ITP a Nightmare :'D

[Esmiralda]

Hi my name is Esmiralda, 26 years old and I'm from India and I developed ITP 7 months back. The first month my platelets was 15k n I was given 4 units of platelets and then I was under wysolone where my platelets kept fluctuating up n down and then after 2 months I did a bone marrow test n it shows that my bone marrow produces alot of platelets but the antibodies in the spleen destroys it. I was under wysolone n danazol for few months n later doctor stopped wysolone and I was under Azathioprine and danazol but it's been 7 months so doctor is suggesting in either Revolade which is so costly in India it's gonna cost 60k per month n we hav no insurance cover for tablets here in India or he's asking me to remove my spleen. I'm scared n confused. Can u give me any suggestions 

[Padram]

Hi Esmiralda, where in India are you from? I am from India. Same condition as yours. But no spleen removal. It does not help. Was diagnosed with ITP 2 years back. After a year of steroids, my platelet kept dropping to below 20 k, I switched to homeopathy. Did well for 6 months, but tested positive for RA. When I started Homeo medicine for RA, my platelet began to fall. So stopped meds for RA. I now take papaya leaf tablet, Caripill twice a day. My platelet is around 75 k for the past 3 months. I don't take any medicine for Rheumatoid Arthritis, as any medicine reduces my platelets. Controlling inflammation through diet. Have reduced inflammation after a month of eliminating food that does not agree with my stomach. 

As for ITP, there is no cure in any system of medicine. Homeopathy was good for me till I started RA meds. My platelet went up to 150 k after Homeo treatment. 

As for papaya leaf extract or tablet, this is the only one I can take as of now. Caripill is usually given fordengue, as platelets fall in dengue too.  

Hope I have not scared you by saying ITP is incurable. And hope the info I have given answers some of your questions. Since the immune system is responsible for destroying platelets, nothing can stop it from doing so. Some allopathic drugs also increase the production of platelets, like papaya leaf .  but allopathic drugs have very bad side effects, while papaya leaf may in some, only cause the bowels to move, a boon if one is constipated, like me. 

My GP, who at first said that Caripill won't work, is now amazed at my count. 

Please check your vit d level. Any auto immunedisorder and vit d are inter related. Since you have been on steroids, it would have leached vit d and calcium. 

All the very best. 

[Esmiralda in reply to Padram]

Hi padram I'm from chennai. N yea the steroids have tossed ma health I'm having joint pains and muscle pull. Now I've started on homeo together with English medicines jus hoping to get back to normal. Confusion hits ma head with alot of fear 

[Padram in reply to Esmiralda]

Hi, do you bleed easily? I had a lot of bleeding, (urine, stools, gums, purpura) . even when my count is 50 k, I bleed alot from my gums. If there is minimal bleeding, you need not worry. There are people with 10k without bleeding and living a normal life. 

If bleeding is not an issue, then no meds are necessary. You only have to deal with the fatigue. But good nutrition will help a lot. Lot of fruits and veggies,no food from a packet, no aerated drinks . Follow this strictly and you will find your energy coming back. 

I take a lot of green leaf juices. Pomegranate, beets are also good. 

First thing is to not get scared. After the initial shock, please make an attempt to accept your condition. This makes it so much easier to handle the disease. 

Please feel free to ask any query. Will try to be of help. 

You can tide over this crisis. All the best.

[Esmiralda in reply to Padram]

Hi padram thank you so much I feel much relieved by the confidence u gave me. Well in the beginning my platelets was 15k n I had two bruises dats it n by God's grace no bleeding. I jus got married with a man who is soooo much supportive but we are scared to get a baby thinking it will cause me risk as well as to our baby. 

[Padram in reply to Esmiralda]

Hi Esmiralda, congratulations. In my opinion, please take your homeopath's advice on having a baby. I have read that many who had ITP have healthy babies. So with your doc's help, everything will be OK. Wonderful that you have a very supportive husband.

[itpsufferer in reply to Padram]

Hello padram

My father aged 63 years is also suffering from ITP.I am from andhrapradesh.I got inspired and got hope with ur reply.please could u give ur contact number please.

[M_Umar]

My name is Muhammad Umar, from Lahore Pakistan. I am basically a Lecturer and completed my master from Germany. My English is not so good, so sorry in advance for bad English.

