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Living with Polyneuropathy CIDP, GBS, & CMT

CIDP & bone density loss

Today I learned something I didn’t know before about my chronic inflammatory demyelinating polyneuropathy: like all inflammatory autoimmune diseases, it causes loss of bone density. One more way my body is attacking itself. The drop in my bone density has happened since I developed CIDP in late 2016. My inflammation number is always sky-high. My doctor sent me to an endocrinologist, who tested me for Cushing’s disease. Results were normal. Cushing’s does not seem to be the problem at all. So now the question will be what, if anything, can be done to stop the bone loss. I’m already getting Prolia injections. Has anyone else experienced loss of bone density?

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My Dr. has had me on calcium since day one.

I’m sorry for your new development and hope you can find a solution of effective treatment!

That’s why resistance training is so important. I am ramping up my resistance training to combat muscle loss!

I am having the same issue but haven’t had my bone density test yet. I have been sent to every Dr. I’m beyond frustrated my neurologist knows I have a SED Rate of over 100 since 2015 I have internal hardware from a MVA 20years ago and I had to see a foot and ankle Dr I mentioned it and he’s thinking I might have a dormant osteomyelitis (infection) in the bone that is now in the last 5 year rearing it ugly head he set me up for a bone scan. My regular PC Dr sent me to a rheumatologist she said if that’s not the case I need to see a oncologist as before my CIDP diagnosis he thought a paraneoplastic syndrome which is a cancer causing a autoimmune response without cancer symptoms. I’m beyond frustrated. I hope you get better Dawn

Hello, I can give you some ideas on how to lower inflammation. We have tried it at home and between my son, who has finally recovered from GBS (it took him 4 years), my husband with constant gastrointestinal inflammation and myself with joint inflammation, we can finally pinpoint what has worked.
Boil water, turn heat off and add thinly sliced or shaved fresh ginger (a lot of ginger), let cool. Add sliced cucumber when water is cold. Store in fridge and add fresh lemon before drinking. Turmeric is very helpful too. Thyme tea as well. Lots of seeds and nuts like pecans and walnuts, oatmeal, avocado, salmon, olive oil… a very healthy diet with the least irritants possible. Nutrition is definitely important. Sesame seeds have a lot of calcium.
I hope you find this helpful. I’m not a n expert in nutrition but I have seen a difference in my family’s overall heath and definitely inflammation issues.

Insist on a bone density scan. It’s very simple and quick and will provide proof of your bone density status.

I know nutrition is important. But autoimmune inflammation is the very essence of CIDP. That’s why cortisone treatment helps a lot of patients. IVIG (I get a big dose by infusion every week) also is aimed at reducing the nerve inflammation that strips away myelin. It’s a particular type of inflammation and very difficult to treat with dietary changes. But I’m glad if these measures have helped your family feel better. Whatever works!

Yes, exercise is extremely important. The studies I’ve read say that the lowered activity of CIDP patients appears to be the greatest risk for osteoporosis. Many of us have severe fatigue (I do, all the time) and don’t get anything near the amount of exercise we did before we became ill. Even when a CIDP patient is treated with large doses of steroids, the immobility appears to be a stronger factor in developing osteoporosis. I’ve had the added problem of severe unrelenting pain as a result of widespread fractures several years ago, and there’s nothing like pain to make you want to rest rather than exert yourself.

I talked to an endocrinologist about this, and she said all chronic inflammatory conditions cause bone loss. She says nothing can be done to combat it. It will happen regardless of what the patient does. Getting enough vitamin D3 is essential, and supplements can be taken, but she warned against calcium supplements, which can cause kidney stones and calcification in the arteries.Otherwise, just be careful and avoid falls.

Vitamin D makes so much sense…
The sun and supplements. We need more sun as well. Both of my boys had vitamin D deficiency at the time one of them got GBS. I heard there could be a correlation.
What is a fact is our bones need D vitamin very badly.
Thanks for sharing!

I am so glad that I read your post! In 2010 I was diagnosed with GBS, but in March I was actually diagnosed with CIDP. Anyway, before the CIDP diagnosis…like a few days before… i had mentioned to my pcp that my shoulder has been hurting a lot. I was doing high impact workouts 3 days a week…and being im 52 I figured I had been overdoing it and had an injury. She xrayed it. Well about a week later I received a letter stating that I have osteoporosis in it and need a bone density test. I didnt have a clue that it could be related to the CIDP.