New member

Hi, I have just joined the PDS Association as I was diagnosed with ITP about 6/7 weeks ago. My symptons appeared to be very similar to other members. Blisters in the mouth, large brusies under my arms, rash around my ankles, etc. Strange thing was I did not feel unwell. Anyhow, about 4 days later I decided to visit my local Dr, who decided that a Blood Test should be done. I gave some blood and went home to continue the DIY i had started earlier that day. 5 hours later, the Dr called and asked me to straight to hospital as my platlet counts was just 8 ( should have been between 150 and 400). I went to hosptial in a very nervous state as all the Web sites I had looked on had pointed Lukaemia. At the Hosptial more blood taken and 2 bags of Platelets via IV and 80mg Predislone. Haematology guy confirmed ITP anbd not the Lukeamia. Over the 7 days I stayed in Hospital my levels went from 8 to 177. Blood tests for EVERYTHING proved negative. Whiute and red cells, OK, CT scan, X rays and Ultrasound scans - all came back clear (thank god).
So, Pred was reduced to 60mg for 2 days, then 40mg for a week just as I visited my Specialist who then told me my levels had dropped down back down to 48. Well my heart suck as I thought things were on the mend.
I was told it was still early days and we should continue as previous weeks.
So, during the past 4 - 6 weeks I have been in and out on a weekly basis having my platelets checked. I am levelling out at present 58 - 62 ish and currnelty on 20mg Pred. I am due another check in on Friday this week after a 2 week gap whilst my specailist took a holiday.
I have been trying to watch the " do's & do nots " in terms of eating an drinking. I find the Pred makes me moody/snappy and a bit depressed. I dont appear to have too many side effects, apart from developing Acne on my back as a result and also some mild buring type feelings inside my mouth and on the back of my arms.
I loved my sports here in the UK ( rugby man) and now find that I cant do any contact sports again.
I worry about my health and wonder what will come of all this - hence why I thought I would join the forum and chat with people who will have been through the same if not more than I have.
Any input/comments are welcome.

Hi Craig. Your story sounds very typical of what most of us have been through. I would like to add that the burning in your mouth could be thrush - you might want to ask your doctor about that. It's treated pretty easily.

Good luck with Prednisone; I hope your counts improve soon.

Courage, Craig. It's good that you feel well and that you don't have enormous problems with the prednisone. A few things I've learned along the way (including a lot from this site):
Don't have unrealistic expectations about cures.
If you don't have symptoms, don't worry too much about numbers. Many of us do fine if our platelets are in the 20Ks.
There are really scary blood disorders; you don't have one of those.
It's a real advantage to have a hematologist who isn't an alarmist.

I went through a huge depression when I found out I had this. I worried endlessly. It started to really affect my life. All I can say, is it gets easier with time. Stay informed. Sometimes, I send articles of note to my doctor! Check these forums, lots of advice and encouragement here. And if you go to an oncologist office like I do, look around and remember that it could be much much worse.

I agree with the last person - you really do count your blessings when you get seen in oncology. I too just wish there was more that I could do to change the counts and not have to rely on medications to do it for me. I think it would be easier to take if there was a reason behind what is happening to all of us, I would think that it would be easier to treat if you knew the root cause behind the occurance. I also wish there was an easier way to tell if my counts are down. Only indication that I had that my counts dipped was that I gave myself a black eye just by rubbing it. Good luck.

Hi Sandi
I have a meeting this Friday with my consultant so I will talk to him about the possiblities. It's not red or swollen but the same feeling is also in back back of my arms, which is strange. I see today's Health News that they have approved a new drug the increases Platelets. quote:

1st December 2010 - The National Institute for Health and Clinical Excellence (NICE) is recommending romiplostim (Nplate) for the treatment of chronic idiopathic (immune) thrombocytopenic purpura (ITP) in some patients.

Is this something already available in USA?

Hi Karen. I agree that perhaps I should learn that quick cures are not around and I am going to have to deal/live with this. I just feel emotional and think what did I do to deserve this. However, like many of the others say, ' it could be a dam site worse' and thank god its ITP and nothing more.
Strange thing is the reality of dealing with situations which crop up. example is today I was doing some DIY and caught my index finger in the Jig Saw ( what a wally) total accident and then ' Panic ' set in as I have not had a medical issue since being diagnosed. Thank fully it did not bleeed for long and has stopped. (very painful though).
Have a clinical meet up with me consultant on Friday, so unless soemthing esle develops, I will discuss with him. Crikey - you have to laugh at me in panic mode but at the same time you want to cry as its not normal.
I think this site will help me cope with the situation as I am talking with people who know what I am talking about. Hard to explain it to friends and famliy as they pretend to understand.

Thanks Lorna - Your comments are much appreciated. The depression is something I will have to deal with and I guess it will get better with time. Funny thing, your absolutely right re the clinic. I sit there thinking and looking around knowing that I have this 'tricky' desease ( as my consultant calls it) and think to myself, what IF. As per other comments, I think this web site will be good for me to help come to terms with this change in life.

Craig:

Yes, NPlate is available in the US. It's been around for the past few years. It's a maintenance drug, meaning that it will not cause remission and you have to keep getting the injection once a week for it to work. It has been great for many people who don't respond to, or cannot tolerate, anything else.

