Hello everyone
Im 28 years old n diagnose ITP after dental surgery.. When i had my first cbc after dental surgery count was 2. after 3 months of prednisolne and immunosuppressive treatment counts are same. Now i tapper off steroid .
Luckily i dont have any kind of bleeding. just my legs get pain . very strange kind of pain. Like i have to press tight my legs to make it vanish.
My dr suggest my to remove spleen but i'm not agree for it. Had my bone marrow. result will be come next week,.
I just want to know, cant we live with low counts. if have no active bleeding?
n what is revolade medicine is? It is hell expensive and Dr are not sure about side effects
any one who has used this medicine?
Thanks
Hi, I am 33 and was diagnosed with ITP after bruises appeared on my legs and bleeding from my mouth and ears, my count was 7, steroids brought them up slowly over the next 3months to 53, I am now in the process of tapering off the steroids. I have been taking revolade for 4weeks and although I don't know much about any short/long term side effects, I can say I felt better very quickly, bruises stopped appearing, and my count has been between 163/174 since taking Revolade.
Question is that we live up on these medicine forever? . is there any permanent solution ? what if you stop revolade n counts again comes down?
I don't think there is a permanent solution unfortunately , I've been told people can lead healthy lifestyles on low counts as long as there is no active bleeding. The doctor says he will keep me on revolade for the near future and eventually I will come off them, I have no idea what the next steps would be if my levels fall again. I'm new to all this, for me personally steroids only helped slightly and the side effects have been awful, revolade so far hasn't shown any obvious side effects and I feel much better( although I've read somewhere long term it's bad for the liver?). I hope you find the right treatment than suits you.
Only to raise platelets is not a big deal. what matter is keep their level consistent . which is unfortunately cant be happen with steroids.. yes my liver is really disturb . Lik my ALT Is 95 ( normal value is 45) . also my kidney also affects.
Revolade is instant platelets generator and has side affects too
i just pray all of you get rid of all these medicine and live life happily.
God bless you!
Also its not easy to stop these steroid . Lik in my case it takes a month to . Today is my last day . From tomorrow i aint take any pill
so lets see whats happens
cheers!
I have been on Promacta which is another name for Revolade. I started in February of this year. I was at 63 at the time but I had been on Nplate and had good success and needed to just drop some before starting Promacta. I started at 25 mg a day and over time went up to 239. If you are over 200 you are supposed to drop your dose so I went down to 12.5 mg just 5 weeks ago. I went from 239 down to 104 in the first month but then a week later I was at 141 which was just last week. I have had some bad side effects but they didn't last long so if you can just put up with it for a while it will go away. I do still get heartburn but if I take Prilosec it is under control and not a problem. I feel great taking this and my numbers are good and starting to go up on the lowest dose. I would try it, absolutely before getting my spleen out (wouldn't work for me as an indium test showed). It doesn't work for everyone but it works great for me and like everything with ITP, we must pick our poison or go without and see what happens.
Good luck takari!
but in my case counts are remain <10,
i wont prefer to remove spleen. as i get my spleen . ultra sound . it is in perfect condition,
Where did you have the indium test done? Did it show that your liver was destroying your platelets?
No i just have liver test . LFT , in which my atl n ast values are high. thats means steroids are affecting my liver
I had mine done at Crouse Hospital in Syracuse, NY. They will not do them but they did it for my hemo because they have a strong working relationship. It showed I am mixed sequestration so both my spleen and liver destroy platelets. A splenectomy will not work for me because my liver will just take over the job. Its all good because promacta works well for me.
what you have done for your liver? like what treatment is there if liver destroying platelets , n how come you know this . that liver is destroying ur platelets
Google Indium test, which shows where the platelets are being destroyed. If it's in your liver, then a splenectomy is useless.
I think this is some latest tech . Unfortunately not in my country i have search this
I've been aware of the Indium tests for a couple of years, if not longer, so it's not 'latest tech' by any means.
In India it's very costly medicine. Which country you live in?
Im from pakistan . and its costly here too.