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Just diagnosed with idiopathic thrombocytopenia purpura itp

Posted By Emily (Auckland, New Zealand) on 09/02/2014

Hi, I'm Emily, I was diagnosed with Lupus about 5 years ago and Idiopathic Thrombocytopenia Purpura (ITP) developed 3 years ago. To date, I have been resistant to Chemotherapy, Steroids, IVIG, Platelets and a Splenectomy. Being in NZ we do have limitations to the type of treatments available so I am now looking into natural therapies. My platelets are currently 4, and have been less than 10 for the past 4 months. I don't want to keep filling my body with these horrible drugs without result. I'm 28 now and do not want to live the rest of my life on pharmaceutical drugs. I'm currently taking Eltrombopag which is proving to be ineffective whist making me fatigued to the point I can't function and I have terrible bone aches.

Any natural or other therapies that anyone knows of I would love to hear about. At this point I have no other options. Thanks!

Replied by Nanowriter (Hotspot, Texas) on 09/03/2014

Emily, look into vitamin d supplementation. A quick search showed research linking both your diseases to vit d deficiency.

Replied by Mama to Many (Tennessee) on 09/03/2014

Dear Emily,

I was first diagnosed with ITP when I was your age. I had lots of tests, including a bone marrow biopsy. I never did get any solutions from the medical community. There are several stories here at Earth Clinic about things people have tried and found helpful. You might read them and see what you would have available to try. I do think there are natural solutions, there is just not a lot of information.

https://www.earthclinic.com/cures/ITP.html#rn

ITP and Lupus are autoimmune. There is a lengthy discussion on the ITP pages about a viral link to ITP and autoimmune diseases. If that is the case, things like Coconut Oil, Vitamin C, Colloildal silver, and other anti-virals may be the key to both of your conditions.

Let us know how you are doing. I hope you will be much improved soon.

~Mama to Many~

Replied by Art (California, US) on 09/03/2014

According to the following link, melatonin may offer a viable option for ITP. Melatonin has a very good safety profile, is not expensive and has minimal negative side effects.

http://www.ncbi.nlm.nih.gov/pubmed/12424512

Art

Replied by Samuel (Naples, Italy) on 07/15/2016

Hello, just wondering how you are getting on now? And if you've had any luck with any medicines?

My wife is 29 and has had itp since she was 14. She used cortisone for 11 years which almost killed her and ruined her bones. For the last 5 years shes used Nplate to great success with no side effects. We are living in naples italy but considering moving back to Auckland New Zealand, my home town, but are unsure what type of care she'd get there. I have searched and emailed for months over the Internet but can't get much of an answer. Wondering how you're getting on now and what treatment/medicine you have.

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