Day 1 ivig treatment. So scared :-(

Hi

I'm completely new here - drove myself to A&E last thurs to find I had a platelet count of 1. This last week has been a real roller coaster and I've been on presnidone (sp?) steroid for 7 days. Every day I've waited for my count to go up but my counts have been 1, 4, 10, 6, 4, 11*, 2, 3*. The starred 11 and 3 were after 2 bags platelet transfusion

They've started ivig today & I've been in hospital since last thurs & haven't been able to spend much time at home with my toddler, who I miss terribly she's only 21 mths old

Has anyone any experience of ivig they can share with me? I so, so want it to work. I'm so scared & I desperately want to see a count of more than 10 - at which point ive been told I can go home. I know this therapy doesn't work for everyone & I know that there are no promises with itp. Has it worked for any of you? How quickly did you know whether it had worked or not? Any real life experiences would be so very helpful to me.

Thank you so much x

Platelet count today is 5. It's gone up from 3 yesterday and I haven't had any more platelets infused. Is this good? Bad? Indifferent??? The blood was taken 14 hours after ivig finished.

Any thoughts??? I'd really appreciate any insight from more experienced itp-ers

Truth? 3 and 5 are pretty much the same thing. Give it a little more time to work. Just know that everyone does not respond to IVIG, so you might have to go on to treatment #3 (whatever that may be).

I know you are discouraged. Hang in there. Based on experience, I can promise you that you won't be there forever. What symptoms do you have?

The last time I had IVIG the hematologist waited 2 days before getting a count. She initially said, "Get a count tomorrow." Then she said, "No, that might be too soon. Wait for the day after tomorrow." So you still might see something. My counts were under 10 too.

Lily

Thanks for your reply sandi! I really appreciate it

I can see that when levels "should ideally" be above 150, 3-5 is pretty much the same. I'm having a hard time with patience unfortunately, but doing my best not to drive myself and/or my nurses crazy!

The thing is that I have pretty much no other symptoms. I have purpura on my legs which I noticed last Thursday but is already fading fast. I have a couple of bruises on my knees, small ones though. Plus a couple of bruises on my inner elbows from all the blood samples they've taken. Nothing else. I feel very well physically.

Emotionally, I'm a wreck, but I guess that's to be expected at this stage

thanks again for replying xx

Thanks lily. I think I crossed posts with you!

They're doing another count tonight & have given me some more playelets before today's ivig (but after this mornings blood count).

Did ivig work for you? What were your levels after 2 days? I know everyone's different - just looking for some real life experience. Hope you don't mind the questions

Katsim:

Counts over 150 are normal counts, but with ITP, sometimes we settle for safe counts, which is anything over 20-30k.

A lot of people are not hospitalized with low counts unless they have bleeding. You might be able to talk to your doctor about being treated as an outpatient. If they can't get your counts up, they can't keep you there forever and would have to release you eventually. Some of us were still working with counts under 5k.

Hopefully, you will get some kind of response from IVIG! I have my fingers crossed for you.

Thanks sandi - I will bear your figures in mind. I am constantly questioning my consultant and he is adamant that I cannot leave hospital until my count is over 10. But... My gut feeling is exactly as you said: I have no other bleeding symptoms and they can't keep me here forever!

If my husband was ok with it I would discharge myself and be treated as an outpatient. However, he is very worried & I don't want to make things harder for him (not just now anyway).

Thanks for keeping fx - I've a lot of people doing the same so I'm hoping positive vibes count for something. x

Update: my platelet count has reached the dizzy height of 13!!! So I can go home *huge sigh of relief*

I know I'm not fixed - but being home will make all the difference to my peace of mind. 3 more days of ivig to go, hoping I can get into that range of 30+, even temporarily.

I'll keep posting updates & I'm sure I'll be researching my next treatment on here before I know it.

This is a great forum - thanks for all the info & answers so far xx

I hope you got to go home. Good luck!

I got home for the night

But count is back to 10 today so not looking great.

