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Osteoporosis anyone??

Hi All

Over the past 18 months I have suffered a broken humerus, a cracked rib and now a wedge fracture to a vertebra. (No, I'm not into extreme sport). I have just been diagnosed with Low Grade osteoporosis ( not surprisingly) . Earlier, suspecting osteoporosis,I asked my haematologist if Imatinib could cause this so he did some research and found that Imatinib has been  put forward as a "possible potential medication to reverse osteoporosis" so it looks as if I'm on the right drug. I am still waiting for an appt with my GP for a prescription probably for calcium and Vit D. I had a Dexoscan  last week and the physio doing it told me the results.

 I am wondering if CML can contribute to osteoporosis as both my GP and the scanner physio think so. I haven't asked my haematologist yet as I don;t have an clinic appt till end of May so thought I'd ask for other patients' thoughts on this.

Also, does anyone know if calcium +Vit D supplements are OK to take with CML. My GP worried that maybe not - but as I am the only patient in this area with it she isn't sure - just saw the word "myeloid" and told me she didn't think I could take the supplement. I am loathe to take anything after my experience with Imatinib and statins which gave me severe foot pain for 2 years before I realised what was causing it, but equally I feel I have to do what I can to protect my bones..

Hope everyone is well. My PCRs have been at their lowest ever for the past 9 months so I will be reducing my dose of Wockardt Imatinib to 300mgs from the standard 400mgs if I continue to hold MR4 till the summer.

Best to everyone

Chrissie

Hi Chrissie,

My oncologist put me on vitamin D3 supplements a long time back, so I don't think there's any problem with taking them and I certainly haven't heard of any issues before. I take an IU 10000 dose daily. Vitamin D is technically classified as a food, not a drug, for what it's worth.

She reckons that pretty much the whole population is VitD deficient, given the climate. 

David.

My physiotherapist (!) also put me on D3 after I developed a bone stress reaction as a result of running.  He also said that most people are vitamin D deficient at least for half of the year, in the UK, and many sportspeople take supplements routinely.  I have never heard that D3 supplements are a problem and they haven't shown themselves to be with me... My leg is much better now too. Would be a bit odd if vitamin D was a problem bearing in mind your body makes it from sunlight anyway but I'm not a doctor..

I would definitely discuss what to do with your CML doctor - my GP openly admits that I know far more about CML than he does (!) hence I never discuss things like interaction with him - for any kinds of interaction issues I would always ask a CML specialist. 

There are specific and effective treatments for osteoporosis, which affects women far more than men, so my suggestion would be to discuss with your CML doctor as soon as you can.  Untreated, osteoporosis definitely makes you more susceptible to fractures (my mother had two very major breaks doing quite routine and banal activities) so worth getting advice.

Best

Richard

Hi Chrissie,

 

First of all , english is not my native language so i 'll try to keep it simple . i dont want to cause any misunderstandings.

my mother is a cml patient since 28/10/2015 . she is 69 years old . 58 kg and 150 cm . during the test for diagnosis , we found out that my mother has Postmenopausal osteoporosis . 

after meeting with our physiotheraphist . doc doesnt start any treatment because my mother's PTH(parathroid hormone) level was 4times than the normal, also she has vit d3 defiency so doc sent us to a endocrinologist. 

my mother is on and off with d3 vitamins and calcium supplements since 11/2015. i am guessing the doc was trying to figure out how to handle the problem with PTH level.

i guess our primary problem is PTH level not osteoporosis . our situations seem to be different but 

long story short , answer for your question is yes it is ok to take calcium + vit d supplements. at least our doctors (hematologist and endocrinologist) know the history of each situation .

our dose and type of caco3 and type of vit d3 changed during our treatment . 

at the moment , my mother is taking 

1g CaCo3 (400 mg calcium ) pills twice a day . 

rocaltrol 0.25 mg once a day . ( before this , she was using 50000 ı.u vit d3 ) 15 ml . 20-30 drops a day.

one last note :

my mother's dxa reports . ( this values are universal i guess )

16/10/2015  AP spine T score  ( - 3,9 ) ,   left  femur T score ( -1,9 )

02/11/2016  AP spine T score  ( - 3,5 ) ,   left  femur T score ( -1,3 )

this two tests are made in two different labs , either our situation is getting better or at the same point . both results works for me .

 

 

 

Thank you everyone who answered. I feel better about taking the supplements now - assuming that is what my GP will prescribe when I see her on Friday. I assume the calcium is also OK.

Best

Chrissie