Advice needed

[tiredandsad]

I've now been diagnosed with osteoporosis on top of my Parkinson's. I'm on Madopar for it and now have an appointment through for an iv Zilendronic infusion at the end of this month. I already have joint pain and tremors so am worried if this will make it worse. My doctor just said to stop worrying! Ive also been on Letrazole for breast cancer for 5 years and believe this to be the cause of my other illnesses. I refused the infusion two years ago but have now been urged to have it. Any advice welcomed. Thanks in advance.

[pvw2]

Make sure doctor is aware of this:

Cancer drug shows promise in Parkinson's disease safety trial

medicalnewstoday.com/articl...

[park_bear]

The body requires several substances to get calcium out of the bloodstream into the bones: vitamins D and K, and silica and boron. If any of these are in short supply calcium ends up getting deposited in the arteries instead of the bones. If so one suffers the double whammy of hardening of the arteries and osteoporosis. Further writings by me about the details:

Vitamins and Minerals for Bone Health and Reduced Risk of Cancer tinyurl.com/hya5dwd

Vitamin K: Unsung and Essential tinyurl.com/yd9l4j3q

Details of the vitamins and minerals that improve bone strength, reduce fracture risk, prevent hardening of the arteries, improve cardiovascular outcomes, and reduce cancer risk.

What You Need to Know to Reduce Risk of Hip Fracture and Cardiovascular Disease tinyurl.com/y8o9jy8u

A review of the foregoing + calcium deposits on teeth as a sign of trouble.

Be aware that Zoledronic is a bisphosphonate. Bisphosphonates improve bone density but bone density is not the same as bone strength. A large epidemiological study found: academic.oup.com/jcem/artic... "[S]ubtrochanteric and diaphyseal fractures occurred at a rate of 13 per 10,000 patient-years in untreated women and 31 per 10,000 patient-years in women receiving alendronate [Fosamax]" In other words women taking Fosamax suffered more than double the rate of hip fractures then women who did not. Fosamax is also a bisphosphonate.

[Goldencbc]

Hi, I responded to you on the Bone Health community. People in the Parkinson’s community gave me excellent information ! I don’t know how to give you the link to that post but you can look up all the suggestions by going to my page and clicking on the post.

[park_bear in reply to Goldencbc]

Perhaps this is the discussion you are referring to:

healthunlocked.com/parkinso...

[Goldencbc in reply to park_bear]

Yes! Thank you. This may be useful to her. I am doing all of these things and am hopeful. Thanks! Carol

[GymBag]

That is when PD is at its worst , when things go wrong and start pileing up. They have made great advances with that particular problem with very successful treatment.

However it is of paramount importance that you take every precaution against falling and learn how to fall to protect your hips. You dont need to fret, just take it seriously . always look ahead ,where is my next handhold. Buy a wheeled walker and use it , get a cane and determine which way you tend to fall/ I fall backwards and I can do it fairly safely . You will need the medication and vitamins and exercise. The bones react to a bit of stress (exercise) and get stronger.

[LoveSunflowers]

I have osteoporosis probably due to the fact i also have an autoimmune disease which affects gut absorption and now PD too! 🤪

I have always had a lot of joint pain and stiffness from the autoimmune disease and was very reluctant to start bisphosphonates like Alendronic acid. It wasn’t just the awful side effects, it was the way they work, by keeping hold of old bone and not helping lay down new bone, causing a higher risk of unusual fractures like spiral fractures in the long thigh bones. So I gave myself 3 years to add in Vit K2, Vit D3, Magnesium and exercise (has to be weight bearing or put stress on the bones - like Pilates) and review with results of my next scan and make a decision about medication then and guess what, I’ve managed to tip myself back into the osteopaenia range!

magnesium should be roughly a 3rd of your daily calcium intake (in mgs.)

I was prescribed calcium & Vit D3 supplents but I was advised to stop by a different Dr. as I have enough calcium in my diet and too much can causing a host of problems if it’s floating around your bloodstream without getting into your bones. I was advised to take a Vit D3 spray under the tongue Instead called DLux 3000 as absorption is better than orally.

So there is hope out there but it does feel like a weighty decision! I felt if I fell and had a fracture it would be my fault for disregarding their advice. But I’m so glad I gave supplementation a go first.

[Goldencbc in reply to LoveSunflowers]

Thank you so much for sharing your success! I am just starting with these strategies and you give me hope. I also felt the same regarding a fall. Do you take a Pilates class? Is it helpful for PD? Any special approach? Thanks so much.

[LoveSunflowers in reply to Goldencbc]

Yes I do a weekly physio led Pilates class. It has changed my life. I am quite restricted on what exercises I can do as I have an inflammatory joint issues but Pilates really helps with the pain and stiffness. ( I can’t distinguish whether stiffness due to PD or autoimmune disease or both tbh) I would recommend you go to someone who really knows what they’re doing, so you get the basics & correct positioning. You don’t want to risk harm, doing exercises not suitable for people with osteoporosis, even if you change to a less expensive class later. Good luck!

[Goldencbc in reply to LoveSunflowers]

Thanks.

[Not4evr in reply to LoveSunflowers]

For your autoimmune condition please look into low dose naltrexone. It can be a miracle.

[sledge]

Park_bear and LoveSunflowers gave you solid info. I can personally attest to the very real efficacy of K2 along with supplementation of calcium citrate, magnesium, D3 and boron--ten years ago after deciding to hold off on the bisphosphonates. Doctors who don't know about this and still prescribe bisphosphonates as a first line of treatment are simply not current on the mounds of research on its serious side effects. This info has been out there for well more than a decade. Telling you to just "stop worrying about it" is, in my opinion, dismissive and a red flag. (You could tell him that, yes, you have stopped worrying about it because you now have a much safer, solid course of action you'll be trying first.)

[LoveSunflowers in reply to sledge]

Good to hear it’s been successful for you too! I will look into adding Boron in as well. 😊

[silvestrov]

I just discovered the following study that noted both L-dopa therapy and the neurotoxin MPTP both caused osteoporosis in a mouse animal model of PD:

Bone loss caused by dopaminergic degeneration and levodopa treatment in Parkinson’s disease model mice

nature.com/articles/s41598-...

The connection between L-dopa and bone loss is homocysteine (Hcy):

"Treatment with the antiparkinsonian medication levodopa, but not other dopamine receptor agonists, led to osteoporosis through elevation of Hcy in serum, while degeneration of dopaminergic neurons by the neurotoxin 1-methyl-4-phenyl-1,2,3,6-tetrahydropyridine (MPTP) directly resulted in bone loss without motor dysfunction in the mice by accelerating bone resorption and suppressing bone formation."

The best B vitamin to counteract homocysteine is B12 in the form of methylcobalamin.

Vitamin B12 Supplements May Help Slow Parkinson’s Progression, Study Finds

"The team also evaluated the blood levels of homocysteine, an amino acid that is usually elevated in people with low B12 levels. There was a significant association between high levels of homocysteine — thus lower B12 — and faster cognitive decline."

Treatment with high dose vitamin B12 been shown to be safe for more than 50 years

stichtingb12tekort.nl/weten...

If you go to a doctor with a B12 deficiency you will receive a monthly 1 mg injection of either cyanocobalamin or hydroxocobalamin. If you are in a fire and have smoke inhalation you will be injected with 5,000 mg of hydroxocobalamin to remove the cyanide. Hydroxocobalamin binds to the cyanide and your body urinates it out in the form of cyanocobalamin. That is a 5,000 month supply in a 15 minute period! So B12 is pretty safe. I prefer the sublingual form of methylcobalamin over swallowed B12.