Increasing Bone Mass

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Offline Emby

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Increasing Bone Mass
« on: February 08, 2014, 12:46:31 PM »
Hello All,

I would like to ask if anyone takes or have taken Alendronic Acid tablets or infusions.
If yes then how long were you on this treatment? Was it effective?
I would also like to know that when Zscore is -2.1, would this mean overall bone mass is low or not overall?
My son might start this treatment so i would like information for this reason.
Thank you so much.

Emby

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Offline Andy Battaglia

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Re: Increasing Bone Mass
« Reply #1 on: February 08, 2014, 03:31:00 PM »
You can see a good explanation of Z score at http://www.niams.nih.gov/Health_Info/Bone/Bone_Health/bone_mass_measure.asp

I have heard from patients who have taken zoledronic acid with success, but be prepared for side effects, as all of the bone drugs do cause side effects.
How often is the med supposed to be administered?
Andy

All we are saying is give thals a chance.

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Offline Emby

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Re: Increasing Bone Mass
« Reply #2 on: February 10, 2014, 01:54:37 AM »
Hi Andy,

He has not yet started on it, but has been referred to see a doctor for this. The thing is that his reading last year was -2.7 and now -2.4 [opologies for recording wrong result in last post]. so in actual fact, his bone mass is a little better than before and this is just by taking vit d. Also he would be classed as someone with osteopenia and not osteoporosis so maybe the next step from here is not alendronic acid but to maximise vit d levels and review at next scan.
What are the side effects to taking zelondronic acid?

Emby

Re: Increasing Bone Mass
« Reply #3 on: February 10, 2014, 02:31:56 PM »
Few points from our experience.

The bone density in Thal Major is expected to be lower because of the condition.
The Z-score of -2.4 is a bit more than normal for thal major. The thal major child with z-score less than -2.0 to -1.0 may not require any medication.
I would be very careful with Alendronic Acid, our doctors tried their best not to go that route.
Not sure if your child is taking enough calcium and vitamin D plus physical activity.
Little Miss A, unfortunately had a Z-score of -3.6 four years ago, with persistent calcium, vitamin D and physical activity she is -1.7 in last checkup.
Regards.

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Offline Emby

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Re: Increasing Bone Mass
« Reply #4 on: February 10, 2014, 03:08:08 PM »
Hi Canadian Family,

Thank you for replying. That is great news for your daughter. This is how i feel, that bone mass can be built with the way you have
been handling it. Please can you tell me what the doctors won't say about Alendronic Acid?

Emby
 
 

Re: Increasing Bone Mass
« Reply #5 on: February 10, 2014, 04:37:39 PM »
Doctors are usually very open about the side effects of Alendronic Acid, my limited understanding is that these drugs are designed for adult patients over 60 and there is no significant data measuring long term effects on young children.

Please google for more information, this link is helpful as well.

http://www.nos.org.uk/page.aspx?pid=1235



Regards.

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Offline Andy Battaglia

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Re: Increasing Bone Mass
« Reply #6 on: February 10, 2014, 04:46:43 PM »
Emby,

Seeing that he has improved by using vitamin D, it would be prudent to continue this strategy and if his levels have not gone up fast enough, higher doses of D would be appropriate.

If you want to be shocked, look up the side effects list of these bone drugs.
Andy

All we are saying is give thals a chance.

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Offline Emby

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Re: Increasing Bone Mass
« Reply #7 on: February 11, 2014, 12:53:37 AM »
Thank you Canadian Family and Andy,

Looked it up...and yes it is shocking. Am i allowed to post a link to patients response to taking this drug on here?
The patients are mostly older but just think how much more it would effect someone with thal! At any age!
hope to discuss this with his doctor...always research on drugs, should't blindly accept/take what is prescribed.

Emby

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Offline Andy Battaglia

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Re: Increasing Bone Mass
« Reply #8 on: February 11, 2014, 01:08:59 AM »
The doctors are big on these drugs, but the side effects can be horrific (ie. jaw necrosis). I think the drugs and alternatives like high doses of vitamin D along with calcium, magnesium and zinc should be compared before making any decision. The vitamin and mineral approach has no side effects, and should be tried before deciding on bone drugs. I don't think these are routinely given to children, and even adult thals should be cautious and understand what they're getting into before agreeing to the drugs. It's much safer to get the D level above 50 than it is to take bone meds. That should always be tried before resorting to the drugs.
Andy

All we are saying is give thals a chance.

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Offline Emby

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Re: Increasing Bone Mass
« Reply #9 on: February 11, 2014, 01:36:12 AM »
Thank you Andy,

My sons vit d level is 53 which shows to be just adequate , so should't he aim for a higher level?

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Offline Andy Battaglia

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Re: Increasing Bone Mass
« Reply #10 on: February 11, 2014, 02:14:25 AM »
I'm not sure if it's the same units of measurement, but 50-80 is considered optimum, so he can still go higher. Exercise is also important for bone strength.
Andy

All we are saying is give thals a chance.

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Offline Emby

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Re: Increasing Bone Mass
« Reply #11 on: February 11, 2014, 04:18:07 AM »
Thank you Andy...yes it is the same measurement.

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Offline Sharmin

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Re: Increasing Bone Mass
« Reply #12 on: February 13, 2014, 10:47:27 PM »
Andy,

Might it be possible that because children with thal major usually have a drastically lower bone age (average 4 years behind) that the z- scores being measured for a certain age may be inaccurate?  I am not sure if bone age is relevant - just guessing.

Sharmin
Sharmin

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Offline Emby

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Re: Increasing Bone Mass
« Reply #13 on: February 14, 2014, 01:40:24 PM »
Hi Sharmin,

I guess it is just a guideline. Even in normal people, food consumed is not 'wholesome' anymore and we are beginning to see the effect
of this everywhere so normal bodies are not so normal anymore. Although we know for Thal bone mass is decreased, it is not the age to look at but to get bone mass to increase to the best level possible for them.
Sorry if I have misunderstood your question.

Emby

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Offline Pratik

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Re: Increasing Bone Mass
« Reply #14 on: February 16, 2014, 07:11:19 AM »
Hi Andy,

Is Risophos (Indian Brand) containing Risedronate 35mg/week is the same as the other med you were talking about? If so, I suffered very bad osteoporosis in 2009 as you know and still a little (not completely healed but no pains now) and took 35mg/week for 3 years till 2012 end.

I am not sure if it has affected me but I had no side effects like jaw necrosis but just sometimes (which usually was starting on it again in case I took a 2-3 weeks break) was a little back and joint pains.

Now I do not take it.

I am just on Vit D + Cal + Mag but however, till this date, I am not completely healed. I do not have the same leg power that I used to have before having osteoporosis. Kinda feels sad remembering good old times but yes, I do not have any pains now. Just that they are not as powerful as they were ones. That means can't run longer distances without causing hip joints a little pain and distress.

Best,

-P.
Every child is special.

 

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