This is such a roller coaster

See if your doctor would be willing to try another treatment other than prednisone. I am also curious - if you didn't respond to the prednisone and barely responded to the IViG, what was the basis for the ITP diagnosis?

Sounds like it didn't work. Sorry to hear that. However, there are lots of other treatments, so don't give up hope yet. IVIG is usually pretty temporary anyway.

Lily

Hi all,

I've completed my 5 days of Ivig and after dropping to 10, my platelet count went up to 18 and then to 23. So it's heading in the right direction. I've been discharged from hospital and have an outpatient appointment on Thursday to check my platelets again. So I'm hoping and praying they go up again.

Kittie - they have done full bloods and there's nothing else amiss other than a low platelet count. All white blood cells and other bits are doing as they should. They have done a bone marrow biopsy and have tested for every virus under the sun, but so far I have nothing else showing up in my tests. My working diagnosis is ITP because they have no idea what else it could be. My bone marrow is working well and making lots of platelets, but they are being destroyed somewhere in my system, hence they think its an immune thing. There's no talk of other tests at this point - does this sound like ITP or something else? Just curious about what you think as you asked

Lily - thanks for your support I've read that Ivig is pretty temporary, so hopefully I can discuss some other ideas when I see my consultant again.

Does anyone know if a count of 23 is ok after 5 days of Ivig or would it typically be higher than that? (I know we're all different, just wondering)

Thanks so much xx

Katism:

Ideally, you should have had a much higher count after 5 days of IVIG. Your response was minimal and I'd question going through that again since your counts didn't really go up that much. Of course 23 is better, but not great.

The bone marrow biopsy does not prove that there is adequate platelet production, but most doctors think that it does. Most people with ITP have both destruction and production problems, especially those who do not respond well to treatments.

Thanks for responding again sandi. I thought 23 was still pretty low & although I was so happy to be discharged from hospital - its now only 2 days later & I'm getting some fresh bruises from old cannula sites. That can't be good can it? *sigh*

I'm seeing my consultant tomorrow so will see what he thinks about the production vs destruction problems.

I can't believe this has all happened so quickly I had counts last year that were all perfectly normal and now they're completely shot - totally out of the blue.

Has anybody else not responded to either prednisolone or ivig? Or I'm I in the minority??

Thanks

Kat:

Honestly, most doctors are not aware of the production vs. destruction problems and that it cannot be detected with a bone marrow biopsy. That is not what they were taught in medical school and has only been proven by recent research. Luckily, we are privy to that information here. I can provide cites if you want them.

Oh, I'd say about 40% of people with ITP do not respond to those two treatments. It happens, and my theory with that has always been that those people have more problems with production since those two treatments deal with controlling destruction.

I'd love some cites if you could please sandi - thank you

I saw my consultant yesterday and my count was back down to 16. My consultant has booked me in for 2 days intensive ivig at a higher transfusion rate. He gave me some research suggesting that some people may respond better to this following an initial 5 day transfusion. Any experiences??

My consultant also emailed me a lot of recent research into first line treatments for itp so I can see where we're up to and what may happen next. He's hoping the fast ivig *might* keep me out of hospital over christmas and then we might be looking at Rhituximab (sp??).

We did briefly discuss production vs destruction and then he agreed to send me the articles so I need to have a good read of them all. But for now, back in hospital, waiting for fast ivig & hoping it works. Keeping everything crossed & saying some prayers.

Kat:

I've never heard anything about fast IVIG infusions giving a better response. That doesn't mean it's not true though. I have heard that side effects can be worse for some people with fast infusions, which is why they are usually given slowly. Hopefully, it can sustain you through Christmas, as he says.

Rituxan is probably a good next step, and if a person responds, it can lead to a remission. It generally lasts a year, but can be shorter or longer for some people.

I'm glad your doctor sent you some recent articles. If you can, post them here so I can see what you have. I am always interested to see what doctors are reading.

I will post some articles in a few minutes.

