Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: Pratik on December 11, 2012, 12:31:51 PM
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Hi Andy and everybody,
I finally thought to post this.
I'm having issues with Exjade since past 2 weeks. In my 4 years of taking Exjade, I've never had such en-longed issues.
I had skipped Exjade for past 3 days and started again with 800mg (1/2 of my dose i.e. 1600mg) today and again I am experiencing mild pain/discomfort near liver and on lower right side. If I stop Exjade, I'm just fine.
What to do? Is there any ailment or alopathy medicine that could be taken?
I'm currently taking HepaMerz for liver (brings SGPT down) and daily take turmeric. Though liver part is not very paining, but first time I'm experiencing mild pain in lower right side as well, lol.
Meanwhile I'm taking IP-6 daily to make sure someone is working on my back to remove iron.
Regards,
-P.
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Pratik,
Not to scare you but IMO, you should evaluate your liver condition before starting Exjade again. Here is what I read about Exjade side effects.
From : http://www.us.exjade.com/index.jsp?usertrack.filter_applied=true&NovaId=4029462064339200170
Liver: People with pre-existing severe liver problems should not use EXJADE. A lower starting dose of 10 mg/kg/day is recommended for people with moderate liver problems. Anyone using EXJADE who has mild or moderate liver problems should be closely monitored. They may need their dose adjusted based on efficacy or safety.
Some patients developed severe liver problems, in some cases fatal, while on EXJADE. Many of these patients were greater than 55 years of age and/or had multiple medical conditions already affecting their liver. Your doctor will give you blood tests called serum transaminases and bilirubin before starting treatment, every 2 weeks during the first month of treatment, and then monthly.
I hope that is not the case with you but you should check it out before you start it again. Also, you can switch to Kelfer if that was working for you earlier. After all, there is a reason why we have multiple chelators in the market.
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I really love Exjade and don't want to switch to other chelators.
But I now plan to stop for again few more days.
What type of tests should I get done?
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Pratik,
I am not a patient so can't guide you from my own experience but from what I have read, here are few pointers.
http://www.thalassemiapatientsandfriends.com/index.php/topic,3867
have the same "Extrameduräre blutbildung" in my body like him. i have this for over 20 years now.
and for the liver-infarkt...a good doc sees it by the "Ultraschall" nowadays where i have the iron troughn
out of my liver the pain is gone away....
http://www.thalassemiapatientsandfriends.com/index.php/topic,308
Poirot mentions to get a Liver function test (LFT) and a liver MRI for getting a clearer picture.
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Pratik,
I am not a patient so can't guide you from my own experience but from what I have read, here are few pointers.
http://www.thalassemiapatientsandfriends.com/index.php/topic,3867
http://www.thalassemiapatientsandfriends.com/index.php/topic,308
Poirot mentions to get a Liver function test (LFT) and a liver MRI for getting a clearer picture.
I'm having pain near my lower right (kidneys I assume?) more than liver these days. I'm simply bewildered as to why is this happening.
Andy,
Maybe IP-6 is conflicting with Exjade in some form? Because in these past 4 years, I never had such an instance. Although for the past 3 days, I was okay as I had stopped Exjade.
My transfusion is planned on this Saturday, so the blood work will be done on Friday.
Let's see. What tests should I get done for liver and kidney apart from ALT/AST?
edit: I also noticed two small red spots on my leg joints, what's happening? So scared.
-P.
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Pratik,
you should really see your hemo or your primary care giver. In this forum, most of us are parents or patients or friends and not a doctor. if something is going on for more than few days and it is bothering you, you should get it checked by the people who are trained to look at these thigns. Just my thought...Hope you feel better soon.
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Pratik,
You should also regularly have the serum creatinine test for kidney function. Because HepaMerz is contraindicated when kidney function is poor, and because Exjade can adversely affect kidney function, I would suggest stopping HepaMerz for now, along with Exjade, until you have had the serum creatinine test done. This is quite important.
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Pratik,
You should also regularly have the serum creatinine test for kidney function. Because HepaMerz is contraindicated when kidney function is poor, and because Exjade can adversely affect kidney function, I would suggest stopping HepaMerz for now, along with Exjade, until you have had the serum creatinine test done. This is quite important.
What? HepaMerz maybe instead spoiling up things? Didn't quite got it. OK I will stop it. It was prescribed to me more than 2 years ago for the mild increase I had, I was just taking it recently due to these issues.
So serum creatine is same as SGOT or something different?
I'm now stopping Exjade until the reports come, which is on Friday.
Also Bostonian, thank you for advice. I will see my family doc.
Thank you everybody.
-P.
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Serum creatinine is a test for the kidneys. The other tests are for the liver. It's not that HepaMerz is a harmful supplement. But it is not to be used if there is a problem with kidney function, and because Exjade can cause kidney problems, you need to get the test done to make sure your level is normal. If your serum creatinine test is normal, it should be safe to resume HepaMerz.
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Serum creatinine is a test for the kidneys. The other tests are for the liver. It's not that HepaMerz is a harmful supplement. But it is not to be used if there is a problem with kidney function, and because Exjade can cause kidney problems, you need to get the test done to make sure your level is normal. If your serum creatinine test is normal, it should be safe to resume HepaMerz.
I regularly do SGPT and SGOT.
Isn't SGOT the serum creatine function test?
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SGPT=ALT
SGOT=AST
Both are liver function tests. Serum creatinine is a kidney function test. If you got to Table 7.7 in the SOC Guidelines, it gives a complete list of tests required for each chelator. For your convenience, I am attaching a copy of the SOC to this post.
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SGPT=ALT
SGOT=AST
Both are liver function tests. Serum creatinine is a kidney function test. If you got to Table 7.7 in the SOC Guidelines, it gives a complete list of tests required for each chelator. For your convenience, I am attaching a copy of the SOC to this post.
