1. < Autoimmune Diseases

ANA positive then negative then positive...

Posted by comptomama @comptomama, Sep 8, 2022

I have spent my whole adult life with strange symptoms. As a child I would get high fevers and I would have bouts of Alice in Wonderland Syndrome. It was feeling like my body parts would get big then small. I also experienced "seeing" shapes get big and small. I was not actually seeing this. My eyes are closed and I would visualize it against my will. It caused quite a bit of anxiety for me. But it went away as I became a teenager. Then I started having skin issues. It looked like eczema. It was so itchy. I got it on my arms and fingers. When I was in my 20s I started having hip pain. Diagnosed with bursitis. This was the first time I had a positive ANA result. I seemed to become allergic to the sun especially when I was pregnant. I would get those itchy eczema like bumps on my chest. I also had a yeast or fungus all over my back and chest only when pregnant. Curiously my sister had the same experience 10 years later during her pregnancies. It was quarter size circles all over that were intensely itchy. I have an itch on the bottom of my big toe that has come and gone for 26 years. The same toe started getting numb in 2010. I started experiencing pain in my shin and a doctor said it could be ms. I brushed it off (no insurance) Then in 2012 , I was having pain in both legs. I elevated them and went to sleep. When I awoke, I had pain, numbness and tingling and trouble coordinating my legs to walk. It was both legs from my feet to my thighs. It has been 10 years and I have experienced pain numbness and tingling everyday since. Anf the AIWS came back. I have seen countless doctors. I have had MRIs of my full spine. My ana goes back and forth from positive to negative. My titer is 1:80 which is low. Doctors have literally said healthy people can have a positive ana. I am not healthy. Makes me angry. I take 600 mgs of gabapentin to help some pain. I do not want pills. I want a diagnosis. Idiopathic neuropathy is my diagnosis which is no diagnosis at all. It is a symptom of something. I do have CKD stage 3. My grandma had lupus and CKD and died from ILD at 77. My uncle had ILD and died at 68. My mom and brother also have CKD. My son and daughter have CKD. My son also has celiac disease. It all sounds hereditary and autoimmune to me. I get sick of doctors who just want my co-pay. Blood work looks good see ya in 6 months... Do my symptoms and family history make sense to anyone? Sorry for the long post.

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dlydailyhope | @dlydailyhope | Jun 13, 2023
In reply to @becsbuddy "@dlydailyhope You really suffering, aren’t you? It’s been documented that women are not listened to or..." + (show)
@becsbuddy

@dlydailyhope You really suffering, aren’t you? It’s been documented that women are not listened to or treated properly by many doctors. It can be a real problem finding the right doctor. I certainly hope your new rheumatologist can help. Be sure to ask, up front, if she has experience with autoimmune diseases. I added the link to Genetic and Rare Diseases website:
https://rarediseases.info.nih.gov/contact/
They can help you find a good doctor in your area.
I, too, worry about your son who also has to deal with your illness and being a teenager. Have you heard of Big Brothers, Big Sisters? My husband and I both got involved with a local group that mentored young teens. The young boy he was matched with is now a college graduate working on his master’s degree.
When are you scheduled for the explant surgery?

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Thank you, @becsbuddy! I will take a look at the site you posted and appreciate you being a volunteer mentor! =)

Yes, I do worry about my son. He also has his own struggles and challenges with ADHD and learning challenges and takes medication so I really don't want him to worry about me. Despite my health challenges, I have been blessed with a good job and ability to work remotely so I can continue (for now) to provide for him. He just graduated from middle school (8th grade) and was awarded with honors/high honors (he has to work really hard to get good grades). He starts high school in the fall and I have gotten him counseling off and on to help him through difficult times (may get him scheduled again to help him transition to a new school). I haven't looked into Big Brothers, Big Sisters before and think I should (thanks for the idea!). Since we have no extended family and he is an only child, it would be really good for him to have a positive male mentor/role model.

