Im new!

Hi I'm Amy, I'm from Scotland, Edinburgh.

I am New to here and new to ITP.
I am a 23 year old Female. I was diagnosed with ITP 3months ago after I visited my GP (more forced to go by my best friend a boyfriend if I'm honest)regarding bruising. It got the point where people at work were pointing them out when my arms were covered. Then my boss started asking questions about my boyfriend, what kind of guy is he? Anyway!my GP ran blood tests and arranged for me to come back later in the week for the results. Turns out the hospital were very concerned about my platelet level of 21 and phoned me up to tell me to go immediately to A&E. (way to scare you half to death!!)

After more blood tests my platelets were at 27, and the on call Haemotologist I spoke to that night was keen to just monitor me. however, I had to go back the following day for more tests and to speak to the Haemotologist who I am assigned. She is very helpful, informative and very caring, I think I am lucky to have her and I trust her. She decided that as my iron levels were also a little low, that she was concerned I might become anemic especially while menstruating. So she started me on 40mg of Dexamethisone 4days every 2 weeks. This for me was awful! Not only could I not sleep for 8 out of 14 days, after I stopped taking them i would feel drunk, anxious for an additional 3-4 days. I had no energy and was working 6 days a week, ( I have 2 jobs and I am trying to start my own business, maybe not the best time for this ) I managed to maintain this for a while, but I was so exhausted I eventually cut down my hours.

The first week I took Dex I have a count of 180. The specialist said this was very positive and that I may only need 4 courses. However, the following week the count was back to 21. so more and more cycles were added. I am on my 6th and last cycle now. Over this period my levels never really maintained a high level, the first few cycles they fluctuated between 21 and 25. Once to 48, but the following visit back to 21. Monday was 34. My doctor has decide that I should finish this last cycle to finish the course.

We will discuss the second option on my next visit. She may decide to just monitor me or she may put me on immuno suppressants. I'm sorry i don't remember which. I'm sure she told me but I was pretty stressed so I forgot. Im disspapointed to tell the truth. I naively thought I would just take the steroids and I would be fine. Especially after such a great initial reaction.

Anyway that was a long introduction. Sorry!
I think talking to people who understand will help. I cant speak to my parents, my mum worries about EVERYTHING. My friends don't really understand.

Amy

Hi Amy. We're here to help you any way we can.

First off, that is quite a treatment schedule! It's not often that we see anyone given that much Dex in a short period of time. I can totally understand why you felt the way you did. Dex is hard to tolerate and very people few can. It can either cause a remission or cause counts to jump up and down (and go nowhere), which is what is happening to you.

Dex is an immunosuppressant (steroid), so I'm not sure which med you are referring to for the next treatment. The most common ones are Prednisone, Rituxan, CellCept and Imuran. It would be good for you to become familiar with the typical ITP treatments so that you can be a part of the decisions. You have to learn to advocate for yourself and knowledge is key. Read as much as you can. Each treatment comes with it's own rate of success and set of side effects. You have to try what fits your lifestyle and budget the best.

ITP can be difficult sometimes, but here are some things to know:

A count of 20k and over is considered 'safe'.
Symptoms can be more important than actual counts.
Low counts do not always = death.
You do not need normal counts, sometimes just maintaining safe counts is enough.
Chronic does not mean 'for life'. There are remissions.

If you have not read this, it's a good place to start:

pdsa.org/forum-sp-534/5-newly-diagnosed-a-frequently-asked-questions/8344-excellent-advice.html

Hi Amy,

I am sorry that you are going through this. I was diagnosed in Dec of 2012 at age 27. This organization has been a lifesaver for me. There are others that can completely relate to what you are going through and you may always vent. From experience, itp is an emotional rollercoaster ride and there is always someone here to talk to.

Also, I highly recommend reading about all of the treatment options on here. There is some very useful information so you can figure out which is best for you. There are many people on here that have undergone many treatment options as well, so be sure to ask questions. I was like you and did not respond to steroids. I also did not respond to Rituxin. I have however responded to TPO's. I'm not sure what the names are in Scottland, but in the US, they are Nplate and Promacta.

Welcome to pdsa!
Valerie

Hey Amy,

I'm Kristina. I was just diagnosed a couple of months ago in August as well. My bruises were really bad too when I was diagnosed. I stopped counting at like 20 bruises on my body. Going to the emergency room was pretty scary, definitely. I hope you never end up back there.

