Question for Andy...

then I guess its just wait and see...

Both of the boys are not that bothered with 3 times a day over once daily....what does matter is effectiveness plus safety .
My younger son had to take Exjade because of liver iron increasing with ferritin already quite low and I'm praying, praying, praying,
God willing inshaAllah, that it works for him.

then I guess its just wait and see...

Both of the boys are not that bothered with 3 times a day over once daily....what does matter is effectiveness plus safety .
My younger son had to take Exjade because of liver iron increasing with ferritin already quite low and I'm praying, praying, praying,
God willing inshaAllah, that it works for him.

Oh your both boys are thal major? I pray for their good will.

-P.

Pratik...they are 2 incredible blessings sent to us by Allah the Most Merciful. My husband and I were given the best 2 boys ever.

Hello Andy,

My younger Son is doing well with Exjade....though we don't know what his ferritin reading is like since he started (400 at that time).
He needs to take it to reduce liver iron. I would like to know that with split dose would this make the ferritin reduce more when the point is not to reduce the ferritin then would a single dose help with the liver iron and maintain a good ferritin level?
A thought just came when typing this...if liver iron levels is steadily going up there may be other organs with increased iron that has not been seen yet. May God protect them from harm. Ameen.   

The ultimate goal of chelation is 24/7 coverage. This is because iron is constantly being released from the red blood cells that are being eliminated from the patient's body. When Exjade is taken only once per day, there will always be gaps in the coverage, creating the opportunity for iron to build in tissue. Even at low ferritin levels, the best way to keep the organs clean is by chelating 24 hours a day. Once the ferritin drops below 300, adjustments to the total amount of chelation drug used are made, but the technique does not need to be altered. There is some correlation between liver and pancreatic iron, but the connection to cardiac iron levels is not so clear. The best way to keep all organs clean is by ensuring there is always an active chelator in the body.

Thank you Andy....would be more clearer after scan. God willing, hoping it helps..

God Bless you Andy....

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     

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

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.

Thank you Andy....I hope it really is the Exjade because they are not sure what it is yet. H did't sleep at all much last night maybe just 45 minutes and he has been vomiting alot even  though he cant eat anytging, keeps bringing it back up. Some blood results:
Urea 11.4
Creatine 138
Alt 53
Bilirubin 71
Had Vitamin K to help clotting

scan done of liver spleen pancreas stomach kidneys.....alhamdolillah all is well. Drs saying they think it is due to exjade. Praying he gets better soon with God wills.

The creatinine clearance is good, so the kidneys seem safe. I'm not certain about the bilirubin number. Either it's a different scale than what I am familiar with, or he may have a gallbladder issue (gallstones are common in thals). Has he been keeping well hydrated while using Exjade?

He doesn't have a habit of drinking between meals...maybe just up to 2 1/2 to 3 litres.
He is not allowed food or liquids at the moment. Was not able to keep it down at all.
Allah is taking care of him...

Andy, H's reading for the pancreas is 300...the urine still shows glucose though the bilirubin and creatinine has reached normal levels. His blood test show that he is dehydrated so he has had 500ml of liquid twice now transfused quickly within 20 minutes and has been on liquids anyway round the clock since Sunday. His blood pressure is 150-162 over 110 and there has been problems with blood clotting and has 2 doses of Vitamin K via the veins. Alhumdolillah he looks well and the leg muscle pains have gone.He is on antibiotics to fight any infections he may have. Do you have any idea what could be happening at all? Can you ask for advice from someone....I am very worried.