Cipla's Desirox

Hello everyone,

who isn't interested to buy Asunra and get rid of Desferal, but the thing is Novartis is selling it expensive and Cipla is only selling it in India, so I tried calling the company called AJM Pharma, below is the introduction of AJM Pharma:

A.J Mirza Pharma is the new Pharma Division and a subsidiary of A.J Mirza & Company Karachi. The new company derives its strength from CIPLA LIMITED, Mumbai,the largest Pharmaceutical Company of India.  AJ Mirza Pharma are the representatives of Cipla in Pakistan for all the services and materials offered by this great company. Cipla offers to the world a wide range of over 1200 formulations or prescription items, over 150 Active Pharmaceutical Ingredients or basic raw materials and over 100 intermediates to the Pharma industry  in India and in Europe, North and  South America and as well in Asia.

So being Cipla's representative in Pakistan, I called them and asked if they can import Desirox (Asunra/Exjade) for me, their response was quiet positive, they will be taking import fee from me, and within 2 days they would be letting me know the cost…

The lady I was talking to was:
Nazma (Reg. Affairs Manager), her boss Mr. Syed Shahab Balkhi also called me and asked me if there are more patients interested to buy Desirox, He asked me to gather the amount patient would be needing per month so that they can make an application and send it to the Ministry for Registering Desirox and getting it approve in Pakistan.

Now what I want from you guys is, are you guys interested to use Desirox? If yes then what will be your requirement? How much you would be needing per month?

Let me know so that we can pressurize Ministry to get it approve..

Note: only Patients from Pakistan reply, or their parents.

Waiting for your responses

Take Cares, Allah Hafiz
-Ayesha

I really wonder why I haven't got a single reply? 

Here am trying to get Cipla bring Desirox in Pakistan and no one of you is interested in it I guess..

They have 4 packs of 30 tablets of 500 mg, I will be getting 2 packs after Eid, that would cost me 10 thousand Pakistani Rupees, 156 rs. per tab, its bit expensive because its not available in Pakistan and they have imported those packs on my request, so 156 included importing charges

If anyone is interested to use Desirox, let me know... they can get us more ONLY IF YOU ARE INTERESTED, AJM Pharma is trying to get the NOC from Health Ministry, if they get it, then it will be less expensive..!

Thanks, Allah Hafiz
-Ayesha

AOA Sis ,
i gues there are people who are intterested to get cipla's exjade/asunra but when you sent post you know wat happened after that  .. and all were unable to  separe time to reply on this post , to post new messages , and to keep boards running , thats why this post and all other posts were being ignored in that particular time .. i hope you will get some replies about it very soon ... . .. bcoze  there are people from pakistan who are using exjade i think they will be also keen to get it on cheap price as well ... soo keep trying .. think you have to send this message in announcement so everyone who  logged in this site he will b straightly directed to that annoucnement ...  its a sugestion if you want to apply on it ... you may also send PM to Andy or Sharmin  to do make this possible ( annoucement ) ....

Best Regards
Take care
umair

Ayesha,
I have previously seen your post.  I think that many people from Pakistan are interested in using Exjade but some have mentioned that they are waiting for their ferritin levels to be lower before beginning. 

You can try to PM Andy to see if he can determine how you can get the attention of patients in Pakistan.  I wish you luck - my son has done well with Exjade so far I hope it continues to go well. 

From my experience patients wait for their SF values to be lower before beginning Exjade because Exjade can initially cause a spike in SF.  This is just part of the process by which Exjade works.  In my experience with my son, I think that is where combination therapy comes in - to mop up the SF.    In our case desferal seems to be doing a great job.  If desferal is present to deal with the initial spike, I suspect that desferal can be taken away once high iron levels are managed.

Recently some members have been curious about whether L1 and exjade would be effective together too.  I don't think that there are any studies underway but I would personally worry because L1 can potentially have more side effects than desferal.   

Anyhow, I am wondering if some of this is the reason why some of the patients have not responded.  Once more data is available on combination therapy maybe more patients will be on board.   

Exjade has the potential to improve compliance and quality of life,
Best of luck,

Sharmin

Thanks alot Nice Friend and Sharmin for replying, I have bought desirox today for my brother, and he has started it too, so lets hope for the best and keep praying please.

If anyone is interested let me know, I can get all the information and desirox for you...

Thanks,
Take cares, Allah Hafiz
-ayesha

some have mentioned that they are waiting for their ferritin levels to be lower before beginning. 

AOA sis , sharmin sis mentioned about some people . luckily i know one of them  ... he is waiting for for his ferrtin to come a little lower before begginning  Exjade ... i want to say that  ,  exjade is to decrease iron level so we have to use it in iron overload and dont have to waste time and wait to the iron to come down ....  .... i dont know why he is waiting  .. if he is going to controle his ferritin with desferal then wat benefit he want to Exjade .. wat will exjade do for him ... exjade will just stay in boddy and will have to kill the time ( time pass ) in body ... exjade will feel work less and could get bored and will have nothing to  do in body ...    i don't know   realy don't know why he is waiting for     .... hehhehehhehe hummm i will try  to inform you about that guy  ...     its all was for laugh ,.... i know him exactly an try to convince that person as well .... hope he will meet me online soon ...  hope he will be agreed to have cipla's desirox ( hey i have a new name for this DESI ROCKS sound's same na  )
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i think his doctor's affraid to the increase of iron levels in in beggining and won't take any risk on him  i hope both of you are understanding wat i m saying .... for example if his SF is 5000 before starting exjade then it will must go above to 6000  , it could harm . thats why his doctor want's to see his SF under 1000 so it would will not touch dangerous levels ..
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Best Regards
Take Care
Umair

Umair you are too funny  ,

I would have to agree with you.  I don't understand this logic either.  The recommended dose of desferal (according to weight) usually maintains SF between 1000 and 2000.  If it is known that Exjade will cause an increase in SF before bringing it down then the transient spike should not concern doctors so much.   