I agree women patients are not always taken seriously in health care. It concerns me that many doctors are quick to prescribe anxiety/depression medications to women and they never seem to take you off of them. I have been put on many of them over the years for anxiety/depression/chronic pain with various benefits/side effects. I recently weaned myself off of duloxetine (Cymbalta) gradually and now working on weaning myself off buproprion (Wellbutrin) to see how my body feels off of these medications. I want a new baseline to see how I feel before/after my explant surgery (currently scheduled for 7/17, I believe). Anything I can do to reduce the toxins in my body will be helpful. I also need to do a better job of self care and reducing stress since I know this triggers/worsens my symptoms.

REPLY
comptomama | @comptomama | Jun 13, 2023
In reply to @dlydailyhope "@comptomama, I wish you the best. I can relate with many on this thread. I have..." + (show)
@dlydailyhope

@comptomama, I wish you the best. I can relate with many on this thread.

I have been suffering for 12 years, especially the last 6. I am in my 50s, a single parent of a teenage son with no family support system. My mom had lupus, RA, heart disease, diabetes, Hashimoto's disease, etc. She died at 67 with a heart attack in the ER on Thanksgiving 10 years ago. Her life was very difficult and challenging every day and I recall her always being unhealthy while growing up. Unfortunately, I am struggling with many symptoms like my mom but have difficulty with many generalist/specialist doctors not properly diagnosing me.

I have spent many years and a lot of money (have a high deductible plan) with limited answers or treatment to improve the quality of my life. My son needs me as his sole provider and I am frustrated because I am definitely getting worse. I was just in the ER today (my doctor told me to call 911 due to cardiac like symptoms, chest pressure/difficulty breathing/liver pain, etc.), but after 4+ hours, I was sent home after blood work and IV for fluids (dehydrated, high anion gap blood result showing acidosis). That's it. Told to follow-up with my doctor. I was just at my primary doctor's last Friday due to autoimmune symptoms ( chronic low-grade fevers, weakness/severe fatigue, eyes burn/are dry/feel like I had gravel in them, nausea, pain near liver, vision issues, joint pain, arms/hands/fingers/legs/foot/toes numb, etc.). I wanted updated blood work (came back with positive ANA 1:160 speckled pattern and high CRP showing chronic inflammation), and a referral to a new rheumatologist (the one I went to in the past is retiring but he never was really helpful in diagnosing me). I am also getting surgery next month (July) and wanted to make sure I was okay for surgery. The surgery is an explant due to suspected breast implant illness (have had them for 23 years and both ruptured...scary what you find online...look up BII and the associated cancer BIA-ALCL).

My auto-immune symptoms all started after having my son at the age of 40. The order of diagnoses for the constellation of my many symptoms are: blood work showing positive ANA/RA (2011), spinal stenosis/pain (2011), hearing loss (2017), small fiber neuropathy (2017 punch biopsy confirmed), iron deficiency and thyroid/other auto-antibodies detected (2017), dizzy/fell/broke foot while walking (2018), worsening symptoms 2019 (too many to list), cervical spondylitic myelopathy (spinal cord being injured causing difficulty walking/loss of bladder control which ACDF surgery helped to stop the progression), thyroid nodule (lobectomy ruled out major cancer/removed micro cancer and confirmed Hashimoto's disease), and I am still left feeling terrible. I have left/fired doctors who are not willing to listen, are disrespectful/condescending, and have put in my medical records they thought I was a hypochondriac. Women are not always respected or listened to in health care in my experience so you really need to advocate for yourself and not give up (even though you feel terrible and don't have much energy).
You can prepare for appointments with a list of symptoms/questions but doctors do not have the patience to listen.

Our health care system is broken because patients spend so much time, money, suffering with no positive health outcomes. Patients are left on their own to navigate our overly complicated health care system and doctors get mad when you do your own research online (had a doctor get really annoyed with my questions and what I read are medical journals/articles/research from reputable sites). No one is coordinating our care and we should not have to go to 10 different specialists on our own who are only looking at one small part of your total body. We are full body systems and should be diagnosed/treated as such.

