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.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

@oakwoman

Sorry you have this pain. You have had CTscans, MRIs and xrays but have they taken a biopsy of the sore areas? I have EGPA short for Polyarteriris nodosa & Eosinophilic granulomatosis with polyangitis. Whew! thats why I use the short name. Basically this thing has sores and bumps on my lower extremities that are very painful and at times my feet feel like their haveing hot flashes with electric shocks.
I hope you find some one to help you, I'd stick with the Rheumatologist but be careful with prednisone as it has side effects. I took prednisone for Polymyalgia* for 18 months and ended up taking myself off of it because i gained nearly 30lbs and ended up with weakened muscles and bones, also new was High BP. So beware.

Jump to this post

Thanks for the info. Funny you should mention biopsy. My wife's rheumatologist ruled out PMR (Polymyalgia rheumatica) after one round of prednisone (4mg pack) did not ease the pain. Research shows to rule out PMR some doctors use a biopsy of the temporal artery to make sure. She does have high rates of erythrocyte sedimentation rate (ESR or “sed” rate) and C-reactive protein (CRP) and her rheumy has agreed to reevaluate. FYI - as I have mentioned previously, when on a prolonged prednisone regime, many doctors prescribe high dose calcium and vitamin D to counteract effects of prednisone.

REPLY

Sorry for all you guys are going through. Ask if an EMG test might give insight into what is going on. I have CIDP and the EMG confirmed it after MS was ruled out via MRI. Talk to a neurologist (your rheumotalogist can suggest someone and they should work together on this). My rheumatologist was the one that steered me to neuro for a correct diagnosis and treatment. Good luck.

REPLY
@danawyn

Sorry for all you guys are going through. Ask if an EMG test might give insight into what is going on. I have CIDP and the EMG confirmed it after MS was ruled out via MRI. Talk to a neurologist (your rheumotalogist can suggest someone and they should work together on this). My rheumatologist was the one that steered me to neuro for a correct diagnosis and treatment. Good luck.

Jump to this post

Thank you for the advice. We have seen a neurologist, but he never mentioned an EMG. He referred us back to her rheumatologist, saying there is nothing he can "see" (from MRIs and bone scan) musculoskeletaly. Truly something we will bring up to the rheumy on our next visit. God bless you for taking the time to respond to our dilemma.

REPLY
@danawyn

Sorry for all you guys are going through. Ask if an EMG test might give insight into what is going on. I have CIDP and the EMG confirmed it after MS was ruled out via MRI. Talk to a neurologist (your rheumotalogist can suggest someone and they should work together on this). My rheumatologist was the one that steered me to neuro for a correct diagnosis and treatment. Good luck.

Jump to this post

I think seeking out a good Rheumatologist and Neurologist is a step in the right direction.
My Rheumatologist recommend I see a Neurologist when I was having trouble with my feet going numb. Good thing she did! I was diagnosed with PN this past month.
Pat

REPLY
@paktoledo

I think seeking out a good Rheumatologist and Neurologist is a step in the right direction.
My Rheumatologist recommend I see a Neurologist when I was having trouble with my feet going numb. Good thing she did! I was diagnosed with PN this past month.
Pat

Jump to this post

See another Neurologist who will do an EMG for you! Pat

REPLY
@twinsgyros

Thanks for the info. Funny you should mention biopsy. My wife's rheumatologist ruled out PMR (Polymyalgia rheumatica) after one round of prednisone (4mg pack) did not ease the pain. Research shows to rule out PMR some doctors use a biopsy of the temporal artery to make sure. She does have high rates of erythrocyte sedimentation rate (ESR or “sed” rate) and C-reactive protein (CRP) and her rheumy has agreed to reevaluate. FYI - as I have mentioned previously, when on a prolonged prednisone regime, many doctors prescribe high dose calcium and vitamin D to counteract effects of prednisone.

Jump to this post

I’m not sure 4mg of prednisone is high enough to be effective against a full blown case of PMR. Perhaps the rheumatologist could prescribe a higher dose ,( do the research to see how much) to see if it gives any relief. It sounds like PMR to me. I started with a much higher dose and had relief within 24-48 hours. Good luck!

REPLY
@alexmemphis

I’m not sure 4mg of prednisone is high enough to be effective against a full blown case of PMR. Perhaps the rheumatologist could prescribe a higher dose ,( do the research to see how much) to see if it gives any relief. It sounds like PMR to me. I started with a much higher dose and had relief within 24-48 hours. Good luck!

Jump to this post

Thank you. Believe me, we will be questioning the steroid level prescribed. God Bless.

REPLY

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.

REPLY

I wen through all of that after I stopped taking Methotrexate because it raised my liver count. Then a friend sent me the attached. I did not notice while on Methotrexate but I sure did after. I think time is all that is needed. It did finally go away. It can last months.
https://connect.mayoclinic.org/discussion/anyone-diagnosed-with-pmr-after-the-pfizer-vaccine/

REPLY
@cher51

I wen through all of that after I stopped taking Methotrexate because it raised my liver count. Then a friend sent me the attached. I did not notice while on Methotrexate but I sure did after. I think time is all that is needed. It did finally go away. It can last months.
https://connect.mayoclinic.org/discussion/anyone-diagnosed-with-pmr-after-the-pfizer-vaccine/

Jump to this post

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.

REPLY
Please sign in or register to post a reply.