I am at 311,000 platelets on 50mg promacta since 11/23 before that on 75mg Promacta. I am tapering slowly off prednisone. I am down to 4.5mg today Prednisone :).
My hematologist said stop the Prednisone cold turkey as he has suggested I do before because he is confused what is keeping the platelets up. I get that but I want to wean slowly off Prednisone to prevent a platelet crash again. It is day 45 post my every 2 week IVIG and dex pulse since may 2017 when I was diagnosed with ITP and I hope to keep off the IVIG!
I would like to go down to 25 mg Promacta but do not have that dose. Only 50 and 75mg pills. Is it bad to take alternate doses of 50mg one day and nothing the next day until the platelets level out?
Platelet Count
150 - 400 10*9/L
476- 333-236-161-119-123-164-203-266-311taken every 4 days apart- 311 was today.
Thanks in advance for sharing your experience.
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CDmom
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Hi I don't know much about the drug you are taking but if it's a hard tab you could cut in half to make it a 25mg. Your counts are so much better than mine have ever been I've been diagnosed for 3 yrs now had a massive crash just over a wk ago where they dropped to 10 had ivig which 5 days later gave me a count of 213 which is now 139. Phew oh to be a bit normal ay. Good luck
My son was diagnosed in January 2016 on March he was given promacta . He took 50mg everyday. Two months later his count was 350. Then promacta was changed too 50mg for 5 days and on weekends 25 mg. In August he had major surgery . His count was420. As long as his count was 100 he could have the surgery. In September of 2016. The doctor took him off promacta. He said, we need to find out how his count will fall. I just had to look out for the usual sign. JESSE only had blood work once month. Now, only, every three months. Since he stopped taking promacta 15 months ago his count has not gone under 130. It goes between 130 and 133. I hope this helps you. Of. Of course I am always watching out for his little dots, as he calls them,, bruises and bleeding. Good luck to you
I am so happy for your son. My 14 year brother was diagnosed with itp in october. The doctors still havent given him any pills. We are worried because the number the last three weeks was 42 and now it is 12. The therapy that they prescribed is amp. Imunoglobulines. Do you know if this therapy is effective?
I live in the United States of America. My son Jesse is 20 years old and he has cerebral palsy. When he was diagnosed with ITP, he said, why did God give me ITP, I already have CP. I looked up where your country is. Wow you are really are far away. I took Jesse to the hemotalegist a couple of weeks ago and he told me that ITP is no longer called Idopathic it is called Immune thrombocytopenia purpura. How old are you and how old were. You when you got diagnosed?
Thank you very much for your response. My name is ardita I am 22 yrs old , i am not diagnosed with itp. My 14 year old brother was diagnosed with itp in october 2017. It has been almost two months that we are dealing with this. We were really scared of what it could be. Last two weeks his nr of platelets was 34 . Yestarday we found out that the nr. Of platelets is 14. Still he hasnt taken any pills. On monday we will see the doktors again and decide if he should take IVIG . But the problem is that the therapy of IVIG it is not covered from the hospital . This means we have to pay for this therapy. It costs about 18.000-20.000 euros. For us this price is so expensive. Since our country it is not so developed we still have a lot of problems in health inssurance,education etc. The normal salary per month is 300-500 euros. So maybe you understand how hard it is for us to worry not only for the health of my brother but also finding the money for his medication. I Wish the best for you and your son.
Has he tried Prednisone that is first line therapy. The other 1st line per Mayo clinic is 4 dex pulses-40mg dexamethasone for 4 days given 4 different times. Second line is Promacta or nplate. I'd get him on that asap. It makes the bone marrow produce more platelets.
The bandaid approach which only lasts 2-3 weeks is The IVIG to help with serious bleeding issues or seriously low platelet counts like under 10,000 or better yet 5,000 but usually with symptoms. I think the IVIG I took made things worse cause my body just spazed out when the IVIG wore off after 2 weeks. I had a vicious cycle of 1,000-5,000 platelet count every 2 weeks and needed IVIG again every 2 weeks for the past 5 months until I added low dose 15mg Prednisone with weaning off it till now I am on 1 mg of prednisone to get me over the immune system ramping up again and spazzing out after the IVIG wore off.
I am now on 1 mg prednisone and 50 mg Promacta praying things stay stable with Platelets; they are 280,000 today. I get them checked 2 times a week. I am 49 days post IVIG. I hope this helps. Good Luck!
Thank youu so much. Today my brother was hospitalized sindce his nr of platelets deacreased from 15 on friday in 8 today. Doctors still didnt give him anything as therapy since he has not any petechies or bleedings. Tomorrow they said that they will check if they should give him IVIG or not cuz they still dont know . I am really worried about him, i dont know if even we give him Ivig it will be better or worse. I hope and pray that he will get better.
Hi Takari. Thank you so much for your response. Can you tell me more about IVG. If it is a temporary fix it means that in a period of time nr of platelets will increase than will decrease again, right? I thought if u use these , u will not have any more problems.
IVIG did not work for me so I can't give you much info on that. It only raised my platelets for a day and then back down. For some it will increase them for a couple weeks though. There is no absolute treatment that works for all. I take promacta and it works well for me but for some it doesn't help.