Officially i was diagnosed an ITP patient in November 2015. I even did not heard this disease before  November 2015. In Germany 2012 during  studies my platelets were around 55K but doctors ignored it completely. So officially after coming back to my homeland in a random cbc in November 2015 I was diagnosed an ITP patient after excluding all other possible causes of low platelets in Lahore. Since November I as well as my all family members were too much tensed even i often cried in the first 3 weeks of diagnoses. I visited different doctors as well as spend lot ov times on internet for the possible treatment of ITP.

In November after two times of transfusions ov platelets within 48 hours, doctors shifted me on high dose of steroids. And i am  taking steroids since then. On high dose of steroid my platelets become normal but on low dose platelets dropped again. Drs. were playing this game of high and low steroid dose with me till 15th March 2016. After 3rd time relapsed on 15th March I decided to Give a Chance to NATURE.

And i started taking Vitamin C tablets 1000mg per day after breakfast as well as one glass of Alovera juice in the night, though I do not know how to take it properly because no one guide me about it.  Since last 3 weeks I am taking this and my platelets are well in range. I hope it will remain the same.

Here I would like to share that I asked three different Drs. about the use of Vit. C in last 4 months but 1st dr. replied you do not have Vit. C deficiency, 2nd replied oh ho do not use it, it will reduce your platelets and the 3rd one said don`t even think about that, you need to take very high potency of Vit. C around 8000mg to 10000 mg per day and this high dose will destroy your other organs. In-short each dr. strongly discourrage me to use Vit. C but after disappointment  with steroids or with drs. I took a bold decision and fortunately so far my experience is very good. Though it too early to say that vit. c or alovera is helping me to keep my platelets well in range but atleast since 16th March I didnot take very high dose of steroid. So last 3 weeks are remarkable for me that i did not take high dose of any serious medicine. I would like to suggest specially new commers in ITP please give a chance to NATURE at least once.

For any further query feel free to contact on 00923214465253 or [e-mail]. Also your comments suggestions or guidance on vit. c  will be a great help for me.

[Padram in reply to M_Umar]

Hi umarfarooq84 , I just read an article about vit c and auto immune disorders. It says that vit c should help in removing the free radicals from the body, thus reducing inflammation. Your experience encourages me to try vit c. I have not yet read about aloe Vera. Thank you

The following article is what I read.

The Ascorbate Effect in Infectious and Autoimmune Diseases

 

Robert F. Cathcart, M.D.

127 Second Street, #4

Los Altos, CA 94022

650-949-2822

orthomed.com

 

[Hempgirl in reply to M_Umar]

I have itp.. on june 30 i find out for sure if it's and it's scaring me. I just recently found out. Reading everyone view on it is scaring me some more.. I don't like medication. I prefer nature care. I'm going to try your way. thank you for your advice

[ITPAffecty]

Hi All,

It's quite relieving to know, there are many people in world who is suffering like us. I am diagnosed with ITP 5 yrs back and still i am surviving without Spleen removal. First year was horrible being tested with Steriods, Rituximap, 2 more variety of tablets (forgot name) and then IVIG. Tried all costly treatments but nothing lasted my Platelets than 2 months. I tried Homeopathy too for 6 months but of no use.

 My most important problem is heavy menstrual bleeding and bruises. I am using Revolade may be 4 or 5 tablets per month during periods. It's very good tablet mainly though its only short term solution. I feel my body is more hot when platelets drops below 10k. I used to think may be because of heat pblm, my platelets getting low, but its vice versa actually.

I read someone saying, taking vitamin C supplement is helping. Can you please let me know the name of tablet please?

I had tried Caripill for 15 days but i didn't see any changes, hence stopped. If i eat chicken, fish, masala food or any heat causing/processed food, suddenly can feel platelets getting low. It's difficult to live without knowing what my body likes to eat. Hope in near future we get some permanent solution.

Does anyone have tried Vitamin K supplements? Will it help?

[M_Umar in reply to ITPAffecty]

I am using 2 tablets of cecon 500 mg.

are you using vit. K?

[ITPAffecty in reply to M_Umar]

Am not using Vitamin K, wanted to know if it works..