My hope now is in the explant surgery to remove the toxic silicone bags/liners that have been slowly killing me will help. My new rheumatologist is female, younger (mid-late 30s) and may have new training/research and knowledge/skills to help properly diagnose/treat my auto-immune disease(s). The delay in auto-immune disease diagnosis and treatment is killing us. I'm also planning to see a nutritionist to see how I can change my diet to reduce inflammation and autoimmune triggers and detoxify my body. Good luck to everyone struggling with this...you are definitely NOT alone!

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I have seen the Explant documentary. If you did not have an autoimmune disorder, you would suffer terrible effects of the implants leaking. But with autoimmune on top of that, your body is fighting the foreign substance along with fighting itself! I really feel for you. I agree with you 100 percent. Hopefully you will get some relief after surgery. There is so much that doctors don't understand about the body, so they should not be so dismissive. They should not treat women as if we are just overly dramatic. We do not want to be sick. I don't ever feel like doing anything. I want to be full of life, not too fatigued and in pain to do anything. I hope you get relief soon.

REPLY
1 reply
suetex | @suetex | Jun 14, 2023

To Dlydailyhope: Anyone with as compromised of an immune system as you have will have to benefit from trying Low Dose Naltrexone. (LDN) The problem will be finding a doctor who will prescribe it. Most American drs have heard about it. It is big in Great Britain. Please look it up and read about it. There is lots about it on line but you have to look for Low Dose, since it is used in higher doses for over doses of opiates. Encourage you new doc to learn about it too. Best of luck.

REPLY
oakwoman | @oakwoman | Jun 14, 2023

I can definitely relate, I have , allegedly vasculitis but not all my doctors are sure that's what I have. So meanwhile I live with this horrible foot/leg pain that all started with my RA doctor hastily ordered Nucala for my "vasculitis".
I trusted him and the very next day I broke out in hundreds of painful bumps on lower extremities. On both legs. That was in November of 2022. My doctor said huh he had never heard of side effects like that to Nucala.
I continued the injections for two more months before I just was done with it. I put 2+2=Nucala and was sure it was the cause of my misery. I don't have all the bumps anymore but some of them have morphing into lesions, rashes, open wounds that had bubbled up and broke. I am dealing with extreme pain that manifests as electric shocks. They just don't heal. I can't walk or do everyday activities. My husband has insisted on using a wheelchair. I can't sleep well, the pain is at its worst when I try to do anything that requires using my feet.
My RA doctor has since retired and now I go to UCSF200 miles away. So I'm again waiting for someone to treat me. There are no other RA's in town. My family doctor is retiring at the end of the year, so I've been abandoned and on my own. I reported the side effect to FDA myself. Has anyone out there had the same?
REPLY
2 replies
dlydailyhope | @dlydailyhope | Jun 14, 2023
In reply to @comptomama "I have seen the Explant documentary. If you did not have an autoimmune disorder, you would..." + (show)
@comptomama

I have seen the Explant documentary. If you did not have an autoimmune disorder, you would suffer terrible effects of the implants leaking. But with autoimmune on top of that, your body is fighting the foreign substance along with fighting itself! I really feel for you. I agree with you 100 percent. Hopefully you will get some relief after surgery. There is so much that doctors don't understand about the body, so they should not be so dismissive. They should not treat women as if we are just overly dramatic. We do not want to be sick. I don't ever feel like doing anything. I want to be full of life, not too fatigued and in pain to do anything. I hope you get relief soon.

Jump to this post

@comptomama, I will definitely look up the Explant documentary...I didn't know there was one so thank you for letting me know!

I also never feel like doing anything because everything takes so much effort, even for the little things. I used to have so much energy and feel like I have missed so much of my life and enjoyment of my son growing up because every day is such a struggle.

Fingers crossed, the explant surgery will remove the foreign objects my body has been fighting for 23 years and toxins in my body will be reduced over time. My fear is that with the removal of the foreign objects, will my body turn even more to attack itself since it can't fight the foreign invaders any longer? That scares me a bit.

