Thalassemia Patients and Friends
Discussion Forums => The Spotlight => Topic started by: Zaid on June 02, 2007, 08:38:21 PM
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Just a small intro bout myself...Am 25 years of age, have Thal Major and have been undergoin treatment for the past 19 years (since i was diagnosed when i was 6). For a living i work in the sales dept of a large FMCG MNC in Pakistan for the past 2 years. I have also done my MBA from one of Pakistan's best business schools.
I explored this forum today and find it as an excellent place to share experiences on Thal. All existing members, thanks for making this the place it is :smiley
Zaid
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Welcome to the group, Zaid! :hithere Nice to have you here with us. :biggrin
Congratulations on your accomplishments! I love hearing about Thals pursuing their dreams, and leading normal lives. I hope you continue posting with us. We have an awesome group here. :happyyes
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Hi Zaid,
:welcome to the site!
Please tell us more about your Thal. I believe that you are one of the many mistreated Intermedias who are now transfusion dependant and being classified as Thal. Major.
The reason I say that is your age of diagnosis. Thal. Major can't just "Happen" at a later stage of life. Thal. Majors get diagnosed within few months after birth. You pulled through 6 years without transfusion means that you were producing some Hb though which later proved insufficient and thus they put you on transfusion. If however, you had tried any HbF inducers then probably you would have further delayed your blood requirement.
I'm not sure if it is too late now, but ask your doctor about your possibility of being Intermedia and effectiveness of HbF inducers like Hydroxyurea or resveratrol etc
Take care, Peace!
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Hi Ziad
Welcome to the site, i know that you will like it here :welcome
I too agree with Sajid's point of view. Anyway, tell us more about you
Take care
Manal
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Hello! Zaid! WeLcOmE! Glad you joiined us here! and so glad for your achievements! You're still young but have already taken MBA (wow!) Take Care!
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Thank ya All for the warm welcome...makes me feel at home :)
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Hi Zaid and Welcome,
I think your case demonstrates well that there is no line that can be drawn where major and intermedia fall on either side of the line. You are transfusion dependent and how we label it means little. Intermedia has always been a vague classification and the definition is constantly being revised. Transfusion dependent and transfusion independent might be better classifications than major and intermedia and the more we understand about the multitude of mutations and deletions that cause thal, the more we need to re-think how we classify thal.
And Zaid, let's do talk about your iron and what can be done about it.
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And Zaid, let's do talk about your iron and what can be done about it.
Hi Zaid,
:hithere
I am from Karachi too :),where do you go for your transfusions Zaid? we go to AGA KHAN for our daughter's,and Andy is right Zaid,let's talk about iron,tell us more about your self,as people like you are inspiration to us all.
ZAINI.
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hi zaid,
welcome to the site,its great to see how well you are doing with your work and your an inspiration to us all with everything you have endured in your life! keep strong.
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Thanks for the welcome guys ! :bighug
Zaini, I too go to the Aga khan for my monthly transfusions (day care) n i'm pretty sure i've seen you around
About my iron:
Ferritin level is 3400 :dunno
I take 2.5 g of desferal through subcutaneous infusion thrice or sometimes twice a week which i know is less for me but i cant take any more coz i administer the infusion around my stomach and nowhere else (it's in the head). The desferal that goes in turns into painful lumps and so i cant afford to penalize my stomache more then 3 times a week.
When i was young i was allergic to desferal as tests confirmed so i could not take the normal dose, doctors couldnt take the step of stoppin desferal altogether....they used to desenticize me for a period of 12 hours then administer the normal dose, but this was done only during hospital stays...Later on in Pakistan i used to follow the same procedure but at home as trained by the doctors in US. The whole process took around 24 hrs which was very inconvinient.... After a couple of years (and a couple of veins later) of this decenticization i took the decision of going to the normal dose of 4 gm diluted in 500 ML Nacl administered over 12 hours. This was done on a weekly basis and the doctors too were happy as my desferral intake increased. After a year of this i came to subcatenous infusion of .5 gms of desferal in 5 cc. After testing different combinations for a period of 6 months i finally came up to 2.5 gms diluted in 10 cc's. I think it's all about knowing the resisting power of your own body. My doctors emphasis was on increasing the dosage i showed him how i'll do it. Currently am still on 2.5 gms * 3 days a week.