It sounds like with Dex that your numbers are jumping around a lot. I wasn't put on dex; I was put on Prednisone, but I know with Dex your counts can jump around a fair amount, but from what I've read Dex combined with Rituxan can be more successful then just Dex alone. Maybe ask your hematologist about that combination?

Good luck! Keep us updated.

-Kristina

OP is a Brit so..

Prednisone = prednisolone
Rituxan = rituximab
Imuran = azathioprine
Cellcept = mycophenolate mofetil or MMF

And the two TPOs (pronounced teepo) or thrombopoetins,
Promacta = Revolade or eltrombopag
Nplate = romiplostim

Mycophenolate is becoming the immunosuppressant of choice in the UK and is supposed to be better on the liver than the older azathioprine but doctors have their own preferences. I doubt you'd get rituximab until you've tried one of those immunosuppressants as it's a heavy duty drug that knocks the immune system out for about a year whether or not it has any effect on the platelets.

You could join the ITP Support Association which is free at the moment but I believe is going to start charging later this year. The annual conferences are particularly worth attending.

www.itpsupport.org.uk/

none of those names rings any bells but it may just be that I have completely forgotten what she said. the next drug is not a steroid and she said it would suppress my immune system for 6months to a year. I'm going on holiday at the end of the month and as I'm newly. diagnosed she doesn't know my bleeding patterns she was uncomfortable with me going. she wanted me to cancel. 2 weeks before my holiday! After this year and all the crap it has brought ITP diagnosis just being one more thing to add to a long list of stress this year I REALLY need this holiday. My mental health relies on it. I'm not exaggerating when I say it is the only highlight of my year.. so she kindly offered (though she's not supposed to cos it's expensive for the NHS) to do a course of haemoglobulin(?) next week to put my platelets into a normal level while I'm away. when I come back. hopefully refreshed and in a much better mental state. we will properly discuss my options. I think this will be to monitor me. as i said before she only decided to treat me because she was concerned I'd become anemic.

its interesting that someone mentioned the platelets jumping around on dex. The visit that I had gone back to 21 after the increase I had to see a different haemotologist. He said but was abnormal to drop again and that he thought I was becoming resistant to the drug.

I am still on dex. On my second day. My face is so flushed I look like a big tomato. Funny looks at work! lol

Welcome Amy!! You have found a great place for support and information about this disorder.

I'm not sure what a 'course of haemoglobulin' is. IVIG maybe? Some people respond to that and some do not.

What is the lowest count you've had?

lol sorry I meant immunoglobulin. no sleep! lol yea that's the one. ummm... I hope it does work for me otherwise don't get to go on holiday the haemotologist told me that "there is no reason why I shouldn't respond' is this not true?

lowest count was 21

Some people do not respond, so be prepared for that. Of course there isn't any reason why you shouldn't respond, but that's true for everyone and sometimes it just doesn't work. Sometimes it only lasts a few days or a week. However, I do think that I would try anything to get counts up so I wouldn't have to miss the trip either. Most people find a way to keep life going despite ITP. Some people also have horrible side effects, such as headaches and vomiting, but there are ways to avoid that. Drink plenty of water the day before and the day of treatment, and ask for pre-meds (the doctor should know what they are).

Drug she's talking about giving you next sounds like rituximab so how wrong was I in thinking that they wouldn't do that straight away!

Where are you going to on holiday? When I was diagnosed it prevented me from going on a weekend away to Ireland that I had been looking forward to for ages. I was gutted but with a count of 4 the doctor suggested I don't go. So I know how you feel.

Immunoglobulin, Ann? Sounds like IVIG, not Rituxan. Or maybe I'm confused about something here.

I'm going to Tenerife. The haemotologisy said that change in pressure while flying could cause spontaneous bleeding though in all likelihood I'd be fine. she said she doesn't know my bleeding pattern well enough to confidently allow me to go. So next wed and Thursday I get IVIG. The count just has to stay up until my tests on the following Monday to be allowed to go. So fingers crossed! when I come back we will decide the next step as for treatment. I don't remember if it is retuximab. I'll find out on my next visit. it's on the 21st.

Sandi, Sorry I have confused things. I wasn't talking about the drug being given now which I agree is IVIG. Amy said "the next drug is not a steroid and she said it would suppress my immune system for 6months to a year".. that's rituximab.

Got ya.