Thalassemia Patients and Friends
Discussion Forums => Thalassemia Major => Topic started by: Tarak on July 01, 2011, 12:59:45 PM
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Hello!!! My Name is tpraval and i am from india. I am a 21 years old and thalassemia major patient. I had just done my splenectomy surgery two months ago. I had Hepatitis C reactivity since year 2007. My serum ferittin is about 8350.7 ng/ml after splenectomy. and want to start iron chelation therapy immediately because my doctor said that if i will not starting iron chelation therapy immediately, burden of extra iron in my body can causes liver, kidney, heart and other important organs damages. I was took 6-7 blood transfusion in a month before splenectomy and now i have take only two blood transfusion in a month after doing my splenectomy surgery. So what can i do to maintain my serum ferittin level in normal range? and control my HCV reactivity also? Please give me a proper guidance. I want your help immediately. Please give me a reply on "tpraval@ovi.com". I will eagrly wait for your kind reply.
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Hi tpraval,
Your ferritin is much to high and needs serious attention with chelation. What type of chelation drugs do you have available?
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Very very thank you sir for your kind advice. I have available desferal, kelfer, asunra(exjade) and desirox in india. But i have taking asunra(exjade) as per 40 mg/kg/day dose as per my doctor advice and taking asunra(exjade) 1600 mg/day as 40 kg. of my body weight. Is this enough for removing extra iron from my body? and keep serum ferittin level in a normal range? Please give me a suggestion if i had not done enough for removing extra iron from my body. As a costly and painy treatment of desferal pump, i doesn't choose it.
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For how long have you been using Asunra at this dose and have you seen any decrease in ferritin yet?
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I had just starting asunra(exjade) on 22nd april 2011 after splenectomy and i had done my serum ferittin on 31st june 2011. According to this report my serum ferittin level was 8350.7 ng/ml. and then i haven't done any report after it. Before splenectomy my serum ferittin level was 7403 ng/ml. and not any chelation therapy ran at that time. Have you ever seen possibility that any differences in my serum ferittin level after a long time iron chelation therapy?
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If you are faithful with your chelation you will see your ferritin drop. You are on the maximum dose and should see results within 6 months. If the progress isn't fast enough after that, you should consider splitting the dose into two and taking half in morning and half at night, as this will give you a bit more chelation. Since you just started in April, you won't see any big changes in ferritin yet, but be assured that iron is being removed from your organs.
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Good luck! We are here to motivate you!! Keep the good work going on. You do not experience any side effect from it? Otherwise i should advice to take it around 8PM. (not sure what your times for meals are though)
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Thank you very very much Andy sir for your important advice about my iron chelation treatment and i am also very thankfull to Dori ma'm for supports me to removing extra iron from my organs and body. I promise both of you that i will do my best for removing extra iron from my organs and body. Andy sir i have one more question related of splenectomy and the question is that "How long would i continue take pentids 400(penicillin g potassium) as a treatment of post splenectomy antibiotic prophylaxis? Because my doctor didn't mentioned any proper duration for taking this antibiotic prophylaxis as a treatment of prevent suspacted infection occured after splenectomy. I have taken pentids 400 twice daily. Please suggest me a proper duration of this antibiotic prophylaxis as part of post splenectomy treatment.
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Ask your doctor about the antibiotic. Formerly, lifetime daily antibiotics were recommended but in more recent years, the pneumovax vaccine has replaced daily antibiotics for many thals after splenectomy. Ask your doctor about this.
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Respected Andy Sir I had taken vaccines of pneumovax and HIb before my splenectomy surgery as my doctor suggestion. But still my doctor recommanded antibiotic prophylaxis for post splenectomy management. So how long would i take continue pentids 400 twice daily? and also that what can i do to control my HCV reactivity? Please give me a proper guidance.
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The general guidelines for prophylactic antibiotics after splenectomy is to take antibiotics for two years after the surgery, but again you need to ask your doctor about this. The vaccines have eliminated the need for lifelong antibiotics. I would greatly recommend that you take daily natural vitamin E supplements to counter the clotting issues that can occur in patients with no spleen.
