Too many problems with exjade

`Hi all

Sara is having too many problems with exjade. she gets sore tummy everyday also her urine has not been normal for over a 6 monthes. Her frriten is 2700 and has up for over a year now. The exjade doese not help,she is on the maximum dose of exjade. The doctors said it would not be good idea to put her on L1 as she said its not good for little kids. The only option for sara is the liqued chilation[ but i heard that it burns bones..can you plz give your oponions on what do think would be the best option
for her

burns bones?  No, it "only" makes my legs weak. So to not let her take a too high doses. The forum may be shocked, but 2 thursday ago I stopped immediately with Exjade. I developed over10 side effects. Or wait that is deferiprone (L1/Ferrirprox) and you talk about  Desferal. Never heard of it.
But you may consider:
A discontinue Exjade for a while and restart slowely then
B lower the dosage of Exjade.

After new year's break the most clever ladies and guys will return.

D

Alia,

My son also has stomach related issues with exjade, it gives him a stomach ache and decreases his appetite.  How old is your daughter and when did she start exjade?  Is exjade her first form of chelation?  Ferritin is not always a good measure of iron in the body - do you have access to SQUID or ferriscan? 

Desferal in high levels and over long term can have negative effects on the bones - however, high iron levels can be worse.  You can also talk to you doctor about combination treatment with exjade/desferal because this method reduces iron quickly and effectively in most patients. 

Best,

Sharmin

Thanks Sharmin and Dori
Sara is now 5 yrs old she has started exjade 3 years ago. This is her first chelation. She also have decrease appetite. Recently sara has done MRI scan for liver and heart the results has not been back yet. sharmin whats squid or ferriscan? is it similar to MRI scan? Sharmin your son was on desferal before how did he handle it? Was it really hard with injections everyday? iam really worried about Sara i dont know how she is going handle it all.

Alia,

Wait for the MRI results - they will give you a more accurate picture of your daughter's iron load.  Desferal is a big adjustment, especially for a 5 year old child.  Starting desferal is traumatic for the parents and the child - but can be made easier with a few techniques that I can give you if you have to go that route. 

If the MRI scans tell you that your child has iron overload then desferal a few nights in conjunction with exjade may be the answer.  Using desferal for about one year 3 times a week - is not likely to be toxic nor should it have a significant impact on her bones at her age.  Once her iron levels are low you may be able to continue using exjade alone - depending on how well things go.  You should discuss this with your doctor, patients that were in the trial did very very well.  My son went from having iron level of 2800 to 400 with the combination.  He was on the combination for one year and since then has been on exjade alone.

I also find that my son's appetite is low with exjade - I wish there was something to prevent or treat that.  Splitting the dose to twice daily is helpful to some and using Zantac is also very helpful. 

Have faith in Sara, if she requires desferal she will do well with it - have faith in yourself as well. 

All the best,

Sharmin

Alia,

How much liquid is she taking with the Exjade and what is her Exjade dose and her weight?

One thing that is helping many patients is splitting the dose of Exjade into two and taking half in the morning and half later in the day, either before dinner or before bed time. It should be taken on an empty stomach. Splitting the dose shows a decrease in side effects and patients seem better able to maintain normal liver function readings. Make sure that she is also staying well hydrated throughout the day. I think that adequate hydration is not being maintained by many Exjade users and that this is leading to more stomach and kidney problems. I would not make the judgment that Exjade is not working for her until you get the results of the MRI. If it shows iron overload in the organs, there is little choice but to change chelators. Desferal would probably be the drug of choice, but when she is six years old, I would ask you to consider Ferriprox in combination with desferal. Splitting the dose will also provide full chelation 24 hours per day.

Thanks Andy and sharmin
Sara is taking 625mg exjade in 80ml water. she is taking 30mg for a kg.

The recommendation is 3.5 ounces of liquid (103.5 ml) for Exjade doses under one gram and 7 ounces if the dose is over one gram. An additional small amount of liquid should be mixed with the residue in the cup and also swallowed. Make sure she stays hydrated during the waking hours. So, you can add a bit more water. I would strongly suggest splitting the dose and taking half in the morning and half in the evening.

I would also recommend the zantac - we were told in Oakland that zantac or lactaid can be taken with exjade to alleviate stomach aches.  liquid zantac relieves stomach discomfort very quickly and effectively. 

Also, if your daughter's appetite is low it was recommended to us in Oakland to offer foods such as cheese, full fat milk and nuts so that lil A can maintain his weight - it also helps increase appetite in the long run - if you're doing this along with splitting the exjade dose, increasing water intake and giving zantac. 

Best of luck,

Sharmin

It has been 4 months since we started Exjade on our 3 year old. I have been amazed by the results. My son's liver and spleen are noticeably smaller. (Drs confirmed that too). We noticed that just about 2 months into Exjade. We started at 10mg/kg and increased to 20mg/kg after 2 months. Ferritin isn't accurate measure of iron deposit, it's just a guide. 2 months after we started, Adel's ferritin level shot up to 2,000, we started at 1,200 (?) It's his general well being that we are impressed, he was previously breathless and rather dependent on O2, now, he's running around like he doesn't need any O2. We are weaning down his O2 to an incredibly low level. We even went out sometimes without the need of O2, but we just carry it along in case he needs it. Incidentally, Adel's on Zantac too, he's been scoped by ENT recently for other issues and has been prescribed Zantac due to reflux. It could be Exjade causing reflux? I'm glad I started Exjade and I ask now, why did I not start Exjade sooner? Yes, hydration is important, notice the change of colour of urine from brownish to normal, if given consistently. I give green tea, by encouraging him to take sips so often. That's my experience with Exjade.         

That's good to hear: Congratulations!
To me it sounds plausible that Exjade can cause reflux problems.