1. < Polymyalgia Rheumatica (PMR)

Confused: Tapering vs cold turkey stopping prednisone

Posted by becky72 @becky72, Jan 14, 2023

I was hoping to get some help here. I posted the topic “had pmr since Dec. 4. Was really desperate but now I find it has been removed. Don’t have a clue as to why. Would appreciate it if anyone could tell me. My question was should I taper off 20 mg of prednisone or stop cold turkey as my doctor told me to. I’m in a tremendous amount of pain as you all well understand. Thanks for any input

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becky72 | @becky72 | Jan 24, 2023
In reply to @ctjpmarie "I certainly would not go cold, turkey being on 20 mg. I have repeatedly heard that’s..." + (show)
@ctjpmarie

I certainly would not go cold, turkey being on 20 mg. I have repeatedly heard that’s what you’re not supposed to do you’re supposed to taper off.

With that said, I see a lot of conversations about pain and let me share that my husband he was just diagnosed In Oct. was on a scale of one to 10 at at eight. The prednisone took him down to a five.

We added in supplements to take down inflammation, and has brought the pain level down to a three.

You really need to discuss this with your doctor or certainly get a naturalist who can make good recommendations as to take him down inflammation.

My husband now takes

Omega-3 twice a day
Vitamin D3 with K2-with food
Magnesium is huge for pain, relief!
Calcium citrate-with food
B complex (Jarrow B-Right) with food.

Good luck to all! It’s important to understand vitamins whether they are water, soluble, or fat soluble in what that means.🙏🏻 It’s very important to understand.

He didn’t get on the supplements until just a couple weeks ago and already has seen a better improvement. I expect after two months it should be even better.

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I have some of supplements your husband is on. I am seeing an acupuncturist, however my primary doctor who wants to stop me cold turkey after ten days on 20 says I shouldn’t takebthem because I am on blood thinner . Don’t know what I will do about stopping prednisone….can’t get into new doctor for a few weeks.Thank you for info…..I also want to try that low dose LDN drug. Inthink my primary doctor knows so little about heart and prednisone. Gotta get outta there

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1 reply
ctjpmarie | @ctjpmarie | Jan 24, 2023
In reply to @becky72 "I have some of supplements your husband is on. I am seeing an acupuncturist, however my..." + (show)
@becky72

I have some of supplements your husband is on. I am seeing an acupuncturist, however my primary doctor who wants to stop me cold turkey after ten days on 20 says I shouldn’t takebthem because I am on blood thinner . Don’t know what I will do about stopping prednisone….can’t get into new doctor for a few weeks.Thank you for info…..I also want to try that low dose LDN drug. Inthink my primary doctor knows so little about heart and prednisone. Gotta get outta there

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It’s really hard to find confident doctors when you don’t live near a big city. I wish you the very best of luck. Try to educate yourself through medical articles about stopping prednisone quickly.😉😍 if he was only on them for 10 days that might be a different story I just don’t know.

Which one of the supplements that I listed are you guys on?

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becky72 | @becky72 | Jan 25, 2023

Vitamin d, magnesium, and omega 3……..have been told by a friend that Serrapeptase is Ann important one too.

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suetex | @suetex | Jan 25, 2023
In reply to @becky72 "This is a horror story which only confirms what I now believe……most doctors and veterinarians don’t..." + (show)
@becky72

This is a horror story which only confirms what I now believe……most doctors and veterinarians don’t have a clue as to what is wrong with you or what to do. It is a crap shoot.some get the rare docs who really care….sone don’t.mi am so glad you finally got help. I am into this only two months. Cannot imagine six months of that kind of pain. The people I have talked to about it seem to think it is a few arthritic aches and pains. I stopped talking to anyone about it. Again so glad you found help.

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Sadly, I was with a well thought of rheumatologist for 4 years and PMR was never even mentioned as a possibility. I finally switched docs and the new one took 15 minutes. I have been with him 2 years and he is such a poor comunicator I am going to try another one near by. At least I know what to ask now.

