Just joined the ITP party...

Only to find it's really not that fun is it?

I've been a daily visitor to this fantastic forum since last month when ITP crashed into my life. I basically went into A&E with a rash that wouldn't disappear under a glass (thought it was meningitis) only to be told my platelets - something I'd never even heard of - were dangerously low at 2. The A&E doctor laughed excitedly and told me he'd never met a 2 before, how was I still able to stand? Needless to say I wasn't thrilled by his response.

I was hospitalised for the next five days where I had some platelet transfusions then a round of Ivig. The next day my platelets were at 35, the following, I had another round and they were 65. They were happy with the jump and sent me home. Over the next two weeks my counts grew to 100, then 109. However just this past weekend, some three weeks after treatment, some petechiae appeared and I went in to check my count this monday. They had dropped to 37 so this week, I'm having to go into the hospital every day and have IVIG. After my first bottle, my platelets this morning were 78 so this is a good response I believe. Yesterday after the IVIG, they did a bone marrow biopsy on me. I was surprised as this seems early but the hemo said it'll will tell them a lot. I'm quite a bit overweight and I think they want to see what my possible treatment options are as steroids probably aren't a good idea for me. I also have a fatty liver and some other stuff related to being overweight (hypothyroid and PCOS).

The treatment's mostly gone fine so far although I did have to argue with the hemo who wanted to admit me into hospital on monday even though I was at 37 and feeling fine with no bleeding. I get very anxious when not at home plus I live alone and have two lovely cats to look after. They said they wouldn't start any treatment until tuesday, so why did they want to admit me on monday only to do nothing with me? Very curious.

Anyways, I hope you all are doing well on your ITP journey. Such a relief to know so many others have gone through and though not cured, are managing the illness.

Welcome to the party. Your haematologist does seem to be a bit keen on treatments, bone marrows and hospital admissions. Where are you in the UK?

IVIG is always unfortunately a temporary solution so they will want to try something else eventually. If you want to see what might come next, the latest guidelines are at bloodjournal.hematologylibrary.org/content/115/2/168.full although note that splenectomy is on there but falling out of fashion.

Hi - welcome to the group. Not a fun place to be, but you do learn a lot.

If your hemo can find out a lot from the bone marrow biopsy, he should win a prize. It can rule some things out, but it won't confirm ITP nor will it confirm adequate platelet production.

You seem to have a pretty good handle on this, even though it's early in the diagnosis. Learn as much as you can; it will help tremendously. You got it right - 'managing it' is a good term.

Thank you for the information Ann, I will check it out. Have to admit, the thought of a splenectomy scares me quite a bit so I'm glad to see it's falling out of fashion.

Sandi wrote:
If your hemo can find out a lot from the bone marrow biopsy, he should win a prize. It can rule some things out, but it won't confirm ITP nor will it confirm adequate platelet production.

You seem to have a pretty good handle on this, even though it's early in the diagnosis. Learn as much as you can; it will help tremendously. You got it right - 'managing it' is a good term.

Saw one of my hemo's today (there are a team of them) who said the results from the BMB will give them a much better idea of what my treatment will be and it will confirm whether I have ITP. I thought they had already diagnosed me with it but apparently not quite. They're pretty sure that's what it is but will know for sure when the results come through.

This is what I'm being told anyway, otherwise it doesn't make much sense for them to have done one on me I'd have thought?

Good news is after just two IVIG treatments my levels are 111 today. Had my third day today and they're saying I don't need the fourth day's IVIG which I was originally booked for as they are happy with the result so don't have to spend all day at the hospital tomorrow. I will take whatever wins I can and celebrate!

Hopeful- great news on the counts! I hope it lasts a while for you. IVIG normally isn't an ideal way to treat because it takes so long, is expensive, and doesn't last. Some people are lucky sometimes though.

