1. < Polymyalgia Rheumatica (PMR)
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Pmr and no drugs

Posted by teresag1 @teresag1, 5 days ago

Has anyone managed pmr without drugs? I have severe glaucoma and can’t do prednisone. Recommended Kevzara but I’m afraid of it. Right now my morning pain is not bad and eases up mid morning.

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teresag1 | @teresag1 | 4 days ago
In reply to @caroljeand "I have been on Kevzara since last November and have to say that I appreciated getting..." + (show)
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I have been on Kevzara since last November and have to say that I appreciated getting off prednisone within 6 months as it caused severe digestive issues for me. I am just getting over the devastating effects of the acid reducers and ant acids that caused secondary problems from overuse. I had no idea that I was doing damage all the while I was on them, and wondering why I wasn’t feeling better or getting relief.
As long as you make sure you are cleared of any gut side effects of kevzara you should be fine. That is most serious consideration.
Best wishes in your journey.

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@caroljeand
Thank you for your reply! Wishing you the best!

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teresag1 | @teresag1 | 4 days ago
In reply to @kjoed53 "I was diagnosed with PMR in March and SMM in May. I have been doing a..." + (show)
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I was diagnosed with PMR in March and SMM in May. I have been doing a fast taper off prednisone because of the SMM and using 3mg LDN as a bridge to kevzara, which I started 3 weeks ago. I'm only on 4.5mg prednisone now. My sister had PMR a few years ago and because of her fear of prednisone she would only take ibuprofen. It did very little for her but she stubbornly refused to take anything else. It took over a year for her pain to go away.

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@kjoed53
Thank you so much for your reply! I’m like your sister- I’m afraid of all drugs. That gives me hope that I can do this without drugs. Please keep me informed how you and your sister are doing! Best wishes to both of you!

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tweetypie13 | @tweetypie13 | 4 days ago
In reply to @teresag1 "@kjoed53 Thank you so much for your reply! I’m like your sister- I’m afraid of all..." + (show)
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@kjoed53
Thank you so much for your reply! I’m like your sister- I’m afraid of all drugs. That gives me hope that I can do this without drugs. Please keep me informed how you and your sister are doing! Best wishes to both of you!

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@teresag1 I, too, hated taking drugs……that changed
Note: the communication with my dr was not good. He neglected telling me “that by going ON the biologic Kevzara, it would help me taper OFF of Prednisone “
Once that was understood, it was a game changer.
Also, I learned much later in the process that Tylenol for ARTHRITIS is a good supplement/alternative when in pain.

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54pontiac | @54pontiac | 4 days ago

Before I was diagnosed with PMR, doctors prescribed Meloxicam, which is an NSAID. I did not think it was doing much, but when I went off it to prepare my body for prednisone, I realized it was helping quite a bit.

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boomermeg | @boomermeg | 4 days ago
In reply to @clendenin "@boomermeg where is your pain? I would absolutely go talk to your doctor about upping the..." + (show)
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@boomermeg where is your pain? I would absolutely go talk to your doctor about upping the dose even more. I started out with 60 mg, which knocked out the pain let me tell you. The PMR pain is mostly in between my shoulder blades. But when it reaches the buttocks, and I have trouble sleeping, eating or resting upright, then it’s a problem. I’ve been back and forth on what to take and what to do for fear of side effects. It seems to come on seasonally too. Right now being quite high in the discomfort zone. Mineral epsom salt baths really help. I hope you find relief! Tell your dr about your pain levels!

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@clendenin Thanks. I see my Rheum Dr in 3 weeks. So far it's the left shoulder/arm/fingers not responding as well as the rest of my body. Symptoms and pain are so much better, if not resolved in rest of body.
I've been on the upped 20mg dose almost 1 week, so will let her know the left still isn't responding enough. I hope to get pain fully under control, as it's been brutal especially prior to any Prednisone, then hope to start tapering too if Dr agrees to try to prevent bad side effects. But one thing is for certain, I do not want to live with this brutal incessant pain anymore. I realize tapering can cause flare ups so I'm praying I don't experience those but am realistic about the possibility. Thanks again.

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teresag1 | @teresag1 | 4 days ago
In reply to @tweetypie13 "@teresag1 I, too, hated taking drugs……that changed Note: the communication with my dr was not good...." + (show)
Profile picture for tweetypie13 @tweetypie13

@teresag1 I, too, hated taking drugs……that changed
Note: the communication with my dr was not good. He neglected telling me “that by going ON the biologic Kevzara, it would help me taper OFF of Prednisone “
Once that was understood, it was a game changer.
Also, I learned much later in the process that Tylenol for ARTHRITIS is a good supplement/alternative when in pain.

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@tweetypie13
Right now Tylenol Arthritis and ibuprofen are all I’m taking. Hopefully I can manage with just these . Hope Kevzara works for you!

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teresag1 | @teresag1 | 4 days ago
In reply to @54pontiac "Before I was diagnosed with PMR, doctors prescribed Meloxicam, which is an NSAID. I did not..." + (show)
Profile picture for 54pontiac @54pontiac

Before I was diagnosed with PMR, doctors prescribed Meloxicam, which is an NSAID. I did not think it was doing much, but when I went off it to prepare my body for prednisone, I realized it was helping quite a bit.

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@54pontiac
Haven’t heard of that one. I’ll check it out. Thnx

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tweetypie13 | @tweetypie13 | 4 days ago
In reply to @teresag1 "@tweetypie13 Right now Tylenol Arthritis and ibuprofen are all I’m taking. Hopefully I can manage with..." + (show)
Profile picture for teresag1 @teresag1

@tweetypie13
Right now Tylenol Arthritis and ibuprofen are all I’m taking. Hopefully I can manage with just these . Hope Kevzara works for you!

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@teresag1 Big Sucess so far

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suetex | @suetex | 3 days ago

I have a question that I want all with experience to PMR to think about. I have had PMR and been treated successfully (Pred) for it so I do have something to compare it to. I had a mediport installed and the surgeon used a general anesthesia to which I had a reaction to just shortly after I woke up. It was like PMR but much worse. I could barely get out of bed to use my potty. I didn't take anything for it. Didn't want steroids and complained to any medical person who would listen. Lasted about 4 days and then started letting up. Anyone else?

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salgalincal | @salgalincal | 3 days ago

3 1/2 years ago the pain became so bad I could barely move. Shoulders, neck, upper back, upper arms, hips, thighs & buttocks. Painful to sit on anything. Started on 20 mg pred, then added MTX and folate. Took a while for that combo to kick in and start relieving pain. Finally relief and have been slowly tapering since. Now on final weeks of taper process and had testing for adrenal function. In normal range and I’m looking forward to putting this all behind me. It has not been easy. Keep moving…that is key! Also PATIENCE with your body.

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