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Posts (8)

Thu, Feb 20 7:18am · Autoimmune mystery in Autoimmune Diseases

Thinking about you and hoping your treatment/therapy is going well.

Mon, Jan 20 6:31pm · Autoimmune mystery in Autoimmune Diseases

Just checking in to see how you are doing. I know the first few days, which become weeks, can be overwhelming. Please try to take it a day at a time so you are not overwhelmed. You may not have heard about an important, sort of informal, way of dealing with chronic illness that may benefit you: https://www.healthline.com/health/spoon-theory-chronic-illness-explained-like-never-before#1 . Will help you, and your family help you, deal with this huge change in your life and lifestyle.

Fri, Jan 10 8:27pm · Autoimmune mystery in Autoimmune Diseases

Mostly back to normal, except occasional sometimes routine fatigue. And hot weather just does me in. I continued to work as I could at a significantly reduced % effort and doing a lot from home. Am still working very part time job in same field. Yard work went by the wayside as did housework but I never liked that anyway so this was a good excuse! I am in remission altho my primary doctor (a rheumatologist) doesn’t seem to like that term. I encourage you to completely take it easy for a few months to let your body focus on getting better. Also, ask to meet with a dietician who specializes in kidney disease to discuss your diet and what if anything needs to change. If the docs direct such a consult, your insurance should pay for it. Pls doesn’t hesitate to ask any questions or we can talk by phone when you’re up to it. Just take care of yourself and let your body heal itself.

Fri, Jan 10 8:15pm · Autoimmune mystery in Autoimmune Diseases

If you haven’t already done so, I encourage you to contact the Vasculitis Foundation 816.436.8211 and ask for their MPA brochure. Lots of good info on their website: https://www.vasculitisfoundation.org/

Fri, Jan 10 8:13pm · Autoimmune mystery in Autoimmune Diseases

Feeling great, most of the time. This has been going on since Oct 2015, I’m now 73. I have occasional flares which are treated with increases in steroids. No other toxic drugs since the original onset. Rituxan was repeated at the 2 year mark. I have been on steroids for the entire time. Lab work every month and an appt with 1 of 3 specialists every 3 months, more or less.

Fri, Jan 10 9:18am · Autoimmune mystery in Autoimmune Diseases

Yes, I had Rituxan with high steroids, followed by other toxic drugs for about 6 months. Plus whatever to address low hemoglobin count which took a long time to get to where it was consistently at a safe level. Tell her biopsy may be uncomfortable but not painful and over with quickly. Just try to relax during the procedure.

Tue, Jan 7 2:59pm · Autoimmune mystery in Autoimmune Diseases

I’m the sister referred to by Becky! I also have MPA with rental involvement diagnosed 4 years ago. Do you know what chemo drugs she will have? I took several that stopped the advancement of the kidney disease which is probably their main focus right now. After months of high powered drugs, things settled down to a new normal. Will be happy to discuss off line with you if that will help, Molly

Mar 3, 2019 · Radiation damage to small bowel in Digestive Health

I’m @becsbuddy ’s sister who relies on the UofM doctors to manage my problems. I think they’re great for a number of reasons, the most important being the different specialists (I see 2 primarily) talk to each other about their patients. And they can refer you to others within the system and they all confer with each other. I am gradually transferring all care to them, and seeing my primary care physician (PCP) between visits to Ann Arbor. The UofM doctors send detailed reports to my PCP and she, in turn, reports back to them after she she sees me. Best of luck and let me know if I can provide additional information.