Advice please?: Hi, I was told I had... - Bone Health and O...

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Advice please?

Swallow17•

5 years ago•16 Replies

Hi, I was told I had osteoporosis in May 2018. My scores were:

Femur neck: T score -1.1, Z score -0.1

Spine: T score -2.5 Z score -1.4

Looking at the charts, my interpretation is that my hip is just in the osteopenia range and my spine just in the osteoporosis range. If it hadn't been that I started letrozole, which is known to cause osteoporosis, in June 2018 I might have tried to manage it by diet changes and supplements (I've had it drummed into me that you should never take supplements with any cancer medication). I was prescribed adcal, vitamin D and alendronic acid. I stopped adcal pretty quickly as I got terrible indigestion with it. I didn't really get on with alendronic acid (gut problems) and was switched to risendronate in January 2019. I have had similar problems with that and generally just feel dreadful taking it. I can mange 4 weeks maximum taking it before I have to give up. I've calculated that I've only taken it about 60% of the time I should have and so it probably doesn't help me. One of my symptoms is tingling in face, arms, hands, legs, feet after 3 weeks or so taking it. Has anyone else had that? The GP says risendronate doesn't cause that. He also said that I should tell him what I should take!

I'd really appreciate any advice.

Thank you!

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16 Replies

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Kaarina5 years ago

Unless I am very much mistaken your results are not bad at all. Can you get your calcium via your daily diet and ask for a script for Vit D only? That is what I do. I discussed my diet with my GP and he agreed with me that I get enough calcium in my diet and there was no need for me to take the combined script practically all GP's appear to write out for those with OP.

Swallow17• in reply toKaarina5 years ago

Thank you. I know they are not too bad, but the problem is the letrozole

which causes bone loss and that's what worries me most.

• in reply toSwallow175 years ago

Just being nosy, how long will you have to take Letrozole for? I took Anasrazole for 5 years which ended last year. But I'm on 5mg Pred indefinitely for Vasculitis.

Swallow17• in reply to5 years ago

A maximum of 2 years and 4 months. I was on tamoxifen before that for almost 8 years.

Met005 years ago

Bearing in mind that there's a margin of error with t-scores and, given that your femur neck score is so good (and such a large difference between the 2 scores), I wouldn't be unduly worried at this stage unless you've already had a fragility fracture. How long will you have to take the letrozole? If you're able, doing lots of high impact exercise (eg jogging, dancing, hopping, jumping, skipping) and exercising with weights and resistance bands is a good way of maintaining and even improving bone density. As far as risedronate is concerned, have a read of the following, including the section for healthcare professionals: drugs.com/sfx/risedronate-s.... Even if your specific side effect isn't listed, your GP is wrong to say risedronate doesn't cause that and ought instead to report it under the yellow card system. As patients we're also able to report side effects, so would you be willing to do this, as it's the only way the pharmaceutical companies will get a true picture of the impact of a medication: yellowcard.mhra.gov.uk/

Swallow17• in reply toMet005 years ago

Thank you. I fractured ribs and pushed for a dexa scan as I knew I was due to switch to letrozole. I hope to finish with it later this year. I Nordic walk and hill walk with medium sized rucksack and have recently taken up weight lifting, although I can't lift very much yet 😊

I'll certainly mention the tingling again, thanks for the link.

Fruitandnutcase5 years ago

Got a friend who is coming to the end of her course of letrazol. She has recently had a DEXA scan and one of the things she has done apart from walking and eating well to kept her bone density from deteriorating is ‘stomping’ around the house.

This link is to a good site run to physiotherapist - she has produced a very good exercise book but there are quite a few videos of her suggestions - just got this one on ‘heel drops’ today

melioguide.com/osteoporosis...

Swallow17• in reply toFruitandnutcase5 years ago

Thank you - not sure my husband appreciates the stomping though!

Bama_girl• in reply toSwallow175 years ago

😂😂

Kathleen225 years ago

Wow, I would love those results. Why would doctors be prescribing awful drugs when there seems to be no need. It is a puzzle! I have not given in to taking the drugs although my results are way worse than yours. Some of us do not get to the optimum 30 year old bone mass anyway as we are small. The scans are not that reliable as well many are reporting. Add to that results that are minor at most like yours. Have a great diet of fruit and vegetables, bony broth, avocados, yoghurt, prunes, etc. Check your vitamin D levels, calcium and magnesium and top up as needed. Vitamin K2 is probably the most important supplement to take as it puts the calcium onto the bones and out of the arteries.

Because of the letrozole just be really vigilant with your food and supplements.

Swallow175 years ago

Thank you. I've been advised against supplements when on letrozole. No chance of getting GP to check vitamin D levels, calcium and magnesium. Doing all the right things diet wise.

HeronNS5 years ago

When you are allowed to take supplements, keep Vitamin K2 in mind (not K1). It, along with magnesium, is important for getting calcium into the bones, which Vitamin D doesn't do although it is needed for absorbing calcium.

I was curious so I asked Dr Google about supplements and your med and found this interesting discussion thread:

navigatingcare.com/groups/p...

Particularly this comment:

"Post #18 I have been taking Letrazole for 4 years. I have been taking vitamin K2 for 2 years . My bone density test have greatly improved. I refused to take the injection for osteoporosis since that can cause bone cancer. This was my choice since I thought it was best for me. Do your own research and good luck to you."

Obviously one doesn't take everything one reads on the internet without a grain of salt, but it does seem like there is a possibility that not all supplements are disallowed.

Swallow17• in reply toHeronNS5 years ago

Thank you, I'll certainly consider it. Saw the GP and he agreed best to stop resonate for now and to reassess after next DEXA scan.

HeronNS• in reply toSwallow175 years ago

I'm far from recommending bone drugs to anyone, but there are bone drugs wich are administered through injection or infusion. It depends on your current condition and other risk factors of course whether you even need to consider this course of action. And important to have the DXA scan first. Hope you feel better soon.

Swallow17• in reply toHeronNS5 years ago

Thank you

binati5 years ago

Dexa scan is not a good measure of the changes in certain areas like femur, vertebra etc. One needs to measure these areas specifically with whatever methodology is recommended. I have seen most research reports in the past few years about the impact of exercise on bone density loss in ADT for example. It does not show any material improvement or reduction in bone loss. However, along with agents like denosumab and zoledronic acid and others exercise is good for many other conditions in addition which arise from use of cancer treatments. I am now struggling with having to consider proactive measures before the bone density becomes too low and fractures become highly probable.