Thalassemia Patients and Friends
Discussion Forums => Diet, Nutrition and Supplements => Topic started by: andyross on March 30, 2010, 09:30:50 AM
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Hi everybody,
I would like to share my experience about a mixed drug therapy I'm having for five years. I had transfusion therapy before from 2000 to 2005 (I'm intermediate).
My therapy is:
in the morning vitamin E 300mg/day, folic acid 7,5mg/day and hydroxyurea 500mg/day (my weight is 75kg);
before lunch and before dinner magnesium pidolate 2,250g/day x2;
after lunch and after dinner l-carnitine 1g/day x2.
I became transfusion independent soon (hg from 8 to 11). I have to say that I have some gastric disconforts from this therapy. My ferritin is still 750 but I started from 1500 (mean value when I had transfusion+L1).
I don't know how long I will be able to continue this therapy and if it's better to reduce the doses (in particular I'm talking about "e vitamin" and "magnesium"). And I don't know if I should follow my doctor that says to take iron chelators again to obtain lower ferritin level.
Anyone is taking the same as me?
I would like to know if someone has heard concerns about these doses and if it could be dangerous to continue too much with this drug mix.
Thank you in advance.
andyross
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We should wait for help. I am not really into this. Welcome on board btw!
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Hi Andy,
If you are taking natural vitamin E, a dose of 300 mg (about 450 IU) daily is not high at all and shouldn't bother your stomach. I know thals taking more than double that daily, and their body weight is much lower than yours. I take 400 IU daily right after breakfast and have never had any problem from it. Make sure the vitamin E is natural. It should be D-alpha tocopherol, not DL, which is synthetic and of questionable safety in doses of more than 100 IU daily. The magnesium dose seems a bit high and it should be balanced with calcium, which may also soothe your stomach a bit (most antacids use calcium for this purpose). Your hydroxyurea dose isn't high and is giving excellent results. Are you also taking vitamin D? This is necessary for proper absorption and regulation of calcium and magnesium. Keep in mind that the gastric discomfort may also be related to the hydroxyurea, as this is one side effect of the drug. Eating smaller more frequent meals is one way suggested to lessen this.
I would advise that you be hesitant about changing much of your program. The magnesium can probably be lowered, but you are getting such good results, that it would be hard to argue against continuing. In fact, you respond so well that you would probably also see some results from wheatgrass in some form.
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Thank you Dori and thank you Andy for your quick reply.
I would like to give more information about the product I'm taking.
I don't know if my E vitamin is natural (the commercial name is "Ephynal 300" and I can read it's alfa-tocoferolo acetato).
Magnesium pidolate is "MAG2" in sachet.
Folic acid is "Lederfolin".
L-carnitina is "Carnitene" in tablets.
Just yesterday I went to gastroenterologist because my stomach problems and he gave me Pantorc 40mg (pantoprazolo) in order to continue my thalassemia therapy and to feel better.
I don't take anything else a supplement.
My blood pressure is now 150/80 I don't know if it's for too much vitamin e (or for the wrong form) or if it's the big stress I'm living in this period for my job.
Anyway I also had bronchitis in the past weeks and I took antibiotics and had to interrupt my blood cure for two weeks.
Could you give suggestion about the correct type of vitamin e, please?
I'm sending you all this link about the therapy I'm having:
http://www3.interscience.wiley.com/journal/122615560/abstract
Bye
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Andy,
Doctors like to use vitamins manufactured by pharmaceutical companies. In my long experience using supplements, especially vitamin E, I have found that the vitamins manufactured by reputable nutritional vitamin and supplement companies to be of better quality than what the big pharma companies offer. With vitamin E, I prefer what is called mixed tocopherols. This is a mix of several tocopherols, just as is found in real foods, rather than isolating or synthesizing one tocopherol. I also find that these natural supplements are much easier on the digestive system. I have taken natural vitamin E daily for 35 years and have never had any gastric issues from vitamin E. The following link will show you an example of what to look for in vitamin E. Note the different tocopherols in the supplement facts. [Vitamin E (as d-Alpha Tocopherol plus d-Beta, d-Gamma, d-Delta Tocopherols)].
http://www.puritan.com/e-vitamins-103/natural-e-400-iu-mixed-tocopherols-000460?NewPage=1
Your dose of Ephynal 300 is equal to 600 IU. Vitamin E is very important, so I would suggest looking for a brand that does not cause any gastric problems. I would not recommend that any thal not take vitamin E. It's value is too high to ignore. Vitamin E will not raise your blood pressure. It may have the opposite effect, and it is often recommended as one method to lower blood pressure.
