Discussion Forums > Thalassemia Major
Question for Andy...
Emby:
Thank you Andy....would be more clearer after scan. God willing, hoping it helps..
Emby:
God Bless you Andy....
Emby:
Hi...hope you are well . Andy or anyone please can I bother you for some help.
Four weeks ago my younger son H had very bad leg pains. The pain was felt in the muscles not in the bones.It spread to the stomach then his shoulders and arms. This lasted up to 4 days. That was 4 weeks ago. Yesterday all of a sudden the pain in the muscles of his legs came back, much stronger this time. H couldn't even manage to walk. We took him to A&E. Bloods were done and urine sample taken. The urine sample came back showing sugar and blood and the urea and creatinine levels were elevated. They don't know what the is cause of the pain or why the urine sample has come back as it has as his past history has been so good thank God. they did perform some test for blood sugar but again thank God it was normal. In between now and when he first had the pains he has been having problems with the stomach like burping alot and without having eaten, the feeling of being full. That's how it starts...burping, felling heavy in the stomach then the leg pains start. H has been on Exjade since end of December 2012. His ferritin was around 150 and he takes the tablets split dose, 2000 mg in total. Could this be too much for him? Could the Exjade be effecting the kidneys?
What could be the cause of the muscle pains, stomach cramps and the urine thing?
Its effecting him alot..he is not sleeping..eating properlly and when the pain is severe he can't walk.
Sorry for a lengthy email and hope you can make sense of what I have written.
Emby
Emby:
H has been admitted into hospital today. He has been told not to take anymore Exjade at present. They are putting him on the drip to help clear the kidneys and because of him not having drunk too much liquids. The glucose level is not of concern he has been told and should clear up...he has had blood tested a few times already and alhumdolillah was normal.A scan for the abdomen and kidneys has been requested. The doctors will keep him under observation....prayers needed.
Emby
Andy Battaglia:
Exjade can affect the kidneys and that is why the serum creatinine reports are done regularly. Staying well hydrated is essential, but even then, some patients will have toleration problems with the drug. I think we should wait for the further reports before trying to speculate. It may be that Exjade is not suitable for him and another chelation choice will have to be made. The kidney problem can explain all the other problems too. If creatinine clearance is low, muscle pain will occur. I think his problems will be corrected once his kidneys have become irrigated and flushed.
This is a warning to all parents and patients about the side effects of Exjade. Both serum creatinine and liver functions tests must be done at least monthly to ensure that the drug is not causing dangerous side effects. In between testing observation must be constant. Health problems with no apparent cause should be immediately reported to your thal doctors. All chelators require regular testing. Be vigilant and never skip the tests.
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