Recently diagnoised with ITP

Hi All,

I am new to this website and I recently diagnoised with ITP 3 weeks back. My platelet count is still not increasing even after medication. My doctor suggesting splenectomy in coming 3 weeks.

I had opinion with some other doctor as well. He also told the same. This is second time I got effected for ITP. Two years back I got diagnoised and that time I got good platlet count.

Please suggest what can I do?

11 Replies

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  • Hi many people on this site advise not to have a splenectomy as it doesn't always work and can cause more problems im sure others will give you more pro's and con's. My count has been as low as 29 and max 106 since I found out I had ITP about 10 months ago and I have not been given any medication just being monitored I get bruising but do not bleed. What is your count.

  • Platelets can be destroyed in the liver or the spleen, and afaik, an Indium test is the only way to establish which organ is the guilty party. No point having a splenectomy with all the attendant hassles for the rest of your life with meds, vaccines etc, if your spleen isn't destroying your platelets.

  • If you don't have bleeding symptoms just monitor your count..try herbal remedies also see that you dont have B12 deficiency as that also decrease platlate to some extend..still issue then i have heard of medicines like revolade, mmf.or rituximab treatment .Some ppl also take nplate injection and find good results

  • It is not absolutely certain that it is the spleen which always destroys our platelets. Our platelets can be destroyed by our spleen or our liver. So obviously if you remove the spleen and your platelets are being destroyed in your liver then it will not solve the problem. There is a test called an indium labelled spleen scan which can detect in most cases (about 80 per cent ) whether or not it is the spleen which is destroying platelets. It is certainly useful to have this test before having the spleen removed as it gives a better indication of whether or not having the spleen removed will be helpful or not.

    Having the spleen removed is certainly being done less and less nowadays as there are so many other treatment options to try so it is certainly best to give it very careful consideration.

    You can always get a second opinion from an ITP specialist centre. If you email ITP Support Association HQ on info@itpsupport.org.uk they can let you know which ITP Specialist centres are closest to you assuming you are in the UK. Hope all this helps...best wishes.

    You can also see that there are numerous treatments to try and infact having the spleen removed is now being done far less. A list of treatment options is at ....http://www.itpsupport.org.uk/index.php/en/itp-treatments

    Reply

  • Sounds extreme to only have a matter of weeks between diagnosis and operation. You need to say no and ask what medicine you can take instead!

  • Have you not been offered any other treatments - there are many out there and you might have to try a few but hopefully one will suit you and raise your platelets. It took 2 years for me and I started on a trial drug which is working for me and levels are in the 90's now which is great as they were down in the teens and I was having to have UVIG transfusions to get them to safe levels.

    Hang onto your spleen I would advise!

  • Thank you all for your advise. I am living in southern India and belongs to Hyderabad. I am not sure about ITP support centers near to my place. Yesterday my count was 10000 and it is decreasing day by day. My GP rrecommended splenectomy because I have a block at my head. My CT scan report says there is a small block.

    To avoid risk he rcommended the ssplenectomy.

    Please advise.

  • Prasanna as you are based in India, please do email the ITP Support Group in India and they may be able to provide you with some more detailed information about what is available in India..the link is at the following...http://www.globalitp.org/index.php/member-organizations

  • Hi Prasanna, i m from India and our daughter is diagnosed with ITP. All kind of treatments are available here in Delhi. Docs at Gangaram hospital and AIIMS are best at their work , even CMC Vallore has very good success rate .Would seriously suggest you to consult here before going for spleen removal. Sounds your clot might be a major reason for suggesting such extreme step.

    If plt dropping cont. then keep ppl ready around you to donate blood . You already know our policies here.

    Why not IVIG has been started yet seeing pattern of gradual fall.

    Dapson is very safe medicine and increases platelets to safe range as its side function . Hope you must have tried it.

    Unfortunately my daughter n her father both are allergic to sulpha drugs so every time doc tried.. it lead to hemolysis n we had to stop but it always increased her platelets .

    Azaron is there to take 50 mg tab once a day . We refused to take it

    On homeopathic treatment n going on steady with count of 11-12 k. Once her exams get over in April , will put her on antibiotic treatment for H.Pylori.

    Best wishes. Stay strong .

  • Hello,

    I was also recently diagnosed with ITP and like you do not know what to expect. My platelets are low (below 60) also have quite a few bruises. Had to cancel our cruise holiday as scared of bleeding when on board a ship in the middle of the ocean! Not really had much help or advice from my consultant, had another blood test yesterday and seeing my consultant again on Thursday. As I am now 65 I have decided to retire from work as find the tiredness overwhelming at times. Will let you know what happens after my appointment. I have worked as a doctor's receptionist for 16 years and only come across this illness once .Know I do not want a splenectomy and have been trying to raise my platelets through veg and fruit especially lemons.

  • You seems to be indian i dont know why indian doctors are stuck with spleenotomy even i was suggested spleenotomy by many doctors

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