Hi - saw the potential indium scans that a couple of people have got coming up (hi Luca, Katsim!) - despite the issues I had after surgery (which most people don't have, i.e. the haematoma and infection), I would still have made the same decision, even when my counts were are low as 15 (probably due in part to the infection). Now that my count has gone up to 71, I'm being cautiously optimistic, but I've been feeling absolutely fine and have all my energy levels back, back to pre-ITP normal in fact. I take the half-dose of antibiotics every day (clarythromycin, since I'm allergic to penicillin) and have no side-effects so I'm happy to keep on taking that - can review after a couple of years and see what the prevailing opinions are but I really don't mind taking them, particularly compared to my experiences of prednisolone, azathioprine, IVIG ...
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.
Thanks for the update Rachael, and please let us know as things change (hopefully for the better!). I'm at the stage you were before your Indium screening, with counts of 16K-20K and my doc is now talking surgery. As you know, we don't have the Indium screen in the USA, so if I wanted to do it, I'm assuming I would have to travel to England (unless anyone knows if they do it elsewhere, like Canada??). Can anyone tell me if they've done this and how it was arranged??!!
Nearly 6 months on from my splenectomy and my count is 138
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
Yes - am back to exercising now - and we took out annual membership at the local climbing centre just last week, after about 3 years of doing very little, so things really feel back to normal again - we used to go 4-5 times a week! We are going ice climbing in October (the birthday present I bought for my boyfriend's birthday last november but which we've not been able to use yet) so need to get a lot of climbing in to get some upper body strength back! before then or we'll not get off the ground! I'm back at yoga, went for my first run in months last week, and we go out on our bikes when the weather's OK (which isn't often, if I'm honest - but I did live in Scotland, which explains it!) so I'm hoping my fitness comes back quickly
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 ...
It's now been just over a year since my splenectomy ... took a few months of counts between 16 and 30 but then my count seemed to settle around the 50-70 mark, which was fine for everything except surgery, which I had to have in Feb this year to remove the cataracts caused by everyone's favourite drug Prednisolone. Had 2 days of IVIg, had an amazing response to it, which was unexpected since it had stopped working pre-splenectomy, but just goes to show how your body can change! So, went into surgery with a count of 415 (yes, count 'em, 415!!), surgery went fine and everything healed up quickly. Had a blood count last Thursday, and my count was 213 10 weeks since the IVIg so it's very unlikely to be the reason the count is up there, but the treatment may (just may) have put me into remission ... could be a temporary blip, but fingers crossed it lasts a while!
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
Thanks for the update Rachael; so glad to hear you are doing so well!!!As I posted elsewhere, I did have the indium scan in December and like you, my area of sequestration was mainly splenic. However, I started Promacta last September and the results have been good; no side effects (that I know of?!) and a count that ranges between 40 and 60K. Although my Hemo pushed the surgery initially, he has now backed off somewhat, given the results with Promacta. I'd be interested in knowing if you had any success with TPO's--or other treatments--and what helped you to decide to finally have the surgery?
Hi Luca - good news that Promacta is working for you, guess the splenectomy is there as a backup option for the future if you need it, given that you're a good candidate for it going by the results of your indium scan ... I live in Scotland, and can't therefore have any of the TPOs unless I've either failed splenectomy (which I haven't ) or am not a candidate for it - and I was a very good candidate for it, going by my 85%+ splenic sequestration. So, I don't know if they would work for me or not - romiplostim would be my next treatment, should I need one though.
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.
I understand; I need to be less "Ameri-centric" and realize that each country has their own way of handling medical care, including ITP. While TPO's have been sanctioned for treatment of ITP in the US for about 5 years, we still don't have enough data as to their long term (side) effects; thus splenectomy as the only possible "cure" option is still the top choice for many people. I hope your counts continue to remain high and that this surgery really represents your personal "cure!"
Reading you guys stories about fight this battle is amazing. I have a friend who is going through the battle of keeping his platelets up and it was frustrating for him too. I will refer him to this site so he can join and get some words of encouragement. Currently he is using papaya leaf extract and it works for him. He started it a few weeks ago and it really helps and it uses the organic leaf extract from the company Herbal Papaya their website is just herbalpapaya.com if anyone is interested or can tell a friend but I will definitely refer him to this site so he can chat with people with the similar experience. Remain stronger and positive.
Even my consultant is starting to talk cautiously about a remission ... 2 months ago I posted that my count was 213 - a month later it was 281, and last week it was 327 He's honest enough to admit that he has no idea why my counts are now staying up (combination of splenectomy and a kick up the pants with a large IVIg dose is our best guess!) but is really pleased nonetheless! If all stays good, I'll be getting 2 more 6 monthly checks and then discharged from the clinic, only to return if my symptoms do ...
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
So .. it was the 2 year anniversary of my splenectomy on Friday 13th March (last Friday) and I spent it sat in a transfusion chair being given IVIG. So, I think we can now assume that I'm out of remission and the splenectomy has failed!
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!
Sorry to hear of the dramatic changes!!It's so hard to understand how your counts were so great there for awhile, and exactly what is now destroying your platelets, but those are academic questions at this stage, aren't they?!
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!!
Sorry to hear of your platelet crash Rachael. Romiplostim is a good choice. Once you are stable you can self inject at home which I found made it a great treatment. One injection a week and the rest of the time you can forget ITP. Injecting is easy and I found that injecting into the stomach area didn't hurt at all whereas when they injected me in the arm it hurt like hell! It also may push you into another remission. It does for many people.
Had first Romiplostim injection yesterday - smallest dose to start with (1 mg per kg body weight) and will be adjusted weekly as we go. Only side effects were a slightly elevated heart rate, tingling in hands and feeling a bit spaced out for a few hours - felt fine about 6 hours after the injection so if the side effects don't get any worse than that as the dosage increases, I should be able to tolerate it. Time will tell though!
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!
Count was 25 yesterday, a week after my first Romiplostim injection, up from 6, so staying at the same dose (1 mg) this week. Cautiously optimistic that I'm responding OK, and the side-effects are more than bearable (was quite tired and also felt very cold, so sat working at my desk in the afternoon wearing 3 jumpers and cuddling a hot water bottle!)
Hi Rachael; it's been almost 4 years since I looked at this post, and note that you had just started Romiplastin. I had a Splenectomy two weeks ago after Promacta seemed to have lost its effectiveness (counts in the low teens and below!) but it appears it failed too (last count yesterday as 18). I'm wondering how you have managed on Romiplastin, and whether you have tried any other treatments since. It would be great to hear from you. I hope all is going well for you!!
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