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

Posted by dswilson913 @dswilson913, 6 days ago

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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vjm0223 | @vjm0223 | 1 day ago
In reply to @dswilson913 "@vjm0223 Thank you this was extremely helpful. It is tempting to stop taking prednisone when the..." + (show)
Profile picture for dswilson913 @dswilson913

@vjm0223 Thank you this was extremely helpful. It is tempting to stop taking prednisone when the original disease is controlled. The fatigue and brain fog are the worst.

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@dswilson913 yes it is tempting. Fortunately I haven’t experienced any fatigue the whole time. I’m about to go down to 2 mg in a week, so hope I don’t experience that. I have to wonder if it’s because I’ve been on low carbs for years.

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bbrass | @bbrass | 1 day ago
In reply to @vjm0223 "I think I posted this a while back. In case you didn’t see it, this may..." + (show)
Profile picture for vjm0223 @vjm0223

I think I posted this a while back. In case you didn’t see it, this may be helpful.
https://canadiancentreforaddictions.org/prednisone-withdrawal/

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@vjm0223 Thank you for linking that article. It was very informative.

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sslions | @sslions | 1 day ago

Thank you all for your comments. I am fortunate that due to a cancellation I will be able to see a rheumatologist on Monday, and then get a plan in place for an appropriate dosage of prednisone and a monitored tapering down.
So much great information shared here from people who have experienced it all.

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pmrnew | @pmrnew | 1 day ago
In reply to @vjm0223 "I think I posted this a while back. In case you didn’t see it, this may..." + (show)
Profile picture for vjm0223 @vjm0223

I think I posted this a while back. In case you didn’t see it, this may be helpful.
https://canadiancentreforaddictions.org/prednisone-withdrawal/

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@vjm0223 super helpful. Keeping this article for reference. Thanks

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brerabbit | @brerabbit | 1 hour ago

This was so helpful. Thanks for reposting. I had a pretty smooth experience from 40mg down to 3 on a monthly taper over 9 months. I was at 3mg when it hit and have begun the dreaded rollercoaster. It is the most challenging, crazy making part of PMR on this my second time around. At 83 it feels like “Really? Now? Will I outlive this?”

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pmrnew | @pmrnew | 8 minutes ago
In reply to @brerabbit "This was so helpful. Thanks for reposting. I had a pretty smooth experience from 40mg down..." + (show)
Profile picture for brerabbit @brerabbit

This was so helpful. Thanks for reposting. I had a pretty smooth experience from 40mg down to 3 on a monthly taper over 9 months. I was at 3mg when it hit and have begun the dreaded rollercoaster. It is the most challenging, crazy making part of PMR on this my second time around. At 83 it feels like “Really? Now? Will I outlive this?”

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@brerabbit wow!!! So sorry you are going through this at 83. Yuck. Yes, it is a rollercoaster. I was gonna try from 5MG down to 2.5MG today. Sore from back in gym 1st week since 6 months. Will taper over weekend and skip gym so I can know if it is PMR pain coming back. Hang in there. Walk in nature;-)

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