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Splenectomy on March 13th
- rachaely
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Keep us updated with results of the indium scan - it's only really once you have the results that you can make a decision on to go for splenectomy or not. Mine was >85% splenic sequestration so I was a very good candidate for it, hence my comment above about making the right decision based on the evidence I had at the time.
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- luca
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- Sandi
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- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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You can read about the Indium in this thread. It's really long, but this guy (KO), went to the UK to have it done not too long ago. He puts a lot of details in it.
pdsa.org/forum-sp-534/6-general-itp-discussion/10063-new-to-itp-my-story-attached-have-questions.html
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- CindyL
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- rachaely
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After I posted last time with a count of 71, I've had a urinary infection which dropped my count to 23 (probably in tandem with the antibiotic I was given - trimethoprim, which is known for that, apparently). My immune system's been battling valiantly, and 3 days after the count of 23, all my bloods results were better (WBC, neutrophils etc) including my platelets, which were up at 86. Stayed fine for 2 weeks (75 2 weeks later) and another 2 weeks on, I'm at 138. Now on monthly blood tests and soon to be discharged to the out-patient clinic just for monitoring, so 3 - 6 monthly intervals imminent, and even yearly. Hopefully I will soon be able to count myself among those of you in remission
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- Mark
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Mark
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- CindyAnn
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- Diagnosed Jan 10, 2008. Rituxan treatment in May 2009. Treated with Prednisone off and on until 08/23/17 - 12.5mg Promacta as of 10/22/17
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Congratulation on your GREAT count - I hope you have a long long long remission!!!
Cindy Ann
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- jeffrey71
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I am very glad to hear about your progress!
Jeffrey
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- dru
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- I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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Thanks for the great news! I'm sure you are back to your exercising. How about rock climbing?
It is so nice to know you are doing well after all of the ups and downs you have had!
Dru
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- rachaely
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Still adjusting to not having to watch myself all the time - we have a total overload of plums off the tree in our garden and have spent a lot of time pitting them with sharp knives, and did indeed cut ourselves - I bled less than my boyfriend did, compared to when it used to be total gorefest from a paper cut
Good luck to any one else for whom a splenectomy is on the cards - Luca and Katsim were going for indium scans, I think? Would be interested to know what the results of those were ...
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- Katsim
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Just to update - I'm still on a waiting list for the scan. Will let you know how it goes
Lowest count 1. Highest count 207 (ivig) Indium scan showed predominantly splenic destruction. No meds currently, just seeing how things go.
"Life isn't about waiting for the storm to pass - it's about learning to dance in the rain".
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- rachaely
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I'm glad I was patient with things after the splenectomy and just let my body settle down - which took months. I'm not on any treatment, just take my daily half-dose of antibiotics, and am at least as healthy as everyone around me, despite all the bugs going round at the moment. Am back running, swimming and climbing now, and am looking forward to getting as fit as I was before I got ITP nearly 5 years ago. Hoping that everyone else out there is finding something that works for them too
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- luca
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- rachaely
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I guess the main reason I decided to have the splenectomy was that I was a good candidate for it, so although there are risks attached to it, and always a chance that it may not work, I felt quite positive about the decision. Steroids and IVIg had stopped working for me, and azathioprine (imuran) didn't work either, despite 9 months of trying it and feeling awful. So basically, it was the next thing on the list to do once I'd had the scan. I did try living with no treatment, but since I was averaging pretty much zero platelets with no treatment, that just wasn't practical in the long term given all the symptoms and risks, not to mention the restrictions and limitations on daily activities. Even when it looked like the splenectomy had failed (count dropped to 16 a week or two after surgery), I was still happy that I'd made the right decision - I had educated myself about it, talked it through with the doctors etc, and it had been the best option for me at the time, with the opportunity now to have TPOs if I needed them. I have to say though, if I could have had TPO drugs as an option to the surgery, I would have taken that route instead, side effects permitting.
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- luca
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- dru
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- I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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Thanks for updating, so great to hear you continue to do well!
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- jeffrey71
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I am so happy for you! I am smiling ear to ear as I read your post!
Jeffrey
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- Beneza
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Beneza
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- rachaely
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Good luck to all those out there who decide to go the splenectomy route - and everyone else too - we need all the luck we can get with this condition, and I've now had some so want to share it around
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- Sandi
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- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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- rachaely
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My poor immune system couldn't handle all the winter bugs going round and an energy-sapping virus I got in January was the last straw - starting feeling exhausted and the bruises etc started a week later. Got an extra-curricular blood test and it confirmed my count was 3, so I've had 2 lots of IVIG as the docs aren't happy to have me going about the place with such a low count, but my responses are very short lived so it's absolutely not a long term option for me, especially with the side-effects. Anyone else get different side-effects depending on which type of IG they get? I used to just get stiff neck and headaches with Octagram, but last Friday they moved me on to Keovig - have had insomnia, fever, chills, swollen glands, headaches ...
So, likelihood is that I'll be started on Romiplostim when I go in for another count tomorrow (N-plate for non-UK people) as that was the treatment we agreed we'd go for if/when splenectomy failed. Can't say I'm not a wee bit disappointed to be back on the ITP merry-go-round again, but I've had a couple of years of relatively normality, which is more than a lot of people get.
Hope the others on the thread who were going for splenectomies are all doing well - and everyone else of course!
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- Sandi
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- Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Many people have reported that they felt their lives normalized on N-Plate, so hopefully you will feel the same.
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- luca
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As for your next step, IF you can request it, you would really appreciate the greater freedom you get from Eltrombopag (Promacta--taken in pill form) versus the injections involved for Romiplostim. I lknow you are in a different country (Scotland?) and that the medical system differs, but the costs of the two meds should be similar and you may be able to choose the pill option at this stage of the game. Just a thought to consider...meanwhile, thanks for keeping us informed, and know that we are all thinking of you!!
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- Ann
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- rachaely
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The clinic I go to doesn't currently support self-injection but I've proposed the idea quite forcibly, and will continue to do so once I'm on a stable dose. Having to work at home every Tuesday for months/years does not appeal - although my employers are very understanding and flexible, and my job in IT means that I can do most things from home.
We discussed eltrombopag/promacta - given the dietary restrictions, and the risk of liver damage and cataracts, decided Romiplostim was preferable. Azathioprine really didn't do my liver any good while I was on it, and I've still got one cataract left (I got those from prednisolone) so I don't want to make either any worse - may end up on eltrombopag if romoplostim doesn't work though!
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- rachaely
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- luca
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