Medication Options for Rare Diseases: SubQ

Low-dose subcutaneous immunoglobulin is an effective treatment for autoimmune bullous skin disorders: A case report

The above is the new treatment I am using for my rare disease, Pemphigus Vulgaris. I also found out I have CVID, (Common Variable Immune Deficiency, which is part of PI.  I don’t understand why my doctor said she couldn’t find research as here are four case studies that specifically discuss blistering diseases and Hizentra and remission.

A little background about me: I was diagnosed with Pemphigus Vulgaris in June 2018 after a year of blistering. I was on Prednisone for 14 months, the highest dose was 100mg a day. It took me a year to taper off the Prednisone. I have had two rounds of Rituxan, following the RA protocol and two maintenance doses. I tried IVIG and got aseptic meningitis. I started using LDN in June 2019 and stopped in December 2020, as I was approved for subcutaneous immunoglobin. I see an acupuncturist and functional physician weekly since December 2018.

Seriously, I should look into being a patient advocate or something because this treatment doesn’t suppress the immune system and allows the patient to control when and where they infuse their medicine.

Since being diagnosed in June 2018, all I feel I have done is research in trying to solve my disease or figure out a way to live a normal life without harsh medications. The medications got it under control and I am thankful for that but the side effects have left me with other issues from suppressing my immune system, losing muscle, Addison’s disease, lymphedema, and fatigue, that I am not willing to continue.

In reality, if my first doctor 20 years ago believed that I had my first autoimmune disease, and I actually found doctors who understood our “invisible” diseases, I don’t feel I would have gotten this bad.

But after all the hard work, I am finally feeling more and more like my old self. Still tired and giving energy to what I need to do but hoping this year I can get back to doing more than just what is needed.

I posted the above on one of my social media networks and someone brought up AI. I am open to AI or advanced medical practices. There are more detailed tests to see if a person has titers of autoimmune diseases. Why none of my past doctors ran these after I shared my struggle is beyond me.

The doctors: It was always that I was depressed. Depressed cause my body hurts not mentally depressed. As a once active individual, full of muscle and energy, the depressing part was not being able to continue being as physically active as I once was. If I did an hour of activity, I slept for a week but that was looked at as normal?

I was a daredevil! I did everything from the basic sports of swimming, softball, and basketball to dancing and then aggressive inline. I jumped and rode ramps on my blades and loved every second! I loved the adrenaline and now I’m lucky if my adrenals will even produce enough to stay awake all day.

Maybe AI would have found my issues out sooner if this was entered into the diagnostic system. Either way, I just want people to take control of their health, do the research so they don’t end up like me. Feeling like shit for 20 years, being told I’m a hypochondriac and now trying to get my body and life back to it once was at 44.

If you are struggling with an autoimmune disease and not getting better, speak up and find the right doctors.
    • Do your research and bring it with you to all your appointments.
    • Sometimes we have to try all the medications to get to the subcutaneous immunoglobin option due to the health insurance approvals.

Be your own advocate and listen to your body. Take control of your health and ask questions.

A Rare Disease That Sounds Like It Belongs in Harry Potter: Pemphigus Vulgaris

It started last year (2017), when I was extremely fatigued for months and couldn’t shake the exhaustion. I slept at night as usual, but had a hard time getting up in the morning. The exhaustion, pain and swelling were always present, and no matter what I tried, the discomfort would not subside.

I went to my primary doctor, who sloughed off my symptoms as being tied to inflammation associated with Fibromyalgia. The doctor told me to take calcium and turmeric and sent me on my way. By December, my gums were very inflamed and my tongue was burning. I went to my primary and again was told that it was from the Fibromyalgia. This time, the doctor gave me thyroid medication for a thyroid condition I didn’t have.

Between January and February, my tongue burning came and went and I had canker sores — or so I thought. The canker sores never fully disappeared. I tried to solve the issues using acupuncture, Chinese herbs and vitamin drips. Unfortunately, the natural route was not working. If anything, it was getting worse. Three different doctors misdiagnosed me again — this time with oral thrush — and I spent a lot of time and money on medications I never needed. I went to six different doctors, three of whom said they didn’t have a clue what I had. With no help or guidance, they gave me Prednisone and sent me on my way.

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