Hi All !!

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 

Zaid
 
 

Welcome to the group, Zaid!  Nice to have you here with us.   

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. 

Hi Zaid,

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!

Hi Ziad

Welcome to the site, i know that you will like it here

I too agree with Sajid's point of view. Anyway, tell us more about you

Take care

Manal

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!

Thank ya All for the warm welcome...makes me feel at home

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.

And Zaid, let's do talk about your iron and what can be done about it.

Hi Zaid,
 

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.

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.

Thanks for the welcome guys ! 

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

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?
 

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

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!

Hi Zaid,

you must've seen me around there  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  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.

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  

TC

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.