Sorry, I was mistaken with the names. Yes, I do get creatine done at least on alternate basis, if not every time. It usually shows as normal. Will get it done this time as well.
And thanks for the attachment, will surely look to it.
-P.
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It's second day stopping Exjade today and I'm still feeling "burning like" pains in liver and kidney. My blood work will be done tomorrow. Really experiencing worst time ever with those two organs.
Would IP6 be causing by any chance? Should I skip IP6 for a day or two and see if it helps?
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I doubt IP6 could cause pain like that. I would suggest stopping everything for a day or two. Have you ever had kidney stones?
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I doubt IP6 could cause pain like that. I would suggest stopping everything for a day or two. Have you ever had kidney stones?
Never.
My kidney always have been superfine. I always used to drink 6-7 liters of water daily and still do so. This time, liver and kidney, both seem to be on target and I believe Exjade is causing this possibly.
Can excess calcium also cause this? However, I don't think that I'm full with calcium, lol.
That'd be good advice to start with, stopping all supplements and medicines for a day or two.
-P.
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Introduce things one by one when you start back up to see if you can determine what is the cause.
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Introduce things one by one when you start back up to see if you can determine what is the cause.
Will surely do so.
It is also important to know that while winters being great, it's also a headache for me to manage my sugar levels. My POST launch sugar just before 30 minutes read 550, terrible. Winters are always sugar shooters. So the pain might be also slightly aided to increase because of it? Not sure, as the time it was when introduced a week or two back, I had normal sugar levels.
-P.
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Hi Andy,
The reports have arrived (ferritin left). As below:
Hb: 9.9 (unexpected!).
SGPT: 131 (last time it was 141 or so).
Serum Creatinine: 0.4 (it's normal I believe?)
Today is 3rd day stopping Exjade but the pain is still there, most effectively in lower right region. I will pay a visit to family doc today most likely. Bewildered as usual as to what's causing this.
-P.
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Pratik,
Your creatinine level is fine and that is great news. The fact that the pain persists while taking no supplements or meds suggests that these are not the cause. I would suggest pursuing an answer that may not necessarily be related to any substance you are ingesting. Appendicitis? Kidney stones? An intestinal virus? As far as IP6, it can cause some stomach discomfort because of the amount of powder ingested at once. My wife suggests taking a lot of water with the IP6, followed by tea (no milk). You can also split the dose so you don't take as much at one time.
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Pratik,
Your creatinine level is fine and that is great news. The fact that the pain persists while taking no supplements or meds suggests that these are not the cause. I would suggest pursuing an answer that may not necessarily be related to any substance you are ingesting. Appendicitis? Kidney stones? An intestinal virus? As far as IP6, it can cause some stomach discomfort because of the amount of powder ingested at once. My wife suggests taking a lot of water with the IP6, followed by tea (no milk). You can also split the dose so you don't take as much at one time.
I'm feared from Appendicitis or kidney stones as well. That's why my doc suggested to get the sonography done, so I have planned to do it on Monday as today was my TX day.
I'm already splitting IP6 dose and taking it with adequate amount of water. Taking two capsules daily, one 45 minutes before launch and the other 45 minutes before dinner as well. I am swallowing capsule directly, not taking powder form.
Also I believe IP6 did nice job in renewing quality and life of RBCs, I believe.
Okay, I will try to add green tea to my regime while taking IP6.
-P.
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Hi Pratik....hope you find the cause of pain soon and get well from it.
My son has been on Exjade for a week now and was fine with it. I started him on 1500mg (bw x 20) of Exjade a day split dose instead of 2000mg (body weight x 30). He has had a very bad and persistent cough so yesterday we bought some cough mixture VENOS (Beechams) and after taking this (7.5ml) after midday he started to develop a rash. What was initially small red spots has become very dense and is covering his arms, torso, neck, face, just everywhere. He says its not that itchy but is making his skin feel very warm. He has stopped taking Exjade for now. I phoned the Pharmacist who said not to continue with the cough mixture and as we had hayfever tablets at home (cetrizine dihydrochloride), I asked if this would help stop the reaction. They said it was okay to take 1 pill and that the rash should start clearing in 1 hour. It has not cleared. I do not know if this a delayed reaction with Exjade...if it was the cough mixture is should have cleared by now. We are going to the hospital today. I hope Insha Allah, Allah willing, the rash clears up soon.
Has anyone had this with Exjade (I know that Fatinsyakirah had this problem with their daughter but there is no further post to say the outcome) and how soon before the rash cleared? did you continue with the Exjade afterwards?
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Hi Pratik....hope you find the cause of pain soon and get well from it.
My son has been on Exjade for a week now and was fine with it. I started him on 1500mg (bw x 20) of Exjade a day split dose instead of 2000mg (body weight x 30). He has had a very bad and persistent cough so yesterday we bought some cough mixture VENOS (Beechams) and after taking this (7.5ml) after midday he started to develop a rash. What was initially small red spots has become very dense and is covering his arms, torso, neck, face, just everywhere. He says its not that itchy but is making his skin feel very warm. He has stopped taking Exjade for now. I phoned the Pharmacist who said not to continue with the cough mixture and as we had hayfever tablets at home (cetrizine dihydrochloride), I asked if this would help stop the reaction. They said it was okay to take 1 pill and that the rash should start clearing in 1 hour. It has not cleared. I do not know if this a delayed reaction with Exjade...if it was the cough mixture is should have cleared by now. We are going to the hospital today. I hope Insha Allah, Allah willing, the rash clears up soon.
Has anyone had this with Exjade (I know that Fatinsyakirah had this problem with their daughter but there is no further post to say the outcome) and how soon before the rash cleared? did you continue with the Exjade afterwards?
