Does Exjade cause Leg cramps?

Andy, Do you know if Exjade cause leg cramps? Little E's ferritin is around 350 and she is on reduced Exjade dosage. her last ALT/AST/Creatinine reports were all normal but last few days she has been complaining of pain in one leg along with pain in the belly below naval. We have not taken her to the doctor yet but I am started to get worried. Let me know if you have any comments.

Bostonian,

I think it may be worthwhile having her seen to rule out appendicitis etc.  Giving her more fluids might be helpful as well or try a little bit of electrolyte drink such as pedialyte mixed with water.  Leg pains are common in kids - both of my kids have growing pains but it is always best to have her checked out.  Has she been having any problems going to the washroom etc?  Maybe skip exjade for a day...

Best and please keep us posted,

Sharmin

Hi Bostonian,

Leg cramps are listed as a side effect in less than 1% of Exjade users. It may be that at the low ferritin level, her dose should be lower, but it may be related to thal also. Does she take any magnesium supplement? I would agree with Sharmin about stopping for a day and see if it improves. If so, perhaps the dose should be temporarily lowered.

Thanks ANdy, Thanks Sharmin for your reply. We took her to the doctor and she suggested to increase the fluid intake. We do not give her a seperate Magnesium supplement - whatever is there in the gummybears is what she gets. This time when we met Dr. Ellen Fung in Oakland, she suggested to give her centrum instead of gummybears. As per her, those gummy bears really do not have the vitamin content that they claim. But it is really hard to give a 6 yr old centrum. those don't taste very good - even the recent flavorburst cheweables. So we are still continuing with whole foods gummy bears.

Andy, for Mg supplement what will you recommend?

How's our little E doing?  Hopefully the cramps have settled.  I am guessing that the increased fluid intake will help.  
I find having my children stretch protects them from cramps.  

As for vitamins I give little A a plant based cal/mg supplement and I also give him a zinc/copper supplement.   I will post the brand names soon as I don't have them with me.

Lastly, her ferritin level being so low (at low levels ferritin and actual iron levels correlate very well) just be sure that her exjade levels don't need to be decreased as Andy said.  While it is essential to have chelation in order to prevent free iron from harming other organs - it is also important to ensure that exjade does not begin to leach out other essential minerals.  It is a very fine balance at this point.  Also note that a certain amount of iron is necessary for children in terms of neurological growth and function.  I think Canadian Family also posted about reducing chelation and increasing fluids when iron levels are very low.  

You guys are doing a very wonderful job - with iron levels so low she will not have any effects of thalassemia whatsoever.  

Hope our little lady is all better in no time!  

Sharmin

I was having very bad pain last night (and still a little) in my liver (possibly liver only because I don't think it was a muscle pain).

7 days ago on my reports, the SGPT was 140, thereafter I reduced dosage but last night all in once I started suffering with little pain.

Am good this morning, but was wondering. Skipped exjade today.

If the pain is in the upper right quadrant of your abdomin the pain can also indicate gall bladder problems - the pain can indicate either stones or sluge in the gall bladder both of which thals are prone to.

In either case, it is a good idea to see a doctor, if there is an issue with liver it is best to be assessed.

Sharmin

Hi,

Yes, Little Miss A complains about leg cramps or pain when she takes Exjade. Sometimes the pain was severe enough we had to give her Tylenol or Advil. We noticed that she is not complaining anymore after she is off of Exjade for the last 2 months. The leg pains can be associated due to lack of calcium or magnesium, growth pain or it could very well be due to Exjade. I am now suspecting that it is repeatedly experienced by children taking Exjade.

If the pain is in the upper right quadrant of your abdomin the pain can also indicate gall bladder problems - the pain can indicate either stones or sluge in the gall bladder both of which thals are prone to.

In either case, it is a good idea to see a doctor, if there is an issue with liver it is best to be assessed.

Sharmin

Hi Sharmin,

Luckily I've pain in lower extreme left side.

A month or two ago also I had have this pain which stopped after 30-45 minutes. It's a little of discomfort.

Should I be over-worried?

I've taken only 400 mg of Exjade today (1/4th of my daily dose viz. 1600mg).

-P.

Just since today morning, I'm having little what extreme pain in my right leg's middle joint. If I try to move it or bend it, it pains so hard. I only took 400mg of Exjade today.

-P.

Pratik,

Does the pain extend into your back?  (suggesting kidney involvement). 

I would definitely advise that you see a doctor, especially if you are taking a plant based calcium, magnesium and a zinc/copper supplement with regard to your leg pain. 
Do you have any history of this?

Appendicitis for more people presents with pain around the naval and extending to the lower right quadrant of the belly.  The lower left can be muscle pain or problems with your large bowel.  Severe abdominal pain should not be ignored - although in most cases it is not serious - rarely it can be a serious issue such as obstruction or kidney trouble. 

I personally feel that if you are having an abudance of water and taking supplements then exjade is not the problem.  Are you splitting your exjade dose?  I also suggest that exjade be taken with food. 

Please keep us posted and get medical attention to rule out any problems,

Sharmin

Pratik,

Does the pain extend into your back?  (suggesting kidney involvement). 

I would definitely advise that you see a doctor, especially if you are taking a plant based calcium, magnesium and a zinc/copper supplement with regard to your leg pain. 
Do you have any history of this?

Appendicitis for more people presents with pain around the naval and extending to the lower right quadrant of the belly.  The lower left can be muscle pain or problems with your large bowel.  Severe abdominal pain should not be ignored - although in most cases it is not serious - rarely it can be a serious issue such as obstruction or kidney trouble. 

I personally feel that if you are having an abudance of water and taking supplements then exjade is not the problem.  Are you splitting your exjade dose?  I also suggest that exjade be taken with food. 

Please keep us posted and get medical attention to rule out any problems,

Sharmin

Are you talking in regards to my leg cramps? Either way, no, I do not have back pain. And I'm feeling better today, just a little bit leg cramps are still there which I believe would be solved in no more than 1 or 2 days.

For calcium/magnesium supplement, I take Osteocare (800 mg cal + 350mg magnesium + 10mg zinc).

I love water and stay hydrated all the times. I drink 6-7 liters of water daily even during these wintry days.

Yes I'm splitting dosage (800x2). However, I took only 400mg today.

-P.

Pratik,

Possibly a simple answer, as cramps can have a simple cause. It may be that you need more salt and electrolytes. Drinking a lot of water can dilute these basic minerals, leading to muscle cramps. I find that salt usually helps, but an electrolyte drink may be needed.

Pratik,

Possibly a simple answer, as cramps can have a simple cause. It may be that you need more salt and electrolytes. Drinking a lot of water can dilute these basic minerals, leading to muscle cramps. I find that salt usually helps, but an electrolyte drink may be needed.

I eat a lot of salt though.

Pratik,

Maybe try eating a banana a day for the next few days...balance the sodium & potassium