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sharonanng | @sharonanng | Jan 25, 2023
In reply to @becky72 "This is a horror story which only confirms what I now believe……most doctors and veterinarians don’t..." + (show)
@becky72

This is a horror story which only confirms what I now believe……most doctors and veterinarians don’t have a clue as to what is wrong with you or what to do. It is a crap shoot.some get the rare docs who really care….sone don’t.mi am so glad you finally got help. I am into this only two months. Cannot imagine six months of that kind of pain. The people I have talked to about it seem to think it is a few arthritic aches and pains. I stopped talking to anyone about it. Again so glad you found help.

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I also have stopped talking about it for the same reasons as you. People respond with things like, "oh I have pain like that, too." No one thinks I have any issues because I look alright. I only talk to my family about PMR and where I am. A good reminder that we never know what another person is going through. Just be kind.

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bradninchgirl | @bradninchgirl | Jan 25, 2023
In reply to @martiesowers "When my PMR started I had beenseeing a rheumatologist for 6 months - in her office..." + (show)
@martiesowers

When my PMR started I had beenseeing a rheumatologist for 6 months - in her office cryin in paintwie she kept sayig I had to wait fo r the medicne to work. Called my primaruy who sent me to the ER. Two injections of morphine did not east the pain so I was admitted. My primary care doc put me on methylprednisolone by injection and in 10 minutes I felt relief! Rhumatologist call.ed my primaty while he was at bedside screaming why di he put me on methylpednisolone. He told her because she was not helping me. No rheumatologist at hospital an after 10 days of trying to change hospitals (it was during covid) my daughter took me to SC to rheumay there who immedately diagnosed the PMR. I say this because all theumatologists are no knowledgable abut PMR. I should hav been being treated correctly for 6 month before - instead I sufferred needlessly.

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i understand what you have gone through martiesowers. But with me it wasn't the doctors but my own stubbornness that I had to fight. I kept insisting that I could fight through the pain. I agree, doctors don't seem to know much about what is becoming a more frequent illness in the older generation. I have been given everything from "don't take your self so seriously' to "get a hobby". Until the pain was so bad it couldn't be ignored any longer. It was the slow, exceptionally heavy heart beats that sent me to the doctor in the end. But, it was a Physicians Assistant that eventually diagnosed it and sent me to the rheumatologist. I have helped myself by doing all the research I can get my hands on. Which is how I came across this forum. The best aid I found was good quality Magnesium. One that has three ingredients and D3. I was already coming out of PMR but the Mag capsules was a turning point for me.

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bradninchgirl | @bradninchgirl | Jan 25, 2023
In reply to @sharonanng "I also have stopped talking about it for the same reasons as you. People respond with..." + (show)
@sharonanng

I also have stopped talking about it for the same reasons as you. People respond with things like, "oh I have pain like that, too." No one thinks I have any issues because I look alright. I only talk to my family about PMR and where I am. A good reminder that we never know what another person is going through. Just be kind.

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Autoimmune illnesses have earned the name "the invisible illness" for the way it brings you down on your knees but leaves you looking almost healthy. No one believes what you are going through.

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suetex | @suetex | Jan 26, 2023

I have had a recent inspirational experience I would like to share- and an educational one as well. My old dog had a stroke and for several days she looked really bad. But by the 3rd day she stood up (!) and seem to say "I'm ready to get to work now". You've heard the expression "dogged determination"? Well, now I know where that comes from. Her progress is exceptional. The educational part was the discovery of the Green Lipped Mussel extract. We are having to find an substitute for the doggy NSAID we have had her on for her hips and the vet gave us this. The science is excellent so I ordered some for my husband and me. I will let you know if it helps. Look it up.

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becky72 | @becky72 | Jan 26, 2023

I am interested and have heard about it, but am on eliquis. So many of these supplements seem to cause bloody thinning . Does anyone take supplements and is on blood thinner?

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suetex | @suetex | Jan 27, 2023

The vet wants to put our dog on a blood thinner after the NSAID has cleared her system. Since the vet provided the green lipped mussle suppliment I will ask this question if the two are a good match. I am not on a blood thinner myself, so don't worry about it. But for my dog, I want to know. So I will share when I find out.

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