My wife has autoimmune disease. She has inflammation in legs and arms.

Posted by twinsgyros @twinsgyros, Apr 25, 2023

Does autoimmune disease (Sjogrens, Lupus, Hashimotos) cause pain and inflammation in groin, legs, arms and shoulders ? She has had every image (1 xray, 5 MRIs and a bone scan) taken and has seen her primary, an orthopedic surgeon, ER doctors, rheumatologist. My wife has seen her rheumatologist and she ruled out PMR after one steroid regimen. Blood tests did show very high sed rate and creatine levels. She was finally referred to a pain management doctor along with his neurologist. They have ruled out any musculoskeletal and referred her back to her rheumatologist.

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@efgh1020

I would also suggest the arterial biopsy at the temple to rule out a cousin of PMR, Giant Cell Arteritis. Both can cause sudden blindness if the inflammation threatens the optic nerve. Steroids are a part of the ongoing treatment for both diseases. If you are near a teaching hospital or have an ophthalmologist you trust, go with your wife and let her give her history to them as soon as possible.
Although it is rare, I have a friend with PMR, and two with GCA. All of them have doctors monitoring them closely. One lost the sight in one eye in the early stages of being diagnosed with GCA. Good luck to you both, and I am glad for your tenacity in getting help.

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Thanks for the info. We have suggested the biopsy, but no response yet. As previously stated my wife's rheumy tried one round of steroids (4mg packet) and it did not work. We have been writing her about PMR, more and stronger steroids and an EMG. She will be reevaluating my wife at a new appt. P.S. My wife worked at a few doctor's offices and is well aware of the medical -merry-go-round that can occur sometimes. I am merely her trained bulldog. We won't give up. God Bless.

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@twinsgyros

Thanks for the info. We have suggested the biopsy, but no response yet. As previously stated my wife's rheumy tried one round of steroids (4mg packet) and it did not work. We have been writing her about PMR, more and stronger steroids and an EMG. She will be reevaluating my wife at a new appt. P.S. My wife worked at a few doctor's offices and is well aware of the medical -merry-go-round that can occur sometimes. I am merely her trained bulldog. We won't give up. God Bless.

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You each have an advantage —your wife in knowing how the medical system can bog down, and you in being a bulldog—an intrepid team!

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@twinsgyros

Interesting in that my wife cannot take Methotrexate (allergic reaction). Not sure about the post Pfizer reaction, but we truly believe she has the symptoms of PMR. Rheumy only tried one round of steroids (4mg) and ruled it out. She is going to reevaluate at our next appt. God Bless.

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I also have inflammatory arthritis. It gets worse and then better. When I eat spicy or sugary foods it really hits me at night and I cannot sleep. I wish her the best. You sound like a great husband. Take care.

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@twinsgyros I'm so sorry your wife's in such pain I can tell you a few things to help at home Ice is good for inflammation as well as swelling I use it all the time .Turmeric and ginger tea or capsules also Arnica tea great for pain I fell and have crushed nerves and lower back pain so I depend on all of these Your Dr,s know slot and help but they don't suggest these as there holistic .Feel better

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Special thanks to all the people who took the time to respond to my post. So you all know my wife has a follow up with her rheumatologist in June. In the meantime she had an appointment with her primary doctor and explained all that she has been through (7 images, orhtho, pain mgmt. doctor, neurologist) once again. Her primary prescribed her 10mg prednisone twice a day. Knock on wood, but she is feeling better !!! Hope this regimen continues to help her. More to follow. God Bless you all.

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@twinsgyros

Thanks for the info. We have suggested the biopsy, but no response yet. As previously stated my wife's rheumy tried one round of steroids (4mg packet) and it did not work. We have been writing her about PMR, more and stronger steroids and an EMG. She will be reevaluating my wife at a new appt. P.S. My wife worked at a few doctor's offices and is well aware of the medical -merry-go-round that can occur sometimes. I am merely her trained bulldog. We won't give up. God Bless.

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Sounds like PMR symptomatically . Most start with pred 20:to 25mg. I’ve been on 20 since Jan. Tried to reduce to 15 and now back to 20 . From all credible info and my rheumatologist, it’s important to start at a dose that will stop the pain and inflammation for the most part and reduce VERY slowly

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@gmanurse

Sounds like PMR symptomatically . Most start with pred 20:to 25mg. I’ve been on 20 since Jan. Tried to reduce to 15 and now back to 20 . From all credible info and my rheumatologist, it’s important to start at a dose that will stop the pain and inflammation for the most part and reduce VERY slowly

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Hello @gmanurse, Great advice, I wished more primary care docs understood PMR a little better and the importance of treating the symptoms and not focusing on getting off of prednisone ASAP. It's a given that none of us want to be on prednisone for a long time but not managing the symptoms extends the time on prednisone. I saw the following tapering plan on another site which I wished I would have known about with my first round with PMR.

--- Dead slow and nearly stop reduction plan (Tapering)
https://healthunlocked.com/pmrgcauk/posts/131189593/dead-slow-and-nearly-stop-reduction-plan

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@lioness

@twinsgyros I'm so sorry your wife's in such pain I can tell you a few things to help at home Ice is good for inflammation as well as swelling I use it all the time .Turmeric and ginger tea or capsules also Arnica tea great for pain I fell and have crushed nerves and lower back pain so I depend on all of these Your Dr,s know slot and help but they don't suggest these as there holistic .Feel better

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Arnica cream can help pain as well. I use it whenever I have a sore muscle.
The spices mentioned also are helpful and can be added to. foods you cook.
You might also take a look at the anti inflammatory diet. It’s surprising sometimes how food we consume is critical to our well being.
Best to you and your wife.

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The areas affected make it seem like PMR. Most people with it are started at 15 to 30 mg of Prednisone; 4 seems much too low.

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@gmanurse

Sounds like PMR symptomatically . Most start with pred 20:to 25mg. I’ve been on 20 since Jan. Tried to reduce to 15 and now back to 20 . From all credible info and my rheumatologist, it’s important to start at a dose that will stop the pain and inflammation for the most part and reduce VERY slowly

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Thanks so much. We are going to see her rheumy in two weeks and see if she advises a higher dose. Still kinda dumbfounded that it took her primary to try a higher dose of prednisone and not her rheumatologist. God Bless.

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