As far as the pills go i havent started using any oral medicines but am planning to(main reason is cost). I heard about a less costlier Generic drug of L1 introduced by Global Pharma in Pak. Does anyone know about the drug or has anyone started using it as yet?
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Welcome, Zaid! Sounds like you have a done a good job of dealing with your thal. You have had some obstacles put in your way as far as your body's reaction to Desferal. You will find support and friendship here, as well as information. Nice to meet you. Jean
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Hi Zaid,
I'm surprised that you are taking 2.5 g in 10 ml. That is quite concentrated and could be the reason for your allergic to desferal. You should dilute it to 1 g in 10 ml at each shot or even more since you are sensitive to it. My doctor doesn't allow me to go any more concentrated than that even though I can tolerate twice the concentration very well.
If you are worried about the pricking too much, then try to utilize your thighs as well. I was on 2 grams twice a week plan and used my guts. But that wasn't enough for me and now I have to take it 6 times a week so I have to use the thighs. Believe me, it really makes things better as previously had 4 locations which I rotated on my guts; now I have added 4 more from the thighs and this lets each site get more time to heal i.e the turn comes after 8 sessions.
As far as the oral pill goes, I think I am quite unlucky in this regard as I go to the center that is the project of Global Pharma and it supplies Ferinill to the center continuously, but I can't avail it as my blood counts are pretty low.
If you want Ferinil, then you and Mrs. Zaini could ask your center Agha Khan Hosp. to contact Global Pharma here in Rwp/Isl. so that they can get it for you.
Take care, Peace!
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Hi Zaid,
you must've seen me around there :biggrin bcoz i am the one with gown and hijab there in Ibn-e-Zuhr building ,anyways when is your next transfusion?zainab might be going on 29th or 30th of june,as she had her last transfusion on 2nd of june,
Your iron is not very bad for your age i think,i know ferritin tests only show the iron in blood,but still i've seen people with more then 10000 of iron,and about the oral chelators,why don't you try kelfer,another genetic drug of L1,made by Cipla India,it's available at Bismillah Taqee Institute for Blood Diseases,and it costs about 500 or 1000 rs per month,a lot less then ferriprox,and about Sajid's advice,I don't know if Agha Khan people will arrange ferinill, bcoz i remember i asked Dr Anwar that if we can switch to kelfer from ferriprox,as cost is ofcourse killing,but he told us that no we should not bcoz it has more side effects then ferriprox :dunno though we know the formulation is same, and later Andy told me that both drugs are same and have same side effects,but there is a huge difference between the cost,we buy ferriprox for rs 7700 per month,so compare the price.
Any ways,Take Care,:)
ZAINI.
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Zaini,
Dr.Anwer was the one who told me about the global pharma generic (ferinill) maybe he's a supporter of this generic and not kelfer. He asked me if i'm willing to go for it... i told him i'll think about it.
I think i'll go for it...the cost differential for getting ferriprox is just tooo much...three cheers for ferinill :friday
TC
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Good News Zaid,
I'll talk with Dr Anwar about that when we'll go to hospital for transfusion,thanx for informing.
TAKE CARE,
ZAINI.
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I am so happy to hear that you guys get Kelfer in Pakistan. Over the last decade I have received quite a few emails from parents asking how they could procure Kelfer from India and I really was not able to help them.
It really disappoints me that the same drugs are not available the world over so many lives could have been saved in 10 years. :(
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Sallam 2 all
members of the group
should i be happy or.....
i hav started (ferinil)iron chelation from 29 of june....
acording to doctors i hav to take five days
n 2days desferal....due to sudden pain in hips
i stoped the medicine but now again i hav start to take..
my first cbc has been done,every thing is normal but :wah
my hb is coming low after 10 days of transfussing blood...
doctor hav told to moniter hb weekly....
pls pray for my hb
n tc
allahafiz
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Hi Aneela,
Hope you must be doing well,just wanted to ask that how were you able to get ferinil?and from where?what is the doc saying? is your drop of hb somehow related with ferinil? it's unusual though if it is so.
Take care,
ZAINI.
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hy hi
nice to hear frm u i guess ur doing gr8 opps i dint give u my intro well i am too new to this sight i am doc my self n suffering frm this disease too living in pindi n wat else .ok u said ur doing job dats nice wish u beat of luck in ur life
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Hello Mr. Askari,
:welcome to the site. I'm from Rawalpindi as well.
