Sjorgrens and RA

Posted by shinesun2468 @shinesun2468, 4 days ago

I was diagnosed with Sjorgrens and RA 3 years ago. Over the past year it has gotten worse. I ache like the flu daily and run a low grade fever. My rheumatologist ( my 3rd) only has me on plaquenel. For the past 3 weeks I take 4 ibuprofen and two Tylenol then lay down n a heated blanket and cry until the aches subside. Sjorgrens has gone after my kidneys so I am on medication to protect my kidneys since I have proteinuria. I am at a loss of how to get these aches to stop. And I keep hitting road blocks with all of my doctors. Any advice or any other specialist referral would be much welcomed. I do not know what else to do.

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alicevondall | @alicevondall | 4 days ago

Pace yourself and take all lot of breaks. Exhaustion hits fast.
Try eat healthy foods
I walk a mile a day. Important to keep blood circulating. All those pills are hurting your liver.
Ugh! But sometimes you have no choice. Diet, exercise, gentle stretching, rest, avoiding stress as much as possible. I found tons of info on UTube . I do stretching and light weights w UTube. Last- a 5day prednisone pk may get you on your feet and help you start a good regime . I use it rarely but when the pain is bad, I use it. Lifting you up in prayer. I know this is miserable. Just really educate yourself and make wise choices.

Becky, Volunteer Mentor | @becsbuddy | 3 days ago

@shinesun2468 Welcome to Mayo Clinic Connect! I am so glad that you have reached out to us. Members will be so glad to help you. I urge you to call a comprehensive medical center or university teaching hospital in your area. The doctors there should be able to help you. They are focused on good care and research.
Do you have anyone at home who is able to help you?

shinesun2468 | @shinesun2468 | 3 days ago

Hello. Thanks for the advice. That is going to be my next stop. But I do need to get an MRI of my thoracic and lumbar. When I lay down to sleep if I lay my hands on my chest they start to go numb. And I’ve noticed if I squat down to pet the dogs or pick up something my legs go weak every now and then. My parents live 20 minutes away and my boyfriend is here and my almost 10 year old son if I need help. Boyfriend travels for work but I have great neighbors if it’s an emergency.

suetex | @suetex | 3 days ago

I'm glad that you do have someone and you have received some great advice. I was diagnosed with Sjogren's about 4 years ago and put on Hydroxyquolriquen (sp?) But then I was put on IvIg and taken off the drug. IvIg is the only thing they have for Sjogren's but there are drugs in the works. IvIg is expensive if you are not on Medicare or have good insurance. If your rheummy won't try you on something for the RA I would want to Know why. If the answer doesn't satisfie then get another rheummy. I think I have RA too but haven't gone down that road yet.

shinesun2468 | @shinesun2468 | 3 days ago

My rheumatologist has only ever given me plaquenel. The next step they say is methotrexate and that has a lot of side affects. But they never offer anything else just a 8 day taper of steroids which do nothing. My MRI is scheduled for the 20th for my spine. Hoping nothing terrible is going on. If it’s clean then I’ll look at a 4th rheumatologist lol.

sbhubb107 | @sbhubb107 | 2 hours ago

You have 4 rheumies???!!! Count your blessings. We have 3 locally and NONE are accepting new patients. Teaching hospital? Have a fabulous one 150 miles away. Am on the books for diagnosis January, 2026 with labs in hand for positive ANA, Sjogrens, and RA. In the meantime, so Grateful for Mayo and the information I’m gathering from the experience of others.

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