Romoplostin remission

[healthissue]

Hi has anyone experienced remission after having Romoplostin? Came off it two weeks ago count still 240!!! Are things looking up or is it just wishfull thinking. anyone been off Romoplostin for a period of time before platlets falling again

[lc12345]

I believe like with many treatments or even without them, ITP remission can come spontaneously. I am on MMF with 300+ now but still have to stay on it for one more year at least.

[salmagal]

Hi so glad you have remission how long had you been taking romoplostim before coming off it I've been on a dose of 400 for last 4 weeks and that's the steadiest balance I've had since starting romoplostim so hope your remission continues

[rjsmyth]

I have read on the American Forum of people having remission after Romoplostin. I can but hope to be one of the lucky ones as the side effects of the drug (aching muscles/joints) do get me down. I suppose the only way you would know you are in remission is if your count steadily increased whilst taking less and less of the drug. My problem is as soon as my count goes higher than around 100 my Haematologist wants to reduce the amount of the drug or extend the period between injections. I wonder whether a "blast" of this drug resulting in a very much higher platelet count might kick start a remission. Some of the other treatments (pulses of dexamethasone) seem to be based on very high doses for short periods of time. There definitely seems to be a "tipping point" in dosage where the platelet count seems to stabilise as Salmagal suggests - lowering the dosage then seems to cause fluctuating results. I have tried to convince my Haematologist that a lower dose needs to be taken weekly and extending the period out to ten days or two weeks with a higher dose is a mistake. Trouble is a weekly dose for me to be over 100 would be 375ug and that would mean throwing away half a phial of the expensive drug so I am on 500ug every ten days.

[healthissue]

Hi both thank you for your replys i have been on Romoplostin since last October started withhigh dose lowest was 0.24 which is the lowest u can get in syringe. i was up and down for Ages but then on lower dose i was high 200s so eventually we decided to come off it and 2 weeks onim still 200s. I do know a chap on same medicine was doing well then month later went down again but thinking monthly injections would be better than weekly. i know what u mean by achy joints my fingers feel like fat sausages in the morning. fingers crossed for you both 2 itp is a bugger.

[Hidden]

I've used the drug for over three years and am now using a tiny bit (0.12 mls) once every three weeks. If that keeps the count over 50 I shall go to four weekly and eventually stop. I'm hopeful for remission.

rjsmith, you shouldn't have a high count with romiplostim. As it is forcing the body to make lots of new platelets, they are all large and very sticky and with lots there is a risk of clotting, so a count of 50 or so is the aim and is enough. I'm far more scared of clotting than I am of bleeding.

[healthissue]

No such luck this time for remission.back on low dose like yoy camden girl 0.12. Very disapointed but thinking be injecting every few weeks rather than weekly which is better. good luck all

[Robert1959]

After a lack of success on all the other available treatments I was given weekly doses of Romiplostim for about 5 months and did the massive roller coaster ride of trying to balance platelet levels to dosage amounts when suddenly my immune system just stopped destroying my platelets and I went back to a normal count of 200+ without any medications at all. My specialist went to an ITP conference and they were finding that patients who were placed on Romiplostim within 6 months of the initial diagnosis were going into spontaneous remission and perhaps this was the case for me. If so and even though I was considered a severe refractory case as nothing else had worked, I may have had either the acute or persistent version of the illness rather than the chronic version.

I have now been in remission for 3 months and keeping my fingers crossed.

[Kushtrim in reply to Robert1959]

Hi robert i have had the same situation like you all the therapies didnt worked even the romiplsotim so i have stooped everything and my platelets are between 120 to 220 for over a year.