Hi I'm Vanessa,
I have recently had a dip with my platelets going down to 2 and have now had to change medication. I am now on revolade (eltrombopag) started with the higher dose which seen my platelets go sky high then came down to lower dose and my platelets have came down to 26. For anyone that is on this did it take you a while to find the right dose to suit you and to keep platelets at a good level.
X
I have been on Eltrombopag 5 1/2 years.
I started on 50mg / day, my platelets jumped to 52 in first week then 140 in second week. The first couple of years they jumped about between 70 and 140 and even hit 414 at one point. After 4 years they settled at about 150 so my dose was reduced to 25mg / day.
My count has now settled around 60. I am happy taking a lower dose of the drug, if my count can stay at 60 I will also be happy as I have no symptoms and feel healthy.
Hope Eltrombopag works for you.
Good your platelets are at good level and you can take lower dose. It seems to be working well.now for me x
I’ve been on Eltrombopag for 4 years. I was on an initial dose of 50mg daily and my count soared to over 400. The dose was reduced to 25mg which resulted in my count dropping to around 80, since then the count has steadily risen to around 100-120. It has been stable for the last 6 months. I am in good health, feel OK, with no fatigue and can do more or less anything I like such as going to the gym regularly, Pilates and walking when the weather permits. Hope Eltrombopag is the one for you!
That's great that you feel ok and no fatigue! It seems to be working well now so hopefully that continues x
Hi Vanessa,
I have been on Promacta (Eltombopag) for about 4 years and my platelets still vary a lot from month to month. It does take a bit of trial and error to get the dosage correct, and each person reacts differently. My platelets drop rapidly if my dose is lowered, but it takes a bout a week for my platelets to rise when my dose is increased.
I was fairly stable between 80 and 150 for a long time at 25 mg 2 times a week, and 37.5 on the other five days. My doctor had me drop one pill every other week until I was down to 25 mg every day. I have the 12.5 mg pills so it is easy to make a change to my dose. We are trying to get to between 50 and 100.
Every spring when allergy season starts up, or if I get a cold, my platelets dip and my dose gets upped again for a time. Three years ago my levels dropped to 8 and I had to have IVIG (ick!) and then platelets went up to 600 and we dropped the dose to 12.5 until they fell again to about 60 then upped it again.
In the last two springs I have CBCs more often and have been able to up my dose earlier and have been able to avoid IVIG. Levels dropped to 29 last week and I had some bleeding, so we upped the dose to 50mg every day, but I go again tomorrow and expect that my platelets are up again.
I have very mild headaches from the drug about twice a week in the mornings, but they go away by noon and I don't usually even take a Tylenol for them - I only mention it in case you get them.
Hope that helps a bit!
Hope your platelets has went back up from 29!
Yeah I did get the headaches for first couple of weeks luckily they had stopped now. X
Vanessa, you and I are Eltrombopag/Revolade twins. I had no sustained success with steroids, IVIg, or Rituximab. I started Eltrombopag/Revolade in early February. On a 75mg daily dose, my platelet count went from single digits to 187 in week 1, 150 in week 2, 78 in week 3 and 25 this week. My dosage is 75mg daily and has not changed over this period.
I haven't spoken to my hematologist yet, but I imagine if this trend continues, I'll be symptomatic (blood blisters in my mouth, a slow nosebleed) within a few days and need to talk to her about next steps. I'm curious as to whether anyone has seen a steady drop like me, but then an increase?
Hope your platelets go back up!
Mines were very high then came down to 49 then 26 but now with a mixed dose they have went back up to 93. So maybe yours will increase maybe will just take some time Nd finding right dose for you. X
Hi. I've been on Eltrombopag for nearly 3 years now and it has been very successful after very limited success with a variety of immune supressing drugs. My platelets had sometimes been in single figures and I was often having serious bleeding and bruising symptoms.
My initial dosage was 50mg daily which took my platelets up to nearly 400, so it was halved to 25mg a day. Even that was a bit much so I now take 25mg 3 days a week. That dosage keeps my platelets around the 100-150 mark which is perfect for me. I do get occasional dips particularly when I have had an infection. I have been advised by the team at UCLH that it is a mistake to keep tampering with the dosage every time there is a blip and things always settle down again quite quickly.
Good luck, I hope things work as well for you with this drug as they have for me x
Thank you both so much. It's good to hear stories that offer hope. I do know it's different for everyone and it's good to hear this may not be a fail, but a bump in the road to finding something that manages my ITP.
Hello Vanessa, i have ITP 6 years now. The last 3 months , I take Revolade 75mg per day. My platelets are steady to 50K. I do not have side effects. I am not sure what will happen if i stop taking Revolade. My doctor suggest me to do a splenectomy. I hope that your therapy will work well for you. Wishing all the best.
Thank you, best of luck to you too and good u do not have any side effects. I have now been on eltrompobag for a while now mostly seems to work well for me. X
Hi I’ve been diagnosed with itp since 2009, I’ve been on a slew of meds, they had me on prednisone for years, they I got diabetes, the point is whatever is going on with you as far as the autoimmune part of the disease has to be going on with your gut try taking prebiotics and probiotics try kimchi etc.. to strengthen your gut my counts after removing spleen have now stabilized to 436,000 take your vitamins strengthen your gut, it also keeps you regular! Then see how you do! Try to avoid fast food and soda pop! Hope this helps!
Thanks you, will keep that in mind! X
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