How many of y’all have an autoimmune disorder? I’ve seen numerous posts over the years by individuals dealing with one form or another, either personally or through a spouse/loved one/friend. My family and I have recently started down what appears to be a very long path of uncertainty, discovery, and diagnosis for what may or may not turn out to be an autoimmune disorder, more specifically Lupus. I’ve somewhat recently started experiencing symptoms of fatigue, joint pain, headaches/“mental fog”, and some unexpected weight loss. I was already dealing with ongoing lower back issues so when these symptoms began it was mentally overwhelming and we decided to start getting input from doctors. Autoimmune came up in conversation pretty quickly and a relatively generic blood panel was ordered. My results came back this week and I’m positive for anti-DNA antibodies which as I currently understand it is one of several requirements for a Lupus diagnosis. I’m putting the cart before the horse a bit but since I have other symptoms that are on their 10pt diagnostic criteria I can’t help but assume there’s a high probability this is where we end up. Rheumatologists are hard to get an appointment with these days so I figured I’d try to find a sounding board while we wait for an opening. Anyone dealing with similar issues? I’d like some input as to what I should expect, do’s and dont’s, etc.
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I am HLA-B27 positive. It's generic. And doesn't always show up in parents or grandparents. And I've had a host of side effects. Mostly from Ankylosing Spondylitis. But also from Irises(sp) (white blood cells attack the iris of the eye) and some RA Psoriasis. As well as some digestive issues. My T-6 through T-9 have been solidifying into a solid piece of bone in my back. As well as my L4-5. Got a bunch of bone spurs in my shoulders and hips. Been trying to get on Humira for the last two years. Covid stopped me the first time due to the drug lowering white blood cell count. This time, kidney cancer in my right kidney. I'll be seeing the doc today for that. Had a treatment 3 weeks ago on it. Hope to get released this afternoon. And maybe fish tomorrow?
I've been looking forward to getting on Humira. The inflammation attacks can be debilitating to the point I can't walk or do anything else sometimes. But it's not recommended for peeps with any type of cancers. As it lowers the body's immune response to disease. So I've been kinda stuck between a rock and a hard place for a while, just using OTC anti-inflammatories (which can be hard on the kidneys).
I hope and pray the best for you Lil brother. -
My Wife over the past 2 years has been diagnosed with,
(CVID)-Common Variable Immune Deficiency
(WAHA) - Warm Auto Immune Hemolytic Anemia
Psoriatic Arthritis.
Been a struggle on her and the Family; we have had to make adjustments and come to the conclusion that she will never work in the medical field again and will more than likely be a stay ay home mom as she is very limited as to what she can and can not do.
Prayers for you and your family...Comment
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Dang, Randall. I am sorry to hear you are having to deal with this...whatever it turns out to be! No help here, but I'll surely send up a prayer for you and your family!Comment
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Did you get a covid vaccine? If so, which brand? Did symptoms start before or after? I’ve seen a lot of correlation between new AI diagnosis & the vaccines, esp Pfizer.Comment
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My wife was diagnosed with lupus sle back in 2012. She has had a stint put in her liver, her gallbladder removed, heart issues, a small stroke, and a seizure. Hers is obviously the more serious diagnosis of lupus as it attacks the organs. She takes chemo pills to help control the flare ups so if it gets bad you might look into that. I would recommend limiting your time in the sun as well. It will induce a flare up if in it for too long.Comment
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Originally posted by Texas Grown View PostI am HLA-B27 positive. It's generic. And doesn't always show up in parents or grandparents. And I've had a host of side effects. Mostly from Ankylosing Spondylitis. But also from Irises(sp) (white blood cells attack the iris of the eye) and some RA Psoriasis. As well as some digestive issues. My T-6 through T-9 have been solidifying into a solid piece of bone in my back. As well as my L4-5. Got a bunch of bone spurs in my shoulders and hips. Been trying to get on Humira for the last two years. Covid stopped me the first time due to the drug lowering white blood cell count. This time, kidney cancer in my right kidney. I'll be seeing the doc today for that. Had a treatment 3 weeks ago on it. Hope to get released this afternoon. And maybe fish tomorrow?
I've been looking forward to getting on Humira. The inflammation attacks can be debilitating to the point I can't walk or do anything else sometimes. But it's not recommended for peeps with any type of cancers. As it lowers the body's immune response to disease. So I've been kinda stuck between a rock and a hard place for a while, just using OTC anti-inflammatories (which can be hard on the kidneys).
I hope and pray the best for you Lil brother.
I haven’t been tested for HLA-B27 yet but I’m familiar with it from a buddy. Sorry to hear you’ve had that much going on. My L5-S1 shows degeneration and I have a bone spur on my L5 but didn’t realize there could be a correlation. Also have early arthritis in my hips according to the ortho I met with last week.
I’ve never tested positive for Covid antibodies but blood work showed me to have had the virus recently (but still no antibodies). I’m vitamin D and B12 deficient so we’ve started supplementing those. Also have suspected leaky gut which I know is correlated to autoimmune. I’ve had sores in my mouth, occasional fatigue, and gut issues for a very long time plus back pain for about 10 years. That being said, I haven’t really had noticeable symptoms of full body joint pain until recently, possibly directly after getting Covid.Comment
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I feel your pain. I’ve had ongoing issues for a couple of years. Shoulders, elbows, hips and back. I feel like my whole body has inflammation. 6 months ago they found 5 lesions on my liver. Went to MDA and they said it was cancer. Had 20 percent of my liver removed and thank god it was not cancer. Turns out it’s granulomas and my body is making them in a few places. They are thinking it’s an auto immune thing but they can not figure it out. MDA has done so much testing, biopsies and scan but all my blood work and test come back normal. I hurt all the time and I’m tired. I pray for your recovery and you find answers. Sometimes not knowing why is rough. If at least they can identify it they can come up with a plan. Currently they are talking about putting me on steroids to see if that dissolves the granulomas and helps with the pain. I’m really not wanting to take 3 months of steroids though.Comment
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My wife has Lupus. She was diagnosed at 20. Been through chemo a few times and been in remission a few times. She is now 52. Hers is in her kidneys and there are many, many different kinds of Lupus. She is on steroids, blood thinners, blood pressure med, etc. Thank God hers is under control with meds, exercise, and monthly labs.
Remain positive and find good doctors. You can get through it.
If you have questions PM me. She has always been receptive to talking to people about her disease.Comment
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Mom had Lupus. I don’t know much about it, other than she was in constant pain.Comment
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Wife has had RA since 2006. She takes a meal of meds every day and deals with it quite well.Comment
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Randall,
I would start from scratch & set up a bumper to bumper check up with fresh eyes at Scott & White...I have a friend who is / was on an advisory board & should at the very least help get the wheels turning if you wanna jump.Comment
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I was diagnosed with M.S. 5 years ago! It seems autoimmune diseases are rising!! I found trying to stay stress free the best you can really helps with the progression! It seems when i do get stress out thats when the flair ups tend to show up!!Comment
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My Rita Diagnosed in 2015 with lupus
Has good days and bad.
The lupus flares are bad at times.
Stay away from drama!Comment
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Diagnosed with Hashimoto’s Disease a few years ago. I take a pill everyday for my thyroid for it. I honestly had no symptoms when diagnosed and have no idea if the meds are helping. After what happened to the Japs after they attacked Pearl Harbor, you’d think ole Hashimoto would know to leave folks like me the hell alone! We ain’t to be trifled with.
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