Thalassemia Patients and Friends
Discussion Forums => Thalassemia Major => Topic started by: Pratik on September 26, 2012, 05:12:44 PM
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I would just like to know more. I am chelating aggressively although I am keeping myself alarmed. I have heartbeats staying around 100+ always so it has always been a concern to me.
Could anyone list it Andy or anyone?
Would just like to know.
-P.
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Pratik,
You are doing the right thing by chelating aggressively. Heart functions are very important when it comes to Thalassemia patients.
You can read the symptoms at http://www.cooleysanemia.org/updates/Cardiac.pdf
What symptoms are related to cardiac issues and how are these issues diagnosed?
Symptoms may include shortness of breath or difficulty breathing (sometimes even when at rest); palpitations; fainting; chest pain; feeling very tired very easily; and unexplained swelling around the ankles.
However, symptoms of cardiac complications often don’t show up until the complication is already advanced. Because cardiac issues are common in thalassemia, it is therefore necessary for patients to undergo regular tests that can pick up warning signs in the early stages. These tests may include:
Chest x-ray
Electrocardiogram
24-hour Holter monitor
Cardiac Stress Test
Echocardiogram
MUGA Scan
T2*
Functional Cardiac MRI
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This is now a thing of concern.
I do have palpitations - high heartbeats and am now starting to worry a lot. I am having little chest pain since past 2 days, but that may be due to gastric problems as I always catch them often.
Andy or anyone could give me any more advice? What if my iron gets to normal levels? Did it still may have affected the heart or would posses risk? Would reduce in iron lead to an increase in T2* score (however I haven't got it done yet but I firmly plan this time).
-P.
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Pratik,
Don't be too worried. Look at the same link : http://www.cooleysanemia.org/updates/Cardiac.pdf
How are cardiac issues treated?
Fortunately, progression of heart failure and other cardiac issues can be halted and in many cases reversed. The key to this is aggressive chelation therapy. This may take the form of 24-hour Desferal treatments, administered intravenously, or therapy involving both Desferal and the oral chelator deferiprone.
In addition, dietary changes may be required, as well as making sure the patient receives sufficient rest. There are some drug-based therapies that
may also be utilized, such as ACE (Angiotensin Converting Enzyme) inhibitors, which help reduce blood pressure and improve heart function;
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Yes Narendra, I did read that whole excerpt.
However, it's my question to you (if you know) and Andy, that the excerpt also mentions Digitalis tablets to slow down heartbeats. Should I buy it or ask my concerning doc to put me on it?
Today, I woke up and no actions were being made, then also, my heartbeats were 110. It got me too much concerned and worried.
Or I guess Andy you were talking about some other medicines as well to reduce heartbeats, I couldn't recall, perhaps anything that can help me solve this?
-P.
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I would just like to know more. I am chelating aggressively although I am keeping myself alarmed. I have heartbeats staying around 100+ always so it has always been a concern to me.
Could anyone list it Andy or anyone?
Would just like to know.
-P.
Pratik,
It is not looking good that your heartbeat is 100+, you must take opinion of Cardiac Physician, ASAP.
1. I would like to know that which chelator was used by you before launching of Asunra? Kelfer?
2. Let me tell you that i have a different opinion , KEEP IN MIND, that you are not chelating aggressively.
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Yes, Kelfar. Going to see my family doctor (MD) which also specializes in cardic problems tomorrow.
Chelating aggressively, means in terms of Asunra, opting for max dose.
-P.
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Andy, your opinion will also aid me, if possible.
-P.
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Pratik,
You should have a heart scan done to see if this is a product of iron load. While the heartbeat is high, it is not at a dangerous level, but youneed to find out why it is so high. I assume you're not a smoker.
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Yes I will get it done shortly.
And no, lol, I'm not a smoker. I have no bad habits at all. Neither tobacco, smoking, nothing.
Hell I even hate smokers around me, no one in my family smokes.
