Anyone else with Churg-Strauss or EPGA?

Joni I was on prednisone for 9 months and had some hair thinning and poor texture from that as well. Your treatment for EGPA should take under consideration, your prior cancer treatment. For my case, which does not include that issue, being on Nucala and getting off prednisone since August, my hair is starting to grow back and is healthier than it was when on prednisone. At my age I don't expect it to be what it once was, but better than it was on prednisone is a good thing! Sounds as if you will need to deal with that on a temporary basis whichever way your doctors help you choose. Good advice from Becky to check out the Breast Cancer Support area since it may have good ideas. Let us all know if you find something we can all try!
Best of luck in choosing what is right for you and that it will work well.
We are all in your corner, Girl!
MTH13

Hi all - I’m writing on behalf of my dad who was diagnosed with a severe case of EGPA which has made him completely blind, severe muscle pain and weakness, weight loss, neuropathy in hands and skin rashes. His doctor prescribed rituximab infusions as he tapers from high dose steroids and insurance has been denying it for the last month, and now his symptoms are worsening again. Has anyone had trouble getting their treatments approved or any advice on how to navigate that? He also started Nucala this month. You are all amazing and wishing you all the best in your healing from this.

@erinman57
Welcome to Connect, hopefully other members will be able to give you some advice on dealing insurance denials. It is very frustrating when a provider has a treatment plan and the insurance company denies it.

All companies have an appeal process, if you have not done so, start an appeal. Sometimes you will need to get the provider involved to provide information that it is medically necessary.

Some states have assistance with Health Insurance issues. They may not be able to help with all insurance company, but worth looking at. In MN, it is under the Department of Commerce. I suggest doing a google search similar to "mn medical insurance complaints" substituting MN for your state.

It might help if you're willing to share the type of insurance your dad has, Medicare, Medicare Advantage, veterans, private insurance ?

Thanks so much for the reply @roch - really helpful and I’m looking into filing a complaint now. He’s in NJ, but his doctor and infusion would be in PA. He has BCBS private insurance the federal plan. Thanks again!

I was diagnosed with EGPA in July 2024, but had the first symptoms of the disease in July 2021. The onset began with violent coughing, wheezing, extreme sneezing, nasal discharge, and rash. At first, my doctor thought it was just pneumonia, asthma, and sinusitis. The rash was the big tell, as was the nasal polyps. I had sinus surgery to remove the polyps in August 2023. Because of the extended use of prednisone, I got prednisone psychosis at the time. During a chest CT, they also found cysts in the pericardial sack of my heart. I had a surgery to remove them, which was successful. I have tried several biologics including Xolair, Dupixent, Nucala, and Fasenra. I live in Southern California, Ventura County, and it is really hard to find doctors that know anything about EGPA. I feel my best on prednisone, but because of the previously mentioned psychosis, they are reluctant to give it to me. I tend to notice when I relapse because of sneezing and skin involvement. It was a biopsy of a rash that got me my full diagnosis. I have always been ANCA negative. When I lapse, my eosinophil counts can be in the 1000s. I am currently 46 years old. Because of the medication, I have bouts with fatigue. I have some strange symptoms. My right eye is so itchy, I feel like I could itch it out of my eyeball socket. My vision is deteriorating. My right upper foot pad is incredibly itchy ?might be vasculitis?. I have an almost constant stridor. I have a bubbling sensation in my heart of my left chest area. It is like sharp stabbing pains at times. My skin has a course texture that is new. I feel like I always have loose stools. Acid reflux is common. My bladder is completely shot. Because of the prednisone, I have experienced hair thinning and extreme teeth cold sensitivity. It would be nice to find a community. Please let me know if you share any of the similar symptoms.

@redhead1115 That’s quite a symptom list! But, WELCOME to Mayo Clinic Connect!! And you say that i’s very difficult to find a doctor who knows autoimmune systems. Most of this was not taught in med school because the disorders were rare and doctors might see only one in their career. The best way to find a doctor who knows of AI diseases is to contact major medical centers or university medical centers. This is what my husband had to do when I was so sick. I think he actually made cold calls just looking for help. He finally found that the neurology department of U of Colorado. Our 1st visit was at 8 am and the hospital was an hour away on a good day. I was already in our local hospital, so my husband and sister packed my up and we drove to Denver at 6 am on a cold February morning. I’m sure that California has some great teaching hospitals!
Do you think you could try this?

Thank you for the idea! I will check this out.