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Old 03-18-2022, 10:51 AM   #1
Agdog
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Default Autoimmune Disorders

How many of yíall have an autoimmune disorder? Iíve 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. Iíve somewhat recently started experiencing symptoms of fatigue, joint pain, headaches/ďmental fogĒ, 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 Iím positive for anti-DNA antibodies which as I currently understand it is one of several requirements for a Lupus diagnosis. Iím putting the cart before the horse a bit but since I have other symptoms that are on their 10pt diagnostic criteria I canít help but assume thereís a high probability this is where we end up. Rheumatologists are hard to get an appointment with these days so I figured Iíd try to find a sounding board while we wait for an opening. Anyone dealing with similar issues? Iíd like some input as to what I should expect, doís and dontís, etc.
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Old 03-18-2022, 02:17 PM   #2
Texas Grown
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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.
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Old 03-18-2022, 02:26 PM   #3
topwater blowup
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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...
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Old 03-18-2022, 03:40 PM   #4
Burnadell
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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!
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Old 03-18-2022, 04:07 PM   #5
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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.
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Old 03-18-2022, 04:07 PM   #6
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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.
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Old 03-18-2022, 05:29 PM   #7
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Quote:
Originally Posted by Texas Grown View Post
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.

I havenít been tested for HLA-B27 yet but Iím familiar with it from a buddy. Sorry to hear youíve had that much going on. My L5-S1 shows degeneration and I have a bone spur on my L5 but didnít realize there could be a correlation. Also have early arthritis in my hips according to the ortho I met with last week.

Iíve never tested positive for Covid antibodies but blood work showed me to have had the virus recently (but still no antibodies). Iím vitamin D and B12 deficient so weíve started supplementing those. Also have suspected leaky gut which I know is correlated to autoimmune. Iíve 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 havenít really had noticeable symptoms of full body joint pain until recently, possibly directly after getting Covid.
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Old 03-18-2022, 07:36 PM   #8
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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.
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Old 03-18-2022, 08:03 PM   #9
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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.
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Old 03-18-2022, 08:36 PM   #10
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Mom had Lupus. I don’t know much about it, other than she was in constant pain.
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Old 03-18-2022, 08:46 PM   #11
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Wife has had RA since 2006. She takes a meal of meds every day and deals with it quite well.
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Old 03-18-2022, 08:53 PM   #12
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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.
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Old 03-18-2022, 08:57 PM   #13
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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!!
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Old 03-18-2022, 08:57 PM   #14
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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!
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Old 03-18-2022, 09:04 PM   #15
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Diagnosed with Hashimotoís 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, youíd think ole Hashimoto would know to leave folks like me the hell alone! We ainít to be trifled with.


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Old 03-18-2022, 09:07 PM   #16
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I was tested for Lupus multiple times had horrible issues like mentioned above.Turned out I had Lyme and Rocky mtn spotted fever.Suffered for ten years before getting a diagnosis and then another 3 to find out about the Rocky fever.I hope they find something simple and treatable for you but may want to rule out the Lyme if you haven’t done so.My long term sickness has led to Addison’s disease or adrenal failure which hasn’t been any fun.
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Old 03-18-2022, 09:13 PM   #17
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I was diagnosed with Guillain-Barrť 11 years ago. I was 27 years old and in my prime. I couldnít walk without a walker, couldnít drink coffee without burning my tongue, or raise my arms high enough to shampoo my hair. Every day things that I had done since I was young were a struggle for about 3 months. I am stubborn and wouldnít let anything beat me, I made a full recovery. Hopefully those with with loved ones affected have similar results and I wish all the best

Rey


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Old 03-18-2022, 11:05 PM   #18
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The last two years have been hell for me. I’ve got RA. Take hcq for it. Methotrexate is the next step. My spine is a mess. Epidural injections in my neck don’t work. Joints ache constantly. My rheumatologist said that a spine surgery is in my near future. Also have Raynaud’s disease that’s affects my hands. Neuroma in my right foot. I’m not looking forward to the next 20-30 years.
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Old 03-18-2022, 11:17 PM   #19
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A few run in our family. Seems like I have alopecia. Thankfully, it seems mild and only shows in my facial hair around my neck from time to time. Hoping it doesn’t get worse.
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Old 03-19-2022, 12:52 AM   #20
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MS diagnosed in 08.
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Old 03-19-2022, 05:23 AM   #21
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Sorry to hear this Randall.

I have dealt with RA for the last 5 years and have had a struggle finding a drug to control it without killing me. Methotrexate messed with my liver function. Humira worked well but after 2 years I developed a intestinal blood clot and spent 5 days in the hospital. I was only on Orencia for 2 months and had a squamous cell blow up on my arm and had to have it cut out. I started infusions of Rituxin last fall and my hands are telling me it's time for another.
I take naps for the fatigue.

Hogboy
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Old 03-19-2022, 07:50 AM   #22
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I was diagnosed with the primary progressive form of MS not quite 2 years ago.
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Old 03-19-2022, 12:06 PM   #23
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Darn! We should never take our health for granted. Things can change in the bat of an eye, and we must enjoy our life, loved ones, and friends every day.

My prayers go out to each of you. May God keep you all functioning for a long time, and may you all enjoy many more years of a fruitful life on this earth!
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Old 03-19-2022, 12:16 PM   #24
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Quote:
Originally Posted by Burnadell View Post
Darn! We should never take our health for granted. Things can change in the bat of an eye, and we must enjoy our life, loved ones, and friends every day.