I don't know why they are telling you all of that about the BMB. It has never been a way to dictate treatment options and it does not confirm ITP. I guess if they feel that they rule out other things then they will conclude that it's ITP. ITP is a diagnosis of exclusion and there is no test to confirm it. ITP Guidelines even state that it's not a necessary test for ITP and is usually only recommended if the patient is over 60 or is about to undergo splenectomy. Many doctors do one anyway though because it's become a routine for them.

This would be good to read:

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

Ann wrote: Where are you in the UK?

Sorry Ann, forgot to answer this, I'm in London.

Sandi wrote: Hopeful- great news on the counts! I hope it lasts a while for you. IVIG normally isn't an ideal way to treat because it takes so long, is expensive, and doesn't last. Some people are lucky sometimes though.

I don't know why they are telling you all of that about the BMB. It has never been a way to dictate treatment options and it does not confirm ITP. I guess if they feel that they rule out other things then they will conclude that it's ITP. ITP is a diagnosis of exclusion and there is no test to confirm it. ITP Guidelines even state that it's not a necessary test for ITP and is usually only recommended if the patient is over 60 or is about to undergo splenectomy. Many doctors do one anyway though because it's become a routine for them.

This would be good to read:

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

Thanks Sandi, i'll read through that thread and bone up (sorry, couldn't help myself). My next appointment isn't for two weeks but I'll be sure to question them on the BMB.

Yeah, I'm curious too. Let us know!

hopeful77 wrote:

Ann wrote: Where are you in the UK?

Sorry Ann, forgot to answer this, I'm in London.

Me too.

There are some ITP Centres of Excellence springing up and several are in London (Royal London, Hammersmith, UCH, St George's) so we are well catered for.

they did a bone marrow biopsy on me the second week only to confirm that theres nothing wrong with my bonemarrow.I had platelet count of less than 4 (machine cant count anything less than 4).
Im not a doc but i thought the IVIG only had a temporary effect, its also strange that if the IVIG is working they still want to do a BMB.
in my case prednisone didnt work and IVIG didnt work, so they wanted to check if my bonemarrow was making platelets, if IVIG works it sounds a lot like ITP.

anyway its great that you have a high platelet count now. Please do let us know what happends, if things work out for you ill look into these ITP centres.

UGh, have horrible headache and feeling sick today. Yesterday headache was terrible until 3am when I fell asleep. Sadly woke up still having it (though not as bad as last night). Taking paracetamol. Suspect it's due to the faster rate they dispensed the IVIG - 130ml per hour I think it was. Had I known I'd feel this bad, would've just told them to slow it down!

If any of you have had side effects like this, how long do they tend to last for? My last ivig was on thurs so I've had two days of this.

The headache is due to aseptic meningitis. Meningitis meaning inflammation of the meninges, the covering of the brain, and aseptic meaning without sepsis, that there is no infection. You just have to wait for the meningitis to resolve as it will do slowly. Hopefully tomorrow you will feel better.

Hopefully they will move on to a different treatment. As you are finding out IVIG isn't a good long term treatment.

Ann wrote: The headache is due to aseptic meningitis. Meningitis meaning inflammation of the meninges, the covering of the brain, and aseptic meaning without sepsis, that there is no infection. You just have to wait for the meningitis to resolve as it will do slowly. Hopefully tomorrow you will feel better.

Hopefully they will move on to a different treatment. As you are finding out IVIG isn't a good long term treatment.

Thanks for replying Ann. It feels so much better knowing you, Sandi and others are on this forum and are advising and sharing your knowledge and experiences. Having this forum takes some of the fear away.

Well it's now 10 days since my last ivig treatment but I'm still a bit headachy, tired and nauseous. Is this normal? Seems rather long for side effects but then again they gave me quite a bit and at a fast rate.

Also, off topic but I've been on daily antihistamines (loratidine) since feb and have decided to come off them since I just don't like the idea of taking pills daily if not absolutely necessary. Does anyone here know if there are side effects to going cold turkey?

No, I don't think it's a problem to stop taking antihistamines.