I also read that it maybe result of hyperthyroidism. When I got diabetic, the levels were slightly high so my Endocrinologist advice me to do a course of 1 bottle, I did. I even still take it today since long, so I don't think I've any thyroid. However, I'll get that done as well this time.
-P.
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Yes, Kelfar. Going to see my family doctor (MD) which also specializes in cardic problems tomorrow.
Chelating aggressively, means in terms of Asunra, opting for max dose.
-P.
I was just wondering Why don't you think to restart Kelfer, if it suit you? Alone or with Asunra?
As Kelfer is capable in reduction of cardiac iron.
@Dear Andy.
What else could be the reason other than Iron for higher heartbeats in case of pratilk?
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Other possible causes would be low Hb and insufficient exercise.
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Other possible causes would be low Hb and insufficient exercise.
Yesterday,
I didn't paid visit to the family doctor (which I talked about previously in above posts) but my dad just went to consult and he also told that low Hb could be the reason. But my Hb always stays above 9.
Yeah, I've been lazy these days and not exercising as I used to previously. But even when I was, I had my beats high, I thought excessive exercise also may cause troubles.
Should Defriprone and Exjade be taken together, Andy? How safe or good it would be?
-P.
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I've only known two people who have used Deferiprone and Exjade in combination. Because it has had such limited trials, I would not recommend it, unless under a doctor's weekly supervision.
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Hi everybody.
I visited that family doc of mine (who also is a heart specialist) and got ECG (Electronic Cardiogram) done.
It was perfectly normal.
I will get T2* done shortly.
-P.
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Hi everybody.
I visited that family doc of mine (who also is a heart specialist) and got ECG (Electronic Cardiogram) done.
It was perfectly normal.
I will get T2* done shortly.
-P.
Any comments Andy about ECG being normal?
-P.
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Both ECG and Echo can show normal heart function, but your heart can still be iron loaded. It's good that heart function is showing normal, but the iron load continues to be the needed focus. I feel you are on the right path.
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Both ECG and Echo can show normal heart function, but your heart can still be iron loaded. It's good that heart function is showing normal, but the iron load continues to be the needed focus. I feel you are on the right path.
My Echo is normal and LVEF at 62% but Cardiac Iron Score is 7.8 which is poor. Inspite of having normal Echo i am having mild chest pain. So one can't solely depend on Echo.
Same thing on part of Liver, SGPT is 32 but the Hepatic Iron Score is 370 which is agaiin poor.
So, primary tests sometimes fails to indicate danger, if any.
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Exactly right, Dharmesh. By the way, my friend, Nur had a T2* similar to yours. Desferal 7 days a week brought the score up to almost 14 after one year and over 20 after two years. Patience and compliance will pay off.
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So Nur is the person whose score was quoted by you in reply of my earlier post of motivating me.
Let me wish Congratulations to Nur on achieving normal T2* :thumbsup :congrats
If Nur was chelating 7 days a week for 2 years then what was the daily dosage of Desferal 1g, 1.5g or 2g? Was it for 24 hours?
P.S. It was also happened to another friend whose Echo is normal, ECG rytham shows fluctuations and T2* is poor, So it happens to many. And Again primary test should not be relied upon in toto.
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Dharmesh,
You may know Nur on Facebook, as she is part of our groups. I believe it was 12 hours a day, 7 days a week. I do not know what dose she was taking.
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Not relying on either of the tests. Am stressing this time enough for myself and also to dad to pay a visit during this time my transfusion is scheduled (after 14 days). Actually, schedule is very hectic these days.
-P.
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Not relying on either of the tests. Am stressing this time enough for myself and also to dad to pay a visit during this time my transfusion is scheduled (after 14 days). Actually, schedule is very hectic these days.
-P.
There are some guys at Ahmedabad who are helping hand and may help you in getting this complete. If you want to contact , tell me , i will send you the no.
They are also on Whatsap and running a group on Whatsap, If u want to join.