Platlets will not come up despite every possible treatment

Just come back from having more platlets. Currently 7, but consultant on duty said they have never had such an intransigent case. I have had just about every possible treatment for ITP but the platlets still will not come up. At the moment it is depressing me but is there anyone else who has had a similar problem who can cheer me up? I am 65 and have had a kidney transplant 18 months ago.

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  • Hi, no idea where you live. I live in Latvia. I have had this problem for about 8 years.My plateles have gone up(uzsing many Prednizolon tablets ) and down (using smaller amount of tablets) Doctors also tried to choose other variants of treatment but...unfortunately without any results.there were times i had 0 platelets in my blood. You know, when doctors say they do't know what to do , I have simply trust on GOD. I imagine that i am in HIS hands. One thing I have noticed that my platelets go down after some stress. I work in school so stress is my everyday life. :) Here, in my contry we don't have so good social garantees I could not to work. Sometimes I have noticed that fish oil helps. But for sure the best doctor is GOD.Pray, trust on HIM. GOD bless you! Antra

  • Try homeopathy. I know it sounds kooky but surely worth a try. I used a homeopath during my second pregnancy. In my first pregnancy I delivered my baby with a count of 35 and it was scary. Prednisone didn't work at all for me. In my second pregnancy I used a homeopath. She talked a lot about the effects of radiation from x rays of which I had many and gave me various remedies. My platelets stayed way higher throughout and I was induced when my platelets started to drop quickly but delivered with a count of 80 which was a far easier experience.

  • Hi - Don't want to take over this thread but can you tell me in what context she talked about radiation? I ask this because many, many years ago I drank radioactive iodine for the treatment of an over active thyroid gland (of course they wouldn't use that treatment now). Years later I was diagnosed with type 1 diabetes and now ITP, both of which are auto immune conditions. This treatment cured my OVER active thyroid, but I now have UNDER active thyroid. I did wonder at the time ? how does the radioactive iodine know where to go and did it kill off other things as well??

    As far as I know you are the first on this site to mention radiation.

    Mags

  • Yes nothing touched my levels except IVIG and that was only for a week. Have you tried or been offered Nplate?

  • Sorry to read of your difficult to treat problem.I was diagnosed when older than you are now .I did not respond to prednisolone but did get all the nasty effects associated with high doses and went through a period of worry ,uncertainty and depression which doesn't help with the problem. I am now on the immunosuppressant mycophenolate morfetil (MMF) used at the same dose as that used in kidney,transplants. Woud you give us some more details about the tests used to diagnose your ITP and did it come before or after your transplant.also what medication were you given and was enough time given for each to work and did IVIG infusion have any effect? Just looking at your information the problem looks as a platelet production and trying to increase their production with a TPO could give a more positive response to put your count in a "safe place" many of us have settled for this .perhaps these approaches have been tried . Have you considered a second opinion by another consultation haematologist who specialises in ITP treatments .Please let us know as I have met people who are difficult,refractory,chronic cases. Good luck, Dere

  • Hi - I am a similar age. Briefly I had ITP 13 years ago when I was diagnosed with Type 1 diabetes. After a very short time my platelets went up on their own and that was the end of the matter. Two years ago I visited my GP about something else and she did a full blood count and told me I had ITP. I do wonder whether I have had ITP all of that time and not known - as I don't bleed or bruise. Like you I have had various treatments - prednisolone, Cyclosporine and Mycophenolate - none of which worked. My heamatologist wasn't prepared to try me on anything else - probably because of cost so I decided to do nothing. I feel much better because I did have horrendous side effects with the three medications mentioned above. I now try to get on with my life as best I can - some good days and some not so good BUT I AM MEDICATION FREE AND THIS IN ITSELF MAKES ME FEEL BETTER - but obviously this is not for everyone.

    I think, as Kered suggests, if you have not seen an ITP specialist it would probably be wise to do so.

    Please try to cheer up - we are all here for you when you need us.

    Mags x

  • Hi we have been having the same problem with my daughter who is 23 and was diagnosed last April with ITP, she has and still remains refractory to a lot of the treatments that are given for ITP we are lucky however in that we have a great haematologist who tries various things. At the moment she is on 75mg Eltrombopag and Mycophenlate daily, which until she took the cold last week was having some improvement. If you ask to for a referrel to a haematologist who specialises in ITP this may help. Good luck.

  • Hi i am 31 and was diagnosed in august, my doctor tryed everything for me i was so upset and stressed that there was an underlying problem why i had itp i felt so down. After many tests and treatments they finally gave me nplate(romoplostin) Woohoo they shot up from 3 to 207. Its an expensive treatment and i inject myself once a week but worth an ask if you havnt already tryed it.

    Good luck

  • Hi, back in May I had none, was bleeding and had massive bruises, had a 2 week stay in hospital as they had no idea what was wrong with me, and so worried I would fall over and bleed to death!!! It took the 2 weeks for me to get to 27 before they would think about me going home, I now have as many as 110, with no problems , I was on steroids for 6 weeks after, but nothing since, still not sure if I have ITP but I will carry on doing what I'm doing. Good luck with your numbers, which is how I looked at it, just numbers, (as long as your not bleeding) xx

  • Hi, here´s my experience.

    My count was about 10,000. I started with high dosis of steroids. I cut all foods that had flour and sugars, and chose to eat all natural foods. With the help of the steroid, my count boost to 115,000 in 4 days. So I got out of the hospital. On the week I was out, I remembered the doctor saying that food had nothing to do with it, since it´s not the one that caused the itp. So I took 3 cone of ice cream and two portion of bread (in a week). After that, my count dropped to 57,000 (even with the high dosis of steroids). Then I realized that food matters.

    I was with steroids no more than 3 months. I weighted 62kg, and at the end of taking it I weighed 60kg. I started tappering (without the help of a professional) cuz I realized that it didn´t help nor did good at all. That was my first and last time I took steroid. In conclusion, food matters. What you eat and don´t eat matters. Also, no treatment will heal, it´ll just hush the situation for a momment. So I concluded not to take something that won´t help for long terms unless I´m in a very critic situation. Since there is no cure, and treatments worsen your heath, there is no way but to surrender and ask God for help. Either you ask now, or after being worn out caused by those horribles and useless treatments plus its side-effects. God bless you, :)

  • If you want to hear more about my experience in details, you can write to boyeonsong78@gmail.com

    One thing I learned through this, is that I have to be aware about death and be ready for it. I am 34 now, and told God that I'm ready for anything. Meanwhile, as long as I live, I decided to live for Him. Thank You.

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