Zolendronic acid

Posted , 8 users are following.

I have osteoporosis.  I have taken the usual treatments for nearly a year but had to stop as the muscle aches got so bad I was having to take pain  killers to stop the aches.  I have now been offered an infusion of zolendronic acid.  I really can't cope if the muscle pains last all year, but will cope if I know it's only for a couple of weeks.  I would really like to know how others have got on with this please.

:-) 

0 likes, 19 replies

19 Replies

  • Posted

    Hi Suffolkmo.  So sorry to hear how much pain you have been experiencing.  How long has the "holiday" been since the last dose of the medication you were taking?  Was it alendronic acid?  What other advice have you been given regarding bone care - nutrition, supplements, appropriate exercise?  Do you know your current t-score and did you medication help improve it over the year you took it?

    • Posted

      Hi Anhaga

      Yes it was alendronic acid.  I stopped taking it last September.  I've had numerous blood tests and my vitamin D level is very low, so I've got to have an intensive supplement of it for 6 weeks before they give me the infusion.  Both my mum and nan had osteoporosis so i was expecting it to hit at some point.  I do moderate exercise, I'm active - I ski and scuba dive - and certainly not overweight!  However, I do have dietary issues - one of which is a reaction to all cow products, so more dairy isn't an option.

      I guess I just need to know, if I take zolendronic acid by infusion, will the muscle pain continue all year or just for the first few weeks.  if it's all year, I can't cope!

      thanks

      suffolkmo

    • Posted

      Dairy isn't even the best source of calcium!  Leafy greens, at least some of them, are!  Not being overweight is actually a risk factor.  I wear a weighted vest quite frequently to add more stress to my bones to stimulate them to grow stronger as I had lost a lot of weight before being diagnosed with polymyalgia, and haven't been able to regain it.  At the bones program I attended at my local hospital every single patient was thin, except one woman who attended because she had a mother with OP and wanted tips on how to maintain her bone density and stay healthy.  But this is, I guess, a bit of a side bar.  you want to know about zolendronic acid and I can't help with that.  Would your pharmacist know?

  • Posted

    Hi,

    I was diagnosed with osteoporosis about 1 1/2 years ago. I took alendronate for about 1 year and I stopped taking it about 3 months ago. I developed muscle aches and I couldn't lift my right arm without pain. I went to a physical therapist thinking I strained my neck and shoulder, but actually it was due to the alendronate. As soon as I stopped taking alendronate, I didn't have any muscle pain. I now just take Vitamin D and calcium chewables. I have to get another dexa scan to see if my t-scores have improved or stayed the same level.

    • Posted

      Are you also taking vitamin K2 as this is very important to aim the calcium onto the bones?

      Some foods also are very helpful such as fruit and vegetables, yoghurt, gelatin, etc. Read all posts on here for osteoporosis if you have time.

      All the best.

    • Posted

      I was planning to take Vitamin K2 because I read about it on this website, but my doctor said I didn't need it. I will have to ask her why she doesn't recommend it. 

    • Posted

      It is so popular in Australia now that they have increased supply due to demand. K1 is what she may be referencing because we certainly cannot get enough K2 in our diet. 

      It makes me think that the reason for our bone issues is down to what we are lacking like vitamins K2, D3, and magnesium and lots of other trace elements that the depleted soil used to supply and now does not.

      Research is what is needed and studies across years to solve this problem not just telling us to take drugs to repair the damage that should be avoided in the first place.

      kind wishes.

    • Posted

      Hi Vimarie     I think that one of the  problems  GP's have, apart from not having time to keep up to date with their CPD,  is that they are obliged to follow the NICE guidelines where treatment is concerned.   Therefore any alternative substance like K2, which hasn't gone through the level of drug testing, demanded by NICE, is automatically dismissed. 

      There needs to be more investigations done to prove its effectiveness. 

      As far as I'm aware the NOS is / was  sponsoring a trial to look at K2,  although  I think it was mk4, with this sub type being one of the standard OP treatments in Japan, using the 45 mg dosage.    

      At the time it was mentioned in their magazine/emails, there was comments from some members on the  American NOF Forum,  that  using DEXA  scans to monitor progress, wouldn't necessarily show a true picture, because scans don't measure the condition of the matrix. I believe one of the actions of mk4 is something  to do with collagen.

      Perhaps the NOS would give us an update, about this trial. 

    • Posted

      Hi lynne73895,

      I'm going to try eating foods high in K2. I heard that Natto is a good source. Unfortunately, I heard it doesn't taste good.

    • Posted

      Someone posted on one of the forums that she got a package of natto which included some other ingredients so it was a proper side dish.  She also said one doesn't need to eat it every day, because the K2 content is so high.  She thought she'd get used to it soon enough.  I think it's more a texture thing than flavour as such. I heard it described as being crunchy and slimy at the same time, which doesn't sound appealing!

    • Posted

      Googling shows me there has been recent research done on K2, so it's about time the various regulatory agencies took it into account when recommending treatments.  As far as layperson me can tell the proof that K2 is useful for improving bone density and avoiding any cardiovascular problems from high calcium supplements is beyond question.  The Japanese have been researching K2 for years and consider natto a genuine superfood.

       

    • Posted

      I’ve never seen it for sale on my neck of the woods. I was once give tofu which is made from soya,  in a hotel as a vegetarian option. I took one mouthful and the texture was just like a big lump of white solid, fat. I don’t know how I swallowed it, without being sick,  it was disgusting!  It’s the first time I’ve been unable to eat a meal, I was mortified.

      Some folk are sensitive to K2 mk7 and find it causes them to have a fast, irregular heart rhythm which will eventually return to normal  when they stop taking it. This is why we are advised to start on a low dose of mk7 and gradually increase it to make sure we aren’t sensitive to it.  I gradually built up to 200 mcg of Mk7 a day.

      You therefore need to be cautious when you first eat natto in case the same thing happens, especially if the mk7 content is high.

       This is another reason why some folk take mk4 instead of mk7, as this is less likely to cause problems.   It’s just unfortunate that it costs more to buy. 

    • Posted

      Thanks for the info! I have supraventricular tachycardia (SVT) so I have to be careful when I take Vitamin K2. I will research more about it.
    • Posted

      Hi Vimarie. When you read about K2, be aware that many authors unfortunately don’t specify whether they are talking about mk7 or mk4, so it can become confusing and lead to misunderstanding. Good luck. 
    • Posted

      And I think it is mk-4 which is found in small amounts in other foods, like products from grassfed (never grainfed) cattle and poultry.  I wonder if that's the form our own gut fauna also makes, although apparently not efficiently enough for our actual needs.  But mk-7 is definitely very effective for bone health.

    • Posted

      I have just read your post and agree you will need to be careful when taking K2. It has just made me think of something that happened to me. A few months ago, I had a nose bleed. I could not get it to stop. I bled for 11 hours. After reading your post, I looked at the instructions on the bottle and it clearly states, to stop taking K2 if you are scheduled for an operation. This is something we all need to be aware of and the reason people who take blood thinners need to be very careful with this vitamin.
    • Posted

      I read that as we get older ours bodies are less able to produce mk 4, a bit like how our ability to convert D2 to D3 declines.  

      In other words, keep taking the tablets! 

    • Posted

      Gosh I bet that gave you a shock!    Were you on warfarin at the time?
    • Posted

      No lynne I have never been on any blood thinning drugs. I never even thought about any connection to K2 until I read vimarie’s post. As far as I know, I have no clotting issues and although I have had nose bleeds in the past, they have stopped after a few minutes.

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