These should keep you busy:




www.pdsa.org/forum/6-general-itp-discussion/11698-bone-marrow-biopsy-and-production-answers.html

www.nplate.com/patient/understanding-itp/causes-itp.html?WT.srch=1

bloodjournal.hematologylibrary.org/content/115/2/168.full

www.hematology.org/Training/Trainees/2768.aspx

bloodjournal.hematologylibrary.org/content/103/4/1364.full?sid=7337dc7a-f65d-4998-8a18-3071d265e425

bloodjournal.hematologylibrary.org/content/113/26/6511.full?sid=7337dc7a-f65d-4998-8a18-3071d265e425

bloodjournal.hematologylibrary.org/content/116/22/4388.full?sid=21e7149b-470b-4957-baa5-743d95ad75f4

bloodjournal.hematologylibrary.org/content/118/24/6232.full?sid=21e7149b-470b-4957-baa5-743d95ad75f4

bloodjournal.hematologylibrary.org/content/118/16/4297.full?sid=21e7149b-470b-4957-baa5-743d95ad75f4

Hi i wanted to give you my imput on ivig and say hi and hope you feel better. My first ivig was six years ago when i had my platelets feel to 6. They gave me ivig and it flew up to 228 after two days of treatmen. It stayed away for six years but i must point out that after research its actually rare for that to happen as it usually dips again. Second time: feb this year: it went down to 6 again. I asked for ivig treatment as this had shot it up again and the doctors obliged. Threw it up to 228 after few days but this time after three weeks it was back down to around 20 boo. I was so mad i was sure from the first time that it would be the same. My ex doc decided to put me on steroids and i agreed as maybe it would keep it up. I did this for a month but it hovered around 20-30 i told him in no uncertain terms did i want to stay on steroids as they are not good long term and they made me slightly loopy. He told me there was no other treatment and that after six months we would maybe look at spleenectomy which i had decided long ago that i wouldnt do that. He wasnt great with me and i knew there was much more treatments available so i started looking around to see if there was an itp specialist in london which there was. I met with him and they tapered me off the steroids. They said they would put me on an immunosupressant called cellcept(mycophenalte mofetil) which although it would take a while for them to work it was a better alternative to steroids because they arent really great for you long term. Anyway he said my count may dip abit so at 10 i asked them to give me ivig again they went up to 100+ but went down again. I stayed on cellcept for six months, they started to work after three months and slowly my platelets went up from around 40. I came off them and have been off them a while and have platelet count of 105. My point is that always look for different treatments and get someone who specialises if you can. I have to say Cellcept was good but it depends really. My advice is to get the best you can for yourself and if you feel that some treatments arent as good as others you should discuss with your doc. Hope you are doing better. Also make sure thy test your blood for EVERYTHING. its usually standard i gave like 20 vials of blood to test for antibbodies and all that.

:side:

Thanks sandi! That's a fab list & will def keep me busy lol!! I will post the articles I have when I'm home and back on wireless so you can see those too.

So far so good with the ivig - had 6x200ml bottles (10g ivig each) over 7 hours yesterday and I'm still feeling ok. I'm drinking water like its going out of fashion to try to stop dehydration & headaches and so far my only side effect is a slightly achy arm. Not too bad all in all & I'm not complaining!

Ashybobashy - thanks so much for that detailed response. I really appreciate the time you took to reply I will be looking up some different treatments and will def find out more about the cellcept you mention. 6 years is a pretty impressive remission! I'm hoping for 6 days lol! It's good to hear that other things do work - I'm having mild panics occasionally that nothing will work for me - I think it's just my lack of patience that leads to them. In a world where google can give an answer to almost everything, trial and error plus hospital stays seems like a different world

Ladk1 - thanks for the info about your husband. I hope he finds a treatment that works more long term very soon. My last ivig resulted in platelets in the teens-20's for 2 days before diving again - so ill probably be in the same boat looking for something that works

So far so good! Keep us posted!

Yesterday's count was 32

I'm very grateful that I will likely be at home for Christmas and I'm hovering in a safer range.