I've currently stopped Exjade since couple of days, not going to start unless the SGPT levels go down.
Sorry to hear about your son Amby.
But when and if I get reaction/rashes that makes me itching, I take Avil (by Aventis) and they disappear in no more than 15-20 minutes.
-P.
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Pratik...hope the sgpt levels come down (super)quick!
He was told at the hospital to continue with the Exjade and to take Piriton for the rashes.The rashes has appeared now cos the Exjade is now properly in his system, to give it time, it is a usual thing to happen and it should clear. Only if the tongue starts swelling should he return to the hospital :(.
Pratik, from your reply, it appears that you have had rashes on and off with Exjade so should we expect that to be the norm with Exjade or should the rash not return.....?
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Emby,
The rash is usually only temporary and lasts no more than 2 weeks. Try only 1/3 the dose when he re-starts. With Exjade, it's just a matter of getting the body use to the new drug.
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I'll start all the supplements from tomorrow, I believe, Andy; as the possibility is ruled out I think as I did stopped them for 2 days and I'm still at the same stake.
I saw my physician and he advised some tablet which I'm taking since Friday evening but still no good. He also told me to got sonography done, but as it was Sunday today, I'll get it done tomorrow. Lets see what I stand, so fed up as well as scared from inside as to what maybe causing it. I hope not stones or appendicitis.
-P.
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Hiya Andy....the rash appears to be lessening on his face after taking 10ml Piriton but they have told him to continue with the Exjade. He was taking 1 and half (500mg) tablets in the morning and 1 and a half in the evening instead of the 2 tablets he is supposed to be taking in the morning and then again in the evening. would this be okay to continue with?
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They said that they don't think the cough mixture had anything to do with the rash but told him not to continue with it. They said it could be a result of a cold/flu virus as it is very common in younger children but think it is more likely to have been caused by Exjade although they can't say for certain.
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It all depends on the severity of the rash. If it's under control and not bothering him, keep him on it. Our other administrator Danielle, had a horrible rash when she started. She got past it and takes Exjade regularly. It is truly a temporary thing.
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Dear Pratik....praying everything turns out well for you. Please try not to worry too much...and this from someone worrying alot at this side of the world :wink.....it.s a good thing the body gives out warning signs giving us time to take action..and yes it is scary cos sometimes there is no warning. God Willing you will find the cause and be able to treat it successfully and easily.
Thank you for your valuable feed back on Exjade.
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Thanks Andy. Will do that.
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I was feeling little good than yesterday when I woke up. However when two hours back I took IP6, I don't know if it's my doubt or just misconception but I'm feeling slight burning and pain again.
Andy,
I've read somewhere that IP6 should not be taken who has liver disease (as in my case, I don't have one, but maybe having little high SGPT may lead IP6 to cause some problems?). So I plan to stop IP6 till I heal myself completely.
What do you think?
-P.
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Hi everybody,
My sonography reports has arrived.
It's a good news that there's nothing major, spleen is enlarged (didn't mentioned how much) but that's normal for thals, and the liver is slightly enlarged as well (I think majors has slightly enlarged liver anyway? Please correct me if I'm wrong). My kidneys are normal as well, and I think there is no appendix or stomach problem (if there was, it should indicate in USG for abdomen right?)
The physician went off to home so we could not get him sonography reports checked, so will do that tomorrow.
I'm attaching the report.
-P.
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After extensive searching, I can say that there are absolutely no known side effects even for huge doses of IP6. However, I finally found some info about the initial side effects some people experience when starting IP6.
http://www.livestrong.com/article/390116-ip6-inositol-side-effects/
Diarrhea
IP6 inositol may induce a problem in your bowels temporarily that disturbs the normal balance of digestion, Sloan-Kettering states. This can produce watery stools, also known as diarrhea. This non-serious side effect may cause cramping in your abdomen, but should recede and stop as your body adjusts to IP6 inositol. If your diarrhea appears severe or does not stop in a few days, see your doctor.
Flatulence
When you begin using IP6, you may develop more gas in your intestines than normal, Sloan-Kettering indicates. This can produce flatulence. This side effect of IP6 does classify as a non-serious health concern and should desist once your body has made the appropriate adjustment to the supplement.
Nausea
Because IP6 inositol hexakisphosphate can cause disturbances in your gastrointestinal system, you may feel queasy when you begin using it. Nausea may occur as a mild side effect and should cease on its own in a few days. If it causes vomiting and feels severe, see your doctor for help
My advice is to begin again with just one capsule daily. See if the symptoms clear up. Your reports are all good, so it is unlikely anything serious is going on. One other thing I learned was that IP6 works even better when taken with inositol.
Another note I want to make is that IP6 can inhibit absorption of minerals, so it shouldn't be taken with meals. But to correct a misunderstanding many people have about IP6, it will not cause mineral deficiencies. The human body has regulatory mechanisms that should be trusted.
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After extensive searching, I can say that there are absolutely no known side effects even for huge doses of IP6. However, I finally found some info about the initial side effects some people experience when starting IP6.
http://www.livestrong.com/article/390116-ip6-inositol-side-effects/
My advice is to begin again with just one capsule daily. See if the symptoms clear up. Your reports are all good, so it is unlikely anything serious is going on. One other thing I learned was that IP6 works even better when taken with inositol.
Another note I want to make is that IP6 can inhibit absorption of minerals, so it shouldn't be taken with meals. But to correct a misunderstanding many people have about IP6, it will not cause mineral deficiencies. The human body has regulatory mechanisms that should be trusted.
Thank you very much Andy.
I think I'll start it now when I'm completely healed with my pain. I'm getting worried because I just had transfusion on Saturday and Exjade is stopped since almost a week (completely!).
What about liver enlargement? Is it normal? Can it be swelling? If so can it be reduced with proper medications or such?
