Help! Living with RA and Lynch Syndrome

By Heather Egry

2 min read

It’s a long story so here goes. I was newly diagnosed with RA in February of 2023, mainly because I had broken my back in 2017 and had a lot of nerve damage (and 8 surgeries).

After bilateral frozen shoulders and 2 torn rotator cuffs, my surgeon mentioned the arthritis in my shoulders and that I should see a rheumatologist. I did, at that time, I had been getting my feet/ankles injected for the past 10 or so years for pain and my hands were also very sore. I was tested and boom! Here we are!

RA & Lynch Syndrome

My problem is, I am also living with the MSH 6 variant of Lynch syndrome. This predisposes me to approximately 13-15 different types of cancer. If you are a woman reading this (men, I’m not picking on ya!) and you are familiar with the BRCA genetic mutation than you’ll understand where I’m coming from. Lynch syndrome doesn’t directly affect the breasts, but colorectal, liver pancreas, stomach, endometrial…. If you get where I’m coming from. It’ll affect mostly all of the other organs.

This is where I’m concerned, I have been on the DMARDs and they have affected my immune system something awful. I am now trying Humira without the DMARDs. I feel it’s doing the same thing. My eosinophils were almost nothing, same with my basophils and neutrophils and my wbcs were elevated. I’m a nurse, this concerns me, especially when I know that my cancer risk is already there.

Tired of feeling sick

Does anyone or is anyone living with with this or know of something like this? I’m at the point I feel sick all the time and it worries me. I’d like to find a treatment that works that doesn’t make me feel sick. I have seen a holistic doctor and incorporated some of the herbal treatments into me daily treatments.

The pain in my shoulders and feet is awful. I can deal with my hands, but the trying to figure it out with no respite I. Site really gets you down. I am now 100% disabled, this crushes me. I do not want this diagnosis to rule my life because I have another diagnosis that prohibits me from a treatment that can work.

Is there anyone who knows anything about the two?

Thank you and God Bless!
Heather

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MauraQuinnBriseno Member
Hi Heather I'm sorry for all you are going through. Your concerns about DMARDS and cancer risk are understandable. I've had melanoma x2 so won't touch DMARDS. I've been reading positive things about hyperbaric oxygen therapy helping with any autoimmune disease, decreasing inflammation, wound healing and even stopping progression of the rheumatoid. Some articles have suggested it may manage the rheumatoid without as much Rx. Wish I knew more, but perhaps this is something to explore Take care Maura
Lynn Marie Witt, MSOT Moderator & Contributor
Heather thank you so much for reaching out. I have lived with RA for 19+ years. I was diagnosed in my twenties. I have also been diagnosed with fibromyalgia, osteonecrosis in both hips, and a few other diagnoses. However, I do not share the Lynch syndrome diagnosis. If I am being honest, I looked it up. I was an Occupational Therapist for 18+ years and saw that you mentioned you were in nursing. I can again only speak from the RA side of things. This disease turned my life upside down. I have included and article link below sharing a little bit of my story. https://rheumatoidarthritis.net/living/lifestyle-adjustments. I have been on DMARDs and biologic DMARDS. Those drugs come with potential short and long term side effects. I use a very holistic approach with my rheumatologist. I currently am on a biologic. Kevzara, it works well. Not all of them I tried helped. Without taking my Kevzara, my quality of life would not be good. I use acupuncture and craniosacral therapy for pain management. I take supplements and learned all my food triggers. It helps to decrease inflammation throughout my body. I am sorry to hear that you are new with the RA diagnosis, however glad you found our site. Sending you positive thoughts. Please now that sometimes finding the right combination of meds, diet, and holistic therapies takes a little time. I can tell you are a researcher and advocate for yourself. It's hard because we often have to advocate and fight for ourselves when we feel sick, exhausted and in pain. This site is full of community members who "get it". Thank you for being part of our community and reach out any time. Just Keep Swimming...Lynn Marie, "RheumatoidArthritis.net Team Member"