I'm a little disappointed that the fast Ivig didn't really work any more than the slow 5 days. Except that it has gone up much faster, just not much higher. And I've one heck of a bruise from the fast infusion rate that initially spread along the vein up my arm!! Otherwise, no side effects to speak of though so I was pretty lucky in that respect.

I've had a test today so will see what my count is today, I'm hoping it will be good enough to last until Thursday when I'm back to see the consultant again. Hope you all have a lovely Christmas and I'll be back to update again soon xx

Well it seems I spoke too soon. As I lasted posted my count was 32 after treatment on Sunday, it was then 43 on Monday and 55 yesterday (Thursday)!! So it seems the fast Ivig has done something different - it was a different batch number to the first lot I had, so maybe different immunoglobulins from different people might have had an impact???

I'm a little confused though - my understanding was that Ivig *should* raise platelet levels fast & high for a short term fix. Mine seem to be going up slowly - any thoughts as to why this might be? I'm so pleased its working, just curious about why a person might respond in this way.

I saw my consultant yesterday and all my tests came back clear so my diagnosis is ITP with nothin else underlying. He had done a megakaocyte (sp??) count from my bone marrow biopsy right at the beginning (when my platelet count was 1) and I was found to have a high number of them so he thinks the immune response is the main reason why I have a low count. He was pretty sure it's a destruction not a production problem. Has anyone else had this count but still thinks there is a production problem? Am trying to get my head around all your research sandi and apply it to my own results.

Hope everyone had a lovely holiday period xx

Kat:

Everyone responds differently, so your reaction wasn't unusual. Some people get very high high counts that last a few days or weeks and others get a lower response that can last days or weeks. No rhyme or reason behind it.

As for the BMB, in one of the links that I listed, it doesn't matter how many megakaryocytes a person has upon BMB. The problem can still be one of production along with destruction. This was written by one of the PDSA medical advisors.


"I dont understand why anyone would use a bone marrow test to determine whether a patient is a candidate for Nplate or Promacta. My guess is that the doctor making this statement believes that if the bone marrow is normal (normal number of megakaryocytes) or is consistent with ITP (normal or increased number of megakaryocytes) that this shows that the bone marrow is making an adequate number of platelets and that production is therefore "normal" and that the patient is therefore not a candidate for a class of drugs that increase platelet production.

Nothing could be further from the truth. A bone marrow is a static sample and does not tell the doctor whether the normal or increased number of megakaryocytes is actually producing platelets. A large number of studies over the past 90 years have suggested that the normal or increased number of bone marrow megakaryocytes in the ITP patient bone marrow is not producing platelets adequately. Rather these megakaryocytes are probably being attacked by the immune system and undergoing programmed cell death (apoptosis) and die before they have a chance to make platelets.

The bone marrow test cannot be used to determine whether Nplate or Promacta will be effective.

With regard to when to do a bone marrow biopsy, the new (and the old) guidelines suggest that in adults it is rarely recommended except in those who have not responded to initial therapies, those over 60 (to exclude myelodysplastic syndromes) or those contemplating splenectomy. I rarely see a need to do a bone marrow biopsy in most of my patients except for those who fail to respond to initial therapy and those older patients who might have MDS (again reserving it mostly for those who do not have a robust response to initial therapy or those who might have other cytopenias). In a patient who has responded well to initial therapy and will then go on to splenectomy, I dont usually see a need for a bone marrow."


www.pdsa.org/forum/6-general-itp-discussion/11698-bone-marrow-biopsy-and-production-answers.html

My count is back at 16. So it looks like I need to try something else. Was gutted yesterday when I got the count, I had hoped to get back to some kind of normal. But on to the next thing I guess...

Sandi - I can't seem to post my articles via my iPad. Is there anyway of emailing them to you? Is there a pm system on here?

There is. I sent you my e-mail address. I think if you go to "Private Messages" in the upper right corner, you will get the PM. I don't use it much, so I'm not experienced. :ohmy: