Recently been diagnosed with ITP

Hi everyone, have been in hospital taking immunoglobulin and intravenous cortisone as my count was pretty low and doctor was worried about hemorrhage. really helped and I felt sooo well and alive after that. now I am at home taking cortisone. unfortunately as the cortisone dose was being gradually cut my count kept falling and now I am at a loss as to what to do. Have no intention of having cortisone all my life, you get incredibly bloated and frankly i dont feel well. What a horrid illness this is.

I had no idea people could live with ITP (chronic) for so many years, i thought it was a one off thing and then you would be cured! has anyone posted a complete guide about ITP that i can have a look at? I am totally lost as to what to do and the doctor is also a bit lost! most info on the internet is pretty limited and repetitive.

thanks in advance

BTW im portuguese and live in portugal!

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  • you don't say how old you are? I had ITP in 2004 at age 52 had my spleen out when Prendislone did not work in 2004 since then they have a few more drugs out. I was in remission for 9 years came back in 2013 I was again on prendslone and then on a drug called elbombag and that did not work put me on NPlate and 4 doses of Retuxbum and I have gone in to remission again my count in hospital and at home was under 10 for 6 months. I had a bleed on the bowel they stapled it then got on the NPlate I was on this for 3 months and then for some reason my count is now any were between 300 to 430. In America its my understanding they put you on Antibiotics if you have had your spleen out in Australia I was on them for 6 months then none??? There is a test in England Spain and France called I think Indium test to see if the little killers are living in your spleen or liver. So not point in taking out your spleen if they are living in your liver. Ask about this good luck

  • sorry! Im 50! diagnosed same month as my birthday! lovely present plenty bruising and hemorrhaging! never did pay attention to my health. yes i dont want to take my spleen out so as to have to live with antibiotics. thanks for your suggestions very helpfull

  • I live in America and I was not put on antibiotics after my spleen was removed other than immediately after the operation. The doctor warned me that I was susceptible to lung and hart infections. I was given two antibiotic tablets to take if I had a fever and was coughing during the weekend when medical help is less available. Then see a doctor on Monday. These infections can be serious if you do not have your spleen.

  • pdsa.org/ itpsupport.org.uk/ please do some reading these sites are very informative.If you look in the right places all the info re treatments and support for both you and your team are available there are also many facebook groups available

  • just been reading your links, tks! facebook i can only find one page, the rest of them arent updated at all

  • Hi JoaoP I can remember when I was diagnosed with ITP in December 1997. It was the 18th December and I had just been to the gym for an hours work out. I was told I had ITP and I expected to be given some pills to take and then get on with my life. How wrong I was! I have had a series of different treatments in that time and I too have had my spleen out. The operation did not work and now I take penicillin twice a day for the rest of my life. We all understand how difficult it is to come to terms with an illness where there is no reason for getting it and no cure for it. You just have to try lots of different drugs at different doses over different time scales before (hopefully) finding the balance that suits you. I have been through seven different treatments over a number of years and at the moment I am stable. You will find a lot of help on this site and have a look at the website mumofwill has identified - there is a lot of information there to read. Keep your chin up. Nicky

  • Thanks Nicky: Removing the spleen is whats worrying me, im sure they will recommend it but like you there seem to be plenty of people where it simply does not work. By what i am reading here there really isnt anything that does work 100% its a question of damage control. On the 30th I am having long talk with my hematologist but he seems lost with whats been happening, increases cortisone, platelets increase, start lowering dose platelets count goes right down. I have no intention of taking cortisone for rest of my life, its a dreadful thing

  • My consultant was very confused with my count. One week I had a blood test on the Monday and I had a count of 2 then by the Friday my count was 956 - for no reason! The swings were extreme which meant attending hospital between three and four times a week for well over a year. One side effect I did have with one drug was a retinal bleed and meningitis. I kept clear of that drug after that. But it really is a case of trying to find the treatment that works for you. Don't give up and remember that many of us have been there and know what it is like. Take care Nicky

  • Find a hematologist that specializes in itp. Find the Itp foundation online. And on this site put in itp and that will get you in touch with others with itp. My daughter was diagnosed about 8 months ago and her life has changed dramatically. She is exhausted all the time She is on nplate from her doctor. She has been living with a count of between 5,000 and 20,000. At times for a few days it will shoot up to 50,000 at most. She just came back from a bleeding and clotting clinic yesterday and they stressed not to have spleen out. That is old school according to them. Her doctor was treating her with nplate qnd steroids to get her count up to do a splenctomy . That was a no, no. So he is going through her records and now working with her Doctor to have only nplate and given consistently and weekly. Find yourself a specialist who is up to date with new treatments.

