue and weakness is better. My Rheumatologist said most likely PMR was triggered by Covid. Cholesterol shot up quickly on steroid treatments. This is what my Rheumatologist wants to avoid: heart disease.
Did you notice help with pain and fatigue using Kezvara as efffectively as with Prednisone? Thanks!

Jump to this post

So far, I have not noticed a difference with Kevzara since I have only been on it 2.5 weeks. I wish I could offer I better input. My experience with Prednisone withdrawal was that I went down 1mg per week starting from 20 mg. At 15 mg the pain and fatigue set back in. At 10mg the pain was do-able but constant and at 8 mg the pain was not tolerable. I am now back to 12 mg. The fatigue is brutal. But, again, I am early days with Kevzara. I do not intend to titrate down for at least another month.

REPLY
Profile picture for Mike @dadcue

I just wish to add a couple of things. Your taper from 20 mg to 8 mg in 8 months is phenomenal but needing to go back to 12 mg isn't surprising. Not many people are successful with their first attempt at tapering off prednisone. It isn't a failure ... it is just part of the learning curve.

Hopefully, Kevzara will make it easier to taper Prednisone the second time. I understand your misgivings about higher doses of Prednisone but if 12 mg isn't enough to be functional then that defeats the purpose of taking Prednisone in the early stages. Think of Prednisone as a "bridge" to better treatment with Kevzara. Hopefully Kevzara will provide better pain control with fewer side effects relative to long term treatment with Prednisone. A biologic like Kevzara takes at least 3 months to notice much of a change for the better.

Many people report good results from Kevzara for the treatment of PMR. I don't have any personal experience with Kevzara but I have experience with Actemra which is another biologic similar to Kevzara, By comparison, I was on Prednisone at higher doses for 12 years before I ever reached the bridge to more effective treatment with Actemra.

Jump to this post

Thank you very much for that feed back and sharing your experience. 12 years on Prednisone. Wow. People make u feel so bad about taking it, but it is a life line. I am so glad that u have found your bridge to another med. While not an athlete (my Mom always said I was clumsy) I have historically been pretty active. Walking my dog, riding my horse. I so want my life back. How r u doing with that now?

REPLY
Profile picture for wellsbjt @wellsbjt

I have gone into a flare twice. The flares are tough mentally, because they resulted in increasing the prednisone dosage (e.g. a reduction from 2.0 to 1.5, resulted in having to go back up to 2.5) so I can function. Currently, after 30 days at 2.5 and another 30 days at 2.0, I reduced the dose to 1.5 a few days ago. No pain so far, but really fatigued.

Jump to this post

Got it. Thank u for clarifying. And yes, the fatigue with this is pretty next level isn't it?

REPLY
Profile picture for tweetypie13 @tweetypie13

Note: I am 79yo.
My personal goal is to be in remission next year by my 80th bday.
My self tapering schedule was 10% a week if no discomfort. Easiest for me was alternate 5mg one day and 4 the next day which equals 4.5 total.
If not ok stay for 5-7 days until comfortable.
If no discomfort, then go to 4 every day.
Repeat.
As long as I have had PMR, I force myself to get exercise everyday. Minimum a 2 mi walk. I have a Corrective Movement Specialist, i,e, trainer/pt who keeps me moving.
With that said, she has been a HUGE help and my number one resource.
One of my drs sent me for Pool PT that was PT in a tank against jets which led me to pool walking which is easy on the body. I have taken advantage of Accupuncture, shock wave therapy, TVT (targeted vibration therapy). I have been throwing everything at the PMR except the kitchen sink. It has been a slooooowwwww road, by inches, with occasional big leaps. BTW: I do have problems with the weather, humidity dew point…..a trip to Alaska away from it and I was a new person.

So the answer to your question “ Did you notice help with pain and fatigue using….”……I have no clear answer.
DON’T give in!

Jump to this post

Thanks so much! Wonderful insight! I too have been fighting this with exercise and PT. What I hear you share here is so valuable. I will pursue this course of action. But most of all, staying mentally tough seems to be key!
Thanks again!

REPLY
Profile picture for toryf @toryf

So far, I have not noticed a difference with Kevzara since I have only been on it 2.5 weeks. I wish I could offer I better input. My experience with Prednisone withdrawal was that I went down 1mg per week starting from 20 mg. At 15 mg the pain and fatigue set back in. At 10mg the pain was do-able but constant and at 8 mg the pain was not tolerable. I am now back to 12 mg. The fatigue is brutal. But, again, I am early days with Kevzara. I do not intend to titrate down for at least another month.

Jump to this post

Good to know! I need these insights when asking my Rheumatologist questions.
Thank you for responding!

REPLY

I’m glad the KEVZARA is working for you and others! I seem to be the oddball here. am on 12.5 prednisone and was also on methotrexate. I recently started on KEVZARA along with the other two. The plan was to be taken off the methotrexate after one month and stay on KEVZARA while tapering off prednisone.
After taking my 2nd shot, my Rheumatologist called me and told me to discontinue the methotrexate and stop the KEVZARA injections as my WBC count dropped to 1.9 from normally 10-11. My side effect is the oddball out there. On a good note…I was feeling very positive and felt better taking those two shots! I’ll get there again, but have to get my WBC count back up first.

REPLY
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