Chelators ( a lil about Side-effects ) ... ( this made me worried :S )

well, i m pretty much worried after reading abt the chelation medicines ....
... Wat do u Say ??.. dont forget to have ur say ...


Courtesy : http://www.ehealthme.com

87 related reports are studied for males aged 11 (±5) when using Exjade:
Comparison with the patient's adverse outcomes:
Name                      Count  (% of total reports)
Headache                        1 (1.15%)

Top overall drug interactions, adverse side effects:
 Name                                                   Count (% of total reports)
1 Pyrexia                                                      23 (26.44%)
2 Alanine aminotransferase increased                15 (17.24%)
3 Aspartate aminotransferase increased             14 (16.09%)
4 Abdominal pain                                         12 (13.79%)
5 Haemoglobin decreased                              11 (12.64%)
6 Blood bilirubin increased                               9 (10.34%)
7 Haematocrit decreased                                9 (10.34%)
8 White blood cell count increased                   8 (9.20%)
9 Pneumonia                                                 7 (8.05%)
10 Atelectasis                                                7 (8.05%)

Top long term (1+ years on drugs) drug interactions, side effects:
 Name                                            Count (% of total reports)
1 Pyrexia                                                   4 (25.00%)
2 Abdominal pain                                        4 (25.00%)
3 Blood urea increased                               3 (18.75%)
4 Neutrophil count increased                       2 (12.50%)
5 Nuchal rigidity                                         2 (12.50%)
6 Peripheral vascular disorder                        2 (12.50%)
7 Pupil fixed                                               2 (12.50%)
8 Neurological symptom                               2 (12.50%)
9 Pupils unequal                                         2 (12.50%)
[bgcolor=#ffff00]10 Meningitis bacterial                                        2 (12.50%)[/bgcolor]

Overall effectiveness * :
not at all somewhat           moderate           high           very high
Exjade 0.00% 0.00%           100.00%           0.00%           0.00%

For complete article n more details : http://www.ehealthme.com/drug_interactions_side_effects/Exjade-2928060#

Best Regards

And abt DFP :  this also has a big list of side-effects and possibly life threatening ... Awehhhh... m confused  ,, its a a big complicated field , u can't take a decisssion or make a mind with your own research  and with the material that is availale .. its confusing really confusing ...

Courtesy : http://www.haematologica.org

Other adverse events
Mild nausea was initially observed in five patients treated with either combination therapy or DFP monotherapy and resolved within a few weeks without antiemetic treatment. One patient on combination therapy suffered from grade 2 arthralgia which was controlled by short-term anti-inflammatory therapy. [bgcolor=#ffff00]Aseptic meningitis not associated with neutropenia developed in one patient receiving DFP monotherapy in week 45. One patient experienced an acute cerebellar syndrome with symptoms of dizziness, tinnitus and truncal ataxia during the follow-up period with DFP monotherapy. Bilateral slowness of conduction in VEP was also detected. Although the symptoms and findings were probably related to the sequelae of infection, DFP therapy was discontinued and the symptoms resolved gradually after cessation of DFP[/bgcolor]. Mild local reactions were observed in several patients treated with DFO.

For complete article : http://www.haematologica.org/cgi/content/full/92/12/1599

Best REgards

Please, dont forget to have your say ...

didn't find anything/material related to desferrioxamine (Desferal) and Meningitis ...

Umair,

Exjade is one of the most well studied drugs.  During the conference we learned that the results of very well controlled studies suggest that the most common side effects of exjade are abdominal discomfort and increased creatinine (which is completely reversible).  Other side effects included the rash - which rarely occurs anymore because patients usually begin on a very low dose. 

Although Exjade may not be the best drug for every patient, I do think that it is relatively safe - as per the well documented and controlled studies that have been done at the major centers in the world - ie US, Canada, Italy, Greece, Turkey etc.

The link you have provided does not indicate how this data was collected - and if there is any relation between what they are calling a "side effect" and exjade.  These conditions may very well be independent of the drug. 

Meningitis is much more likely to harm a patient due to iron overload (infections grow in high iron levels and the immune system is also hampered when the body is iron overloaded).  Splenectomy, iron overload and overall organ health a patient are much better determinants of all of these conditions compared with the effects that exjade is likely to have. 