Thrush will usually cause a white coating on your tongue if you have it. When I had it, my tongue felt like it was on fire.

Craig,
Along with Nplate, there is also Promacta. Both are relatively new drugs, both are designed specifically for ITP, both increase platelet production, and both are expensive (however, my insurance covers all but $60 of the just under $8,000 per month cost).
I chose Promacta because it is in pill form and I don't have to get an injection every week.
Like any ITP treatment, these two drugs work for some but not for others.
Hang in there, it gets easier to wrap your head around things....eventually.

Hello Craig, As you can tell, we're all glad you found us. I know this place has been a wonderful thing for me. Your right is understanding that even though friends and family nod in agreement and try to encourage you, they just don't get it! As, I'm sure, it is with any disease/disorder than anyone has! It sounds like the prednisone is keeping your counts up pretty well. 58 - 62ish are livable numbers. I have had NPlate. It did it's job well in keeping my numbers up but I didn't care for the side effects of severe bone and joint pain. It's different for everyone though. First "rule" for itp'ers.....everything is different for everyone! I then had Rituxan and it has kept my numbers in a livable range for 6 months now. Let us know how your appt goes tomorrow.

Hi Sandi, Well my latest clinic was OK.( I guess) After another 3 weeks on the Pred before I went to my clinic, it appears my levels have stayed the same. 57 this week and it was 57 just under 3 weeks ago. So...............my Dr says " take 15mm one day and 20mm the next, come see me on Xmas eve ".
So after being diagnosed with ITP in early October, is this it? Is this where my levels stay? Does anyone know what happens next or how long this goes on for? I keep hoping that the Dr will say that we need to try something else. I need to thank God that my levels are a dam sight better than the other folk on this site. Crikey and I worry at 57, so only God knows how the others feel with counts at sub 30 or even 20.
It feels like a bad dream and I just want to wake up from it all.
Still not sure on the thrush. Inside my mouth is just pink, as normal, no white fur or such. Dr reckons it's not Pred either. So, I've still no clue and I still getting the burning feeling.

HI, Well my latest clinic was OK.( I guess) After another 3 weeks on the Pred before I went to my clinic, it appears my levels have stayed the same. 57 this week and it was 57 just under 3 weeks ago. So...............my Dr says " take 15mm one day and 20mm the next, and so on, then come see me on Xmas eve ".
The Nplates appear to be latest news here in the UK as it was flashed up on a Medical web site. Perhaps this would be an alternative for me in time.
If my counts stay at 57-60 ish for next 2 - 3 months, does anyone know what happens next.
I'm not sure if I can cope with Pred for the rest of my life.
Will they try something else?
What are the chances of my condition changing to a + and or to a -?
Getting a full up to date body service made me think ' What the hell caused this'.
ALl my vital organs are working fine, red and white cells fine, no Virus/deseases. No cancers. CT scan fine, X rays and Ultrsounds fine and blood tests all done and clear.
Just can't get my head around it all.
I worry each night before I go to bed and not sure what I can do to help myself.
I think I just need a more understanding Dr who will assure me a little more.

Well my latest clinic was OK.( I guess) After another 3 weeks on the Pred before I went to my clinic, it appears my levels have stayed the same. 57 this week and it was 57 just under 3 weeks ago. So...............my Dr says " take 15mm one day and 20mm the next, and so opn etc, then come see me on Xmas eve ".
Like in some of my other postings, I feel I just want to wake up and it's all been a bad dream. Well I had better get use to it becasue it appears it wont be going away.
Does anyone know what happens next?
Been on pred since October and getting fed up with the results not changeing ( Though I should be greatful reading about other people's conditions on this site.
is 57 -62 the best I can expect?
I read that some poeple and their conditions change after possibly a year.
This then puts you into a class of either Acute ITP or Chronic.
Some people go into remission andnever see it again, and some people get it back 10 years later.
I just cant get my head around it all.

Craig:

No, 57 to 62 is not the best you can expect or hope to achieve. However, sometimes with ITP, the goal is "safe" counts and not "normal" counts. You definitely have that right now.

When you get to the point that you cannot tolerate Prednisone any more, that's when you talk to your doctor about an alternative treatment. No one can stay on it indefinitely; the side effects are too nasty for most. It would be a good idea to read through the treatments page and become familiar with them, then you can make suggestions to your doctor. It's okay to do that. You'll find that you have to be your own advocate. We can also help you with that when you are ready.

Acute vs chronic - sort of scary and misleading terms. Being diagnosed with chronic ITP does not mean you will have it forever. ITP can go into remission at any time, before a year, after a year, three years, ten years...everyone is different. Chronic basically means that you've had ITP for more than a year. Just look at it that way.

Why? Not an easy answer. Why are people diagnosed with any autoimmune disorder? The answer can be as simple as genetic predisposition plus a trigger. You inherited some bad genes and something came along in life and jump started it. For some people, it's a medication, an illness, stress, etc. There are 88 autoimmune disorders and most people agree that if you have to have one, ITP is not the worst one there is. It can be managed for most and the life span is normal. In time, it just becomes something that you learn to deal with. I know that is putting it simply, but it's not as devastating as it first seems.

You'll be okay.