When I started to have treatment I had infusions of Ivig and my count rose dramatically, however it dropped about two weeks later. So yes it was only a temporary measure in my case. After trying other treatments I am responding well to Eltrombopag (also known as Revolade and Promacta) with counts over 130. Everyone reacts differently to the various treatments, what works for one may not work f or another. You need to try each one as it is offered and eventually you might find the treatment that works for you. It is not an exact science by any means. Good luck.
Hi Takari ,how is your brother?For me the therapy IVIG did help.Cost a lot of money in USA $140.000,thanks God I have insurance ,so cost me $15.000.Your brother is much younger then ,I am 53 years old. More then two years I taking promacta 75 mg,works for me good.Befor I have only 4 platelets ,and now I have normal 154 to 222 the most I have so far .The 50 mg promacta did keept platelets either Good luck with everything😊
Hi CDmom, I'm also taking Promacta (called Revolade in the UK). I was started on 50mg a day and my haematologist deliberately gave me 25mg tablets to make it easy to reduce the dose. My first reading was 334 so I was immediately reduced to 25mg a day. I then stayed pretty constantly around the 150 mark for a few weeks. The doc then explained that the ideal situation is to be on the minimum dose that keeps the count at a safe level (above 50) in order to reduce the risk of side effects, and I'm now taking 25mg every other day. So to answer your question it is common practise to take this drug on alternate days and the advantage of that is that you only have to worry about the dietary restrictions every other day.
Re the steroid tapering, I'm afraid I have little experience as I only took them for a short time and so I tapered quickly. I have read that the tapering should be very gradual if you've been on them for more than 3 weeks and that the final part of the taper, when the pred dose is at its lowest, should be the slowest.
The very good news is that you seem to be responding very well to the promacta - congratulations !
Prednisolone did not work for me but I tapered off it fairly quick no problem. I have now been on 50mg a day of Promacta (Eltrombopag) for 3 years now. My count has been around 150 for the last 6 months but my haematologist has up to now not wanted to cut my 50mg dose. He said if my count consistently stays above 150 by the next time I see him in March he may reduce the dose to 50mg one day and 25 the next and then monitor any change.
Your Haematologist is suggesting you stop the Prednisolone and continue the Promacta, you want to do the opposite. I would put my trust in the haematologist.
Hi, I have been on Revolade, as Promacta is called in the UK, since February. I started on 50mg but after my count shot up to 487, this was reduced to 25mg, which brought it down to around 300. My haematologist thought that was still too high, so she told me to take 12.5mg. As there wasn’t a tablet that low I had to cut them in half - my haematologist told me that it was no good taking 25mg on alternate days as the body is unable to store the drug. Not sure if this info was correct judging by another post in reply to your question. However, my count dropped to below 50, so I continue to take 25mg daily. My count has now stabilised at around 140ish which is OK with me and my haematologist. I am monitored every 2 months and there are no side effects that I am aware of. If I were you I would wean myself off the steroids - it’s not healthy to be on long term - and rely on the Promacta. I can’t understand why you are unable to obtain 25mg tablets, but you could cut them in half. Good luck.
No, my last bone marrow biopsy was about 18 months ago. That was a routine biopsy as I’d been on NPlate for 2 years. The biopsy was clear. The only reason I started to take Promacta was because it was more practical for me to take tablets, rather than give myself weekly injections of NPlate.
I hope your platelets stay up!!!! Mine were 2282 today. Been on 2mg pred for 4 days went down to 1 mg today for4 more days. Gonna keep with the 50mg Promacta for now.
Opps I meant PLT 280,000 today and at 50mg Promacta and down to 1 mg Prednisone and weaning!
Thanks to all of you for your feedback!
CDmom
My doctor prescibes 12.5 mg Promacta pills so we can adjust the dose easily. I have been taking Promacta since July of 2016 and currently take a total of 17 pills per week, but if my platelets fall (which they do if I get a cold) then we up the dose. In my experience, it takes about a week to see a rise in platelets from an increased dose, but lowering the dose or stopping it can result in a very rapid drop.
My platelets range from 60 to 190 and I have blood work every two weeks. We are slowly lowering the dosage (dropping a pill every two weeks if platelets are stable) to try to get the level to stay safe at about 50. I had to have IVIG once in the last 2 1/2 years when my levels fell to 8 but other than that I've been pretty stable.
You are so kind for replying to my platelet question. Believe it or not I do not have Itp any longer I too adjusted all meds very slowly. Not sure if you read any of my other posts that I came back in April 2017 from Costa Rica with some kind of infection that was causing my body to attack my platelets.
Then I had a fabulous situation where after homeopathic treatment that got rid of the infection in my body of my really bad platelet crashes. My ITP was cured in October 2017.
Then after adding additional homeopathic‘s And slowly weaning off of prednisone and promacta October 2017 to April 2018, my platelets have been stable ( and I am on no Western medicine and no homeopathic‘s) at 260,000 from April 2018 to present May 2018.
I write all this just in case you were on a trip out of the country shortly prior to getting Itp. All of the doctors including mayo clinic told me i did not have an infection and even the homeopathic’s did not find one but they just treated me for it and that is what cured me!!!!!
Good luck and stay stable if not better!
If you do end up using homeopathics, please let me know because I am compiling information to help others.
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