    Itp needs way more attention than what it is being given!!!!

  • thanks cjoh: I live in a small place! there is one hospital and only three hematologists and they treat all types of blood problems!

    So sorry to hear about your daughter it must be very stressful for you both. It looks like the younger the patient the better the probability of curing ITP so at least you have some hope. I spiked up to 600.000 after an enormous dose of hemaglobulin but it fell quite dramatically after that. Originally I had between 10.000 and 14.000. and 50.000-70.000 are my the last two counts while on cortisone. It is a dramatic life changing illness specially the hemorrhaging, getting bloated with cortisone, feeling tired and having mood swings. I agree they should pay more attention to ITP but the numbers are not in our favor. Im sure the big Labs cant justify the cost of the developing a cure. I wish all the best for your daughter and you shouldn't forget about yourself, you cant help your daughter if your not well

  • Thanks everyone I will be reading all the new threads on this site from now on.

    Il keep you all updated if there is anything new i can contribute with! I am sure there isnt but at least I have better knowledge with which to confront my doctor!

  • Have you been onto ITP support - uk site very informative. Also groups to join on Facebook.

  • Crissy22a

    iv been diagnosed for 2 years now and its been hell. Iv been researching myself for all this time. With not a lot of help from my consultant. They only treat the condition , not the cause. Its only now that things are making sense. Please everyone, look at ,,, leeky gut syndrome. And gluten free diet. They also didn't tell me that people with itp also suffer with depression. The reason being, when you dont have platelets you dont have anywhere for your serotonin to bank. Serotonin is made in you're gut, then goes to the brain then to your platelts. If you're low of platelets there's no where for the serotonin to go,,, hence depression. I got itp from a virus I picked up in Egypt and wasnt given antibiotics quick enough. I am now trying to heal my gut with cq10 , selenium , probiotic. Look into it , its the reason why autoimmune diseases start. If your gut is wrong , everything is wrong

  • I was diagnosed in April 2013 when I suddenly lost all my platelets. For ten days they stayed at zero. Nothing worked. I had 3 win-rhos and 5 ivigs and bags of platelets. The doctor was talking spleen removal which scared me very much. Then on the 11th day, my count jumped to 12, the next day, 24; then at the rate of 1,000 per hour, I was up to over 300,000 in a few days and have stayed there for 14 months. I was on steroids from April until August, dropping very slowly. Of course, I was always worried about the count dropping, but it never did. I think the key is a very slow cutting back of steroids however nasty they are. My doctor would drop 5 mg every two weeks. Then at the end, 2.5 every other day.

  • Hi

    crissy22a here mentioned of leaky gut syndrome, which have been very familiar to me too. This was also recommended to me and had been my source of dealing with my ITP. With this, I managed my diet and been out of animal protein for 6 months, although I was having fish or chicken every now and then, but totally out of pork and beef. Mostly, i have green vegetables and this I guess helped me a lot.

    My platelet dropped to a very low 3 counts in December 2013, but I responded well on the 4-day drip of IVIG that brought back my platelet count to normal. Been on Prednisone starting on a high dose of 70mg daily and slowly tapered to Zero in May 2014. My platelet at one time dropped from a high 315 to 179 which prompted me to take papaya leaf extract and I took it regularly on 3 to 4 times a week regimen. My platelet then holds on to 200+ level.

    I do believe my new embraced diet helped me and I want to recommend it too to anyone having low platelet count. I am pasting here the url of my readings on the subject of the leaky gut syndrome: drbenkim.com/autoimmune-ill...

  • My thoughts are with you. Every patient or doctor is different. My rheumatologist was pushing Rituxan, my lowest count was 38. I refused flat out. I already take meds for SLE, and will not subject my body to more drugs, especially because I have no symptoms. My hematologist said that there would be no treatment unless I had symptoms, which I do not. I carry on my activities of daily living without any issues. As I understand it, my rheum told me that under 30 is usually when treatment will start.

    Maybe a 2nd opinion from another hematologist might be helpful to you? I wish you well. ITP is such an elusive condition, as well as lupus is too. I go by how I feel. You know your body better than anyone else.

    Regards.

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