Bone pains in thal

Hi

In previous posts Danielle mentioned that she suffered from bone pains because of osteoporosis as well as Lisa . What is the cause of this in the presence of regular blood transfusion, shouldn't the transfusion prevent the bone marrow activity and therfore avoiding weak bones?? Is osteoporosis  accompanied with thal even if you take calcium regularly and transfusion dependent?

If this is the case with transfusion, what will it be with non transfusion patients? What should i check to try to avoid this,is the calcium levels or the bone density and at what age??? when do pains start? Is the calcium supplements we are giving to our children is of no use or the body can not absoarb it ?? I am so concerned, i can not bear it if my child feels any pains...

manal

Hi, Manal.

Actually, I believe (don't quote me) that the iron chelators (well, mainly Desferal, not sure about the others) pull the calcium from the bones, and the chronic anemia predisposes us to the bone issues as well.  If you keep up with the calcium intake (which I didn't ), I think it can be prevented.

I get regular bone pain from just having Major, especially when my counts get low.  Since I have Osteoporosis, it's easy for me to get small fractures and whatnot, so that causes pain as well.

Even on regular blood transfusions Thals can get bone pain.  When the hgb gets low, the marrow tries to make what it cannot, and causes throbbing and sharp pain at times.

A bone density scan can tell whether or not a person has Osteoporosis/Osteopenia.  I've pretty much had bone pain my whole life, so I guess it can start at any age.     However, I noticed it more as I got older.

Talk to your sons doctor about Calcium and Vitamin D, and see if he recommends him to take it.

Thank you a lot Danielle for your reply.

Actually when my son was first diagnoised he was put on a daily dose of calcium, vitamin D and B12 in addition to multivitamin, folic acid and L-carnitine. Three months ago when i checked the serum calcium, it was in the high normal.

So can i say that as long as the serum calcium is okay, it means there will be no pains or this is not a must??

thanks

You're welcome, Manal.  Let me do a little more research on this and I'll let you know what I find out.  A while back, a doctor told me that part about the iron chelators, but I'm not positive about it.  Regardless of the reason, it does seem that having Thal predisposes an individual to Osteoporosis, and they are still doing research on why this happens.  The chronic anemia seems to play a big part.

Well, a serum calcium level doesn't tell you how much calcium is actually being absorbed into the bones, just like a serum ferritin doesn't tell you how much iron is stored in the organs.  So, it's difficult to say whether or not a person is having bone issues without a DEXA scan (bone scan).  My serum calcium levels were always normal, and I ended up with Osteoporosis and Osteopenia, so I guess the calcium test is not such a great indicator.   

The effect of iron overload on the endocrine system and the hormones also plays a role in the inability of the body to maintain normal bone development.

Thank you Danielle & Andy for your concern definetly this is a complicated issue

manal

I asked our pediatrician about bone pains - he said that anemia can put a load on the marrow - in the bones  - which causes pain.    He says that they often note a a stage following transplant - in which the marow kicks in and patients experience bone pain.

I hope this helps. 

Sharmin

hi all :

all wahat i m going to write is base on my personal experience so please ask to your dr b4 taking any step .........

well when i was suffering to Osteoprosis and fracture in my shoulder an Orthopedic Doctor ( he is friend of my uncle ) told me to start Fosamax Tab but in the meantime i was suffering to the ulcer in stomach so he canceled to start this treatment and told me to start taking  Forsteo inj .He said , it is expansive but it wok's like a miracle  .  Forsteo Realy work's like a miracle .. fracture healed in 6 weeks as could u imagine a thal whose calcium level too low having Diabaties even cant walk and healed to fracture in just 6 weeks ........     as normal person ......... its Miracle .... i  m witness ...
 
it is my personal experience ...so please .....
                                                 ........................
                                                 Nice friend

Hi guys, I would like to clarify a few things.

Pain in thalassemia can be caused by many. Though the pain usually orginated from bone pain. Bone pain can be due to micro fracture as a results of osteoporosis or expansion of bone due to increased blood formation. But what is important is to find out the cause of the pain. Usually micro fracture pain, are pain in the weight bearing bone such as the lower limbs. Bone expansion pain are usually on the none weight bearing bone such as upper limbs.

Like any other pain, pain is treated like any pain management.

First is the symptomatic treatment with rest and avoidance of weight bearing, starting with mild analgesics such as paracetamol then NSAIDS or COX-2 inhibitor.

Secondly the treatment of the underlying cause, pain due microfracture due to osteporosis. Treatment of osteoporosis the best would be adequate Calcium suppliment of 600mg and Vit D. These two are the fundamental needs for most Thalassemics. But the most important of all would be Excercise. Excercise is the most important method of prevention of osteoporosis. Building bones are like building a house, you need bricks (calcium) to built a house but you need a builder too, without a builder you cant build a house with just bricks. The builders are the stimulus that exercise can provide. So by just taking calcium and all the suppliments in the world would not help you at all. The only medical treatment with proven studies on the treatment of osteoporosis with thalassemia patients is Fosamax or bisphosphonates (only ADULT studies). Where else, Forteo and strontium do not have studies on it. I personally would not recommend all these except for calcium and vit D and exercise for the treatment of thalassemia children with osteoporosis. I personally feel that all these medication might stun the bone growth. Until there are more studies on these, would i recommend these medication to the children. You can start bisphosphonates or strontium or forteo in adults.

