1. < Polymyalgia Rheumatica (PMR)
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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.

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tweetypie13 | @tweetypie13 | Sep 4 3:20pm
In reply to @toryf "Thank you for all of that information! I do not feel so alone now. I will..." + (show)
Profile picture for toryf @toryf

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.

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Been there, done that, have the t shirt, so to speak.
I owe this group almost as much as my personal trainer.
My pleasure.

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csimmonds | @csimmonds | Sep 4 5:30pm
In reply to @tweetypie13 "Note: I am 79yo. My personal goal is to be in remission next year by my..." + (show)
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!

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I am 77 yrs old and just finishing my first prednisone cycle. I started with 30 in March and am now down to 5mg and doing fine. I feel a bit more pain and stiffness in back and shoulders but Tylenol takes care of it. I see my rheumatologist next week and am not sure where she will recommend we go next. I assume continue to taper and see how I do. My question--are there specific exercises for PMR or are there exercises to avoid? Is it a good idea to get some PT and would that help to prevent flare ups?

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tweetypie13 | @tweetypie13 | Sep 4 6:08pm
In reply to @csimmonds "I am 77 yrs old and just finishing my first prednisone cycle. I started with 30..." + (show)
Profile picture for csimmonds @csimmonds

I am 77 yrs old and just finishing my first prednisone cycle. I started with 30 in March and am now down to 5mg and doing fine. I feel a bit more pain and stiffness in back and shoulders but Tylenol takes care of it. I see my rheumatologist next week and am not sure where she will recommend we go next. I assume continue to taper and see how I do. My question--are there specific exercises for PMR or are there exercises to avoid? Is it a good idea to get some PT and would that help to prevent flare ups?

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Well done. As for exercise and PT….ask your dr. to recommend. Go for it. There are no rules for this journey.
I have worked out daily golfed hiked biked etc for 25 yrs.
As I said above, 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.
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.

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toryf | @toryf | Sep 4 6:52pm
In reply to @pike01 "I’m glad the KEVZARA is working for you and others! I seem to be the oddball..." + (show)
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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.

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I hope your blood work gets back in order right away so that I can start back on treatment.

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toryf | @toryf | Sep 4 7:30pm

I am sorry. So that U can get back on track.

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jabrown0407 | @jabrown0407 | Sep 5 6:38am
In reply to @wellsbjt "I have gone into a flare twice. The flares are tough mentally, because they resulted in..." + (show)
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.

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Possibly you need to transition to a reduction. What I learned to do the first time was to talk the higher dosage on day one, then the lower dosage on day two, then the higher dosage on day 3, than the lower dosage on day 4. I would repeat the cycle until I felt good - then I would move to the lower dosage as a steady amount. At 2.0 mg to 1.5mg is a 25% drop in dosage. moving from 5mg to 4mg is only a 20% drop. If you look at it in percentage of the drop it may be easier to understand what you are asking of your body. You need to understand that between 10mg and 5mg you are at the level that your adrenal glands need to kick in and pick up the slack. Read up some on adrenal insufficiency both here and Dr Google. It is not uncommon to confuse the pain at this level to be a flare when it is really associated with the adrenal glands not filling in at the rate you are dropping. My Rheumy's NP says they have a few patients who just cannot get below 2mg. Talk to your doctor so they know and possibly can coach other approaches as well. Everyone's journey is unique, that is the one dependable fact.

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kathren | @kathren | Sep 5 8:42am

Dear Toryf,
I "feel" your pain! I was started at 20mg but told to drop after a week to 15, then 12 1/2, etc.
I had a severe case, unable to dress, get out of bed without my husband's help, lay for hours wrapped up like a mummy on the couch under three layers of clothes and three layers of blankets as my body shivered with inside chills, and so on. By six pm I felt better but was back in bed by 8:00 pm, and fortunately able to sleep as I tapered down a mg. or 1/2 mg. each month. Then waking up at 5:00 am.
FINALLY, after nine months I was given methotrexate which relieved me by the third month. After 18 months I am pain free from PMR.
I bet the Kevzara will help. Just give it time and know you have a whole company of folks here that are sending you well wishes and prayers for relief.

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toryf | @toryf | Sep 5 11:15am

Thank you! I am so glad to hear of the relief u have. It's crazy the amount of pain, isnt it. People don't understand. I wouldnt have understood what u relenting pain was like until I had it. Again sp glad for your relief!

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kathren | @kathren | Sep 6 8:46am

You will find relief. It takes time for the medicines to work along with watching our diets and doing what little walking, yoga or exercise we can do comfortably- wasn't much for me until the Methotrexate gave relief.
I did a lot of reflecting on my life- changes in attitude, praying and enjoying whatever "highs" came through during this period in life. I had "time" to re-evaluate" my life...
Courage in the struggle. There really is the proverbial "light at the end of the tunnel" with PMR.
You will overcome!!

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toryf | @toryf | Sep 6 10:49am
In reply to @kathren "You will find relief. It takes time for the medicines to work along with watching our..." + (show)
Profile picture for kathren @kathren

You will find relief. It takes time for the medicines to work along with watching our diets and doing what little walking, yoga or exercise we can do comfortably- wasn't much for me until the Methotrexate gave relief.
I did a lot of reflecting on my life- changes in attitude, praying and enjoying whatever "highs" came through during this period in life. I had "time" to re-evaluate" my life...
Courage in the struggle. There really is the proverbial "light at the end of the tunnel" with PMR.
You will overcome!!

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Thank you for the inspirational words of encouragement. What everyone here says means so much as I know u understand the struggle. Thank you.

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