My prayers go out to each of you. May God keep you all functioning for a long time, and may you all enjoy many more years of a fruitful life on this earth!

You survived smallpox and the Spanish flu of 1812. You can beat anything!!!


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Old 03-19-2022, 12:38 PM   #25
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No experience with lupus - hoping you find some relief soon!
I have immune mediated eczema. It didn’t become a problem until I was in my 20s. If I do nothing I have a painful itching rash on my face 90% of the time. I take a variety of anti-inflammatory medications and they are wonderful but the side effects suck. Anything you can do to reduce inflammation in your body will help. Diet, adequate sleep, reducing stress…
Anything that can cause inflammation can trigger that immune response.
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Old 03-20-2022, 12:19 AM   #26
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A friend of mine has Lupus. It is the kind that is not fatal but causes muscle weakness, severe itching and is sometimes aggravated by sun exposure. She takes Hydroxychloraquin (sp.) for it.


Sure miss those days of being able to hunt a lease for a nominal cost that didnít create greed and a feeling of despair if you didnít kill something!
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Old 03-20-2022, 02:32 AM   #27
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I’ve got RA and its not a lot of fun as some of you know but combined with chronic Osteomyelitis it down right sucks at times, I’m not even sure how many surgeries I’ve had but it’s somewhere over 25 and counting. All we can do is keep on rolling and make the best of it, I look at it as there are a lot of people way worse off than me so it could always be worse.
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Old 03-20-2022, 03:53 AM   #28
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I have two late 30s family members that were having auto immune complications/inflammation that werent resolved until they found out their blood type, conducted a self applied elimination diet (eat one thing at a time and note inflammation, eliminate inflammatory foods from diet) and began a lifestyle dietary change. Issues of extremity tingling, numbness, lethargy, mind fog, achyness, etc went away. One person is A Pos and other is O Pos. Both minimized/eliminated wheat intake and auto immune complications were drastically reduced…amongst other common (inflammatory) foods eliminated.

Ive friends in their 20s that had same problems, same dietary restriction application and same beneficial results.

Consider reading the book:
Eat right 4 your type
by Dr Adamo

God bless and Gigem Ag.
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Old 03-20-2022, 04:43 AM   #29
Bill M
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Praying for you, Randall.
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Old 03-20-2022, 07:47 AM   #30
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I have (had??) Primary Schlerosing Cholangistis, which is basically extreme scarring of the bile ducts inside and outside the liver. PSC kills the liver. Had a liver transplant in 2013.

I also have Vitiligo and Ulcerative Colitis. Both are thought to be autoimmune diseases.

The tranasplant and meds keep me rocking along. I'm blessed to be alive.
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Old 03-20-2022, 08:17 AM   #31
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POTS syndrome. Always knew something was wrong growing up, but never knew exactly what. After it took a turn for the worse in 2017 I was finally diagnosed. It has made life more "interesting" to say the least. I will say that dealing with it has made me stronger, though.
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Old 04-05-2022, 08:18 AM   #32
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I have Hashimoto's. Take a med for it but otherwise no big deal.

My wife has Common Variable Immune Disorder, RA, LUPUS, Ocular Myositis for 15plus years. Some days good, some days awful. It has been tough on her. Just when we think we have it managed with meds etc, it changes...

I am convinced we have to clear our diet and eat whole foods. No processed food etc. I am working to get there and hopefully she can too.
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Old 04-05-2022, 08:38 AM   #33
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Like some of the others here...I have Hashimoto's. Normal Thyroid range should be .5 to 5.0. A few weeks ago, mine was .01 (non existent). Meds changed and we will see if we can get it up in to a more acceptable range again. It's a frustrating thing to deal with....low energy, hair loss , and weight gain.

Sorry you are going through this Randall....take one day at a time and pay attention to your body every day. I know when my numbers fall....after washing my hair, there will be a handful of loss hair sitting on the drain. That is my cue to get blood work done and make more changes. I have learned you are your own best advocate.....find a doctor that will listen to you when you know/feel something is off. That has been a challenge for me. I "think" I finally found a doc that is on target (hopefully!) and can help get me stable again.
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Old 04-05-2022, 09:08 PM   #34
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Second round of blood work tested a little higher on DS anti-dna so I have an appointment with a rheumatologist on the 20th that came highly recommended from a family friend. Heís gone 8 years without a lupus episode which sounds pretty promising. I have completely changed my diet and drinking habits at this point and feel significantly better. Spent a little too much time in the sun a week ago though and it knocked me on my butt for the next 20 hours or so. My daily pill tray is pretty full these days but they seem to be working when paired with a cleaner diet/lifestyle. Iím taking this all as an opportunity to ďrediscover myselfĒ as corny as that sounds.

I find it both comforting and sad to learn that so many others have managed to deal with various autoimmune issues. My prayers are with each of you!
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Old 04-05-2022, 09:35 PM   #35
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make sure you do not have excessive sugar in your diet, dr pepper etc. This is known to make things worse.
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Old 04-06-2022, 06:48 AM   #36
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Quote:
Originally Posted by Burnadell View Post
Darn! We should never take our health for granted. Things can change in the bat of an eye, and we must enjoy our life, loved ones, and friends every day.

My prayers go out to each of you. May God keep you all functioning for a long time, and may you all enjoy many more years of a fruitful life on this earth!
Amen! Prayers up for you all!
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