I had my concerns too about consistency ... anyway ... I'm in desperate need of further words of wisdom from you guys as I seem to have got myself in a bit of a pickle ... After 5x50mg, I had a count of 20 but after the 2x25mg and a further 5x50mg, my count was 3. I was then put on 75mg daily. This was 6 days ago and my count today is still 3. I am probably seeing my doctor tomorrow to discuss what to do. I think my options are as follows:
1 - Stay on 75mg and hope for the best
2- Add something to the 75mg dose (e.g. short burst of steroids) to get the counts up
3- Move to another drug (Romiplostin)
4- Something else ...
Just to summarise, in the past I responded well to steroids (giving me 6months-5years remission) and I responded quickly and well to Ritoximab (14month remission). I tolerated steroids badly and it seems the general consensus is that I have had my fill of immuno-suppressant medication.
Any thoughts? I'm keen to have as many ideas as possible for before I meet him! Thank you in advance!!!!!
Thanks Hal9000 for drawing my attention to Margaret K's comments on the balance between platelet production and destruction. I saw that comment too and could really relate to it. I'm just so worried that I've now wrecked my chances of Eltrombopag working for me. I have read quite a few of Margaret's posts and found them really useful especially as I believe that her first experience with Eltrombopag led her to then giving Romiplostin a try before returning to it at a steady 75mg dose. Is there a way of tagging Margaret to ask her thoughts? Thanks.
Sorry to hear you are so low, but take heart; it took about 3 months on 75mg daily for my count to get above 10 but after that it it crept up every month till now, almost 18 months after going back on eltrombopag just before Xmas 2015 , my last count was 112. Am due another count on Wed . For the last three months I've doe 5x 75 mg and 2x 75 mg a week. I think I'll ask for another bone marrow biopsy to see if there has been a change for the better there too. Truly my condition is a complex mystery ( to my consultants as well as me)!
Hi Margaret - So lovely to hear from you!
Thank you so much for those words - the 'take heart' bit did bring a tear to my eye.
Did you do that stretch in single figures on 75mg Eltrombopag alone? Were your docs happy for you to do that? I have to say - I am incredibly tired at these low numbers and I'm worried about the impact this is having on my kids ... In the past, I visited single figures but not for long as treatment usually brought the count up. This is the first time I'm doing such a low count stretch. I really reluctant to take steroids though as I think it will add yet another parameter which I'm not sure would be helpful.
Apologies for my ignorance - when do bone marrow biopsies come into play? My red/white cell count is currently normal ... I was hoping to avoid one of those ... Oh and another question - the 5x75mg and 2x50mg - how are you doing that? Is it 75, 75, 75, 50, 75, 75, 50?
Oh my yes. That '3' is an attention get'er CThom. I am totally outside my experience base here. Just throwing out ideas.
I fear that your count will go through the roof when your immune system changes its mind/chemistry and lets off the destruction gas pedal. I wonder if going back to 50, or the 50/25 split you were working on, and then try to manage the crash with steroids would be a less risky way to approach it. Is it possible to take steroids just long enough to get back into the 50-150 range?
When I get to about 7 I have no bleeding gums or other bleeds so I can live with that count for a while. At 10 I am ok. I had no option but to sit it out as nothing else works for me. I had a biopsy because around Nov / Dec 2015 my red and white cell and platelets were all low. About March 2016 my platelets started to improve- maybe it was the Rituxan I had the previous Nov starting to help, who knows. My red and white cells picked up quicker than the platelets and are now normal. I take the lower doses 2/3 days apart.
Hi there. Many thanks Margaret and Hal9000 for your thoughts - I really appreciated hearing from you guys. I have now heard back from my consultant and I'm staying on the 75s for another week to see if I get a climb. I was lucky enough to also get advice from a London based specialist and their advice was the same. Sounds though if that does not work, conversations involving the word 'steroid' may take place at which point Hal9000 - I will remember your words .
Thanks Margaret for sharing more of your experiences.
CThom so sorry to hear about your drop. ITP can be so frustrating at times. It sounds like Margaret has some good advice for you and maybe you will also slowly creep upwards as she has. Fingers crossed!
If you do end up having to switch treatments, the good news is that there are plenty of people on these forums who have been through it before you and can give you support and advice.
Best of luck and lots of platelets for your next count!
Had a count today of 116 and good red and white cell counts too. That's about 3 months of stability on 5x 75 mg and 2x 50 mg. just saw a registrar who was not for reducing dose. Need to see the boss to discuss that so will wait another month before tinkering, am not as anxious about clots as some of you are. I am off on holiday to wonderful Copenhagen and Denmark anyway so am happy to know I am in a safe place. I wish all of you the same.
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