TTP

[ManishTTP]

Greetings from India to all the ITP supporters in this group ! This is Manish Sanghavi from Mumbai , India.

My wife recently got affected with TTP. Pls find below a brief background:

Brief background - My wife was pregnant 2 yrs back. She had developted Thyrod durring pregnancy and thyrod was normal after pregency. However, since last 45 days , she was feeling very weak. On 28th Jan 15 morning, she felt stiffness on her left hand and around her lips for 1 minute. Same day evening, she got similar feeling on her right hand and head. This was something like paralytic attack. We immediately rushed to our family doctor. He adviced blood tests. In the tests,we saw her hemoglobin was 5.80 and Platelete were around 30,000 only.

Our doctor informed us to consult a Hemotologist asap and we went to Dr M B Agarwal. The Doctor did the bone marrow test and informed us that she is affected by TTP and she will have to be admitted to hospital asap.

She compeleted 5 cycles of plasma exchange and 4 doses of reditux injections (by Doctor Reddy) and got discharged on 3rd Feb. However, she got a re-attack in 10 days after discharge from hospital. She underwent further 5 cycles of plasma exchange. The last plasma exchange was done on 28th Feb 2015.

Sweety is at home taking bedrest. She is having steriods on alternate days. Her platelets are in normal range currently (crossing figures).

Request your help in getting the following information :

1) Is the treatement for TTP and ITP is same ?

2) Pls advice on any alternate treatment possible for treating TTP / precautions to be taken etc.

It will be great to get contact details of any person who was by affected by TTP and is currently out of it. We can get suggession from such persons...to prevent a re-attack.

I can also do a concall / skype chat etc with you to discuss further, if required. In case of any further information required from my end , please feel free to write to me at [e-mail]

[Padram]

Hello Mr Manish. TTP and ITP are different. In TTP the blood clots due to lack of a protein. This leads to low platelet count. In ITP the platelets are destroyed by the immune system. So platelet count drops. Your doc is giving the correct treatment. I have ITP after taking Yellow Fever Vaccine. Plasma transfusion doesn't help me as my immune system destroys them anyway.

I am on steroid for the past 1 year as I bleed even at 30000 count. Steroids bring about many side effects, physical as well as psychological. Ask your wife not to be afraid. With plasma transfusion many recover completely. So don't worry. Meditation helps me cope with side effects of steroid. Some wonderful guided meditation videos are available on you tube. You can try homeopathy. I have just begun treatment under a homeopath. Unfortunately she is not in Mumbai any longer. My progress is satisfactory.

My best wishes for speedy recovery.

Please give your wife all the emotional support she needs.

Padma from Mumbai.

[ManishTTP in reply to Padram]

Thanks a lot Padma. You have really helped in reducing our tensions at home. I am unable to find anyone with a TTP history...Do you know anyone who was affected by TTP and is normal now.

[Padram in reply to ManishTTP]

Sorry Manish, I do not know anyone with TTP. I met a woman (co-passenger) who had clotting problems because of high platelets(above 5 lacs). But I shall try to find out. Will apprise my homeopath about your wife's condition. Let's see whether she can help your wife. What is her steroid dosage now? What does your doc say?

[ManishTTP in reply to Padram]

Dear Padma ....Tks for your instant response...Her steriods dose is 5 mg Predinisolone every alternate days. Doctor is of the opinion that she is recovering and she needs to ensure that she does not get any infection/fever etc. Can you suggest a good hemeopath doctor ...we can consider it as it will not have any side effects.

[Padram in reply to ManishTTP]

5mg on alternate days is great news. Our body makes around 7mg every day. So relax. Her dose will further taper and she may not relapse. Will try to find out a homeopath. keep smiling.

[Padram in reply to ManishTTP]

Hi Manish. My homeopath has given the names of famous homeopathy in Mumbai . She doesn't know any of them personally. I am trying to find their address from the net. Will mail you the details.

Padma

[ManishTTP in reply to Padram]

Hi Padma,

Hope you are doing good. I spoke to one of the homeopathy doctor whose no. was given by you. But the doctor informed that she is not very much aware about TTP. Request you to kindly help me with some other homeopathy doctors if possible pls....

my wife's current platelets are 2.2 lacs and hemoglobin is 11.5. she is not on steriods since last 1 month. However, i want to ensure that there is not re-attack.

Regards

Manish

98193 57778

[chiapet57 in reply to Padram]

Padram - I too have ITP. You are the first person who said they developed ITP from the yellow fever vaccine. Two years ago, prior to a trip to Peru, I had yellow fever, typhoid and Hep A vaccines. One week later I developed petechiae over my arms and legs the day before we were to leave for Peru. Being a nurse I knew it was either a bleeding disorder or some sort of leukemia so I decided to go on the trip anyway, not knowing if it might be my last. The symptoms went away over the two weeks we were gone, but then upon arrival in the US they were back with a vengeance. I work in a hematology office in Berkeley, CA and was at work and when the hematologist saw my symptoms he immediately did blood work and a bone marrow biopsy. My platelets were 2,000! We tried IVIG and steroids which didn't work. We tried n-plate which eventually worked but after the first two weeks of it not working my doctors convinced me to have my spleen removed. But the point is, when I asked my doctors if they thought the 3 immunizations had anything to do with me developing ITP they said no. I have always believed that this was the cause for me and tried to find evidence in the literature online but could never find anything. So, in a small, strange way, it's affirming to hear that somebody albeit half a world away has had the same experience. Since my splenectomy (which I did not want) but thanks to my wonderful Dr. Rajesh Behl convincing me that it was the best course to take, I've been in remission.

[Padram]

Hi chiapet, Yellow Fever Vaccine is a live vaccine. Any live vaccine should not be taken when our immune system is weakened, or when we are allergic prone. Being a nurse you might be aware of this. I had just entered post menopause after a miserable 6 months ( menses every 10 days) . My platelet even then was 175000. But my hemoglobin was 8 and I was tired all the time. I also had recurrent UTI, which was again linked with menopause and the dryness resulting from that. Maybe my immune system was weakening. I later read that people with egg allergy too should not take live vaccines. In relation to this I remember that my daughter who was born by c section, was not given BCG. She had some allergygic rash one day after birth. So my doc said that bcg should not be given.

Like you say, getting to know that another person had similar reaction to YFV half way across the globe is somewhat strange.