Tips from the Pros

* From Tahir Mahmood: I am a 29 year old thalassaemia major, having 3 units of RBC every four weeks. I found the best way for me was to take my Desferal continuously without break, over 4-5 days a week, and then take a couple of days off. (Please consult your health care provider before making any adjustments to your current Desferal regime). I have had a couple of port-a-caths as well as the peripherally-inserted catheters (PICC lines) in my arm. With the last port and PICC, I have managed to get my serum ferritin count down to a non-thalassaemic average of 175. This is compared to an average level during the previous 6 years of approximately 2800, and has enabled me to take my first Desferal-free holiday abroad in my life. I am now on a very easy regime, taking 3 grams of Desferal twice a week. I would sincerely recommend that any thalassaemic taking Desferal should request the balloon-pump (either 12-hour or 24-hour) as a means of administering it. Intraveneous Desferal is much, much more effective than subcutaneous! If any thalassaemic out there has any questions regarding how to cope with thalassaemia major as an adult, please do not hesitate to contact me. Thanks. tahir@mahmoodb.fsnet.co.uk

* From Aoife Murray: I am a 22 year old Irish girl. I have a rare illness called 'Blackfan Diamond Syndrome' meaning I don't produce any red cells and so I receive 3 units of RBCs every 5 weeks. I used to use the pump method of administering Desferal but found that it wasn't lowering the ferritin. Now I use the balloon pump with 4.5g of desferal going in over 48 hours once a week. I believe that it's not the amount of Desferal that you receive but rather the exposure time that actually reduces the ferritin levels. In my case this has been proved because in a year of using the 48 hour pump, my ferritin levels have gone from 1900 to 600. aoifemurray@hotmail.com

* From Dimitra Ibrahim: I'm 23y/o from Australia who has very recently had my spleen removed (I was told it was 8-9 times larger than a normal spleen). My blood transfusion requirement is expected to stretch from 3 units every 3 weeks, to every 4 weeks. I did have some trouble using my Desferal regularly mainly because of the sore pump sites and the awkwardness of the butterfly needles. I was recently told about the Thalaset which is a 90 degree needle and have begun using 3g of Desferal at least 5-6 nights per week. This needle is far more comfortable than the butterfly needle. Instead of inserting the needle and having to bend it down to tape it, this needle goes straight in and has an adhesive base which sticks to your skin. To anyone having trouble with using butterfly needles I strongly recommend you try these Thalasets, you will not want to go back to butterfly needles. I feel I have much more freedom to wear the pump at night or even during the day! It sits flat against your skin (unlike the butterfly which sticks up slightly from being bent) so you can hide it easily and it does not get caught on clothing. I also find it leaves less swelling than after use of a butterfly needle. At this site I have read about of many different variations on using Desferal, a lot of which I have not heard before, but I have not heard anyone mention the use of the Thalaset. If anyone has used it or has any questions for me, I would be interested in hearing from you, so please feel free to email me. dimitra@mbox.com.au

* From Katerina Nassis: I am 24 year old and from Germany and I do have thalassaemia major. I get 3 units of RBC every three weeks. I use my pump 5 times a week over a 15-20 hour period. Yes, I even go to work or out with it! The purpose is that Desferal is more effective when used over many hours (the longer, the better!) Also, I mix my 3g with 20ml of water and the injection site does not get sore at all and almost no bumps!!! Another thing that helped me a great deal is using the Thalaset ("thumbset") needle. It is very comfortable, because it goes straight into your skin and does not waggle around, so that the tissue at the injection site does not get injured and irritated. Additonally, I got myself a new pump called "Microjet Crono". It is the smallest pump you can imagine and it weighs only 110g! You can fit it in you pocket easily and you can participate in everyday life without any problems. My ferritin is always between 700-1000 and since using this "strategy" (20ml mixture, more hours, new pump + Thalaset), I feel excellent and pumping is no problem for me at all! If you want to know more about all this, please do not hesiate to contact me and I will be happy to help you! katerina.nassis@gmx.de

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