I need some advise for ITP

In 2013 i went to the hospital for a general examination and i was told by my physician that i should see a hematologist because my platelets were 78 thousand, so i went to a hematologist for a consultation and he told that I have ITP and recomended me to take prednesone 100 mlg per day for one week. So i started taking for one week, and i did the blood test and my platelets were 3000, with no simtoms at all, no brusing and no bleeding. I was admited to the hospital that day, i started taking IVIG for two days four

dosese a day but still my platelet were the same and still taking the prednesone , than he recomended to take artificial platelets for two days but still my body was distroing all, than he decided that i should take WinRho and Rituxan for 7 days and still my platelts were the same 3000, then hi ask to do a bown marrow and my body was producing normaly, than i started doing cimotherapy two doses for two days and still no results. Then i was ask to remove spleen, but still no results still platelets were 3000 after staying for one month i left from the hospital then a week later my hematologist proposed me to start taking the Romiplostim , i decided to take it for four weeks, one injection per week than after for week with no results, i decided to stop the romiplostim, as soon as i stooped, my platelets started to increase. After six month i started having severe pain on my legs, i went to seem my hematologist and he suggested me to do an Em ray and i was diagnosed with hip necrosis, because of the high dose of the prednesone which i took for one month. Now i am going thorugh hip replacement for both hips. But since that moment that i stooped my therapy my platlets counts are 120 to 220. I have seen some other hematologist and they think that all the therapies were given very fast. So please if there is any one who did not have and broosing and bleeding , can you please share you story. Because i have been reading a lot and i cant find a patitent who has the same story as mine with no simptoms at all.

11 Replies

  • Definitely the treatment given in a very fast pace, For ITP always require a wait and watch.

  • You were most definately given way too many treatments too fast with no chance to see if your body was responding to any or all of them. Frankly at 78,000 you really should not have been treated at all let alone with 100 mg of prednisone, You could have just been having an acute episode caused by a virus or such and I am sorry to say I think ( and I dont say this lightly) there is a big question over the treatment you have received. The bone marrow aspiration should have been done earlier on as well and perhaps an indium scan to see if in fact it was your spleen destroying the platelets ( at least in my 17 years of experience of dealing with it ), I am saddened and frustrated to hear your story as you have been through so much unneceesary treatment that has now caused you to require major surgery.I am glad you have found a second opinion

  • Hi Kushtrim. Your story is not uncommon. Everybody with ITP acts differently to the medication that is available, but not many are bombarded with excessive doses. Also there are too many haematologists (and other clinicians) who only know about ITP from text books and when confronted with a patient, do not talk to a specialist in ITP. I think you have received sound advice from Mumofwill. Just watch and see what happens. I have lived for 10+ years with a count around 10, still have my spleen and no medication, and lived a normal life style with only annual checks. Good luck in the future and get on with your life as you would normally.

  • Hi sir you eat everything. You eat meat, fish. You have any special diet for your itp.

  • Hi Palash199. The short answer no. I eat all I enjoy and it does not affect my count one way or another. Sorry. At the moment there is no scientific proof of a diet that will help ITP but I understand the ITP Support Association has been involved in funding research into gut bacteria which certain foods might help, but there are no results published yet. I think we will have to watch and wait but be mindful, there are a lot of scams for diets for ITP.

    Hope this helps.

  • I have ITP for 20 years, and my counts have dropped from between 60-80, to now running between 20-40k. I don't have symptoms, apart from the damn tiredness. I know my platelets are getting low when my mouth bleeds without my having cleaned my teeth, and when I start to bruise from my cat jumping on me. Apart from that, I have no symptoms.

    I have had 3 lots of steroids in 20 years, once for an op, once for a virus when my platelets were low, and once when they were low again, but all very short term, so maybe for 3 week in total on 3 separate occasions over the 2 decades.

    The current thinking seems to be that there is no need to panic until they are 10k or lower, or until you are standing in a pool of blood, or bruised all over. I have a blood test every six months, and both in the UK and Belgium they are happy to let me go without treatment unless and until I present with really low platelets, or I feel I need some help.

  • Hi

    Yes it sounds like you have have too much too fast. I have had ITP for over 10 years, my platelets dropped gradually from 80 down to 20-30. I had no treatment at all until I needed a minor operation and had IVIG to boost the platelets for that. Prednisone sent my platelets down to 0 so was discontinued quickly. I still do not have any meds and my platelets go up and down between 30-50 and although very tired at times, I have the odd small bruise and slight bleeding gums/nose but nothing major. My blood tests are every 4 months - only because they are also monitoring my sticky blood.

  • It would seem that the British Doctors have a 'wait and see' approach as a starting point and in America Physicians tend to have a 'treat first' approach.

    I lived with a low platelet count with no problem at all for many years, with no intervention, but my Drs did insist that I report any sudden headaches and to remember that if I have a accident I might need more care than my 'normal' friends.

    Now I have another auto immune disease and I now do require treatment.

    Hope you find the right approach for you

  • Hi madam you eat everything. Did you eat meat, frish? You have any special diet.

  • Hi, I had ITP for a year and a half before I started treatment, once my platelets reached 12. I took Steroid Prednisolone, this did not work but I was on this for 7 months before we decided to try Rituximab, I didn't get off the steroids for over a year as reducing my dose lowered my platelets. After I finished on the steroids I was meds free for 7 months but my count was 9 last week so I started Eltrombopag. I never had any symptoms however as I have had ITP for three and half years now I do get terrible bruising, and extreme tiredness.

    After posting on here myself recently I am realizing ITP gives patients very individual journeys. But the one thing that does seem the same is to give treatments time and platelets time to do their thing. In the past my platelets have gone up to 20, stayed at 20, and as I wasn't having any bleeding it was best to leave them alone. Until now as they have dropped below 10.

    Good Luck!

  • Hi... I've just read your post.

    I have been admitted to hospital twice because my platelet count has been zero... and only when it hits rock bottom does my body display and of the tell tale signs.

    I didn't respond well to steriods (I've been given two)... I also didn't react well to an immune system suppressant. My main treatment has been Eltrombopag... However... I'm still undergoing treatment 7 months after my second episode started... and my platelets are hanging around the 50 to 60 mark...

    I think the information given my medical staff is based on text book examples... but not all of us follow that rule.

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