ITP , 6000 - 23000 platelet count, Age 69

[RONALD-DASON-P]

Need proper diagnosis for my problem.

1. Initially when hospitalized not able to speak (may be bleeding in brain). Platelets count 4000, Got IVIG now able to speak (2 weeks before)

2. Had 30 units of Platelet transfusion in 10 days. 5 units Single Donor Platelet

3. Rose count from 6000 to 13000 with added prednisone 60mg + 60 mg dose per day it went up to 21000 next day

4. following day it went up 23000 and the next day 56000

5. Then went down drastically from 56k to 43k and then next day to 23k.

6. Also took Anti-platelet antibodies and ANC test were negative.

Not able to get proper diagnosis and treatment, living in Thoothukudi.

[Shneakyoleary]

Hi Ronald,

Not been able to speak, sounds scary.

When my levels went to 23.000, I got treat with 100MG of Predisone and a tummy tablet to help lining of tummy first thing in the morning.

The highest my Platelets went on Steroids was 88.000

I am only off them since August 2nd, and two days ago my count was 55.000.

[sailor]

If you wish treatment in India, suggest you look at the globalitp.org web site for the ITP support group in India and make contact. Mr Roy can supply contact details for ITP specialists in India.

If you wished treatment in the UK, join the ITP Support Association and you will be provided with a list of centers specialising in ITP.

Counts can move up and down considerably at the onset of ITP but if you do not bleed, many live a normal life with low platelet counts, even down to ±10000, without any medication unless necessary for surgical procedures or trauma situations.

Every ITP patient has different reactions to the drugs used and it is a case of finding the one that works with your body, if medication is the answer. However, word of caution. Do not take Prednisone for longer than necessary, side effects are not good and you need to come off the drug by tapering.

[RONALD-DASON-P in reply to sailor]

Yes steroid make energetic for short time and make very tired after short span of time.

Any good diet advice?

one of my fried is also suffering from ITP he is taking very less cooked food along with fruits for every 2 hr. His count wasn't increasing, but he doesn't feel tired he is not taking steroids.

[sailor in reply to RONALD-DASON-P]

Ronald There is no firm evidence to support diet changes can help, but there is research ongoing in the UK into this at present. However, if it works, go with it.

As to steroids, yes you are correct but they are a holding medication. There is no cure and the long term effects are terrible. They can cause the bones to soften and then you have other problems, often worse than the ITP. They must only be considered a short term solution, if they work.

[Tenk in reply to sailor]

Good advice, Sailor. How long were you on prednisone?

[AnthonyHeard Administrator ITP Support Association]

Hello Ronald, as Sailor suggested in his reply above, if you are in India then do get in touch with Mr Roy via the following link and he can put you in contact with ITP specialists in India. The link is globalitp.org/index.php/ind...

[RONALD-DASON-P]

Currently seeking advice from Mrs. Marget (Haematologist) Metha Hospital, chetpet (Actually I am not the patient, my Mother-in-law). I am seeking solution for her.

Dr. gave list of Blood test Hepatitis, HAC, HIV and also Bone marrow. other than bone marrow we have given for other test. On bone marrow we are go to take it on 17th. Any comments or advice. Meanwhile I will also contact Mr. Roy. Thanks

[sailor]

Morning Ronald. . All the blood tests are I am sure a case f the Doc making sure that everything else is OK. Bone marrow is debatable, some advocate and others don't, but worth having done, not very comfortable though.

As to the steroids, I only took for about a month. If they were going to work, they would have done so by then. If they do work, but the count drops when you stop, they are a short term solution only and then you need to move onto other drugs of a longer term treatment.

Keep us informed and do speak to Ajoy Roy.

[RONALD-DASON-P in reply to sailor]

Dear Mr.Ronald,

Please let me confirm whether she already diagnosed ITP ?. As per my knowledge there is no diet restriction for ITP patient. Please share all the reports including bone marrow. It is always be advisable to continue your treatment under a Hematologist if she is a patient of ITP. Till now whatever treatment she received is absolutely O.K.. No permanent solution but can be manage with some good medication. Spleenectomy is not also a permanent solution. If you wish you may visit CMCH, Vellore. Request your Mother-In-law , not to be frustrated. Better to accept & continue the medicine as advised by the doctor.

I am always available for any advice , assistance and counselling.

With Thanks

Ajoy Roy

Durgapur, West Bengal

09474640064/08759039523

[RONALD-DASON-P in reply to sailor]

I am planning to post All report to Mr. Roy and here might get some suggestion. I suspect the fracture caused two year before in the shoulder ball and socket would have triggered Autoimmue., but I am not a Dr. anyway

[RONALD-DASON-P]

Blood test Hepatitis, HAC, HIV results are negative. Bone Marrow result will be given on Wednesday (Tomorrow).

[RONALD-DASON-P]

FINALLY BONE MARROW RESULT CAME AND DIAGONISED AS TTP Thrombotic thrombocytopenic purpura