I see a lot of post questioning how to diagnose osteoporosis and so obssesed with the diagnosis. I would like to say is that, diagnosing osteoporosis in thalassemia is not important. Why? because it is a known fact that thalassemia are associated with osteoporosis. It is improtant to prevent severe osteoporosis then to wait for it to happen. So get over the need to diagnosed osteoporosis.  Start the prevention and not to wait for it so get up and go for a light jog now. By the way, BMD does not have reference in children. It is only accurate in women above 45 years of age. So there is no point doing a BMD studies to prove that you are right or wrong.

And another thing is that Osteoporosis means weak bone not soft bone. It breaks easily, and it is symptomless unless there is fracture. Prevention of fracture is also another important component in the treatment of osteoporosis.

Hope this would help most of your queries. So happy exercising!!!

Mikekew,

 

Thanks for the informative post.

Zaini.

Hi  Mikekew ,
  ,
Wow .... wat a storming introduction to Bone pains and wat a storming Entry  ... .. its very very nice to have you here with us  .... please stay in-touch with us and keep posting the messages like this one  ... you're superb buddy ....  for sharing very useful information .....

Best Regards
Take Care
UmAir

Mikekew,

Thank you for the information that you have provided.  It is great to receive this information at this time as my son will have his first DEXA scan in 2 weeks.  He is 10 years old.  His bone age tests have been completely normal - he plays ice hockey, soccer, runs and is involved in numerous other sports.  His coaches have him skip rope a lot too - He is taking Osteocare - a supplement containing Calcium, magnesium, zinc, vitamin D and other trace minerals. 

I have been hopeful that the test results will not indicate any trouble with his bones, but considering that he has thalassemia major coupled with desferal and exjade raises some concern.

Thank you again for the information,

Sharmin

Hi Sharmin, Zaini, nice friends,

Hi guys, Thanks for your pleasant welcome. With regards to Sharmin, the thing that I would like to advice is the exessive use of DEXA scan to diagnose and to assess oseteoporosis. I do think that DEXA scan is overated investigation with not much practical use. In my opinion, it actually does more harm than good especially in children.

My reasons are,

1) DEXA scan is Dual Energy X-ray Absorbmetry, it is not important to know how it works but what is important is that it is an investigative tool that useses X-rays. X-rays means irradiations. Irradiations means risk of cell or genetic mutation. Imagine what it would do to the already immature sexual gonads of thalassemic child. Irradiation would also cause damage to the bone marrow function which is important in thalassemic child who needs good bone marrow function to produce new blood. DEXA has much higher irrradiation level than a normal x-ray.

2) Inaccurate comparative results for children and young adults.There are no accurate refferances for DEXA scan in these age group which is the common age group for thallasemic to have osteoporosis. You can get high rate of false positive or false negative.

3) Does the results of the DEXA scan alter the management of Osteoporosis in the Thalassemic child? No, it doesnt at all. Would you stop your osteoporotic preventive regime if the results comes back as normal? No, you still continue the preventive meassures despite the results. Would you increase the dose of the calcium or other medication if the results is low? No, the treatment of osteoporosis is not dose-related as in hypertension or diabetics. You still take the same dose calcium, zinc, forteo, bisphosphonates and still do exercsie.

So why in the world do we do DEXA scan? You see, doctors are thought to to treat patient on "evidence based medicine". It is the right way to treat but not in all diseases. Doctors lost the holistic approach in treating patients. I find the usage of DEXA scan is to treat the doctors and parents, not treating the child. If the results is back to normal, it makes the parents and the doctors happy and if comes back with worse results it adds anxiety to the parents and the doctors but at the end how does the results affect the management and the well being of the child.... NONE. Basically DEXA scan is to treat the parents so that they can sleep better knowing that their child is not osteoporotic but fact remains Thalassemia will have osteoporosis at a much younger age.

As I have said treat your child as a human being not as just figures of a DEXA Scan. If you child is symptomless and happy, why subject them to this harmful irradiation, which serve no practical advantange or change in the management of osteoporosis.Doing once in few years time is alright.

However DEXA scan is a very useful tool to assess the results of a treatment in the experiments of new drugs or in studies of osteoporosis.

Lastly, the main objective in the treatment in all disease is to give them a happy and productive life. Ask yourself if you are overprotective would they be happy? On the other hand you need to caution them to be extra careful. So let them be as happy as they possibly can.

Cheers.

How can we know there are micro fracture ??

manal