Vitamin and Mineral Supplementation in Thalassemia

I just started with my Zometa treatment. I am one of the few (ofcourse) who get full flu like symptoms as fever and pain. Every day I move, bend and stretch better. I will receive this transfusiin once a year. The leaflet says these side effects only occur with the first dose. I am 3 days post infusion. The pain was / is very nasty. Now I will continue with diet and some supplements. Is biking also good fod your bones? I find rope jumping too difficult.

By the way I have a check up by the denist next week. Is that Okay?

And how many take Zometa? Anyone else here who is doing this treatment??

Biking is very good for your bones and a low impact exercise.

Dentist is okay. Tell him you're taking the bone drug, as one side effect is that it can harm the jaw, so the dentist should be aware to look for any signs of changes in your jaw over time.

Hi Dori,

Just sharing a thought here. Like you Little Miss A also find it difficult to jump rope. The idea is not to actually jump over the rope, you can simply jump up and down without rope. It is simply a method to put pressure on your bones specially lower lumber bones supporting your back.

Little Miss A has been jumping up and down for last two years (300 times a day) and her results are amazing.

Hope this helps.

Dori , it took me about 10 days to recover from flu like symptoms but after that I didn't have to take any medicine for lower back pain for about half a year...
Also sports was kind of easy going...

Dori , it took me about 10 days to recover from flu like symptoms but after that I didn't have to take any medicine for lower back pain for about half a year...
Also sports was kind of easy going...

Great to hear Nomad. Unfortunately this is not my expierence. We now ruled everythimg bad out and adjusted my treatment plan. It is probable not Zometa as it started alreasy before that.

I will try to just simple jump up and down as I only read your message now.

Dori , do you take vitamin K along with vitamin D? It's a good booster for bone metabolism.

Dori , do you take vitamin K along with vitamin D? It's a good booster for bone metabolism.

No, I do not. Vot K is in the cheese I eat dialy. What is a natural source of vit E? How much is recommend?

Supplements with both vitamin D and vitamin K are easy to find. I suggest a supplement for vitamin E. It's found in many foods, but not in the quantity needed when fighting oxidation. I suggest 400 Iu daily. The product will be labeled d-alpha tocopherol. not dl, as dl is the synthetic form which should not be used.

How much of Vit B6 will be enough per day? Will too much of Vit B6 cause nerve damage in beta thal patients?

Hi  jsbhavsar

If you are not having deficiency in vitamin B6, the amount found in a good multivitamin will be enough for you.
Generally speaking you shouldn't be deficient or exceeding the normal levels in any vitamin or mineral as each case has its drawbacks
Manal

Hello Andy sir,
                My son Sumit Pawar 9 years old from India under the treatment of Dr.Vijay Ramanan Pune since 2.6 years.He is Thallassemia Intermedia.Dr.Ramanan prescribed some medicines as follows.

1) Wheat grass powder(Globsure powder)
2) Riboria 500mg(Hydroxyurea)
3) Thalide 50mg(Thaladomide)
4) Loprin 75 mg
5)C.C2B Plus
6)C.Gluder
7)Tab.  Calceome

He never required blood transfusion,his Hb remains between 10.5 - 11.5 in every month and overall health is good

My question is, there is any side effect above medicines for long time consuption on kidney and other organs in the body Please repply, Thank you,

All medicines have some side effects, but the lower doses used in this therapy have not shown any long term serious side effects in users. From the reports I have received about this therapy, I would say that any serious side effects are observed within the first couple months and if this therapy does not suit that patient, it is discontinued. Your child is long past this stage. Keep in mind that the transfusion and chelation method of treatment also has side effects, and the side effects of chelation drugs can even be dangerous to some patients, so one needs to weigh this against the side effects of the therapy.

Thank you very much sir, for your valuable suggestions

Hi Andy,

Thanks so much for the information you provided about the list of Vitamin and Mineral Supplementation for Thalassemia patients! I was already taking some of these, but am now taking closer to the full list. It has made a big difference, finally I can now get through a hectic work day without feeling tired or lethargic as a result

I have also started to use organic Wheatgrass powder in a juice that I make for myself and drink daily, which is helpful as well.

PS - I am so grateful that this website exists! It's so good to have a community of Thal patients who are going through similar symptoms to me, where we can share knowledge and support one another Keep up the great work!

Cheers, Dalia

Dalia,
I am happy the recommendations are helping. It's tough to get doctors to pay attention to the additional nutritional needs caused by thalassemia, so much of my focus all along has been to help provide the missing information. much of it gathered from the experiences of people like yourself.