-P.
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Pratik,
Liver and spleen enlargement are common in thals and are a result of the breakdown of the transfused blood. Nothing to be concerned about as long as the spleen doesn't become huge.
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Pratik,
Liver and spleen enlargement are common in thals and are a result of the breakdown of the transfused blood. Nothing to be concerned about as long as the spleen doesn't become huge.
Thanks Andy.
I think my spleen is being good. This time my Hb was 9.9 which is unbelievable. Although I was expecting around 9.2 or 9.3 but not 9.9! I think it's result of IP6.
Hopefully I'll start IP6 again when my liver is completely healed. I am showing some improvement today and I think I might be able to start Exjade in 2-3 days.
-P.
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Hi everybody,
My sonography reports has arrived.
It's a good news that there's nothing major, spleen is enlarged (didn't mentioned how much) but that's normal for thals, and the liver is slightly enlarged as well (I think majors has slightly enlarged liver anyway? Please correct me if I'm wrong). My kidneys are normal as well, and I think there is no appendix or stomach problem (if there was, it should indicate in USG for abdomen right?)
The physician went off to home so we could not get him sonography reports checked, so will do that tomorrow.
I'm attaching the report.
-P.
Good to see good report, Pratik.
Whenever u go for Sonography do ask the doc. for exact size of spleen in cms.
because they generally don't give it in the report.
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Good to see good report, Pratik.
Whenever u go for Sonography do ask the doc. for exact size of spleen in cms.
because they generally don't give it in the report.
Yea, I just got to know during this reports. Is there a way I can know now from reports or contacting the sonography center to tell me it's size without performing another sonography?
-P.
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Hi everybody,
I've started with 1/4th of my dose from today (400mg; 1600 was regular) and would going on boosting the dose to 1600 during these 4-5 days. Hopefully now it won't matter me again.
Iron, here I come to fight with you!
-P.
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Yea, I just got to know during this reports. Is there a way I can know now from reports or contacting the sonography center to tell me it's size without performing another sonography?
-P.
Yes ,
go to the centre with your report
tell them that your doc has asked for exact size
if the data have been saved in their sono machine they will give you new print
u can ask an image / photo also
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I again started Exjade today and am having liver sided pain, this is now irritating me. I only took 400mg (1/4th of my dose) today.
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Plz do CBC report and check platlate and wbc counts.
Pain might be due to spleen.
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Plz do CBC report and check platlate and wbc counts.
Pain might be due to spleen.
I always get that done. Both are normal.
And I'm experiencing pain near lower middle right side, near the liver. My Hb stays fine too so spleen would be good I believe.
-P.
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I'm wondering if the gallbladder might be involved. Have your bilirubin reports been normal?
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I'm wondering if the gallbladder might be involved. Have your bilirubin reports been normal?
Yes Andy, they were normal.
My physician feels as if it might be a little swelling or a muscle spasm and he has prescribed me a tablet 2 days back and I'm taking it. Slight improvement is noticed. It's really shaky to come to a conclusion as on one point I might feel good and some other time, it again disturbs me.
But I noticed one thing that when my sugar levels are normal, it pains less or that's just me. I'm trying very hard to keep my sugar levels normal.
And moreover, if there was something wrong in gallbladder wouldn't sonography tell it?
-P.
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Sonography would show gallstones but could miss a blocked duct. The bilirubin level would be quite high though, if a duct was blocked. If it is a muscle pull or tear, it can take a long time to heal. If it is a spasm, it should pass much sooner.
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Sonography would show gallstones but could miss a blocked duct. The bilirubin level would be quite high though, if a duct was blocked. If it is a muscle pull or tear, it can take a long time to heal. If it is a spasm, it should pass much sooner.
Andy,
So what do I do?
I'm taking 400mg (1/4th) since 2 days with some difficulties. Should I ignore the pain and increase the dose to 1200 regardless of all this?
-P.
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I guess I pretty much spotted the cause of this. Exjade. Yes, Exjade/Asunra - the tablet which I used to take since past 4 years never gave me any trouble which now is continuously troubling me.
I was thinking to take Asunra or not today. I was feeling little good and slight improvement in my liver area's condition when I woke up. But when, just now during meals when I only took 200mg (1/8th of dose!), immediately after 10-15 minutes, I started to experience a mild swelling and pain on right side (liver area) and a bit of discomfort in left side as well.
Andy,
I'm really having a breakdown now. My iron is increasing and there's nothing that I'm able to do and solve the situation. Taking prescribed tablets since more than a week, taking turmeric daily twice, but nothing is helping. I even stopped Asunra for the past week.
Should I switch to my good old Kelfer for a while until these issues fixes? Would it be as effective as Exjade (know that I took Kelfer/Defriprone/L1 till I was 13) because I never had nicer reports with Kelfer (the ferritin ones I mean).
If so, what would be the dosage? My weight is around 45kg.
I worked so hard since past 6 months to fight my Fe levels and I was winning, but at last, I feel that I'm now defeated. :-\
Also any herbs or some medicine or something which may aid to fix this problem could be possibly suggested by you?
-P.
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Pratik,
Have you tried any of the other brands of Exjade? It might be worth a try to see if the same reaction occurs.
I favor Kelfer over Exjade in general, as long as it is tolerated. The dose is 75 mg/kg so your daily dose would be 3375 (3500 would be in the acceptable range). Combination with desferal would be best.
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Pratik,
Have you tried any of the other brands of Exjade? It might be worth a try to see if the same reaction occurs.
I favor Kelfer over Exjade in general, as long as it is tolerated. The dose is 75 mg/kg so your daily dose would be 3375 (3500 would be in the acceptable range). Combination with desferal would be best.
I've took Kelfer for 14 years. Would it be as good as Exjade over all?
