Desferal not working

Archana,

I am so glad to learn about the decrease in your Ferritin levels. Keep up the good work.

The recommended amount of water to use with 2g is 20 ml. With your iron level you really need to be taking for longer periods at a time. Even if you could manage a couple days a week when you took at least 12-14 hours, it would make a difference. Honestly, I think you need combination therapy to get the iron load under control. You would most likely be eligible to get Ferrirpox in the US. The biggest problem is that desferal only chelates while you are taking it, so for 2/3 of the day you are getting no chelation. For high iron loads especially, the chelation goal should be as close to 24 hours per day that you can get and this can be accomplished with combination therapy of desferal/Ferriprox or desferal/Exjade. Even a low dose of Ferriprox daily would help if added to the desferal. I know a patient who has used desferal and kelfer (Ferriprox) in combination for years. She can only take 1/3 to 1/2 the normal kelfer dose daily due to joint pain and she has to stretch her desferal simply due to the cost of desferal, but she has managed to keep her iron load under control and has a T2* score of over 20. She dilutes the desferal even further and takes for up to 18 hours when she takes desferal, which is only a few times weekly at most. Although she created this method on her own, I learned that this method has since been tested and it was discovered that taking the same amount of desferal over a longer period of time will definitely provide a better chelating effect, even though the same amount of the drug is used. The length of time taking desferal is very important.

Hi Andy,
Another great help from u dear Andy. Actually i was thinking about taking 1.5g desferal in 20ml for 18 to 20 hours and i just find this post. Is it Ok? More hour and more dilution.

Hey guys!

Its been awhile so I thought it was time for another update....

My ferritan had started to plateau around 6000 and besides that I was having trouble sticking myself. I would have the needle in my hand and would just sit there with it hovering above the site. I took me forever to actually poke myself even though I used an local anesthetic cream so it wouldn't hurt.

So a few months ago and after some conversation with my docs we decided to switch me over to the ferriprox. I am now taking 2.5 tabs three times a day of the ferriprox and wtith two months my ferriton has dropped to around 4500. It makes me excited that I have started to go back in the right direction again but I'm still caustious to see if the downward progression will continue or if it will plateau again like the desferal did. If it does plateau out again then my doc said that I would have to go back to the shots every night on top of the ferriprox, which I'm okay with as long as the decline continues. Hopefully it doesn't come to that.

That's it for now...thanks to everyone for their comments and support!

Archana

Hi Archana,

I am happy to hear that Ferriprox is working for you. Now that you have been off desferal for awhile, you may find it a bit easier to occasionally use it in combination with Ferriprox. Knowing you don't have to do it, may actually may it easier to take. It would help your ferritin to drop quicker and get into a more comfortable range. Although Ferriprox works well in the heart, it is not as effective as desferal in clearing liver iron, so you may want to consider some desferal too. Once your ferritin is under control, Ferriprox may be all you will need, as is the case with our member, Poirot.

Dharmesh,

Yes, the longer you take desferal, the better the results, even when not increasing the mount taken. I learned this from an Indian patient who did this out of necessity due to low stocks of desferal. When I heard this method confirmed by a world renown thal doc at the Singapore conference, I wrote in my note pad that (the patient who developed this method on her own) is a genius!

Now that you have been off desferal for awhile, you may find it a bit easier to occasionally use it in combination with Ferriprox. Knowing you don't have to do it, may actually may it easier to take. It would help your ferritin to drop quicker and get into a more comfortable range. Although Ferriprox works well in the heart, it is not as effective as desferal in clearing liver iron, so you may want to consider some desferal too. Once your ferritin is under control, Ferriprox may be all you will need, as is the case with our member, Poirot.

Ya thats exactly what me and my doctor are hoping for. However, she has a cautious approach to changing things. She likes to change only one thing at time. So first we switched from desferal to ferriprox to give me a break from the needles and to see how well it works for me on its own. After 1 or 2 more months, we will meet again to discuss adding desferal once or twice a week on top of the ferriprox.

This gives me hope for more control...

Dharmesh,

Yes, the longer you take desferal, the better the results, even when not increasing the mount taken. I learned this from an Indian patient who did this out of necessity due to low stocks of desferal. When I heard this method confirmed by a world renown thal doc at the Singapore conference, I wrote in my note pad that (the patient who developed this method on her own) is a genius!

To Dear Andybro,
It is Really Really Admirable. Want to write a quote "Necessity is the mother of invention." Getting cost effective desferal was a tremendous difficult task before some years and still it is unaffordable for many many Indian and other patients , i am feeling sad about Sajid's case, was low stock, availability, the reason?
You just hide the identity of the Indian genius patient, who is this fellow?

FYI: Perhaps Cipla Ltd is going to launch generic Desferioxamine within Six months, but i am not having any supporting documents.

The Indian patient is a member of this group and one of the older Indian patients, but I must always respect her privacy. She has spoken of this herself in the past. Her chelation routine is out of necessity, as she can only take 1/2 to 1/3 a dose of kelfer due to joint pain. She takes desferal, but this becomes costly, so she stretches it out with this method. Since I have known her, I have had her taking vitamin E also and it really has made a difference.

The Indian patient is a member of this group and one of the older Indian patients, but I must always respect her privacy. She has spoken of this herself in the past. Her chelation routine is out of necessity, as she can only take 1/2 to 1/3 a dose of kelfer due to joint pain. She takes desferal, but this becomes costly, so she stretches it out with this method. Since I have known her, I have had her taking vitamin E also and it really has made a difference.

To Dear Andy,
I agree with you and privacy must be respected.
If only 1/2 or 1/3 dosage of Kelfer is going in than what is the Iron level, whether it is under control?
COST & AFFORDABILITY is a global issue, Why Bill Gates, Warren Buffette and Clinton Foundation are not looking on Thalassemia for Charity?
Again on Vitamin E i visited that link GNC VITAMIN and found that this Capsules much costly.