May I inquire in which field are you specialised in and where do you go for your blood transfusions?
Feel free to share your story with us and ask any question that you may have in mind, but since you're a doctor yourself, I think we are the ones that will benefit from your valuable opinions.
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well hy hi again as i told u i am bia(female) frm pindi suffering frm the disease for the past 24 yrs means i was diagnosed whn i was only 1 .i am getting my transfusions frm AFIT n my iron is under contol the latest results was 2500 i taking ferinil almost 8 tab a day.
well i did my bachelors in dental surgery n about to str my house job wolud u like to share sum of u n it was nice to hear frm u
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Hi Askari,
Congratulations on finishing your degree! Keep working on lowering your ferritin. I think it's great that the thals in Pakistan now have easy access to an oral chelator. Kelfer has now been in India for 20 years and it has saved many lives. It will make a big difference in Pakistan.
:goodluck with your new job. :biggrin
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hy hi allllllllllllllll
too glad to hear frm u all .thnx andy for wishishing me luck thnx allot
by the grace of GOD i am going fine in my life n really bright plans for my future
so happy to be here among all u nice people.my am dentist by profession so free advices for all of regarding ur dental peoblems
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Hi Askari,
Good to hear from you as well. I too have started oral chelation with the new drug "Chelox" a generic made locally by Hilton Pharma. It was referred by one our forumn members "Rani". Thankfully it is doing great so far. BTW what's the visit frequency for transfusions for you ?
So you're all set to become one of the few dental surgeons in Pakistan. Thats Great !! Keep your spirits high :stars
Zaid
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Hi Zaid,
I hope you are doing well,Did Dr Anwar prescribe chelox to you?bcoz i have never heard of this drug,is this the generic form of ferriprox (defriprone).or something else?what is the cost? waiting for your reply.
TAKE CARE ,
ZAINI.
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hy hi
well i get transfusion after 12 to 15 days.wat is this drug i hv never heard of it is it good in its work who prescribed u by the way.
does any one knw about the treatment or more correctly gene transplant which is going on in italy is there any chance dat we can hv it
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Hi Askari,
We are talking about oral chelators which are a substitute for the Desferal injections that we take. The one I know which is being manufactured in Pakistan is Ferinill which has the same chemical composition (Deferiprone) as the famous Ferriprox and Kelfer which are comparatively expensive.
I don't know about Chelox. I think Zaid will tell you more about it.
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Hi Zaid,
Let us know more about using chelox as a chelator. Are you also using any other chelator? Did the doctor tell you what combination he is using as chelox? Chelox is a combination of hydrogen peroxide usually taken through IV and a chelator, such as desferal. The two are taken on alternating days, as they can react with each other if taken the same day. Many doctors use EDTA as the chelator when adminsitering chelox treatments, but for other illnesses, such as atherosclerosis. But EDTA is not useful as an iron chelator. The hydrogen peroxide breaks down in the body into water and an oxygen atom. The claims are that this free oxygen atom can attach to toxic substances and escort them out of the body and it also kills and inhibits many types of harmful bacteria.
From http://www.chelationbc.com/hydrogen_peroxide.html
The effect of singlet oxygen in the human body is twofold. It kills, or severely inhibits the growth of, anaerobic organisms (bacteria and viruses that use carbon dioxide for fuel and leave oxygen as a by-product). This action is immediate, on contact with the anaerobic organism. Anaerobic bacteria are pathogens, the organisms which cause disease. All viruses are anaerobic.
Aerobic bacteria (those that burn oxygen for fuel and leave carbon dioxide as a by-product — as humans do) found in the human intestine are friendly bacteria, which aid in digestion. These organisms thrive in the presence of hydrogen peroxide.
The second effect of hydrogen peroxide is that it provides singlet oxygen, which, in turn, transforms biological waste products and industrial toxins into inert substances by oxidizing them. This makes them easy to handle for the kidneys and liver. It doubles the rate of enzymatic metabolism in the mitochondria within each cell, thus enabling the body to cleanse itself of toxins and still have plenty of energy to handle the business of living from moment to moment. This increase in metabolism probably accounts for some of the antibacterial, antifungal, and antiviral effects of hydrogen peroxide.