Desferal - Never took it neither do I have it's pump. Needle is not a problem for me neither any fear for the injection or it's prick; says a man whose body bares 5 needles daily and more than 5000 needles since these past 4 years, almost. But the time required, 14-15 hours or even 8 hours, I feel is too much. I too work at home, being webmaster as well as a collegian. :(
I know health serves first, but I'll avoid Desferal as far as I can.
I'm still seeing if my condition improves in several days.
I'm feeling little good now, to be specific, 3-4 hours after taking Exjade, where it's major work is done, hence I believe the liver would be relaxing afterwards.
-P.
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Andy,
While I was talking with Dharmesh, he mentioned he had abdomen pain years ago and that it was detected it was liver inflammation and fluid was gathered at one place. He was given a Lasix injection and the pain went away.
Now is it same as Lasix tablet because I take it on transfusion and sometimes other days to urinate more and relive the load.
What should I do to get the liver inflammation tested? Too much of problems these days and hating things now-a-days.
And I took IP6 3 hours back and again feeling little what burning sensation near liver side. Don't know if it's just my mind or something but I guess I'm too bad for IP6 to be suited. Can changing brand help next time?
-P.
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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.
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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.
You are very correct, Narendra.
I am just the another guy who goes on stocking body with all the things that could be beneficial. I had IP6 stopped since more than a week and just thought today to have one and I got the result, lol. I just wonder how can IP6 affect it as it's a natural substance even found in many of the foods I eat such as Soy, etc.
I will be likely switching to Kelfer in 3-5 days for a while and see how it goes.
-P.
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Andy,
While I was talking with Dharmesh, he mentioned he had abdomen pain years ago and that it was detected it was liver inflammation and fluid was gathered at one place. He was given a Lasix injection and the pain went away.
Now is it same as Lasix tablet because I take it on transfusion and sometimes other days to urinate more and relive the load.
What should I do to get the liver inflammation tested? Too much of problems these days and hating things now-a-days.
And I took IP6 3 hours back and again feeling little what burning sensation near liver side. Don't know if it's just my mind or something but I guess I'm too bad for IP6 to be suited. Can changing brand help next time?
-P.
Any suggestions/comments Andy?
-P.
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The most serious issue I have ever seen reported with IP6 use is intestinal gas, and that isn't really serious. Is there a possibility that this is gas? I would think an inflamed liver would have been discovered by the recent scan.
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The most serious issue I have ever seen reported with IP6 use is intestinal gas, and that isn't really serious. Is there a possibility that this is gas? I would think an inflamed liver would have been discovered by the recent scan.
Andy,
I do get burps frequently in recent times. Though it's very much possible that they are occurring as a result of various medicines that I need to take for liver cure and all are very strong and has bitter taste (although I swallow it).
But I don't seem to spot whole this situation as gastric trouble. It's definitely liver being humming up, I feel.
-P.
Oh and;
http://www.earthclinic.com/CURES/liver_damage.html
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.
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Pratik,
Is the bitter taste that is belched up bile?
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Pratik,
Is the bitter taste that is belched up bile?
Andy,
I don't get what you mean exactly. The burps have now stopped. My liver seems to be swollen up. As well as the pain in left side is again visible after taking Exjade yesterday.
I've applied to get Kelfer and I'll receive it today most probably and start it right away for time being.
I also plan to meet a liver specialist on Monday most probably.
-P.
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Bile is the bitter taste you get in your mouth sometimes when you burp. Regular bile burps are usually a sign of gallstones but can also indicate a blocked duct between gallbladder and liver. Can you learn more about the scan you had? You need to know that they looked for both gallstones and blocked ducts.
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Bile is the bitter taste you get in your mouth sometimes when you burp. Regular bile burps are usually a sign of gallstones but can also indicate a blocked duct between gallbladder and liver. Can you learn more about the scan you had? You need to know that they looked for both gallstones and blocked ducts.
No, fortunately I never had any bitter burps.
And I went to my physician again, lol, not giving up so early; to probably get to try some other medicine.
I took one dose at night and one at this morning and I'm at least feeling good than what I was feeling yesterday. The medicine is "Spasmo-Proxyvon" if I'm not mistaken.
I really hope that this clears out this weird situation that I'm revolving around since last 2-3 weeks.
I'll see if I feel much better with this or I'll pay a visit to the liver specialist.
-P.
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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 :wink
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.)
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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.
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Yes, any chelation is better than none. Sometimes a lower dose of Kelfer is all that can be tolerated, so desferal is also used.
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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.
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Kelfer should be taken 3 times daily, as its effects diminish after 6 hours.
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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
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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.
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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.
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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.
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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
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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.
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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.
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Has there been any jaundice, yellowing of the eyes and skin, that wasn't already there?
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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.
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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.
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Pratik,
Your liver values are fine and you show no sign of jaundice. Even though the location of the pain is in that area, there is no sign that liver function is affected. A blocked duct would result in an increase in bilirubin level, but could be missed in a scan if the ducts weren't examined closely. I also think that would probably cause constant pain. Is there a possibility that gallstones were missed in the scan?
Take a look at the symptoms listed on this page and see if it matches yours.
http://www.officialhealth.org/pain-symptoms-charts.htm
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Pratik,
Your liver values are fine and you show no sign of jaundice. Even though the location of the pain is in that area, there is no sign that liver function is affected. A blocked duct would result in an increase in bilirubin level, but could be missed in a scan if the ducts weren't examined closely. I also think that would probably cause constant pain. Is there a possibility that gallstones were missed in the scan?
