Iron Chelation via IV drip

IV desferal is common. Lisa always got it along with her transfusion and also went in once each week for IV desferal treatments. I was recently told that they are now giving it along with blood in the Maldives. I don't know how effective this method is compared to subcutaneous injection.

Hi
I have my blood together with my IV desferal as well. It runs concurrently. My dose is quite strong. About 6g which means 12 vials diluted to 500ml. It runs on the average of over 16 hours.

Whether it is effective or not.... it is a good question. I'm questioning as well, but my rationale is that at least it's better than nothing.

I used to get reactions when Desferal was given to me via I.V (intravenous)

Sahil asked me the same thing and I have replied about it to Sahil at http://www.thalassemiapatientsandfriends.com/index.php?topic=70.msg2815#msg2815

It varies person to person. So you have to give it a try at least once to know if you are allergic to Desferal via I.V

Take care, Peace!

Hi
I noticed that in the past, when I had my desferal run really fast I get a reaction too. My face feels hot and turns red and itchy. This would slowly spread to my neck but when I stopped the Desferal or slowed it down drastically, the symptoms stopped.

Hope it helps

My wife is going to start an IV drip next week and the doctor has determined that the best way to go is a port rather than a needle.

I would like to know any consideration for side that it should be placed and any other comments.

She tried EXJADE and had a serious reaction.

Her iron build up is due to many transfusions.

Thanks

Mike

Hi Mike,

How long is the IV drip planned for? A port does entail surgery, and also possible complications such as clotting and infections. Doctors absolutely love ports because it makes things so easy, but it is NOT necessarily the best thing for the patient. Making things convenient for those administering medication should not be the primary reason for a port. If your wife's veins are in good shape and easy to find, a port should not be automatic. My wife was pressured towards getting a port for chemo, but I had heard so many stories in this group about problems with ports, that she opted against. They never had a problem finding veins and her chemo progressed with no problems. I feel that the length of time needed is an important factor. If it is short term, I would say no port. By the way, Lisa got an IV drip of desferal once each week without a port. She did have a port at one time but it got infected and she had it removed.

We had a discussion about ports at our old MSN group. Both the pros and cons are discussed. I would pay particular attention to the post by AstonDialo who has had five ports and may have the most experience of any of our members concerning ports.

http://groups.msn.com/ThalassemiaPatientsandFriends/general.msnw?action=get_message&mview=0&ID_Message=1515&LastModified=4675487081142849608

Hi everybody,

I want to speake from my experiences with port-a-cath.
The first port i get in March 94 to try an high dose therapie with IV Desferal. No one had experiences in this area but it was my only chance to save my live.

After 18 month i get the first septicemia    because of an contamination with a strain of bacteria you will finde on every skin. It was eliminated by antibiotic. During the next year the port get repeated contamiations.    Fianly the doc explaned that it would be to dangeros to let the port in because the interval between one septicemia to the next was monthly. Sooner or later the strain of bacteria would be resistent for abtibiotics. Therfor they would explant the port and implant a new one a few month later. So we did. In december 96 explantation and May 97 a new port.

I thought now things woud be better but also this one get contaminated. At last every time they pricked the port ( every  14 days) I got fever for a few days.  Again doctors told me to explante the port and insert a new one. But this time i refused an other surgery  even i didn't know a better way for me.  

To finde a solution I began to read a lot of medical reports concerning this topic. 

I find out that those who used port for regular transfusion or food intake developed more often an septicemia then thouse who used it for chemiotherapie, because blood and food through infusion are perfect culture medium for bacteria. 

Than I read an abstract about a thalassemic who recived 18 ports in nine years. It was clear for me to find soonly a solution because i never want to pass through so many surgerys in my life.

After a while I find a way and I only had to convince the docter that this would be a good way. It was very simple. After every use we inject a solution of 10 ml NaCl with 200 mg Targocid (antibiotic) and a little bit of an anticoagulant.    By the way, I still have same port from 1997.

Hope this can help somebody of you

God bless you

Gabri,

That is the best method of dealing with preventing port infections I have ever heard. Just shows the patients often know more than the doctors. 

Yeah, it' realy good and saved me from a lot of surgerys.
A lot of doctors heard about this method but no one trusted in it. its das isn't it.

During my life i have learned to get as more information i can get to finde ways for upcoming problems.
Even it's not easy i know it's not impossible. 

Yeah, it' realy good and saved me from a lot of surgerys.
A lot of doctors heard about this method but no one trusted in it. its das isn't it.

Which part of the body is the port placed at? Is it obvious that there is a port? I heard that there will be something potruding from the skin and it is placed below the collarbone.

I am looking into ports because it is a torture everytime I need a vein. All my veins have been burnt by medications they gave me due to the agranulocytosis. But i need to find out more about it first and know what I'm getting myself into. Are there any restrictions to observe when you are carrying a port?

It is placed below the collarbone. It will be sutured up on the pectoral muscle. They sutured the skin also. Therfor you caan immagin wher it is placed but because of the clothes noone will see the little suture.
If you have problems to be priced this will be an alternative.
The time the needle is insert you have to be carefull. Don't take shower cause of the infection and don't move the shoulder to exessive because it can dislocate. The higest risk is to get an infection, clut or dislocation.
Observe the advices of your doctor and then i'll hope you never will have any problem.