We would all like to here more about this therapy and how well you do in reducing your ferritin level.
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Hi Andy,
I think there is something wrong here. The chelox that I heard made locally are oral pills with same deferiprone which is being manufactured by a local Pharma. company named Hilton Pharma. They don't mention it on their web site. I will contact them and ask about it.
:huh using a brand name that is used as something else can be confusing :dunno
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That's interesting Sajid. Can you find out more about it? Chelox therapy refers to a combination of an antioxidant and a chelator. Are they only using the chelator (deferiprone), or are they combining it with an antioxidant (hydrogen peroxide is what normally fills this role).
http://www.consumerhealth.org/articles/display.cfm?ID=19990303191838
CHELOX THERAPY One of the treatments I use is Chelox therapy which is a combination of two types of therapies: chelation therapy and oxidative therapy. Oxidation refers to the removal of electrons; oxidative therapy uses agents like hydrogen peroxide as an oxidizer because it can receive electrons and then become reduced to other agents. In Ontario, chelation therapy and hydrogen peroxide therapy are not accepted treatments for atherosclerosis, but the one chelator that I use more than any other, deferoxamine, is indeed an approved and very potent iron chelator.
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Hi,
I've sent them an email yesterday. Lets hope I get the reply soon.
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Andy/Askari and Sajid,
Sorry for the late reply guys.....have been having serious connectivity issues...Anyways, Chelox is the brand name for Deferiprone and it comes in capsule form of 500 mg. My doc prescribed it to me . I'm using combination chelation therapy currently with the following schedule: 8 capsules a day for 5 days and Desferal (2.5 gms) for the remaining two days.
The cost of each capsule is Rs.20 (33 cents) which is pretty reasonable. I've been using the drug for over 2 weeks and have been checking my blood counts as well, all looks fine till now.
I'll be sharing some of the info that came as product description:
Chelox (Deferiprone) Capsules
Desciption: Chelox capsules contains deferiprone, an iron chelating agent, which is used to treat iron overload in a variety of conditions
Composition: Each Chelox 500 mg capsule contains: Deferiprone,HPL.....500 mg
Indications and Usage: Treatement of iron overload in: thalassemia major for whom desferrioxamine therapy is contraindicated or who present serious toxicity with desferrioxamine therapy, and multiple blood transfusions
Mechanism of Action: Three molecules of deferiprone form a complex with one iron atom. This complex is then excreted in urine
Pharmacokinetics:
Absorption:
Deferiprone is rapidly absorbed from GIT
Metabolism:
Deferiprone is metabolised, but it's metabolite has no chelating activity
Excretion:
Deferiprone-iron complex is excreted in the urine. Up to 90% of the dose is excreted within 24 hours
Side effects
Reddish/Brown Urine, agranulocytosis, neutropenia, nausea, vomiting, abdominal pain, increased appetite, arthralgia and increased alanine transaminase (ALT) levels
Contraindications
Chelox capsules are contraindicated in patients with history of:
a) Hypersensitivity to deferiprone or any other ingredient of the product
b) Recurrent episodes of neutropenia or agranulocytosis
Hope the info helps
The drug is working fine for me and the only side effects i experienced was an increase in appetite and a reddish urine, but that isn't bad coz i know the drug is working and iron is being excreted from my system.
Andy, is this the same drug as Kelfer ? Do lemme know
Cheers,
Zaid
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Hi Zaid,
If the drug says it's defriprone,then it must be the same as kelfer,ferriprox is the brand name of defriprone while kelfer and ferrinil are the generic names manufactured in India and Pakistan respectively,though i was unable to finf ferinill,and now we are hearing about this new chelator "chelox".If it's really defriprone,then it will be really really helpful to all the thals in Pakistan.
ZAINI.
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Thanks for the info Zaid.
I had emailed Hilton Pharma about it as they haven't mentioned it on their website. Unfortunately I haven't receieved a reply from them yet, but now you have explained it so well that I don't need a reply from them.
Now we all know about it thanks to you!
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salaam
how are you and life
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where are u now a days
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Dear Erum,
If you are referring to Sajid, I regret to tell you that unfortunately we lost Sajid last September to heart failure. It has been a tragic loss for all of us and his absence is felt here everyday.
Take good care,
Sharmin