Take a look at the symptoms listed on this page and see if it matches yours.
http://www.officialhealth.org/pain-symptoms-charts.htm
Oh Andy,
I'm now more scared. It pains to me somewhere about that colon cancer mentioned region.
http://coloncancer.about.com/od/coloncancerbasics/a/colcansymptoms.htm
I've no symptoms from above link, but see the below link:
http://health.nytimes.com/health/guides/disease/colon-cancer/overview.html
It mentions some sort of stomach area ache and also that lymphoma can cause it. I likely don't have any lymphoma or that lol but I do have swollen lymph nodes. But sometimes it pains in left too.
Moreover, I've some swollen (or I feel so, but it's definitely little what swollen but the doc doesn't think it's swollen) right part near the colon I think, I'm uploading an image and highlighting the area in red box near it (and not, that guy is not me :P). I don't know if normal people has like that also.
(http://i.imgur.com/zh5p7.jpg)
I don't know if that area was like that from start or not or lol I noticed it out of the blue, unknowingly. The pain is uh...not sure if it's there or slightly adjacent to it.
I think I'll get an abdomen specialist appointment today itself.
Andy,
if it was a colon cancer issue, the sonography would have pointed it out doesn't it?
Also this doesn't indicate any appendix right as that would be pointed out too in the sonography?
I feel the stomach swollen/full from right and left (same happened last time after transfusion). Could it be a cause of excess fluids or fluids getting gathered in stomach region? I took a rest today so I'll be most likely going to Abdomen doc/specialist tomorrow.
-P.
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Pratik,
The area indicated would suggest appendicitis, and appendicitis would be affected by ingesting almost anything, and I suspect an increase in blood volume after transfusion would also occur. Please see your doctor and have him examine your appendix physically. Appendicitis can linger for some time and dissipate or burst and cause some real problems, as once happened to me. Pain in the lower right quadrant is almost always appendicitis. If your doctor suspects this, he will most likely recommend removal. Today, that is a simple procedure and you might be home the same night, as my son recently experienced. It is nothing to worry about and if it is the appendix causing this trouble, you will be very glad to get rid of this beyond useless extension. My intestinal health has improved so much since mine burst and I recovered, that I wish I had got rid of it earlier.
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Pratik,
The area indicated would suggest appendicitis, and appendicitis would be affected by ingesting almost anything, and I suspect an increase in blood volume after transfusion would also occur. Please see your doctor and have him examine your appendix physically. Appendicitis can linger for some time and dissipate or burst and cause some real problems, as once happened to me. Pain in the lower right quadrant is almost always appendicitis. If your doctor suspects this, he will most likely recommend removal. Today, that is a simple procedure and you might be home the same night, as my son recently experienced. It is nothing to worry about and if it is the appendix causing this trouble, you will be very glad to get rid of this beyond useless extension. My intestinal health has improved so much since mine burst and I recovered, that I wish I had got rid of it earlier.
Damn, I'm so scared now. :-\
But Andy,
It pains slightly at the left side in the same region almost. Appendicitis also affects left side? How the hell this happens, lol, all problems attacks me only every time...
I've appointment today evening, lets see what doc has to say...
And wouldn't sonography catch it? Also apart from stomach pain listed for appendicitis symptoms, I have nothing. I don't have nausea, vomiting, weight loss, and I can eat well too and my appetite is good as well.
Also, my mid section of stomach never pains, which I think is the most warranted area for sign of appendicitis as well?
-P.
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Damn, I'm so scared now. :-\
But Andy,
It pains slightly at the left side in the same region almost. Appendicitis also affects left side? How the hell this happens, lol, all problems attacks me only every time...
I've appointment today evening, lets see what doc has to say...
And wouldn't sonography catch it? Also apart from stomach pain listed for appendicitis symptoms, I have nothing. I don't have nausea, vomiting, weight loss, and I can eat well too and my appetite is good as well.
Also, my mid section of stomach never pains, which I think is the most warranted area for sign of appendicitis as well?
-P.
Andy,
I've been at doctor specializing in gastro and stomach operations.
I don't have appendicitis. :biggrin I too didn't felt pain near belly button so I was little scared but positive that I might not have it neither I did had other symptoms.
He tells the pain might be caused due to iron overload, which I think is not right. I'm confused and sad, there is no real medicine prescribed except these two:
1. Rabeprazole Sodium.
2. Ursodeoxycholic acid BP (300 mg).
I guess the second one is more of a liver antioxident and first one is for gastric? Could this be helpful for pain in both side?
He told me to see him up after 15 more days and he'll research for other possibilities if pain still exist and might get me done a CT scan if needed.
Your feedback will be appreciated.
-P.
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Are you taking any herbal medication? When my boys took some quite a long time ago their ALT went up to 300. They didn't have any pains though but they stopped the herbal stuff immediately and the Alt reading eventually came down after a few months.
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Emby,
No I'm not taking any herbs beside turmeric which promotes liver health. And my ALT/AST are normal now that I've stopped Exjade, so the cause may or may not be related to liver, unsure. :rolleyes
Andy,
I've been at doctor specializing in gastro and stomach operations.
I don't have appendicitis. :biggrin I too didn't felt pain near belly button so I was little scared but positive that I might not have it neither I did had other symptoms.
He tells the pain might be caused due to iron overload, which I think is not right. I'm confused and sad, there is no real medicine prescribed except these two:
1. Rabeprazole Sodium.
2. Ursodeoxycholic acid BP (300 mg).
I guess the second one is more of a liver antioxident and first one is for gastric? Could this be helpful for pain in both side?
He told me to see him up after 15 more days and he'll research for other possibilities if pain still exist and might get me done a CT scan if needed.
Your feedback will be appreciated.
-P.
Hi Andy,
Any feedback or info?
-P.
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1. Rabeprazole Sodium. is used to inhibit gastric acid secretion. It is used to treat heartburn and also used in treatment of ulcers.
