IV desferal

In addition to using Solu-Cortef with the Desferal when used Sub-Q, any other suggestions on cream(s) I can use post infusion to help with irritation and to help diffuse desferal more quickly, so, I can use the same site again faster?

I ALWAYS use EMLA cream!!! No Emla, no infusion  I used it subq when I was 6 (and did not understand why i could not immediately out of bed, hundreds of time I have heard myself because I forgot to freed the bag from the leg of my bed.) That area is one big fog, but I dont think we even use Emla.  I haven't used it very long, because after a few things I got so many lums that I could not bend over anymore.

From the age of 16 untill the age of 20 I used Desferal IV. At the end I had 5x24hrs desferal and on a night in oct 06 I almost died at home because it took my breathe. My body was completely red/rash and lumps. I dont know about the amount, but i have heard from other people with medical background that there lay the problem. So be careful with the concoction.

As for the pump question: I advice everyone to use an Easy-Pump. I still love them. They work like a balloon. You can only use them once. The pharmacist was the witch ;)

Dore

Dore

Umair and Dore, 

Umair, your answers were very carefully thought out and thanks for making sure to answer all questions! I also read all the postings on the thread you referred me to. The postings on that thread were very useful. Here's what I currently do with my DFO (I'll post this here since I noticed no one posted on that thread since Nov 2008 or so):
I mix my 2 g vial (4 500mg vials) in 10 mls. The reason I use 10 mls is because I thought I would not be able to absorb that much fluid. I have heard others using more water to mix the DFO. I may try increasing the volume and see if it helps with irritation and lumps. I am SOO tired of itchiness, redness, and lumps. lumps last at least 4-5 days.

I infuse on my belly only. I have tried my thighs once like 6-7 yrs ago and had a lot of pain. I currently use SofSet MicroSet. One of the members, Jean, on that other thread mentioned she was also using this set and then switched to using Norfolk Clear-View infusion set. I'll see if I can get those. I also have a couple of samples of thalasets at home... they look too fragile.. With SofSet, the issue is exactly what Jean mentioned. It's hard to get through the skin as the design of this set is really bad. It's metal needle at the tip and after small gap (which is the problem) the plastic part starts. the metal needle part is easy to penetrate through skin, but it's the plastic part that really hard to push through the skin. sometimes, I sit on it pushing it through for an entire minute or even more. I have also been told that plastic may also be adding to the irritation. I have been trying to change my infusion sets. I have tried a couple different ones but have not been satisfied with any. some are bigger in gauge and some are too long and stuff...

So, couple things I'll try: a bit more volume to start with. Will try to change inf set as soon as I can. I use 6mm set. So, after doing all that, I may also consider going with 9mm.. Two main concerns I still have but we'll figure them out: 1) would the larger volumes be too much for me and 2)Can I go deeper than I already go wtih 6mm.

I really liked Tariq pointing out how he wears the pump to work and his response to his colleagues 
For years, I have thought about how to work it out wtih school and work and stuff. I have not found it comfortable wearing to work and school and having people question me about it. I wish there was a pump that didn't make any sound.. Does anyone know of one? I have used Grasby and now I use Crono pump. Crono is quieter, but still would be noticeable.

How's easy pump, Dore? Is it quiet or can you make it quiet? 

Best,
SF

Hi SF,

You know i have learned these tactics with time  (Life is the best teacher) You are right, pump is noticeable sometimes but that too can be controlled with the way you wear your clothes (i mean use loose clothing). I use pump by Medis of Italy and it to alarmed too much so i took them to local Medis Dealers and have its alarm busted. For the motor swinging sound, i put a towel like cloth piece under my pump bag and it absorbs most of the sound. (smart heh) There are many funny experiences associated with me roaming around with pump on. I will share them later   

Still i do wish i had something similar to Easy Pump were available here. Oh and BTW i infuse on my upper arm, and its almost painless for me. Thigh infusion is best if you infuse while you sleep.

Hope that helps.

Hi Tariq And SF ,
Tariq ,
You're right life is a good teacher ...

SF ,
  Buddy ,

I mix my 2 g vial (4 500mg vials) in 10 mls. The reason I use 10 mls is because I thought I would not be able to absorb that much fluid. I have heard others using more water to mix the DFO. I may try increasing the volume and see if it helps with irritation and lumps. I am SOO tired of itchiness, redness, and lumps. lumps last at least 4-5 days.

i think, it is the reason why you're getting lumps on the site of desferal and why the lumps take's too much time to last ... as i mentioed in my last post , that when i aske to my doctor about mixing 3 vials of 500mg in 10ml or 12ml she said no to both , and the reason she told is that , [bgcolor=#fff5ff]less water thicker solution and thicker solution mean's hard to panitrate and it will take long time to panitrate and it will remain like a lump/cyst ... [/bgcolor] soo she told me to use 5ml for per vial of 500mg ...
another thing i red in your post you mentioned you're using 6mm needlle , buddy , i think its a little shorter to reach the subQ layer for you, if your not soo skiny .... i think it will be better to try 8mm or 10mm and in the end 12mm needle ... i remember in 1995-1999 when nobody  had any know how to insert the needle and how deep it should be layed ( beneath the skin ) , usualy docotrs pricked the need and remained it in skin and within a few hour i star feeling pain itchiness redness  and cyst at site , soo i think getting a little long needle would be helpful for you ....

only to share : a few ( not more than 3-4 times) Times i used to take 8 injection in 48 hours and 40ml of water at thigh ... no reaction, no pain, no lumps, no redness and no itthcines .... Thanx GOD

Best Regards
Take Care
Umair

Hi SF,

You know i have learned these tactics with time  (Life is the best teacher) You are right, pump is noticeable sometimes but that too can be controlled with the way you wear your clothes (i mean use loose clothing). I use pump by Medis of Italy and it to alarmed too much so i took them to local Medis Dealers and have its alarm busted. For the motor swinging sound, i put a towel like cloth piece under my pump bag and it absorbs most of the sound. (smart heh) There are many funny experiences associated with me roaming around with pump on. I will share them later   

Still i do wish i had something similar to Easy Pump were available here. Oh and BTW i infuse on my upper arm, and its almost painless for me. Thigh infusion is best if you infuse while you sleep.

Hope that helps.

Esay Pump


Site: http://www.bbraun.com/index.cfm?uuid=D9A0F0A92A5AE6266A9842B65DDE3B0B&product_id=PRID00000094&parent_id=2022513&object_id=2022513&pfad3=Easypump%C2%AE&mode=2

Photo: http://www.bbraun.fr/data/E82CB8402A5AE626654161D0C8410944.0.jpg

I LOVE them. I hope you can get them.

Dore