exjade and cramping in legs

Andy,

We have recently returned from a vacation.  Little A was very active and happy during the vacation, and we did a lot of walking. 

Since he has been back he is very exhausted.  His hemoglobin looks fine, he was transfused before we left but he is complaining of cramping in his legs, beginning at the hip and his shoulders.  He is usually very active, but the last two days he has been complaining of the cramping.  Yesterday evening after soccer practise he came to the car in tears saying the cramping was so intense he fell to the ground in pain.  I was quite worried so I didn't send him to school today and am letting him sleep in.  I have given him a lot of fluids. 

Should I be concerned?  Could this be fatigue from the walking and travelling?  Could this be related to exjade relating to his kidneys?  The last few times we missed the uring test so we collected one today and are awaiting results. 

Thank you for your help,

Sharmin

Hi Sharmin,

Little Miss A complained similar cramping when she has to walk long time. I do not think this is exjade related, it may very well be from walking and traveling. I would try rest for few days.......

Hi Sharmin,

It sounds very much like little A got dehydrated during the trip, which is common when traveling and normal routines get upset, especially when visiting a warm climate. I am always concerned about Exjade users not getting sufficient fluids, but I think once he is re-hydrated, he'll be himself again. Plenty of fluids and also some salty foods.

Thank you so much Canadian Family and Andy, I think you are right.  He was very excited and walking faster than the rest of us the entire time, and it was very hot the entire time. 

He had cramps for the last 2 evenings and very severe cramps during soccer practice - today he is saying that his legs feel stiff and going up the stairs is very fatiguing.  I am guessing that is all related to the dehydration. 

He has been drinking fluids since he woke up this mornig.  I hope he'll be better soon.

Thank you again,

Sharmin

Andy,

His urine analysis came back as follows:

creatnine 5.65
protein - 0.10
protein/creatnine ratio 0.018

I don't know if these values are normal... Can you help me?

Sharmin,

Do you have the units the creatinine was measured in?

Andy,

I don't have the units.  The unit clerk read it out to me over the phone. 

Does the creatnine seem off?

I am also having cramps and pain in joints since past 2-3 days. Also some pain near the heart, am little worried.

Sharmin,

I can't say anything about the creatinine without knowing the units. I suspect nothing is off much because the protein/creatinine ratio is within the normal range.

Pratik,

What chelation are you currently using?

Pratik,

I hope that you feel better soon.  I have been replenishing little A with coconut water (with minerals), cal/mag, vit B since yesterday and he seems a lot better. 

During our trip he decided it was a great idea to sprint everywhere, he was running very fast the entire time and the temperature 108 F some days.  I think he must have been dehydrated, because he is usually not affected by physical activity, he constantly plays ice hockey, soccer and is in track and field. 

Other than dehydration, there are many reasons for cramping - ranging from minor imbalances and deficiencies to more serious such as kidney, liver or problems with blood sugar.  It is a good idea to see a doctor to rule out anything serious - even though the minor problems are more likely. 

I am curious to know if you are on exjade, and if there is a link between exjade and dehydration and perhaps mineral deficiencies. 

Andy,

Thanks so much.  You are so right, exjade users really need to focus on staying hydrated and keeping their vitamins and minerals replenished. 

I think we need to emphasize the importance of hydration regularly. Whether a chelator removes iron through urine or feces, the importance of water cannot be overlooked. All chelating patients need to stay constantly hydrated. In conditions where hot climate and exercise are combined, added precautions need to be in place. Don't go anywhere without a water bottle. And with Exjade, we need to be even more aware of the effects of the drug on the kidneys and make sure that fluid intake is sufficient. I was troubled recently when a very well known doctor recommended a young child start on Exjade with only one spoonful of liquid. I find this inadequate and that this does not recognize the importance of hydration with this drug.

Andy,

I think dehydration was very much the problem.  We had him drinking a lot of fluids, and taking his B force and cal/mag/D supplements.  He is back to playing soccer an hockey with no problems.  We will make sure he gets extra hydration when it's hot. 

Sharmin

Sharmin,

Glad to know our champ is feeling better

What about stomach cramps? does anyone have those on regular basis,Little Z experiences them on daily basis ,i try to cure it wil home remedies and it does go away but its been some kind of a routine now,is it related to Asunra or should i be worried ?

Zaini.

Thanks Zaini,

Stomach cramping and problems have caused us a lot of grief with exjade.  We have found that splitting the dose and giving it to him with meals has improved his stomach problems greatly.  We also do our best to keep him hydrated.  It is also a good idea to ensure that they have enough fiber in their diets so that the exjade does not remain in the gut (I am only guessing that this may be an issue) and lastly, we use pepcid to alleviate his stomach issues.  Pepcid is often prescribed with exjade.  We give it to him for 1 month, then stop for one month.  Over time i think this has been very helpful.

I hope Lil Z's stomach issues improve soon.

Sharmin