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Recently diagnosed with autoimmune disease - looking for support
Hello everyone! I am very new to the forum and the diagnosis.
Not really looking for answers but for similar experiences and some support as people who do not experience these type of diseases do not seem to understand the level of disruption it can bring to one's life.
Just to briefly tell my story:
Jan 2022, after a brief but bad cold (not covid), I started experiencing body aches. They were mainly chest pain (collar bone area) and lower ribs, sometimes in the lower back. Been to many doctors, been to the ER several times and experienced high levels on anxiety. I was mainly dismissed with "it's stress, relax and meditate", and suggested that it could be depression. My pcp decided to do blood work for autoimmune diseases and ANA came back positive so sent me to rheumatologist. Here, they did more blood work but everything came back normal (except for ANA). So they put me under the "umbrella" of Undifferentiated connective tissue disease. I was on low dose prednisone for a month which did miracles with my pains. Then after that I started plaquenil everyday (no more prednisone) and been taking it since April with no more pains (maybe once in a while, but manageable). However last week I started waking up with terrible left shoulder blade pain, as someone was stabbing me in the back. Experiencing hip pain on same side, then the ribs pain started again yesterday. Doctor gave me prednisone "as needed" which for me was everyday for the past 3 days. However, this time, it seems as it is not working as it did the first time. Same dose as before, also still on plaquenil. I am going through extreme anxiety since I do not understand how the pains can come back out of the blue, and how the medicine that have worked so far, they are not working anymore.
I was wondering if someone who has been dealing with autoimmune diseases has some insight into managing these flare ups. I did not expect them to come back, but then again, I am new to this and looking for some support.
Thank you to everyone who would like to share their experience.
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I have had MCTD for around 20 years. I take a low dose of Prednisone and also Cellcept for the past few years. I also have autoimmune hepatitis, some lung issues, Reynauds. I have what I think is steroid induced diabetes. I’ve been stable for some time. I think because I retired and have greatly reduced stress!
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5 ReactionsAs I was reading your post I was thinking ‘thus person needs a complete holiday or change of lifestyle’.
Stress - the easily seen stuff and then the deeper or covered up stuff. Run away. Forget your reasons why not to, go live on an island or mountain for a year without any contact to those around you at pressent 💃🏼😀🌺
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1 ReactionTest for other autoimmune diseases including vasculitis. I also have never known prednisone to be used as needed? That is usually kept on a steady amount and very slowly reduced/tapered off when you do start getting better.
Yes, be care with prednisone, pure poison to the liver and other vital organs.
Hello everyone, sorry for the absence, I had been waiting for the rheumatologist visit which I had on friday, and I am honestly feeling hopeless again. My ANA levels decreased and the new doctor (it's a clinic, so they change once on a while) decided that I don't have any autoimmune disease after all. They said that since my pains do not involve my joints and I don't have rashes, and since my ana went down since april, they want me to look for other reasons for my pain - they suggested seeing a neurologist for possible nerve issues. So they took me off Hydroxychloroquine. I have done some research and read that a patient can have changes in their ANA values, sometimes decreasing, and still have an autoimmune disease. I also know that there are autoimmune diseases that do not affect the joint. So I am feeling, once again, a little dismissed. Does anyone have any experience with negative ana and uncommon symptoms?
Also, @donnajm and @tedjones77494 , it sounded weird to me as well to receive prednisone "as needed" but I followed the doctor instructions. Now, after my last visit, I do not trust their knowledge that much
I have a form of Vasculitis that was diagnosed by a skin biopsy in 2015. My blood work has always been perfect! This disease (Polyarteritis Nodosa) is rare and unfortunately most health care providers have not seen it so they don’t have a clue what to do with me.
I’m now working with my local Rheumatologist who is consulting with a Mayo Rheumatologist because I have some new issues.
Autoimmune conditions are tough. If you are anything like me, I look like a picture of health on paper, but my physical body tells a different story!
I’ve had to learn about my situation and teach my doctors!
They don’t always receive my instruction well, but so what. There are lots of other doctors out there…
Best of luck to you. You are not alone!
Thank you @SusanEllen66 for sharing your story, I hope you are doing well!
I understand when you say you that you look perfect on paper, I had tons of lab tests and diagnostic tests done and always got back with a "nothing's wrong with you" but I still couldn't get out of bed some days from the pain. Hopefully my next rheumatologist will take the time to dig a little deeper into this.
Thank you again for sharing!
You’re welcome! Please hang in there. 🦥 I know it’s frustrating.
I had similar issues early in 2005. I was almost in a wheelchair with pain that came on within a six month period. I could hardly put one foot in front of another. All of my tests was normal. I was working as a Director of Medical Records, and I was sitting down with our Pathologist discussing my health. He reviewed all of my tests. He suggested that I might have Hypothyroidism. He said that lab values are usual values, but some people fall out of the lab norms. I was started on 25mcg of Synthroid, and within three months I was back to normal.
I was also told that I have an Auto-immune Thyroid condition. I had been off of Thyroid for 10 years, but had to go back on a low dose. My prescription is always changing. I presently take 12.5mcg 3 times a week. This is just my story as to what has happened to me in the past.
Good luck. I hope you can find out what is wrong with you, so you can get well.
Hello @msdoss, Welcome to Connect. Thank you for sharing what helps you. I noticed in your fist post that you have Dermatographia and shared more helpful information - https://connect.mayoclinic.org/comment/743430/
Have your doctors suggested any lifestyle type changes that might help with your autoimmune thyroid condition?
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