Day 1 ivig treatment. So scared :-(

Sixteen is a good count. I wouldn't treat at that but would wait to see if it went lower. What will you do?

Thanks sandi - I've sent the info to you. Hope it gets to you ok

Ann - just briefly my history has been that my counts were below 10 for almost 2 weeks after I was first seen & diagnosed with low platelet counts. Steroids did nothing. I had a 5 day Ivig & count went up to 22ish and then dropped again. When I was at a count of 16 that time I was getting bruising from old cannula sites and over the next 2 days my count dropped under 10 again. I had a 2 day fast Ivig and my count rose to 55 a few days later and has now dropped back to 16. I think my haemo is following the trend and assuming that it will drop further. Here's the thing though - this time I have no additional bruising coming up on my old bruises. The bruises I have started spreading last time my count dropped and this time they're still healing - & believe me I'm keeping a very close watch! My toddler head butted me in the chest yesterday ( accidentally may I add!) and I have no bruising, redness etc etc. I also smacked my knee on the corner of a table and nothing. Maybe I'm getting my hopes up for nothing & my count may be low but with no symptoms, but this feels different to last time. I think I'm going to arm myself with some research and discuss with my haemo depending on what my count is today. It's interesting that you wouldn't treat at a count of 16 - it's a good point of reference to know because I think my haemo is treating numbers rather than symptoms - and like I said I have zero symptoms right now (touch wood, cross my fingers & say a little prayer!!).

Thanks for replying ladies

Kat:

I got the e-mails, just haven't had time to get to them yet. Thanks!

I read somewhere online today that "nothing is certain in itp" - wow that's true! After everything I said above, my count today was 18 and after explaining my lack of bruising etc my consultant actually said "let's treat the symptoms not the numbers"!! I could have kissed him! So that's one hospital bed & rituxan treatment cancelled for now!! I'm so relieved - I relalise it may just put off the treatment discussion for a short while but I have been written off work for 4 weeks and we're taking a watch & wait approach whilst I'm still labelled as 'acute' rather than chronic.

So I'm watching & waiting......

Katsim, I'm brand new to all of this also--went thru same things you seem to be going thru last month--nothing has helped so far. I don't like any of the "treatments" doc wants to do, either (surgery/spelenectomy, chemo-like treatments, various other harsh meds), either. I'm actually trying a natural remedy--just took first dose. Maybe I'm nuts to try to do so, but I have had success with SOME other herbal and other "natural remedies," so maybe? (If this interests you, there is a separate thread for these here.) My last count (taken Monday) was 4. Coming off the Pred--that's no fun either. Ugh. You're right. It truly is a roller coaster!

Hi just peachy - how are you doing? It's such an odd thing to go through - the diagnosis & trying to come to terms with the "trial and error" approach to treatment. I'm due to see my consultant tomorrow - have some minor bruising& papura on my legs but also smacked my arms twice today and yesterday and didn't bruise from that so don't really know what to expect my last count was 18 - what are your counts like? I'm looking into the natural remedies - I just don't really know where to start. I'm going to check out the other board on here but also want some local recommendations to get me started with a homeopath or herbalist or someone who is familiar with ITP already.

I'm sorry you on here too - but it's nice to chat to someone else who is new to it all

Eta: I'm the same katsim that started this thread but had to re-register After the recent site update - just in case anyone wonders why my profile says I've only posted a few times

Just a little update...

My count was 11 when I saw my consultant again & because I'm reluctant to try rituxan (because me & hubby want to try for a baby) he said I could try Ivig again - to buy me some thinking time as much as anything else I think. I had to try a different brand because the ones I used previously were out of stock in the hospital and my count rose to 138 3 days after treatment. I'm thrilled because after first Ivig my count was 22 and after the second round I got into the 50's.

Still don't know what I'm going to do next.... Still kinda hoping it all just goes away but I know that's very unlikely

Hi Kat, My count was below 10 for more than two weeks when I first diagnosed with ITP. At that time, I was on high dose steroid for two weeks with no effect at all. My doctor didn't let me stay in hospital and didn't give me ivig. When they eventually decided to give me ivig, I did a blood test before the ivig treatment and the count was up to 40. So the ivig treatment was withdrawn at last minute.

It took a long time for steroid to work on me. I don't know if you are still on high dose steroid or not. Maybe you can wait for a bit longer to see the effect. Also the dose may be important. It seems that 80mg daily didn't work for me, but 60mg daily did work.

Hi Florence - glad to hear your count went up after a couple of weeks on steroids

I was on steroids for two weeks before my first Ivig and am still on them - although only on 15mg now - my consultant seems to think they just aren't working for me. I've been on them almost 2 mths now. Luckily I have very few side effects from them - just a bit of acne and a slightly short fuse! Although if 60mg was the magic number for you - maybe I've still to find mine

My count is dropping again after Ivig (no surprises there). Count of 70 today after 138 this time last week. Consultant seems to think this is a good pattern??? He wants to monitor my count over the next 4 weeks and do more Ivig if necessary - I just can't see that it'll last for the next 4 weeks if it has dropped so steeply in a week. He was talking about a "slow recovery" today but I don't really understand what that means or if its even possible.

Sigh - it seems I'm in for a few months of Ivig and blood tests etc. it's just so stressful - my appointment was at 4pm today and I spent all day distracting myself, trying not to think about blood test results and just ended up being really stressed out and now I'm exhausted from it all. Apart from anti-d (which I can't have as its not available where I am) are there any treatments that anybody knows about which might be longer term & are safe to try to conceive after? Any ideas at all would be much appreciated - I'm currently refusing rituxan because of the need to wait 12 mths to ttc after treatment and its 40% success rate in ITP - it's not a chance I want to take just now.

Any thoughts at all would be lovely - thanks again for all the support so far. It means so much

Kat:

Rituxan is really the only shot at remission unless you have a spontaneous one. Sometimes Rituxan lasts more than a year, so that might be something to consider if you want to conceive. Either that, or you could do IVIG as needed through the pregnancy.