Ron Brunelle

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  • Ron Brunelle
    November 23, 2019 at 9:15 am

    My 3rd infusion: Year 2 CIDP
    The 1st infusion in this series had minimal effects, some short term improvements.
    The doctor ordered an increase of dosage, but I’m having trouble with the insurance company with coverage. I just want to get better and I have to deal with this shit.

    Ron Brunelle
    November 21, 2019 at 4:09 pm

    I’ve been on and off immune suppression ( Gamunex ) for a couple years. But haven’t been lucky enough to claim remission.
    The prednisone is for inflammation, possibly a result of antibiotics, or possibly the Cellcept, not familiar with side effects of Cellcept, from what I’ve read it’s not easily tolerated.
    Im on Prednisone now for my Inflammation. It seemed to help for a while but not as effective these days.

    Ron Brunelle
    November 18, 2019 at 12:48 pm

    I believe there are different engines that drive an individuals health.
    Genetic
    Diet
    Pollutants-toxins
    Medicine
    Anything that changes your metabolism and/or immune system.
    In my case, my suspicions of the CIDP started with contracting Lyme disease and then the over use of antibiotics.
    Other contributing factors are pain meds which further weakened my immune system.
    This is my isolated story. No one has the same leading conditions, we are all familiar with the outcome.

    Ron Brunelle
    November 11, 2019 at 5:15 pm

    I’m desperate for an answer.
    Yes, I agree its a really long stretch. No one knows for sure how CIDP occurs. I guess I like to torture myself. I think back to when I started feeling the symptoms and what events took place. Many of the medicines I took are quite damaging. The doctors never warned me of the side & adverse effects of some of these drugs. LDN Low Dose Naltrexone can cause anything from stomach cramps to convolutions, depression or deep vein thrombosis. After a few months of therapy I suffered from a pulmonary embolism. (Blood clot in my lung)
    Long term Opioids use could change your metabolism, lowers your immune system and could cause anything from weight loss to causing a stroke. Maybe I do too much online research.

    Ron Brunelle
    November 8, 2019 at 2:53 pm

    Hey! I’m Ron.
    I am so sorry you’re going through such a tough time. I’m not sure if I can give you much insight, but maybe I can shed some light on CIDP as I understand it, and in turn give you some pertinent information. I was diagnosed with CIDP about two years ago. Before that I battled with Lyme disease for years. I suspect anything that sets off your immune system will create the right conditions for CIDP to take hold. That, the antibiotics for the Lyme, the oxycodone for the neuropathy pain. All these conditions and medications alter your immune system and metabolism.
    I am not a doctor but I’ve given more thought and done more research into my condition than my doctors have.
    With doctors, most I’ve found, will proscribe the longest taking therapy, if they even agree to try and treat you at all. I don’t want to seem cynical, but most really don’t want to try very hard. Unfortunately doctors are in business to make money. They don’t go through med school because they want to help people.
    There! I had to get it off my chest! Ok, let’s move on.

    My experience with IVIG, Gamunex, the neuropathy, the numbness, the pain never subsided. In that aspect, it didn’t work for me. But the weakness, that one symptom, the IVIG did keep the weakness away. That symptom went away shortly after the first infusion.
    I’ve begun my second treatment of Gamunex, after taking a break for 8 months. The weakness has gotten so bad I can barely stand. This second sets of treatments don’t seem to be as effective and fast acting as the first treatments.

    A relation between chemo and CIDP I’ve not heard. I actually heard of a therapy for CIDP using chemo.

    I hope you find the answers to your questions, I feel your frustration, believe me.

    My best advice, do your research. You are your best advocate. If you need someone to talk to, you know where to find me.:-) Ron

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