REPLY
dlydailyhope | @dlydailyhope | Jun 14, 2023
In reply to @oakwoman "I can definitely relate, I have , allegedly vasculitis but not all my doctors are sure..." + (show)
@oakwoman

I can definitely relate, I have , allegedly vasculitis but not all my doctors are sure that's what I have. So meanwhile I live with this horrible foot/leg pain that all started with my RA doctor hastily ordered Nucala for my "vasculitis".
I trusted him and the very next day I broke out in hundreds of painful bumps on lower extremities. On both legs. That was in November of 2022. My doctor said huh he had never heard of side effects like that to Nucala.
I continued the injections for two more months before I just was done with it. I put 2+2=Nucala and was sure it was the cause of my misery. I don't have all the bumps anymore but some of them have morphing into lesions, rashes, open wounds that had bubbled up and broke. I am dealing with extreme pain that manifests as electric shocks. They just don't heal. I can't walk or do everyday activities. My husband has insisted on using a wheelchair. I can't sleep well, the pain is at its worst when I try to do anything that requires using my feet.
My RA doctor has since retired and now I go to UCSF200 miles away. So I'm again waiting for someone to treat me. There are no other RA's in town. My family doctor is retiring at the end of the year, so I've been abandoned and on my own. I reported the side effect to FDA myself. Has anyone out there had the same?

Jump to this post

Hi, @oakwoman. I looked online at similar pictures of what you have on your foot and it appears you may have shingles that was triggered by taking Nucala. This could explain the extreme nerve pain you are experiencing. You may benefit from taking medications used to treat Shingles. Nerve pain is the worst. You can find information about diagnosing and treating Shingles on the Mayo Clinic site. On the Medical News Today site, there are articles about Nucala and the serious side effects such as:

Herpes zoster infection (shingles)

In clinical studies, 0.76% of people treated with Nucala for severe asthma reported having a herpes zoster infection. This infection is better known as shingles. The virus that causes shingles is the same one that causes chickenpox. Anyone who’s had chickenpox can develop shingles.

It’s not fully known whether taking Nucala increases the risk of developing shingles.

Your doctor might want you to get the shingles vaccine before you start treatment with Nucala. This may help you avoid developing shingles while taking Nucala.

If you’re receiving Nucala and notice symptoms of shingles, tell your doctor right away. Symptoms of shingles can include:

fever
tingling or burning feeling
blistering rash
shooting pain in the area of the rash
Your doctor can recommend treatments to ease your symptoms and shorten how long shingles lasts.

REPLY
1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Jun 14, 2023
In reply to @oakwoman "I can definitely relate, I have , allegedly vasculitis but not all my doctors are sure..." + (show)
@oakwoman

I can definitely relate, I have , allegedly vasculitis but not all my doctors are sure that's what I have. So meanwhile I live with this horrible foot/leg pain that all started with my RA doctor hastily ordered Nucala for my "vasculitis".
I trusted him and the very next day I broke out in hundreds of painful bumps on lower extremities. On both legs. That was in November of 2022. My doctor said huh he had never heard of side effects like that to Nucala.
I continued the injections for two more months before I just was done with it. I put 2+2=Nucala and was sure it was the cause of my misery. I don't have all the bumps anymore but some of them have morphing into lesions, rashes, open wounds that had bubbled up and broke. I am dealing with extreme pain that manifests as electric shocks. They just don't heal. I can't walk or do everyday activities. My husband has insisted on using a wheelchair. I can't sleep well, the pain is at its worst when I try to do anything that requires using my feet.
My RA doctor has since retired and now I go to UCSF200 miles away. So I'm again waiting for someone to treat me. There are no other RA's in town. My family doctor is retiring at the end of the year, so I've been abandoned and on my own. I reported the side effect to FDA myself. Has anyone out there had the same?

Jump to this post

@oakwoman . Since you equate the lesions and rash on your foot to Nucala, you might want to call the drug manufacturer and tell them what has happened. They need to collect all signs of adverse reactions. Your comments may help someone in the future!
You’ve also said that there are no rheumatologists in your town. I added the link to the Genetic and Rare Disease foundation. They are usually able to help you find a doctor closer than 200 miles! https://rarediseases.info.nih.gov/contact
You need to find a good doctor soon, before your foot gets any worse. Can you try calling tomorrow?