I believe that these complications would have shown up in the many studies that have been done world wide if they were actually associated with exjade use. 

Side effects of desferal include impaired growth, impaired bone health, demineralization, sensory defects.  Remember, that a balance must be struck between transfusions, chelation, antioxidants and other factors. 

A good hemoglobin (higher than previously believed) is necessary for good health, lower iron levels are possible and ideal (with exjade normal iron levels ARE possible, physical exercise and antioxidant support is absolutely essential.  These other conditions will begin to decrease if not diminish if these factors are well managed.

This is my understanding of what the current treatment plan advised by the top doctors in the field.  Andy can probably add a lot more to this explanation.

Sharmin

Umair: buddy... it is said in urdu 'bahanay', Allah needed a reason to call Salman up there.. and he did, meningitis was just a cause/reason, he was mashaAllah doing great, he had 2748 ferrittin, good hemoglobin, what not? but Allah needed him up there.. we keep on looking reasons of death, but in the end its all in HIS hands

Ayesha,
you're absolutely right, all these things are to just give a reason , ..

@ Sharmin
Thanx .. that everydrug has its side-effects , its the luck of patient how his//her body response's to the medicines ...

Best Regards
Umair

As we have stated here many times, every single chelator does have side effects in some people and this is an important reason why more chelators are needed and also why the FDA needs to stop dragging their feet on Ferriprox approval. The FDA pretends they exist in a vacuum where all outside knowledge is excluded until they decide to include it. The more than 20 years experience in India using Kelfer (equivalent of Ferriprox) should be enough to get things rolling for approval of Ferriprox. but we have to wait for the pencil pushing bureaucrats to do their tedious work. Other chelators like starch desferal should also be funded for trials so iron loaded patients have a real group of chelators to choose from and doctors are able to design care for specific patients.

Iron load compromises the immune system by both reducing immune function and by supplying iron for infections to feed on, so the real concern with cases like meningitis is not necessarily the chelator as much as it is more likely to me iron load, which of course, cannot be determined by ferritin readings. Organ scans are the only true measure of iron load, so in a case like Salman's where there was a long history of non-compliance before compliance began, we cannot know for sure what his true iron load in his organs may have been. It may just be bad luck and a compromised immune system or organ iron load may have been a contributor.

I would not get too caught up in the side effects of chelators because this ignores that without chelation, death is certain, a concept lost on one very famous Canadian doctor. Keeping chelators from patients causes death and Lisa felt this doctor's actions was causing her to die, and I am in agreement. Please remember the chelators are keeping you alive. Yes, there are side effects, but the side effect of non-compliance is death, so that has to carry far more weight in this discussion. Yes, we need safer chelators, so we all need to keep the pressure on to make sure new chelators are brought to market.

What is the side effect of iron overload?
First consider that!


Lena.

What is the side effect of iron overload?
First consider that!


Lena.

Well said Lena,

That sums it up!

btw, Lena we were very fortunate to meet your doctor at the conference.  She is a lovely lady who is very proud of you.  I wish that we could have met you as well.  We have utmost respect for you and your amazing attitude.  I would consider myself extremely fortunate if my son were to have an attitude like yours when he grows up.  We also told your doctor how beautiful you look in your picture   

Sharmin

 You met my doctor, too, Sharmin? How nice! I am very proud of her, too. As I once told her joking: we are the ideal patient(because I comply) for the ideal doctor and vice versa. She is a remarkable doctor and I am lucky to be with her.
As for the rest you mentioned -my attitude and everything- apart from making me blush, I also think that family plays a great role in every thal's attitude -in every person's attitude for that matter.
In this site I have recognised a lot of concerned parents who seek out the best for their children and that  will certainly help children react normally when growing up.

I hope someday I will meet you,too.

Lena.

It was really nice to have another meeting of the thalpals at this conference on Saturday when we had a nice little group altogether at once. I wonder if the conference organizers realize that we are responsible for a little upward blip in attendance. Lena's doctor took a bunch of my thalpal business cards so we may get some new visitors to the site.

Umair, I am glad you noticed it too. There are coming more and more Exjade reactions in the public world. You can ask yourself of it was a safe approval gotta go. more later