2. Ursodeoxycholic acid BP is used to help dissolve gallstones.
Glad to hear there's no appendicitis. It appears that the doctor is taking the approach that either the gallbladder and/or an ulcer may be implicated. I think this is the proper approach, especially with the appendix ruled out. If this works, you should hopefully be able to use Exjade again.
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1. Rabeprazole Sodium. is used to inhibit gastric acid secretion. It is used to treat heartburn and also used in treatment of ulcers.
2. Ursodeoxycholic acid BP is used to help dissolve gallstones.
Glad to hear there's no appendicitis. It appears that the doctor is taking the approach that either the gallbladder and/or an ulcer may be implicated. I think this is the proper approach, especially with the appendix ruled out. If this works, you should hopefully be able to use Exjade again.
Thank you very much Andy.
If it's gallstones, is it a matter of caution or alarm? Would I need to operate if there is something severe? And gallstones pains on both the side? And I assume ulcer in stomach?
So let's assume that I might have gallstones, so taking Exjade now would be dangerous?
Also, after I eat little too much or drink a lot of water, the mass on both sides in the mid cross-sectional area (on left and right) increases and pains little more. What would this be? Also I'm not sure whether these medicines would affect me or not, very frustrated. I'm a guy actually who has problems and believing or buying into something too quickly, lol.
-P.
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Thank you very much Andy.
If it's gallstones, is it a matter of caution or alarm? Would I need to operate if there is something severe? And gallstones pains on both the side? And I assume ulcer in stomach?
So let's assume that I might have gallstones, so taking Exjade now would be dangerous?
Any feedback Andy?
-P.
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Gallstones are very common in thals. The medicine may help to dissolve them, and taking magnesium may help prevent their formation to some extent. I would say that since your doctor is giving you meds, there is no alarm. When there is alarm, your doctor will talk about removing it. Like the appendix, it is not a big deal to remove, if it ever comes to that point. I would say just take the meds and see if you're feeling any better. Taking Exjade should not cause problems with the gallbladder, so let's see what happens with the meds. Don't try to resume Exjade until you finish the meds and feel some relief from the pains.
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Gallstones are very common in thals. The medicine may help to dissolve them, and taking magnesium may help prevent their formation to some extent. I would say that since your doctor is giving you meds, there is no alarm. When there is alarm, your doctor will talk about removing it. Like the appendix, it is not a big deal to remove, if it ever comes to that point. I would say just take the meds and see if you're feeling any better. Taking Exjade should not cause problems with the gallbladder, so let's see what happens with the meds. Don't try to resume Exjade until you finish the meds and feel some relief from the pains.
I'm starting to feel relief I believe Andy. Hope this thing works out.
-P.
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Sad but today, I'm again feeling the burns and pains on both the side.
-P.
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Since last night,
The pain has also come over little right to my belly button. It's very minor or some discomfort, we can call though. What the heck is happening? I've my appointment on 25th but I'm planning to get it early tomorrow. Very scared about this mysterious pain.
Or maybe it's nothing but some sort of temporary muscular situation related ache. Things make you think weirdly when you've lot of problems surrounded. Or an "intolerable" dose of Kelfar can cause such thing?
-P.
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Hi Andy & everybody,
I haven't updated the status these past days.
Well, Andy, this damn pain appears to be loads of gastric problem and constipation problem, that is/was running from past 1 AND HALF month, can you imagine that? 5 days ago, before going to my stomach doc again, I decided to give my physician one more try (he's our family doc, MD, and a very good nature guy). While leaving the clinic, I bid my opinion and asked him to prescribe me any gastric/constipation related medicine, just worth hitting my shot at it.
He prescribed "Unienzyme" and I've been taking two of those daily. I've also been taking some Ayurvedic Churnas (powders) regarding constipation/gastric issue.
Now, this all started (the pain) on 2nd December, first with lower left side, then right and then middle (it was like burning sensation).
I don't know who the real culprit is was, whether IP6 (I'm thinking on this because you mentioned somewhere it might have digestion issues, but can it run THIS long? - I started with 2 each day on 26th November but discontinued since mid December) OR Wood Apple. I was eating 3-4 wood apples a day since mid November or so, some of those might even have had fungus or any bacteria which I could not see (I used to throw spoiled ones, which were majority). But I discontinued them too once you asked me to stop consuming them.
Now 5 days after taking this medicine along with Ayurvedic Churna, the pain is subsiding and I'm feeling well. I can finally feel the gastric movement of gas within my whole stomach. Not to mention the increase in burps and the irregular stool, which probably started after taking this med as it started doing it's effect.
I'm relieved like 60% but still not completely free from whole this gas stuff.
Am I on the right path? Because I think so.
Any suggestions will be good.
-P.
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Pratik,
IP6 washes out of your body very quickly. There is no possibility that this ongoing pain is related to IP6. There is no reason wood apple would be involved either. It's actually supposed to be good for the stomach.
Are you eating anything like yogurt or buttermilk with live cultures in it? This would be beneficial. Does the pain lessen if you take antacids? If these don't help, it may be the gastric issue is caused by the liver or gallbladder. The best thing you can do is get your iron load down, as this will improve organ function.
I think the med the doc gave is working, and that you should make sure you consume something with live cultures to repopulate the stomach bacteria.
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Pratik,
IP6 washes out of your body very quickly. There is no possibility that this ongoing pain is related to IP6. There is no reason wood apple would be involved either. It's actually supposed to be good for the stomach.
Are you eating anything like yogurt or buttermilk with live cultures in it? This would be beneficial. Does the pain lessen if you take antacids? If these don't help, it may be the gastric issue is caused by the liver or gallbladder. The best thing you can do is get your iron load down, as this will improve organ function.
I think the med the doc gave is working, and that you should make sure you consume something with live cultures to repopulate the stomach bacteria.
