Desferal

Hi to all
Sara is starting desferal very soon.  Sara is still taking feroprox,it seems that the ferroprox did not really worked for liver iron. About a year in half ago she switched from exjade to ferroprox, reason was exjade gave her too many side effects and it stopped working on her after taking it for 3 years. Her T2 is 15. which quite high so they decided to give her both drugs together (ferroprox and desferal)
Sara is now 6.5 years old. I have a lot of concerns regarding this drug,i was scared of this all along i have read about it but i cant get my head around it.
Please help me get better understanding of desferal.
Info on the needle
Most common side effects
How do you/they/or she or he felt about taking it every single day?
Is it very sore when the medicine is going inside the skin?
how do you turn and twist at night when the injection stuck to your stomach?
Do you go to toilet more often then usual ?
Can it be given on the legs?
Any other info in will be greatly appreciated.
Thanks
Alia

I don't have all your answers, but my daughter, now 6, was on sub q desferal. We found she did not sleep as well during the time she was on it, I suspect it is from being hooked up. She did develop a red, dry patch at the injection site, but there is a cream available that can help with that (my doctor didn't prescribe it): Triamcinol Acetonide Ointment.  Desferal is the only thing that has brought her iron levels down.  Her urine may be orange, but that only means the med is working.

Lori M

Thanks for a replay
iam sure there will be other people is well who could help.
please help.
Alia

Desferal and Ferriprox together is the best chelation method currently known. Taking desferal 7 days a week can be difficult for children and when used in combination with Ferriprox, it is usually used 2-5 times per week.

It would be best if an experienced parent answered the other questions.

We used desferal for our son.  Have you considered exjade?  Desferal can affect the bones and may reduce growth in the spine, affected upper body height especially if used very early in life.

Also, you have to be prepared for the psychological and emotional aspects of desferal which involves placing a needle under your child's skin each night.  Although it can work well for iron reduction, Exjade may be a better option for you.  Exjade needs to be started slowly --> for which we can guilde you if you choose that route. 

I tend to think that exjade may be a good choice for children but you need to determine this with your health care provider.  Our son was on desferal for 8 years, we managed quite well but I am ever so glad that he is now on exjade. 

I hope that exjade, ferriprox combination will be studied and found to be safe and effective soon.

This is my personal experience, but you and your doctor will iikely find the best choice for your child.

Sharmin

The needle with the seb Q pump was very small. It doesn't go in like a shot or IV. Ours was on a disc and MAYBE less than a quarter of an inch. We numbed the area. Wiped the cream off, cleaned the are on the abdomin with rubbing alcohol and then just kind of set it in place. She hated it, but still fights for her port access too. It doesn't hurt, she just didn't like it.

Lori

Thanks for your replies
 Sara has started desferal last week and already has done it 5 days. It was done at the hospital. From now on i have to be doing it for her at home. So far she is ok with it. She is just scared when the needle goes in. I am still scared when she wakes up at night she might take her needle out. Already i am confused of where to put the next needle. Its very scary experience.sharmain  did your child growth got effected due to desferal ? I am scared the growth part is well. This was her last option, exjade was giving her too much side effects and it was no longer working on her. I wonder if would be needing to give her any other medicine with it.
Alia