I am a great believer is using natural remedies when possible and with HCV, there are several herbs that can help keep the infection dormant and under control. We have talked extensively about using the herb, nigella to control HCV. See the thread at
http://www.thalassemiapatientsandfriends.com/index.php/topic,2639.msg24627.html#msg24627 and see Ambareen's instructions at
http://www.thalassemiapatientsandfriends.com/index.php/topic,2639.msg26081.html#msg26081
Red clover and milk thistle herb are also known to help the liver stay healthy, and milk thistle is often mentioned as an herb that can control HCV. Getting your ferritin reduced will also make it much easier to control.
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Thank you very very much for your imporatant advice about to control my HCV reactivity. I had just read the post that you have gave me a link. I will try this therapy to control my HCV reactivity. I will also ask my doctor about my antibiotic prophylaxis for post splenectomy management. Thanks once again respected andy sir.
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I promise that i will regular take 1/2 teaspoon cumin seeds or onion seeds with honey at early in morning and control my HCV reactivity.
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Respected Andy Sir,
I had just done my S.Creatinine, B.Urea and SGPT reports as per monthly routine and the reports are as under.
S.Creatinine : 0.78 mg/dl ( Normal : 0.8 to 1.4 mg/dl)
B.Urea : 22 mg/dl ( Normal : 15 to 40 mg/dl)
ALT (SGPT) : 71 U/L ( Normal : 0 to 40 U/L)
According to this report S.Creatinine is mildly below from normal range and ALT (SGPT) is very high from normal range. I haven't any problem. So i have a one question related to this report and the question is that "Should i continue take Asunra (Exjade) at the dose of 40 mg/kg/day as my 40 kg of body weight or not? Please give me a proper and helpfull advice as soon as possible. I will eagrly wait for your kind advice and i will very thankfull of you.
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Yes, you can continue Asunra. The elevated ALT reading is only moderate. Asunra should be stopped when the ALT score is 5 times normal. Creatinine is more significant and all of the Exjade drugs should be stopped if there is a 33% increase in creatinine levels. You will also find that having the test done in the morning will usually give a lower ALT reading. Staying well hydrated is also quite important.
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I am very very very thankfull for your kind and important advice respected andy sir.
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Good luck!
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Hello Honourable and Respacted Andysir,
I have attached latest monthly routine report. I have one question related to this report and the question is that "Have you seen any problem in this report?" I haven't any problem but even though I am asking you a this type of question because I have doubt. So please give me a proper and usefull advice. I need your advice on this matter. I hope you will give me your feedback as soon as possible related to this issue.
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Tarak,
The only high level is the ALT. Creatinine and urea are within normal range. When did you stop taking Exjade?
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Honourable and Respected Andysir,
Thank you very very much for your feedback. I have never stopped my asunra or exjade till today but of course increased my dose upto 5 tablets daily of 400mg each from dated 25th July 2011 as per my doctor’s advice because my weight was gain from 40kg to 50kg in last 4 months so I have taking daily 2000mg asunra or exjade daily as per 40mg/kg/day as per my doctor’s advice and never missed a single dose from started on 22nd April 2011 to till today’s date. I am very careful to taking all my medicines daily and never missed a single dose. I am taking now asunra or exjade 5 tablets daily of 400mg each, pentids 400mg twice daily and folvite 5mg once daily. I have taking all of these medicines on regular basis and never missed a single dose. Honourable and Respected Andysir “what do you think for my reports after read all of things that I have mentioned above? Does my reports normal? Is there any reason for me to worry from my reports?” Please give me your important and useful advice related to this issue. I hope you will give me your feedback as soon as possible related to this issue.
Thank You.
Tarak.
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Tarak,
Your ALT score is slightly high and this is most likely due to Exjade. However, the level is not high enough (5x normal) to consider stopping the drug. Even this score may be lowered some by trying some various things, if needed. Stay well hydrated, but this goes for anyone on Exjade. Splitting the dose in two may also help. Getting tested early in the day usually will result in lower ALT's, as daily activity tends to raise this during the day. As I said, the level is of no concern now, so please don't worry about it. It is quite common to see ALT's rise on Exjade but as long as it is not a severe increase, no alarm is warranted.
