1. < Polymyalgia Rheumatica (PMR)
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Prednisone withdrawal and Unlikely Additional Symptoms

Posted by dswilson913 @dswilson913, Apr 27 2:27pm

I am down to 2 mg of prednisone. Really struggling. On Day 10 of 10 at 2 mg. Tomorrow alternating 1 mg 2 mg for 10 days. Fatigue so significant after sitting down after few minutes. Pmr seems controlled. No stiffness, fuctional and range of motion intact. Problem fatigue, pain increasing and additional issues pain in hips. Wasn't part of original issue that was shoulder arms. Difficult swelling feels like lump in throat. X-ray revealed metal hernia. Am I making these symptoms up. Oh, dizziness is new and brain fog uptick.

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kjoed53 | @kjoed53 | 17 hours ago
In reply to @betsyhase "@kjoed53 I have heard that an anti-inflammatory diet would help ease the symptoms and milk products..." + (show)
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@kjoed53
I have heard that an anti-inflammatory diet would help ease the symptoms and milk products are one of the ingredients that are considered inflammatory. I do everything organic these days and a pretty clean diet but like milk in my coffee. I have a few other dairy products I like and am struggling with eliminating. I don't eat alot of them but I have read from others here the importance of cleaning up your diet. A few dairy products are my main battle.

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@betsyhase
I think there's a lot of misinformation and an incomplete understanding of dairy. Researchers are even being surprised by the benefits of dairy fat, and the issues with the additives in some low fat and no fat products. I believe in a balanced diet, while avoiding the processed and ultra processed foods. I won't use any of the sugar substitutes whether natural or not because they have not been properly researched over an extended period of time. It seems that there's more time spent researching ways to make money off everyone's food paranoia than there is on the actual research of the effects of those money making products on us with long term use.

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betsyhase | @betsyhase | 16 hours ago
In reply to @kjoed53 "@betsyhase I think there's a lot of misinformation and an incomplete understanding of dairy. Researchers are..." + (show)
Profile picture for kjoed53 @kjoed53

@betsyhase
I think there's a lot of misinformation and an incomplete understanding of dairy. Researchers are even being surprised by the benefits of dairy fat, and the issues with the additives in some low fat and no fat products. I believe in a balanced diet, while avoiding the processed and ultra processed foods. I won't use any of the sugar substitutes whether natural or not because they have not been properly researched over an extended period of time. It seems that there's more time spent researching ways to make money off everyone's food paranoia than there is on the actual research of the effects of those money making products on us with long term use.

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@kjoed53
I agree. I guess I am alittle in panic mode just trying to do what is best. 3-4 years ago I really cleaned up my diet to Organics as much as possible and lost 20 lbs and felt pretty good then bam, I start falling apart with one thing after another.
Depressing!

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kjoed53 | @kjoed53 | 15 hours ago
In reply to @betsyhase "@kjoed53 I agree. I guess I am alittle in panic mode just trying to do what..." + (show)
Profile picture for betsyhase @betsyhase

@kjoed53
I agree. I guess I am alittle in panic mode just trying to do what is best. 3-4 years ago I really cleaned up my diet to Organics as much as possible and lost 20 lbs and felt pretty good then bam, I start falling apart with one thing after another.
Depressing!

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@betsyhase
It's called survival...lol. if we eliminate everything that someone else thinks is bad for us then we will starve. I eat very little red meat but on the few occasions we go out I will have a hamburger, steak or ribeye. I have both PMR and SMM so I can't enjoy the occasional beer right now but I refuse to give up my coffee and cream. I will even have the occasional Italian sub sandwich even though the processed meats are not good for me, except they are all vital to my mental happiness. What good is living longer but not enjoying life?

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betsyhase | @betsyhase | 13 hours ago
In reply to @kjoed53 "@betsyhase It's called survival...lol. if we eliminate everything that someone else thinks is bad for us..." + (show)
Profile picture for kjoed53 @kjoed53

@betsyhase
It's called survival...lol. if we eliminate everything that someone else thinks is bad for us then we will starve. I eat very little red meat but on the few occasions we go out I will have a hamburger, steak or ribeye. I have both PMR and SMM so I can't enjoy the occasional beer right now but I refuse to give up my coffee and cream. I will even have the occasional Italian sub sandwich even though the processed meats are not good for me, except they are all vital to my mental happiness. What good is living longer but not enjoying life?

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@kjoed53
Thank you!
All good points!
All my other labs show that I am very healthy.
I now just want to be able to function without so much pain.

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pmrsuzie | @pmrsuzie | 11 hours ago

I have Meniere's Disease along with pmr . Because Meniere's is closely linked with migraines I am following migraine and anti-inflammatory diets. No caffeine, salt, alcohol. I have had to give up a LOT of what I used to enjoy and no decaf either. I drink herbal tea, mostly chamomile. If you drink coffee and need milk try oat milk - there are varieties of it. No/low salt pretty much limits eating out. The only acceptable cheeses are cottage cheese, cream cheese, American cheese. No pizza.
I am doing vestibular rehabilitation therapy right now.
I would love to have a McDonald's frappe or vanilla iced coffee but not any more.

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emrose | @emrose | 5 minutes ago
In reply to @kjoed53 "@emrose Your leg muscles could be dehydration or potassium deficiency. When mine do that I eat..." + (show)
Profile picture for kjoed53 @kjoed53

@emrose
Your leg muscles could be dehydration or potassium deficiency. When mine do that I eat a banana and drink some water or Gatorade. I have very short episodes of low oxygen during sleep several times a week. My heart rate goes up at times which I blame on prednisone. I take meds for AFib, PVCs and PACs, as well as BP. I was adjusting them when I was on 25mg prednisone but I'm tapering down now so it's harder to manage. Both my sleep and activity are affected by PMR and prednisone. Fatigue is expected while I'm tapering. I have to taper off prednisone because I have SMM and I can't get a true risk factor on prednisone. I would think that the stress on the body from tapering down any of the PMR meds is going to cause symptoms for us. I'm doing 10 day tapers and by day 7 I feel better. I think the important thing in tapering is to listen to your body.

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@kjoed53
I will bring up my concerns with rheumatologist next week.
Results from yesterdays blood draw are pretty good overall. My potassium was actually just obover normal.
My SED rate went from 7 in February to 41 now. Not terribly high for me, but i wonder if that will slow down my tapering.
I have struggled with dehydration for months, despite all the water i drink. I blame that on the prednisone.
I do have a minor issue with occasional tachycardia, but not taking meds at this time.
Im lucky i dont have as many complications as you, this just seems be constantly changing with new symptoms all the time.

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