I'm improving daily, I'm not taking any antacids or such. The burning pain is actually no more (the one that I used to feel in the middle cross-section on both sides). I cannot say it a pain now or don't know how to phrase, discomfort I guess? But I'm a lot happy then before. I'm not taking any pain killers now and I feel the gas is slowly reducing day-by-day. Yes it's taking time but I hope it would eventually level out.
Well, I'm not a much buttermilk fan, although my dad and mom suggests it a lot of time, especially after we discovered that this pain is due to gas and all stuff, and I drank on Sunday but no more after it. That won't be a problem, no worries, I'll start consuming it daily for now. Thanks.
Consuming what with live cultures (I assume it means buttermilk and all that or some spices mixed in buttermilk?) may help?
And oh, I've also stopped Kelfar since past 4-5 days because I felt pain in my leg joints and little on back, still have little bit. Don't know, gas trouble may also cause join pains. So I was wondering whether if I could start Exjade for now? (I'd take 400mg initially - 1/4th of my dose, if you advise). I think Exjade won't have caused issues to begin with, this all may be due to gas trouble only - sheesh!
Oh and I just got my blood work done on Saturday as my transfusion was scheduled on Sunday and the readings were:
SGPT - 38
SGOT - 52
Creatine: 0.3
All other readings were normal values. So should I be okay to start Exjade again now with low dose? Or would it add to constipation trouble?
Thank you very much, Andy.
-P.
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I would agree that you should begin Exjade again with a low dose. You need to be chelating.
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Hi Guys,
Today is second day of restarting Asunra/Exjade with 1/4th of my dose (400mg). I'm splitting that too in half-half tablet part.
-P.
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Andy,
I can now definitely confirm IP6 is the real culprit of my stomach constipation/pain issues. I noticed the same pain immediately after 30 minutes of taking it.
I was thinking to change the brand, maybe. I'm currently taking the one by Dr Shamshuddin, IP6 Gold.
I took it with ample amount of water and 45 minutes before launch and 2-3 hours after I eat any gluten (milk tea) product.
Are you taking the one from Puritan brand? How is it? Have you felt any such issues anytime?
Thank you.
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Hello Andy,
My daughter is on 5 yrs now and is on 40mg/kg asunra for past 3+yrs. However, she has had repeated instances of gastric ulcers in her upper duodenum, 3rd confirmed instance now. Wanted to understand that if you have seen any case where this has been recurrent issue in chelating patients and possible suggestions on how this may be handled.
Ulcers had completely healed with continuous administration of sucralfate syrup (2-3 months) and 1 month course of proton pump inhibitors.
PS:
1. LFT and Creatinine levels have been pretty much below upper side of normal levels or at times slightly elevated, never had be cause of worry.
2. Asunra is given in 2 split doses in water, after food.
warm regards,
R
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catchR,
I am sorry to hear of this side effect. Is Jadenu available to you? Approval in Canada is taking an exceptionally long time, hopefully you have it where you are.
Sharmin
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40mg/kg for 5 yr old is a huge dose.
The same kinda thing is happening with a local thal known to me.
Have you tried with low dose?
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Thank you for catching that Dharmesh, missed that your child is taking 40mg/kg daily. That is a very large dose for anyone - especially for a child. She may be at risk for other side effects as well. She should on a smaller dose. perhaps 30mg/kg - depending on her iron levels.
It is also beneficial to split the dose so that she receives half in the morning and half in the evening.
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Thanks Sharmin, Hanuman Aashrit for your replies!
Initially, we started off at 20mg/kg. However, her serum ferritin climbed close to 4000. That's when we reviewed the dosage and we slowly increased 30 and then to 40 mg (per kg). Over past year her ferritin hovers between 300 to 800.
Her current dose is 35 mg/kg, split in 2 doses (after each meal).
Thanks,
R
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For a young child that is an ideal ferritin level. When exjade is started ferritin levels go up for several months - this is an indication that the exjade is actually working. Exjade removes iron from organs and dispels it into the plasma - showing higher ferritin levels. This does not mean that more exjade is required, it means that exjade is doing its job and soon the ferritin levels will drop.
Sounds like you are on a good plan :)
Sharmin
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thanks Sharmin!!
any suggestions on to handle duodenal Ulcer issues?
regards,
R
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Milk thistle may be of some benefit for the ulcer. Since it does have benefit keeping liver values in range when taking Exjade, I would advise milk thistle.
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At 300-900 fe the dose should not be exceeding 20mg/kg
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thanks Andy for your reply! will try introducing milk thistle...any recommendation on dosage for 5yr old?
Just got LFT values and they have come back elevated both SGOT & SGPT 100 U/L
Hanuman Aashrit,
any reason for keeping asunra at maintenance dose of 20mg/kg?? I believe 100-200 mg is the new target for thals.
best regards,
R
PS: I sometimes wonder how to manage the all the supplements that need to be given day-in day-out. :huh
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I would suggest 200-400 mg milk thistle daily at that age. This will help with the liver function scores, as will hydration and having tests done early in the day.
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thanks Andy, will start lil H on Milk thistle.
best regards,
R
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CatchR,
My daughter also experiences acid reflux with Exjade (and now on Jadenu). She takes Zantac in the morning and evening, 150mg each time to keep the acid reflux under control and we make sure she takes the medicine with food. Also, when the ferritin reaches 300 we lower the exjade/jadenu dose (take every day but lower amount) and then again bump it up a bit when it passes 500...since her ferritin is now low for many years, she is on a very low dose...infact, her dose did not change from last 3 to 4 years even though she grew.
In my opnion, 40mg/kg is very high dose when ferritin level is low. It should be close to 15 or 20mg/kg of exjade to maintain ferritin between 300 to 500. what I have seen is there is no absolute dose value for exjade/jadenu, it should be reduced or increased based on ferritin levels over a period of time.