If the SF doesn't go below 1000 then these patients will never have a chance to take advantage of Exjade.  Increasing the dose of desferal to lower SF further can cause desferal toxicity.  From my experience, it seems that Exjade does a very good job of taking iron out of the organs.  His skin color has changed DRASTICALLY in the last month.  We had seen some lightening of his skin color after using IP6 - but the change with Exjade is incredible.   I am thinking that Exjade removes more iron from the organs than desferal - and that it does it more efficiently. 

This is my personal experience and opinion - people tolerate Exjade differently and side effects don't make the use of Exjade a solution for everyone.  I think in the case of iron overload combination therapy is the quickest and best way to go.  Many many people are using combination therapy - I hope that the outcome is good for everyone and that more doctors are willing to prescribe it to their patients.  With combination therapy patients can afford to use lower doses of each chelator, thus reducing the side effects of any one chelating agent.  That being said, I guess the concern is possible interactions of the drugs and side effects of the drugs in combination. 

I am sure doctors have a reason for waiting - I just don't understand them.  Andy, could you shed some light on this? 

Sharmin agrees Desi rocks:)

The reason most doctors won't prescribe combination chelation including Exjade is very simple. There have been no formals trials run on the efficacy and side effects, if any, of combination therapy that includes Exjade. This is done partly to protect the patients and partly done to protect doctors from potential lawsuits. However, what is actually happening is very interesting. Some doctors are using Exjade with desferal and some patients are doing this on their own. I think we may see long term trials bypassed if these more informal trials do show success and safety. I don't think doctors are prohibited from prescribing the combination but most prefer to wait and see and let others take the risk. With the amount of lawsuits doctors see, it's somewhat understandable, although personally, I think the health and lives of the patients should have priority.

Sharmin, each chelator works differently, and they complement each other's abilities. It does seem that Exjade is removing iron from the tissue well, and that desferal is working well to remove the free iron from the blood. One thing I am curious about. If this theory is correct and more iron is available to be removed by desferal, there would be a change in color of the urine if this is so. Has the urine been any darker during the combination period?

His urine is usually red in the morning if he has had desferal - and I notice that it is more red if he has had a good dose of vitamin C  1/2 after beginning desferal but I can't say that I have noticed it being more red since he began taking Exjade.  Logically, I guess if Exjade is making more free iron available for the desferal to remove, then his urine should be more red.  Maybe I should pay more attention.   

We will be having another ferritin test in the next few days, it has been 3 weeks since his last one.  I hope that his ferritin is staying low if not decreasing further. 

We were told that once his SF is below 1000 his desferal will be decresed to 3 days a week.  This is also his 3rd week since his last transfusion - I am hoping that his hg will be high enough for him to go one more week. 

Sharmin

I have had many questions regarding my son's combination therapy.  For us personally the results appear to be promising.  I hope that will be the case for most people. 

However:
I want to mention that we are doing this combination therapy as part of a trial.  My son is very well monitored with blood and urine tests every three weeks, vision and hearing tests every six months, SQUID scan and echo cardiogram every six months and a follow up with the clinic twice a year.  Oakland is in contact with us very regularly.  The 'incredibly busy' doctors have called us at home to make sure that everything is going well.  So far he is tolerating the combination therapy well - I really really hope that this continues to be the case.  I cannot say anything for sure - for this is a trial.  So far the other patients on this trial have not had any issues, but again I hope that this continues to be the case. 

Things seem to be going well for my son, as per the tests so far.  It is because he is being watched so closely that I consented to the trial.

I would definitely not recommend for anyone to do this without close monitoring from their physicians because the potential for complications is high enough for it to be a concern.  1/10 patients can have kidney related problems, skin reactions etc.  Therefore, I hope that no one will try combination therapy without their doctor's advice.  The dose of each chelator is carefully determined in combination therapy.  Furthermore, everyone's personal reaction to medication can vary. 

Thanks again everyone for your questions:)  I hope we have good news for you all soon and that doctors have a reason to prescribe this to more patients - but ONLY if the patients are closely monitored. 

Please don't hesitate to ask if you have other questions, 

Sharmin

Sharmin/Andy

Is there any documentation available which states that Exjade and Desferal do not contraindicate each other.

We are based in Australia and in the Information evening we were told that these two cannot be given together.

As far as I know, there have been no formal trials using the two drugs and I don't think there is any documentation yet. I'll be looking for any mention of the results with that combination at the Singapore conference next week.

Sam,

At the present time, although some patients and even doctors are using Exjade/desferal in combination - as far as I know the use of the two chelators in combination is yet to be determined as safe or not safe.  Until enough research and trials are available I think that you will continue to see warnings to not use them together.

We are presently in a trial being conducted by one of the main thalassemia centers in North America and sponsored by Novartis - the pharmaceutical company that makes both desferal and Exjade.  Under the close scrutiny of these world renowned doctors in Oakland, England and Canada five patients - my son being the youngest of these five patients - are being treated with this combination therapy on a trial basis. 

I don't think there is enough research to determine whether there is a contraindication between the two medications nor is there enough information to declare their safe use in combination.  Our personal experience has been good - so far - but many more studies are required to know for sure either way. 

I hope this helps,

Sharmin

Hi buddies ,
one of our site's active member is on combination therapy with Exjade + Desferal ....
if you need any info on it  .. just inform me i will convey your message and he will reply you ...

take care
umair

Ummm...159 RS per tab!!! if i am not wrong,isn't asunra from novartis is a bit cheaper than that ?

Zaini.