i found out yesterday my itp is cause... - ITP Support Assoc...
i found out yesterday my itp is caused by my liver NOTspleen WHAT NOW help
I presume you had the indium test which showed that the platelets are cleared mostly by the liver. I had the same result. The liver is not actually causing the ITP, the platelets are tagged by antibodies and are then cleared by either the spleen or the liver, or both. All it means is that a splenectomy has very little chance of working.
so medication is the only route then
and ty for your reply
Medication or a spontaneous remission. Lots of times ITP seems to level off for people naturally. Splenectomy is going out of fashion and I wouldn't have consented to one myself anyway. I just had the indium test to appease my haematologist of the time and out of interest. Now I'm with a different haematologist who doesn't do splenectomies anyway.
I'm now using Nplate (romiplostim) to good effect. What treatments have you tried?
Splenectomy is certainly much less likely as more treatment options become available. If you want to know the upto date thoughts of the medical profession on ITP, treating it, diagnosing it and managing it then the attached report entitled International consensus report on the investigation and management of primary immune thrombocytopenia is the place to go. It is very detailed, in places quite technical but well worth checking out..... bloodjournal.hematologylibr...
Trouble with the International Consensus Report is that it has American influences and they tend to be far more pro splenectomy than we are in the UK.
See Drew's speech at fhs.mcmaster.ca/medicine/he... for the modern UK view. 
Drew Provan was also a main contributor to the International Consensus Report. The American view is actually more pro Eltrombopag than splenectomy currently but as with all science and medicine it is very much a movable feast. Certainly in general terms the focus is tending to be less on splenectomy and immune system suppression ie steroids etc and more on stimulation of platelet production. As ever each case is different so there is no standard, one size fits all treatment. The good thing is that there is a very keen interest from the researchers and medical professionals so hopefully more understanding and more treatments will be forthcoming with better success rates. The treatment options are increasing all the time so that there are so many more alternatives now than even 6 years ago when I was diagnosed.
Excellent overview. I am an American and was diagnosed with ITP 7 years ago without treatment and my platelets range from 40 to 30,000. Little bruising and other indicators of ITP. My hematologist sees me every 6 months for a CBC. I hope it stays that way, but as we all know, it is a very mercurial condition.
Hi Starski, No problem infact I would say you have had a narrow escape from a wasted procedure that had ramifications in other directions. The important question in my mind is 1. do you bleed and 2. what is your count.
The former is the most important whilst in my humble experience, the count is very much secondary. I have had itp for 20 years. I have a regular count around 10, live a normal life with no medication unless essential but I also recognise I am very, very lucky. I accept that I have modified my lifestyle by stopping dangerous activities ( not that I had many ) but this I can live with. I have checkups at hospital now every 12 months but equally, should I start a bleed, I know to go straight to the hospital. I also carry a ITP card available from the support group. This is just in case. I still travel around the UK and abroad and am currently awaiting a trip to Oman on business.
I have had a few amazing bruises as accidents do happen.
It sounds as though your consultant is switched onto ITP so good luck and keep us posted of developments.
Hi very interested to read all these replies. I am hoping for a bit of advice to help me.My daughter who is 22 and was diagnosed with ITP in April is probably now having to consider a spleenectomy although we are not very keen as she also has had the Indium Scan which showed it was most likely the liver and not the spleen. Unfortunately a couple of weeks ago she had a bleed in the brain ( has come through it, thankfully). Before this bleed she was living well at home on a count of between 0 and 4, with only the purpura rash, she was being checked weekly and had trialled Eltrombopag and Romiplostin but to no success as neither lifter her count. While in hospital they have had tried all the usual drugs for ITP but she has been refractory to them all and nothing seems to be lifting her count, it has now been recommeded that a spleenectomy is performed, views on this would be appreciated as obviously we are apprehensive as to the success rate for her with this procedure. Thanks
Hello Lindylou, have they tried Rituximab (UK) known as Rituxan (USA) ? I had Rituximab in August 2010 and have been in remission thank goodness ever since. I have had no other medication since then at all.
Really sorry to hear that nothing has worked as yet for your daughter and obviously it must be very worrying for you all. Where are you based?
Splenectomy may well not work if the indium screening test shows that the platelets are not being destroyed in the spleen. Which specialists have you consulted ?
Hi Anthony, we are based in Scotland and my daughter is presently being treated at our local hospital by the consultant haematologist. She has previously been seen in Glasgow by Dr Baggot, ( my local hospital keeps in touch with Dr Baggot ). She is presently receiving Rituximab treatment along with steroid treatment, she will be due her 4th treatment of Rituximab on Friday, we are waiting to see if this will bring the much needed rise in her platelets as this treatment takes time to work as you will be aware.
In April when she was first diagnosed we went through the usual drugs for ITP and we know that something worked then as by June she had a very healthy count of 160 (unfortunately at that time she had been so unwell that it was a complete cocktail of drugs so we dont know what lifted it.) She kept well for 8 weeks with a good count then her count dropped drastically to 4 by the end of August and she hasn't risen much since then. Lived at home with this count until October when she took the bleed , she is presently in hospital and platelets are being eaten up as quickly as they are given to her, she is stable and as the drugs dont seem to be working a spleenectomy is being mentioned for the future but as I have said we are very unsure about this. Thanks
Hello Lindylou, with Rituximab it can take quite a while for the platelet count to respond, albeit I was very lucky in that I responded within a week of my first infusion. My specialist warned me that it can take 3 or 4 months in some cases for the platelet count to go up, so it is a matter of giving it time. As you say it is difficult to really do much until you can say whether or not Rituximab has an impact so it is a matter of wait and see. I just hope that your daughter can respond as well as I have and that Rituximab can work for her. Please do keep it touch and let us know how you and your daughter get on. See how the Rituximab works but if it does not do the trick it might be worth you getting a second opinion from a second specialist but see how the Rituximab goes first.
Hi thanks for your feedback, hopefully it will start to work soon.
Sorry to hear about your daughter thing is with ITP everyone is different and what's good for one certainly isn't good for the other I have friends who have take. All drugs to no effect and are happily living with a low count I have friends who spleens to y has worked and others it hasn't you should research the drugs they use and see which u prefer or would like to chance! I do hope she finds remission soon . There's plenty of drugs out there so rest assure one will help her out
Not sure what you mean by "what now?" Do what you can to keep a healthy liver (don't drink alcohol) and listen to your doc.
If there is any one who is injecting themselves with romboplostim out there. Could they tell me how you managed to do that. I have been asking my consultant if I can and it been a big no !!!!. I am at a even level with the drug and it's working . So I really need to do this .. Please help xxxxx
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