Nplate clots

[Jazzbo77]

Jazzbo77

I was wondering how many Itp suffers took Nplate but developed blood clots at 55-75k platelets? I did in Oct-Dec 2014 and the more shots I took the more the clots spread until my Dr stopped the Nplate. I found 4 others that had the same thing on Nplate and one on promacta. The Drs stopped each of their treatments. Has this happened to others and why the clots at the numbers the Drs wanted me to run?

[exxxon]

that sucks .. just started promacta 5 weeks ago was 60 k and now dropping as I reduce the prednisone .. hangin at 48k and looking forward to clots >> lol … what about RHOGAM ???????????????? is it a new drug ?? hope they get us a cure !!!!!!!!!!!!! what are clot symptoms ?? stay in touch .. jimmy

[Jazzbo77 in reply to exxxon]

Jimmy if you have no blood clots in your legs after 5 weeks you probably wont have any. I knew something was wrong after the 1st 2-3 shots then at 5 weeks my leg was swollen and 3 clots were found. They kept giving me the Nplate for 9 more weeks and then stopped after they had spread up my leg. They other 3 people I found on the internet had clots in the 1st 2-4weeks in both legs and the drs stopped the promacta or Nplate they were taking. 99% of people never get a blood clot from these drugs unless they reach in or above the normal range of 150-400k. They drug companies deny that their drugs can cause clots at 50-90k in some people. But it does happen and not many ever report it or do the drs.

[exxxon]

jazzbo is my password .. that's strange ??? maybe an omen ??? jimmy

[Kyriak51]

I’ve been on weekly Nplate injections since 2010 without blood clots. This is the first time I’ve heard of clot formation; how long were were on Nplate and at what dose? Have you been diagnosed with leukemia? Where do you live, how old are you, do you have other chronic medical conditions, what treatment regime are you on, what’s your platelet count baseline, how are you feeling?

Sorry for all the questions I’m just trying to understand. Be well Georgia

[Jazzbo77 in reply to Kyriak51]

I have had ITP for 17 years and always ran in the 28k-41k for years until I decided to take the Nplate even though I refused for 6 years. Oct 2014 I gave in and took the Nplate shots but started getting clots after a few weeks then after the 5th shot my leg really became big and several clots but they didnt stop the shots because my dr thought it was just a fluke. 2 months later he check again after using blood thinners to get rid of the clots but they spread up my leg so he stopped the Nplate and in 3 months the clots went away. He said it had to be the Nplate because I was doing fine before that and i was taking nothing different but the Nplate. I searched the Itp groups and found others who were angry because they had blood clots at 55k- 75k while taking Nplate in the 1st 2-4 weeks. One person was taking Promacta and had clots quickly after taking the med. I regret taking that horrible drug like others who were taken off these platelet builders because of clots 1st or 2nd dosage. I was age 58 when I started taking Nplate in Oct 2014. I never had a problem before then plus very little bruising maybe a small bruise every few months and no bleeding at all. Most people can take those drugs but some cant but the drug companies deny that clots can happen in those early dosages.