REPLY
oakwoman | @oakwoman | Jun 14, 2023

Thanks for the info. I did report it to the FDA but will try to reach out to Nucala manufacturer. The UCSF doctors are trying their best. They are a vasculitis clinic where they do research as well. It's the time in-between that is hard on me. I would love a diffinitive answer. Thank you for the link, I will try it.

REPLY
oakwoman | @oakwoman | Jun 14, 2023
In reply to @dlydailyhope "Hi, @oakwoman. I looked online at similar pictures of what you have on your foot and..." + (show)
@dlydailyhope

Hi, @oakwoman. I looked online at similar pictures of what you have on your foot and it appears you may have shingles that was triggered by taking Nucala. This could explain the extreme nerve pain you are experiencing. You may benefit from taking medications used to treat Shingles. Nerve pain is the worst. You can find information about diagnosing and treating Shingles on the Mayo Clinic site. On the Medical News Today site, there are articles about Nucala and the serious side effects such as:

Herpes zoster infection (shingles)

In clinical studies, 0.76% of people treated with Nucala for severe asthma reported having a herpes zoster infection. This infection is better known as shingles. The virus that causes shingles is the same one that causes chickenpox. Anyone who’s had chickenpox can develop shingles.

It’s not fully known whether taking Nucala increases the risk of developing shingles.

Your doctor might want you to get the shingles vaccine before you start treatment with Nucala. This may help you avoid developing shingles while taking Nucala.

If you’re receiving Nucala and notice symptoms of shingles, tell your doctor right away. Symptoms of shingles can include:

fever
tingling or burning feeling
blistering rash
shooting pain in the area of the rash
Your doctor can recommend treatments to ease your symptoms and shorten how long shingles lasts.

Jump to this post

I did get Shinrix vaccine first, that's what the doctor said had to be done before I start Nucala. Some aspects of it feels like shingles is described as. So that's possible. I see a dermatologist this Friday and hope they have some answers.

REPLY
1 reply
dlydailyhope | @dlydailyhope | Jun 15, 2023
In reply to @oakwoman "I did get Shinrix vaccine first, that's what the doctor said had to be done before..." + (show)
@oakwoman

I did get Shinrix vaccine first, that's what the doctor said had to be done before I start Nucala. Some aspects of it feels like shingles is described as. So that's possible. I see a dermatologist this Friday and hope they have some answers.

Jump to this post

@oakwoman, good luck at the dermatologist tomorrow.

I read on Medical News Today that some potential complications of shingles include:

hearing problems (I have had hearing loss in one ear)
vision problems (I have blurry vision at times)
brain inflammation (I have many headaches)
pneumonia (haven't had this)
postherpetic neuralgia (PHN) (definitely have this)

Contacting the right shingles specialist can help improve recovery time and reduce the risk of long-term complications. You definitely want to prevent infection of the sores on your foot which could further complicate things.

I have experienced nerve pain for many years, and know how painful it can be (spinal stenosis, shooting nerve pain down back/legs/feet, shingles on face, etc.). There are medications, like valacyclovir, that can help relieve some of the shingles nerve pain (may take for some time and then as needed for flares). There are also anti-anxiety/depression medications that can help with nerve/chronic pain (I have been taking Cymbalta/duloxetine for over 2 years and it did help). Chronic pain can really impact your mental health.

It seems like despite getting the shingles vaccine, your body reacted to Nucala (even if you stopped taking it) and if you had chicken pox in the past, the virus reactivated to cause you shingles. I didn't get the shingles vaccine but had chicken pox as a kid. When I was prescribed prednisone back in 2015 due to mysterious eye/lip swelling, I stopped taking it after 2 days due to extreme fatigue/weakness symptoms only to have my body attack itself and extremely painful blisters/sores erupted on my face and I lost a big patch of hair (my hair dresser told me several weeks later it was like a quarter size totally bald on back of head...alopecia areata...would have never known if he didn't tell me). Thyroid levels were normal at the time. The starting and abrupt stopping of prednisone (which I never took before) really awakened the shingles virus and autoimmune symptoms and have had many problems since. Not sure if Nucala did this to you.

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