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It takes about 10 weeks to reach a steady-state response, and about 4 weeks to reach 80% of the steady-state response:onlinelibrary.wiley.com/doi/10.1111/ejh.12725/full European Journal of Haematology September 2016
Eltrombopag safety and efficacy for primary chronic immune thrombocytopenia in clinical practice
You already know that 50 mg is too high a dose for you. Sandy is right: stick with the 25 mg dose and give it enough time to work. Remember, Promacta tells your body to make more platelets, but it takes time for those platelets to grow.www.fda.gov/downloads/Drugs/DevelopmentApprovalProcess/DevelopmentResources/UCM455677.pdf
Figure 10. Predicted median platelet counts following 50 mg, 25 mg, and 15 mg for all subjects for 14 weeks
CThom wrote: Count 13th March - 68,000
I have always been described as 'drug responsive' (a status I am very grateful for) ... and I do seem rather sensitive to this one!
I got my count done this morning and already have the result back. It's 68 which is way higher than I expected (... especially with finding new bruising this morning?!). So in summary, I have been on 25mg Eltrombopag since last Monday after having been taken off the meds as I'd gone too high ... had a count of 2 on Thursday ... I persisted with the 25mg tablets (apart from one 50mg on Thursday before writing my post) and get a count of 68 today. Next FBC planned for this Thursday. I am very grateful to be at this safer count but am surprised that it has happened so soon after my count of 2 on Thursday. I'm conscious that after only one week, I'm nowhere near 'steady state' yet and my count is still probably in that upward early part of the response curve. Seems as though I'll be trying a dose lower than 25mg soon. Any titration tips on how/when to go lower than 25mg? Keen to get the timing right this time so I don't have to come off the drug all together again ... I have found the last few weeks a bit scary - I'd never experienced the too low/too high thing in that short period of time before ...
I'm in very close contact with a very supportive Haematology department but I'm also keen to tap into the depth of experience you guys have with this relatively new medication. Many thanks!
CThom wrote: Today's count 94K
I was really hoping for the count to still be in double digits at this stage (it's still such early days on this dose) so rather relieved that it was ... just
Next count planned on Monday and staying on the 25mgs for now ...
Many thanks for your best wishes momto3boys. Our favourite vegetable sautéed with beans does indeed sound rather nice! I was pleased to see on your thread that you were feeling positive after your recent count. Great news!
A funny thought ... a few years back when struggling with the side effects of immune suppression medication, a good friend of mine suggested I did some positive visualisation exercises to help me relax. So I got in the habit of taking a moment once in a while picturing myself making some lovely new platelets and my immune system only picking stuff out of my blood which should not be there leaving my platelets alone ... The funny thing is that this visualisation process has now become rather complicated on TPOs as it now involves picturing some but not too many platelets being made and my immune system being allowed to eat some up but not too many ....
CThom wrote: Thank you so much for your comments. It's so great hear from people who understand the frustrations associated with being on these meds.
I really don't know why my count dropped to 4 last week. By then I'd been on a steady 25mg dose for 4 weeks (since that one dose I had missed and now of course deeply regret doing so). I have not been ill - all I did different was have a busy and fun Easter week-end! When my count gets to single figures, I have no energy and I get lots of bruising and petechiae especially on my legs. I'm better above a count of 20ish. I am very concerned about what I'm potentially doing to myself taking 50mg one day and 25mg the next. I've been doing this for 5 days now and I'm still getting new symptoms which are telling me that not all is well in platelet world. I'm concerned that I'm probably playing havoc with the platelet production and destruction processes. Promoting one and then triggering the other to do it's worst on the 25mg days (with the whole process delayed by 4-5 days as seems to be the case)! I have asked about a 12.5mg tablet but it does not seem to be available. I'm based in the UK - I don't know if it's different in the US.
I spent 15 years as a research scientist so am probably over thinking the experimental design aspects on this. I suppose it's just about trying something and seeing what happens but there seem to be so many variables at play! As said on these threads, it's about trying a dose and sticking with it which is what I'm so keen to do but I'm finding this tricky when confronted with decision making when at low (so far 2k and 4k) or too high counts.
I apologise for the 'low positivity' tone of this message - My usual humour and bounciness seem to have escaped me for the mo!
CThom wrote: There is an ITP conference in a couple of weeks arranged by the ITP Support Association (In London). I usually attend these events as they are always so informative but I will unfortunately be missing this one as my son will be sitting important exams around that time. I will thus be home baking muffins or anything else which might help a teenage boy with revision on Jane Eyre instead of listening to Dr Provan!
CThom wrote: It's been a while since my last update so I thought I'd join in with the sharing of news today
I tried alternate doses of 25/50mg for 4 weeks but my count never really went anywhere. My last count was 10. The fatigue had really set in and I was finding work challenging. I was also having quite a few bleeding symptoms.
As 50mg seemed too much and 25mg not enough - I am now trying 50mg for 5 days followed by 25mg for 2. Has anyone tried this dosage before? My hematologist is being fab and really supportive which is great. Let's see what happens next ...
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