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Honourable and Respected Andysir,
Thank you very very much honourable and respected andysir for your important and useful feedbacks and especially give me a peace of mind.
Thank you.
Tarak.
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After having a splenectomy, have you seen a drop in your blood ferittin? This goes to all that have gotten one. I still have mine.
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HI ANDY.
i have also had my spleen removed in 1995. since then i have been on oral penicillin 250mg twice a day. what do u advice? should i continue taking it or not take it? pls advice.
thank u.
shaziya
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Yippee, I have succeeded to drop down my serum ferritin level. My serum ferritin level is 3516.0 ng/ml as per 28th September 2011. I have been dropped down my serum ferritin level by 4834.7 ng/ml in last four months.
:yaaaaaay :yaaaaaay :yaaaaaay :yaaaaaay :yaaaaaay
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Excellent progress Tarak! I think you will find that once it begins to drop, it drops quicklyy.
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Shaziya,
All of the recommendations I have seen for post splenectomy care are to do exactly what you are doing for life. This could eventually change, but for now 250 mg penicillin twice daily is the routine.
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HI ANDY.
thank you so much for replying so soon. it is a relief to know that there is somebody we can turn to when we want to know something. when i saw some references to some vaccines i started having doubts if i was doing the right thing. thanks once again.
shaziya
HI TARAK.
CONGRATULATIONS . v happy for u. wishing u all the best in bringing ur ferritin down....
shaziya
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Thank you very very much for motivate me. My special thanks to honourable and respected Andy sir and dear shaziya. I am happy to see both of you here and motivate me. Please keep motivate me to bring down my serum ferritin level under 500ng/ml.
Once again thank you both of you.
Tarak.
:thankyou2 :thankyou2 :thankyou2 :thankyou2 :thankyou2 :thankyou2 :thankyou2
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Tarak,
It's all you doing the work. Your own inner strength and confidence are what is needed to take control of your health and you have made great progress. We can point the way but it's up to you to make the decision to live. I am proud of how hard you are working to turn things around. :thumbsup
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Shaziya,
In addition to penicillin, the pneumonia vaccination is also usually given if a patient has had a splenectomy.
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HI ANDY.
thanks. i am so sorry to keep on bothering u but i dont think that i have not been given the pneumonia vaccine . is it given once after the surgery, if that is so maybe i dont remember if i was given since i was v young. or is it given every year or something bcoz i hav never taken it any time these past few years..
thank you so much.
shaziya
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Is it really recommend to take pencillin after a splenectomy? I have never taken it but again I met someone in the PKD world who is taking it for 10? years now andi s 17yrs old. Can he ever stop with it? What's the common answer on these kind of questions?
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hi dori.
i have also been taking penicillin for more than 10 years now. i guess it is our life long friend whom we cant forget.
shaziya
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Yippee, I have succeeded to drop down my serum ferritin level. My serum ferritin level is 3323.0 ng/ml as per 7th November 2011. I have been dropped down my serum ferritin level by 193.0 ng/ml in last forty days.
Thank you.
Tarak.
:yaaaaaay :yaaaaaay :yaaaaaay :yaaaaaay :yaaaaaay :yaaaaaay :yaaaaaay
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I love hearing these good reports! :thumbsup
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Congratulations!!!!!!
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really good news Tarak ..... Congratulations and keep it up :) :thumbup :congrats
:goodluck for chelation and hope to see your fe level in normal range soon
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Is it really recommend to take pencillin after a splenectomy? I have never taken it but again I met someone in the PKD world who is taking it for 10? years now andi s 17yrs old. Can he ever stop with it? What's the common answer on these kind of questions?
Yes, 100%.
Taking it for the past 25 years now. The good part of it is that it seems to have built some kind of natural, immunity in me against all the common infections <fingers crossed>
cheers
Poirot