Hi Alia,

Both my boys grew up with the Desferal. They had it for about 13 years and they were fine with it. Sleeping was not a problem as they had it all covered with night clothes. The pump was actually placed in a outer sleeve, a material casing which had long straps, a bit like very wide bra straps, which crossed over their backs and over their shoulders and was attached to the sleeve. The straps can be altered in length so I used to allow the pump to rest on their stomach area. They told me that when shifting positions while sleeping, they would sub-consciously move the pump with them but usually it didn't really effect their sleep. Yes sometimes the needle used to come out during the night and I would wake up during the night to check and re -attach it but I realised that this was disturbing their sleep more so then I didn't carry on doing that. The needle is so tiny it didn't cause them any injury at all when it had come out which it rarely did. I used to insert the needle with a bit off surgical tape to make sure it was held down properly.
As for where to place the needle I used to alternate it around the tummy area to allow the site to recover so one night it would be on the right side of the belly button, the next night on the left, next on the right but slightly higher, next on the left but slightly higher, next on the right but a bit lower, next on the left but a bit lower and then repeat the whole thing again.  I used to pinch the area where the needle was to be inserted between thumb and finger so that bit of the stomach is raised so that it would be easier to insert the needle. Sometimes the area looked a bit raised, bumpy, was sore, perhaps due to the desferal clogging up under the skin a bit. I used to just rub this area with some cooling moisterising cream and the area would settle. Alhumdolillah, they do not have any marking or scars at all around the tummy area.
As for their growth this has not been effected at all. They are taller than me and still growing. I still think that Desferal is a really effective chelator and especially so if ferritin is really high if it used as in combination with Ferriprox in order to bring the ferritin reading down. Both brothers are taking only Ferriprox now though for the last 3/4 years and they are happy about not having a needle put in every night and as a mother I understand that you do not want to see your child having to do this every night but your daughter should be able to understand things and explain to her in the way she would understand why she needs this. My oldest has just walked into the kitchen where I am sitting and typing. He has just woken up, it's 1.30 in the afternoon....it's disgusting!! Asking him about it again he says it was painful sometimes when inserting the needle and he remembers taking it off straight away and inserting in a another site but does not remember it being uncomfortable other than that.   I have just asked about using it again, he says he would not like to but would if he has to.       

Thank you very much for reply Emby
It helped me great deal. i got  so much understanding now. I think this sight is the best.
I am really glad your sons now is on tablets and its working.
Alia

Bismillah.....Dear Alia I hope everything goes well for little Sara and like you already do..chelate religiously. Whatever works best for Sara
always do it absolutely always as this will maintain her good health along with the regular checks, heart-ears-eyes and especially MRI, Dexa scans. And always try and have a positive attitude especially regarding the chelation cos this would definately pass on to little Sara.

Both brothers were also on combination of Desferal and Ferriprox cos their ferritin was almost 3000. My eldest son's heart scan revealed that he had high levels of iron on his heart and for both moderate liver iron and the combi therapy helped clear the heart and liver, alhumdolillah. Their ferritin reading borders around 480-500. By the Will of Allah both these meds used together will help to bring the levels to normal for little Sara quicker.

Thanks so much Emby
Did you use any numbing cream for them to numb the area where needle was to be inserted? If yes did they had any reaction to it ? Sara is having reaction to the cream so all the area the cream went on is red. Her stomach also bumpy. I wonder is i could use something else instead of the numbing cream?How old are your boys now Emby? How are their health? If you dont mind me asking which country where they born and currently are?thanks
Alia

Be very careful with Emla cream and used it only as prescribed in the amount prescribed. It is a drug and is absorbed through the skin, so do not use more the prescribed.

Thanks Andy for your reply
I was given Emla cream to numb the area,i haven't been told how much to use each time. I just use a little but its still giving her reaction, so i am thinking if would be able to use something else?
Alia



i

Bismillah.....

Alia if you are mixing the Desferal with enough saline water, about 20mls, then I think Sara would not have the 'bump'. It seems like a long time since I stopped making up the Desferal solution for the boys but I am quite sure you need to mix the solution in enough saline to stop that happening. Perhaps Andy can advice you. I didn't use any cream at all when it came to Desferal but when my eldest son was very young he was hard to cannulate. We used to apply Emla cream on the back of his hands then but we found that the veins would sort of disappear so we eventually stopped using it. His little brother did not use anything at all. Both of them do not like the numbing spray either but perhaps you can use that.
My eldest is 19 and his brother 15. Alhumdolillah health wise they are very well. I pray so hard that Allah Ta'ala keep them that way always. Eldest doing his first year at Uni, a Computer Science student and is doing very well and the younger one is stressed with his GCSE's at the moment but he is bringing home the grades too. Both born and living in England. Where are you from? Do you have more children?   

The ratio of desferal to water should be 10 ml water for every gram of desferal. If you are using less, it will cause more irrittation. It is allowable to use more if the desired length of chelation is longer, but don't use less than this ratio.