I am reprinting the article from the link you sent, as I want to make sure others see these results. Adding a high dose of magnesium seems to have a positive effect when used with hydroxyurea. This makes much sense, as I have often explained in posts that magnesium is an essential nutrient needed for building and maintaining the health of red blood cells and the entire circulatory system.
http://www3.interscience.wiley.com/journal/122615560/abstract
Effect of combination therapy of hydroxyurea with l-carnitine and magnesium chloride on hematologic parameters and cardiac function of patients with β-thalassemia intermedia
Mehran Karimi 1 , Faranak Mohammadi 1 , Farzane Behmanesh 1 , Soleiman M. Samani 2 , Mohammad Borzouee 3 , Hamid Amoozgar 3 , Sezaneh Haghpanah 1
1 Hematology Research Center, Nemazee Hospital ; 2 Pharmacology Department ; 3 Division of Cardiology, Pediatrics Department, Shiraz University of Medical Sciences, Shiraz, Iran
Correspondence to Mehran Karimi, MD, Professor of pediatric-hematology, Hematology Research Center, Nemazee Hospital, Shiraz University of Medical Sciences, Shiraz, Iran. Tel: +98 (711) 647 3239; Fax: +98 (711) 647 3239; e-mail: Karimim@sums.ac.ir
Copyright © 2010 John Wiley & Sons A/S
KEYWORDS
hydroxyurea • magnesium chloride • l-carnitine • β-thalassemia intermedia
ABSTRACT
Background: l-Carnitine and magnesium have antioxidant properties. They have the potential to stimulate production of fetal hemoglobin and stabilize the RBC membrane, respectively. Several studies have also shown the beneficial effects of hydroxyurea in thalassemic patients. We assessed the effect of combination therapy of hydroxyurea with l-carnitine and magnesium chloride on hematologic parameters and cardiac function of patients with β-thalassemia intermedia.
Methods: One-hundred-and-twenty patients with thalassemia intermedia (range, 4–35 yr; mean, 19 ± 6.4 yr) who had no need for blood transfusion or requirement for blood transfusion with an interval of >6 months were randomly selected. All patients had been on hydroxyurea for >6 months. They were randomly divided into four groups: group A (hydroxyurea alone); group B (hydroxyurea and l-carnitine); group C (hydroxyurea and magnesium chloride); and group D (hydroxyurea, l-carnitine and magnesium chloride).
Results: In groups B, C, and D, mean Hb and hematocrit increased during 6-month treatment (P < 0.001). Echocardiographic studies revealed a significant decrease in left ventricular end-diastolic diameter in group B (P = 0.032), increase in pulmonary acceleration time in group C (P = 0.012), and increase in left ventricular ejection fraction in groups C and D (P < 0.000 and 0.006, respectively).
Conclusion: Combination of hydroxyurea with l-carnitine or magnesium could be more effective in improving hematologic parameters and cardiac status in patients with β-thalassemia intermedia than hydroxyurea alone.
Accepted for publication 28 September 2009
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Hi Andyross and welcome to the site
Thanks for sharing your expierence and i am really very interested in how a very small dose of hydroxyurea can be effective. My son too is on hydroxyurea. He is on a 15mg / kilo dose.
He is also taking vitamin E and L-carnitine.
I believe that the stomach discomfort is from the hydroxy, we had similar expierence but we shifted the hydroxy right before bed time and had no problem later on
manal
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Manal,
Pay special attention to the magnesium dosage involved. This seems very significant in terms of result.
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I have found this link about the therapy I'm having.
It's a little long text but very interesting I guess.
http://209.85.129.132/search?q=cache:vtw_Ue8WGx4J:thudb.com/resolve/doi%3FDOI%3D10.1111/j.1600-0609.2009.01356.x+carnitine+magnesium+hydroxyurea&cd=10&hl=it&ct=clnk&gl=it
bye
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Yes Andy, i am trying to find a brand that would give him an appropriate dose. I guess the one in osteocare is not enough, what do you think??? Ahmad is 22.5 kilos
manal
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Manal,
Check this one from Osteocare. 4 teaspoons daily would provide another 300 mg of magnesium. This is a well thought out mix of nutrients in this supplement. http://www.vitabiotics.com/osteocare/liquid_formula.aspx
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Wouldn't it be nice if these companies that we mention as having quality supplements, and whose products we basically plug here, gave back a little. It would be great to see some donations to thal centers around the world. A relatively small amount of Western dollars goes a long way in the poorer nations.
