my drug therapy for thalassemia intermedia

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

We should wait for help. I am not really into this. Welcome on board btw!

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.

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

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

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

Manal,

Pay special attention to the magnesium dosage involved. This seems very significant in terms of result.

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

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

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

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.

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

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.

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.

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.