PROBLEMS OF DESFERRAL

It is said that continuous use of Desferral makes blind and deaf.
How far is it correct?
Anyone with this problem.

No I dont think so.. very rarely one can develope a hearing problem.. so they ask you to do some audio tests.. if you are not using any other form of chealation, then you have to use Desferal.. it is the oldest and the most proved drug so far.

shikha

I’m not sure if you could be totally blind or deaf however, hearing and vision problems are one of the side affects of Desferal.

I have high frequency problems with my hearing and sometimes my ears have constant ringing.  When the problem was discovered I had to stop using my Desferal for 4 months.  This did improve the problem but didn’t fix it.  The high frequency problems first come to my attention when I was socialising at noisy places.  I was having trouble hearing the person next to me to the degree that I need to watch their mouth and guess what they were saying. Thal Majors on Desferal should get their ears checked once a year

I think Desferal could cause crystals in the back of the eye which untreated could cause vision problems.  Minority of the Thal’s in who attend my hospital wear glasses. Thal Majors on Desferal should get their eyes checked once a year.

sallam upon you / peace upon you all
    dear on my experiance with my boy i used to give him every day and on week holiday i gave him for two days continusely but under my observation and gave him alot of fluid like water any way from my experiance with my son i did't discover any problem also when my son sick and his temprature go up i stop give him desferal any way i think on my experiance you have to mantain the firetain level around 500 to 1500 because when i make the first bone marrow for him he was in this range but after his rejection on 19/february/2003 i found out his feritain level go up to 6500 even the Dr was fraid and he told me your son must be desferal infuse but i refiuse that and i deside to give him by his abdominal and as a highper infuse after 2 month i make for him another check i found out his feretain go down up to 2500 so my advice use the prober dose and make test every 2 or 4 weeks and have fun and go for challange like what i did....
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I believe all iron Chelator share this problem. It is because iron chelator also bind to other metal and certain metal are require for hearding and seeing. The lose of hearding and visual is a concern but not a major problem. It is because most of us are heavy loaded with iron and the iron chelator would bind to the iron instead. If you are too complience(it does happen to one of my friend), the iron chelator may start bind the the metal element in your ears and eyes instead. You have to be very low in firretain though.
Of course, everyone treat iron differently. People who have low firetain could have high liver iron. A person who have high heart iron (messure my T2* MRI) could have low liver iron. It is neccessary that you check your eyes and ears every year. If you feel there is change, contract your doctor. I believe it is reversible if you find out the early state.

its more than a joke 

welll , i would like to say  , plz folow the dosage that ur doctor prescript's u n dont exceed to that dose n keep well in-touch with your doctor when u r going to start desferal or anyother chelation drug ... . that is the best way to prevent/avoid any damage/side-effects ...

Best Regards
Umair

My problem with Dfo is that my blood pressure is very low when i make dfo, about 45/65.
From 23.11.09 i take only ferriprox.

My blood pressure also drops a little when on desferal.


Lena.

well it is not exactly like that. however if someone takes high doze of desferal even thru the pump, it may someitmes cause vision blurness, as it happens in my case. but that goes off when i discontinue the usage.

Fouad

Flouad I totally agree with you, it's important that the dosage is correct. If desferal is dosed too high it can be toxic and effects eyes and ears (once a Year we need to check them).
Years ago I had problems with my heart and the doctors were so afraid that I'd to be hospitalized and they gave me 6 gr. of desferal i.v. within 24 hours for 3 days. Within these 3 days I lost 60% of my eyesight on both eyes I was so scared to become blind and asked them to stop the therapy. The doctor said they could live with these side-effects, of course they can..... what an answer from a doctor 
But luckely we're the ones who decide and know better what is best for us. At the end they decreased the dosage to 3 gr. i.v. and my eyes recovered. With the right dosage, side-effects can be avoided.
Best wishes, flyaway

i dont know if it diabetes or desferal that i used in past  but i  m having vision blurness probleme , almost everyday sometimes srious sometime minor ....

Years ago I had problems with my heart and the doctors were so afraid that I'd to be hospitalized and they gave me 6 gr. of desferal i.v. within 24 hours for 3 days. Within these 3 days I lost 60% of my eyesight on both eyes

The doctor said they could live with these side-effects, of course they can..... what an answer from a doctor 
But luckely we're the ones who decide and know better what is best for us.

That dose is way too high to be given to anyone in 3 days. it is a total ignorance and negligence on the doctor's part.
We, have somehow become more good doctors than the actual ones.
Thanks God that you recovered from that state

Fouad

Thanks Fouad I'm also happy that everything turned out to normal. You're totally right we are better doctors than the "real doctors" at least for our conditon.
All the best, flyaway

I'm happy for you.

Fouad