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Hi all,
I would like to seek advice from those who know more than me about iron chelation.
In particular I've just had T2* results and, despite my ferritin is 600, they found a moderate level of iron in my liver.
Now the doctors say to start chelation therapy maybe with little dose Exjade or with L-1 that I used when I did transfusions in the past.
As I can see, many of you use wheatgrass, ip6 and green tea extract to reduce iron in the body but I don't know if they are enough without "official" iron chelators.
I would like to have your advice please.
Thanks a lot.
Andy
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Andy,
Are you transfusing? If not, IP6 and green tea extract may be sufficient to remove your iron load. If you are taking occasional transfusions, then it can help but most likely a chelation drug would also be required.
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Hi Andy,
I'm not transfusing; I did from 2000 to 2005 taking L1. So I'm trying Green Tea Extract plus IP6 tablet but I'm very interested in Wheatgrass properties as well.
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I would suggest all 3. Wheatgrass has been shown to cause an increase in Hb level in some thals. This seems to hinge on whether a patient has an ability to produce some fetal hemoglobin. It also has other positive properties affecting the immune system. Try IP6 and green tea extract for at least 6 months and see if they can move the ferritin level down. If not, then you may have some iron loading, which is common in intermedias, and you may need to try a chelation drug. In your case, I would try the natural methods first.
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I'm currently considering to try the natural therapy to reduce iron overload. I'll let you know what I'm taking and the results!
Thank you for now.
Andy
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Sorry Andy,
I need your help about IP6. I found "Source Naturals" IP6 800mg. Do you think it's good or do you suggest to look for "Jarrow Formulas" 500mg?
And what about the dosage?
Many thanks.
Andy
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I just wanted to mention something I recently found on the natural vitamin E subject (please note that I have not tried this product myself yet, it was just recommended to me by a friend), it is Rice Bran Solubles (the one he recommended was through a small company called pureplanet.com ran by a naturalist and whole/organic food enthusiast). I think that all of their products are completely organic, no GMO's, no additives, etc. It might be worth a try - if you visit the site the rice bran solubles are on the second page under products (there are only two pages total and its listed as about $25 USD, the site offers more info like nutrional content, etc.)
Best wishes!
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Andy,
Either product will work. I find Jarrow to be a bit more expensive. I would suggest taking in the range of 1000-4000 mg daily. Do not take at the same time as milk.
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Hi Andy,
I would like to talk again about magnesium pidolate dose I'm taking because you said that in your opinion it was a little bit high.
I am taking 2 sachets a day (one in the morning and one in the afternoon) corresponding to magnesium pidolate 2.250g (equal to 184mg of Mg++ ion).
In one of your post you advice to take Magnesium from 500mg to 1000mg and that's probably why you think I'm taking too much.
But my question is: the dose of Magnesium I'm taking is 2.250g x2 a day or 184mg x2 a day.
I hope my question is clear to you.
Thanks in advance.
Andy
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The dose you take would be considered as the higher amount, or the amount advertised on the product. Each form of magnesium has a different percentage of elemental magnesium, and then for each there are varying percentages of bio-availability.
The doses I advise tend to be conservative, as it is general and it is intended to address basic needs. The doses a patient uses may be higher, especially for certain nutrients. Your dose of magnesium is within acceptable ranges and makes sense in the context of your treatment program.
How is your chelation going?
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Hi Andy,
thanks for your reply. I was asking about MAG2 dosage because it seems I'm having some problems when I take all the sachet but I don't know if it depends on citric acid in it that is not tolerated by my poor stomach suffering a lot in this period.
So in order not to stop MAG2 I was wondering if I could take less or change the sachet with the bottle (no citric acid in it).
I don't really understand if it's a problem with MAG itself or the eccipients. And I realized in the past how important was to take MAG for my health!
Or maybe I'm taking too small protection for my stomach (Pantorc 20mg a day).
It's not a good period for me and for my stomach too...........it seems it's not working at all.......the digestion is too slow.......I felt acid in the mouth..........I lost appetite.......and I lost weight too........I feel my liver a little bit heavy..........
About the chelation........I tried desferal just not to put another medicine on my stomach but since I' not doing transfusion I felt bad with the siyntoms I read in many post here after 4 or five somministration and I stopped (agreed with the doctor).
Now we decided that's not my priority since my ferritin is about 500.
My priority is the stomach and to restart the full dosage of my good working cure.
I don't know if digestive problems could come from the 2cm stone in the gallbladder or just from the stomach or from the fatty and tired liver.
