Treatment Options
Last night and today I have been looking through a lot of ITP websites, researching treatment options and getting depressed and freaked out. It just hit me suddenly how serious this really is, that NO CURE exists and that the treatments can be as bad as the disease.
Treatments (in alphabetical order)
Anti-D: Used to achieve a temporary elevation of the platelet count. It has the advantage over IVIg of being administered via injection rather than an IV infusion.
Chemotherapy: Various chemotherapy drugs have been used as an almost last resort for chronic ITP patients. Vincristine and Cytoxan (cyclophosphamide) are the ones that are most frequently prescribed. Each has a slightly different profile of side effects. They include hair loss, decreased immunity, and damage to the central and peripheral nervous systems.
Danazol (danocrine): This drug is also used to treat endometriosis. It is a synthetic androgen (male sex hormone) It disrupts the action of the pituitary gland and reduces estrogen, halts menses, and promotes the growth of facial hair and acne.
Decadron (dexamethasone): A steroid, similar to prednisone in its effects on the body. It is often given in pulses, doses of a shorter duration that are repeated. Long term use can result in altered mood and personality, cataracts, glaucoma, hypertension, arrhythmias, peptic ulcers, pancreatitus, osteoporosis, and increased susceptibility to infections.
Imuran (azathioprine): An anti-arthritic and immunosuppressive drug. It is also used to prevent the rejection of transplanted organs and in the treatment of rheumatoid arthritis and lupus. It can reduce the level of white blood cells, cause liver damage and increase the risk of malignancy.
IVIg: This is an intravenous infusion of immunoglobulin, a type of antibody. The antibodies attach to the receptors in the spleen, sparing the removal of antibody coated platelets. This treatment is a temporary measure and is not expected to result in a sustained elevated platelet count, although in some rare cases this does happen. The side effects include allergic reactions and heart palpitations.
Prednisone: This steroid is often used in the treatment of allergies and other autoimmune diseases. For ITP, typically the dose is initially quite high then gradually tapered. Sometimes the platelets remain elevated after the prednisone is tapered. In most cases the platelet count recedes as the prednisone is reduced. The side effects can be uncomfortable and grow in severity if the treatment is continued for a long time. They often include weight gain, mood changes, elevated blood pressure, insomnia, blood sugar changes, calcium loss, muscle wasting, and increased susceptibility to infections.
Rituxan: This is a monoclonal antibody approved by the FDA to treat lymphoma. There has been some initial success in its use to treat ITP. Clinical studies are in progress.
Sandimmune (cyclosporine): Helps prevent the organ rejection in kidney, liver, and heart transplants by inhibiting some white blood cells and their growth factors. It can cause excessive hair growth, liver toxicity, a low white blood cell count, and lymphoma.
Splenectomy: This is a surgical procedure where the spleen is removed. The spleen acts like a giant lymph node. It plays a part in maintaining a healthy immune system and cleans the blood of foreign matter. It helps Theoretically, if the spleen is removed, the platelets will stay. However a splenectomy does not always result in a sustained elevated platelet count. The liver may take over the spleens function and eliminate the platelets that have antibodies bound to them.
After a splenectomy, the patients’ immune system is compromised. Immunizations are given before the operation and periodically after. Some hematologists suggest the patient take antibiotics as a preventative measure. Others do not.
Alternative Medicine
I also have been reading up on Eastern Medicine(Non-pharmaceutical, non-surgical treatments). The 2 most common to treat ITP I keep coming across are:
1. Ayurvedic Medicine combines natural therapies with a highly personalized, holistic approach to the treatment of disease. It treats the whole person, addressing body, mind, and spirit. The Ayurvedic practitioner typically does a pulse diagnosis and categorizes the person’s condition based on the unique Ayurvedic system. The practitioner then recommends herbs, bodywork, cleansing treatments, lifestyle changes, diet suggestions, meditation, music therapy, etc. to bring balance back to the body.
This might be interesting to try but its very costly, not covered by insurance (even if i had any) and Ayurvedic practitioners are not easy to find.
2. The Macrobiotic diet is recommended quite frequently. The macrobiotic diet is high in natural, unrefined foods, low in saturated fats, and rich in essential fats. It’s a very strict and limited regime. No alcohol (except Mirin rice wine) coffee, sugar, spices, meat, eggs, cheese. Basically consisting of 50% whole grains; 25% seasonal vegetable; 10%, soy, fish, legumes; 5% fruits, nuts, seeds and drink. The last 10%, I don’t know? The person who wrote this up on wisegeek.com is either really bad at math or its meant to be “free choice” from a list of use sparingly foods/condiments/seasoning.
So far I’ve only found personal stories and antidotal evidence for people with ITP going off medicine and into remission through alternative medicine. But there is lot of clinical trials I have read showing it has cured people of multiple types of cancer and other autoimmune illness.
Switching to a macrobiotic diet is not going to be an easy thing, but its may be a lot better than the pharmaceutical and surgical alternatives because they offer slim chance of remission and have so many detrimental side effects. So I’m going to research the macrobiotic diet a little more and likely give it a try.
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