Continuous issues with Exjade.

It says coated tongue. Now I don't know if I have it or not, but my tongue is always dried up these days when I wakeup and I need to drink water to make it watery again; caveat that my blood sugar is normal, so that's not something which I can identify as Hyperglycemia. Some white spots on tongue are visible. Am I in a big trouble lol? I took 200mg Asunra in the morning and I can experience somewhat rise in discomfort and little pain.

That is due to potassium and sodium deficiency. just drink some coconut water. and it also happen in winter.
it also happen to me and i take coconut water with Half lemon with sea salt.
Body use sodium in place of potassium when later is not available. so first restore potassium level.
And yes don't go for lab report

To cure this i also take Kali mur 6x (Potassium) or homeopathy medicine named 12 tissue compound/28tonic(it is 12 essential salts/minerals, it include 3 kinds ofsalts, 3 kind of pottassium , 3 calcium, silicia , magnassium and ferrum phosph.)

Hi everybody,

I just started L1/Kelfer/Defriprone today with 2 tablets a day. I will increase the dose to 4/day (my weight is 44-45 kg).

I know as per my weight, I should add 2-3 more to regimen as well; but I'm just taking it as a temporary solution until I curb out all Exjade problems.

Andy,

Can taking 4 for now (temporary, maybe around 15 days or a month) will be okay?

-P.

Yes, any chelation is better than none. Sometimes a lower dose of Kelfer is all that can be tolerated, so desferal is also used.

Yes, any chelation is better than none. Sometimes a lower dose of Kelfer is all that can be tolerated, so desferal is also used.

Thanks Andy.

Also, other concern I have is that I'm also splitting Kelfar dose, i.e. 2 (1000 mg) in the morning and other 2 in the evening (around 3-4 PM).

Would it be good or Kelfar needs to be taken all at one time for better efficiency?

-P.

Kelfer should be taken 3 times daily, as its effects diminish after 6 hours.

Hi everybody,

I just started L1/Kelfer/Defriprone today with 2 tablets a day. I will increase the dose to 4/day (my weight is 44-45 kg).

I know as per my weight, I should add 2-3 more to regimen as well; but I'm just taking it as a temporary solution until I curb out all Exjade problems.

Andy,

Can taking 4 for now (temporary, maybe around 15 days or a month) will be okay?

-P.

You can increase the dosage gradually e.g. 1 capsule every 1 month or 15 or 7 days(it is something done by panos  :'(, can be found on this board) after it suit to your body and CBC need to be done every week and thereafter every month atleast till it suit you completely again.
75 mg/kg is initial starting dosage and can be increased to 100 to 125 mg/kg.

More details can also be found in the literature of Kelfer

You can increase the dosage gradually e.g. 1 capsule every 1 month or 15 or 7 days(it is something done by panos  :'(, can be found on this board) after it suit to your body and CBC need to be done every week and thereafter every month atleast till it suit you completely again.
75 mg/kg is initial starting dosage and can be increased to 100 to 125 mg/kg.

More details can also be found in the literature of Kelfer

D & Andy,

I don't plan to do CBC (however, will get it done tomorrow as transfusion is scheduled to be on day after tomorrow) every week, is it fine?

-P.

Pratik - IMHO, while you would love to have yourself armed with all the medicines, you have to listen to your body. I think you should stop taking IP6 for now. Even consider shifting from Exjade chelator to Kelfer for now and see how it goes.

Our body has a system to send signals to us and we need to listen to them. Please consult with your doctor in this regards. While I do understand you being proactive and taking things in your hand, it would be best to get opinion from the doctor's who treat you. Please stay positive and you will get over it. Attack one thing at a time and try to resolve it.

Your best bet at this time is to lower the ferritin, get loads of information from Andy and talk to your doctor soon.

Hi everybody,

I just started L1/Kelfer/Defriprone today with 2 tablets a day. I will increase the dose to 4/day (my weight is 44-45 kg).

I know as per my weight, I should add 2-3 more to regimen as well; but I'm just taking it as a temporary solution until I curb out all Exjade problems.

Andy,

Can taking 4 for now (temporary, maybe around 15 days or a month) will be okay?

-P.

Pratik - Very good step by switching to Kelfer. Do monitor the progress and update us on the progress. If the symptoms go away you can stick with Kefler for now. Slowly increase the dose once your body adjusts to the new chelator (Kelfer/L1).

Kelfer has saved thousands of lives and was the only Oral chelator until Exjade/Asunra came out in 2006.

D & Andy,

I don't plan to do CBC (however, will get it done tomorrow as transfusion is scheduled to be on day after tomorrow) every week, is it fine?

-P.

Have a safe transfusion, Pratik.
Do monitor your Neautrophil count in CBC and signs of the body

Hi Andy and everyone,

Just got the blood work done today.

Hb is 10.3.
SGPT is 57 and SGOT is 52. Creatinine is 0.4.

Exjade is stopped and Kelfar is on, as you know.

-P.

Hi Andy and everyone,

Just got the blood work done today.

Hb is 10.3.
SGPT is 57 and SGOT is 52. Creatinine is 0.4.

Exjade is stopped and Kelfar is on, as you know.

-P.

Update.

The pain was lowering it's intensity slightly since some days but today after transfusion, I feel slightly more pain. Don't know what's the issue ugh.

Has there been any jaundice, yellowing of the eyes and skin, that wasn't already there?

Has there been any jaundice, yellowing of the eyes and skin, that wasn't already there?

No, nothing's been yellow Andy.

SGPT is also normal.

No, nothing's been yellow Andy.

SGPT is also normal.

Hi Andy,

Any replies?

Oh and I just thought out of blue, can an iron increase in liver cause pain? I don't think any such serious is the case, because it pains in left too many a times lol, and this increased after transfusion, just as last time. Can excess of hb/transfusion cause this? I take PCV.

-P.