Unfortunately I didn't ever drank tea during meals but I'm trying now.
And I didn't tried yet any natural chelators (Green tea extract, IP6, Wheatgrass) but I am very anxiuos to try as soon is possible.
Thanks a lot again.
Andy
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I think you should cut the dose in half and see if your system tolerates it better. If it doesn't, you might consider trying a different form of magnesium. One thing I learned while reading about the different forms of magnesium is that in the end, it makes little difference, even with organic versus inorganic forms. They are all absorbed well enough to be of value.
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Now I'm taking MAG2 in bottle (without citric acid) and it seems that my system (stomach in particular) tolerates it better. I'm continuing with Pantorc 20mg in the morning to protect my stomach. And finally I'm having tea all the day specially during meals. Do you suggest the black or the green one? With or without sugar?
Tomorrow I will have blood analysis to check the whole situation.
I continue to have difficult digestion e I feel my liver a little tired and heavy.
So let's see what's wrong. Pantorc eliminates the fire in my stomach but doesn't ameliorate digestion.
As soon as possible I would like to start with supplements you told me (Wheatgrass, Green tea extract, IP6).
I'm sure they could give me more help.
In fact the point is that the cure I've been doing for so long works fine enough when everything else is ok, for instance stomach, liver, no virus but when something goes wrong with flu, gastritis, etc my situation goes down and I don't know what to do and what to take since I'm already taking many medicines and I'm afraid to take strong therapy like antibiotics for instance.
So I hope the natural supplements above could help me about that!
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I would like to give you some news about the therapy I'm having for many years (low dose hydroxyurea plus magnesium and carnitine for thalassemia intermedia).
My last blood tests were 11 hgb with 0.01 percentage of fetal hgb.
I haven't checked fetal hgb for long time but I can remember my starting level was significantly higher than now.
First I was surprised enough because I have always known that my therapy was about fetal globin reactivation but yesterday I found on the net this document I link for you below.
http://www.ncbi.nlm.nih.gov/pubmed/7646994
In this trial they discover another potential effect of hydroxyurea on adult beta globin.
I would like to ask Andy what he thinks about.
Thanks.
Andy
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Andy,
Hydroxyurea has two main actions with thal intermedia patients. It can activate the gamma globin gene in some patients, but the second action of suppressing ineffective erythropoiesis is possible for all patients and the importance of this is often overlooked. There is the obvious benefit of a reduction of bone expansion by lowered bone marrow activity, and there is the important effect of not having so many bad red blood cells produced. These bad RBC's destroy good RBC's and their absence can allow more good RBC's to survive. This would explain the increase in Hb without an increase in HbF.
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Thanks Andy for your quick and clear reply.
I think the cure I've been doing for many years is still working and maybe I don't need to interrupt or change it.
Apart a moderate iron load in liver that I should decide to manage soon, my only concern is about a low platelets count (between 100000 and 120000) I'm having in the last three years. I don't understand if it's Hydroxy or L-carnitine or more probabily their combination.
Anyway I'm monitoring close this count.
Thanks again.
Andy
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Hi Andy I've just had my blood test results and I would like to ask you somenthing about them.
I post only low/high values.
WBC 4,07 (N.V. 5,00 - 10,00)
PLT 121 (N.V. 130 - 400)
Fibrinogen 147 (N.V. 150 - 400)
Creatinine 0,67 (N.V. 0,80 - 1,30)
Total cholesterol 103 (N.V. 140 - 240)
Folic acid 51,7 (N.V. 3 - 17)
Ferritin 530 (N.V. 20 - 320)
Parathyroid 75 (N.V. 12 - 72)
B12 vitamin 249 (N.V. 179 - 1162)
D vitamin 16,3 (N.V. 30 - 100)
I'm keeping my drug therapy and everything else is going good (for instance Hb is 10,9) but I think it's time to make some changes.
Since I've been taking 7,5mg folic acid for many years I'm wondering if I should stop or reduce.
Maybe I should consider B12 and D vitamin integrator.
What do you suggest?
Thanks a lot.
Andy
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Andy,
I suggest attacking the low vitamin D. Your folate is fine so reducing the dose is not a problem. My experience with D is I saw no change until I went to 5000 IU daily and I am currently taking 10,000 IU daily. I also feel that it is difficult to analyze other deficiencies when the D is low, as D affects the absorption of so many nutrients. You also might want to take sublingual B-12 tablets a couple times a day. I also take my D as liquid so I can swish it under my tongue before swallowing.