Best wishes

I would like to comment on the topic of Iron Chelation via IV Drip. I cant tell you how much a favourite subject this is for me.

Let me just say that I am not convinced about this method.

Reason are as follows:

1) Question I ask is, which would be easy putting Desferal in blood or through a injection under your skin? well most people like me would say blood. Because you get punctured anyways and its quite regular.

2) In 1960 when the researchers came up with Desferal, they indicated that this drug would be more effective when given subq over a period of 8 hours or greater. All those who have used desferal knows this rule right.

3) Does anyone know when or where was the first trial carried out for using Desferal in blood? Was there a trial did the FDA approve the new delivery method?

4) Do you know blood is a prescribed drug and according to FDA you cannot mix any other drug in it?

5) Delivery of a drug is impotant for the absorption of the drug and this usually does not change overnight unless a different drug is created. How many drugs do you know have dual use i.e. can be given orally and intravenously for example vitamin C tablets can be ground and mixed in blood should work the same way right? haha dont try this at home.

6) There has to be some serious research and development to be done, not to mention change some molecules of the drug so that it can work for the new delivery system.

My observation, they wanted to up the sales for Desferal and the only way to do that would be to sell more drugs so how to create demand, well very simple tell the doctors the drug works in the blood too.

I am only going to ask this one question to put a seed in your mind. Are you willing to risk it all by taking Desferal only through blood and no other Iron Chelation? no oral no subq if you are then go ahead and prove me wrong.

Ashish

Hi,

Many people find it "Comfortable" but I am allergic to it and causes my skin to take a bluish hue and have a real hard time breathing.

Furthermore there this issue about the half life of Desferal. If it goes to quick the it comes out quick as well resulting in inefficiency of the medication. I never saw them (it was practised when I was in KSA) giving a slow I.V of about 12 hours so, why didn't they consider this?

  It really does depend on the person whether it is the best way to use the desferal does it? i mean i have tried it and somehow it works for me..... and so is thru subq, thru the pump.....
how comfortable is the question??? coz i know for a fact it is both effective, just as long as it is given slow dripped. 

WELL I WOULD LIKE TO ADD TO THIS TOO...

I HAD A PORT FOR ALMOST 10YRS...I DID HAVE IT FOR TRANSFUSIONS BUT DID HAVE 24HR INFUSIONS OF DESFERAL..

I ONLY GOT ONE INFECTION SINCE I HAD THE PORT..BUT 10 YRS AGO IT NEARLY COST ME MY LIFE...I GOT PULMORY EMBOLI...

I HAVE BEEN TOLD BY A DOCTOR THAT HAVING A PORT AND THAL ISNT A GOOD MATCH..CAUSE OF THE CLOTTING FACTOR...

THERE IS NO WAY I WOULD GET ANOTHER PORT IF MY LIFE DEPENDED ON IT...I AM QUITE HAPPY TAKING DEFERIPRONE AND WITH A VERY LOW FERRITIN I HAVE NOTHING TO WORRY ABOUT.

My daughter is now 5 years and 3 months old. She is transfused one unit of blood in approximately 25 days on an to maintain a pre transfusion Hb level of 8.5 to 9 gm/dl. She has started taking desferral at the age of 2 and 1/2 or so. The Desferral used to be given in the IV along with blood for a period of 6 hours or so using a triway channel. This way her ferritin levels were under control for two years. However, in last year year September her ferritin levels were found out to be abysmally poor, standing around 4700+. That was also evident in the colour of her skin.

After this the doctor has advised her to take Desferral in IV continuously for about 60 hours, once in a month.
After three sessions of such IV infusions the ferritin level has come down to exactly 2000. The colour of her skin has also improved. Now the dosage applied is 2 vials in 250 ml normal saline over 12 hours.

My daughter received IV Desferal during transfusions additionally to the subcuteneous use. It was given to her after the transfusion and in a very very diluted form ,( I think it was 2 vials of Desferal in 100 ml of saline) again over a period of 1 to 2 hours.
But Dr. Agarwal always said that that method does not help much, unless the drip can be continued for 12-16 hrs.
IV Desferal is given in cases of high iron overload over a period of 2-3 days to reduce the iron level faster.But in normal iron overloads, the subcutenious method works the best.. the idea is to keep the desferal in your body as long as possible.

If even diluted desferal is given through IV after the transfusion it has to be very very slow.. my daughter had loads of problems, even when the speed was slightly increased.. breathlessness, allergic reactions etc.. since the body was already loaded with the blood.

I used to take Desferal via IV too when i was about 8 but had to stop because i used to face the same symptoms faced by Sajid (Shortness of breath, Skin used to turn red, severe itching) I found out that i was severely allergic to desferal then. An allergy specialist recommended to my doctors the process of desentisization (i.e regularizing your body with the medication by putting in small doses of desferal over a period of 8-10 hrs and then inserting the real dose of 6 to 8 gms in 500 ml of solution) this method worked wonders and was the only option available at that time. This practice is still effective for people who need desferal but are allergic to it. In case any one needs the exact process of dilution please drop me a message, I'll be happy to provide it