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ANA positive then negative then positive...
Autoimmune Diseases | Last Active: Jul 24, 2023 | Replies (53)Comment receiving replies
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?
Replies to "I can definitely relate, I have , allegedly vasculitis but not all my doctors are sure..."
@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?
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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.