TOPIC:

21 year old with chronic, recurring ITP, endured ITP through many of my adolescent years (along with awful anemia). Ask me anything!

Hello!

My name is Joya and I am 21 years old and I live in Amsterdam (The Netherlands).. I was just diagnosed with ITP about two months ago. I just finished another three weeks of treatment on dexamethason. Have you ever had dexamethason before? I have a lot of bad side effects and am currently detoxing pretty bad.. Mood swings, sleepy, pain in my whole body etc..

For me it is very difficult to deal with the fact that I have a disease.. I was a healthy person untill 2 months ago and now all of a sudden I have a disease.. Does ITP effect your life on a daily basis? Did you make any adjustments in your life to keep your counts up? Like eating a special dieet or someting? At the moment I am really looking for things I can do to stay as healthy as possible but I don't really know what I can do to keep my counts up except for taking my medicine..

Joya

hello!

im jackie and i was diagnosed with itp about 6 years ago when i was 13 i have tried every treatment under the sun and now my one faithful one which was i.v.i.g. isnt working and now they have me on rituxan which is a form of chemo and now even that isnt working so now next week i am meeting with a surgeon to have a splenecotomy im so scared but relieved at the same time i was just wondering if you have ever discussed that with your doctor my doctor told me that 60% of ppl have a good outcome with it and the other % have a relaps. but im willing to take that chance because i have lost several jobs over this blood disorder. Because i go into to work and i dont like nor act sick at all so when they find me going to the hospital every couple of months they have a hard time believing that this is real.... have you ever had that problem??


well please reply im glad that there is someone i can talk to about this idk why i havent done this earlier


jackie

I thought I'd move this to the adult section since none of you are children.

Jackie - Rituxan can take some time to work - how long since your last infusion?

What are your counts when you go into the hospital?

In my case accepting a spenectomy is an easy choice when all else has failed (been there & done that in 2001). When it's planned you'll receive a couple of shots re Pneumonia and something else which I've forgotten. Depending on your count, you'll likely receive an IVIg to boost your counts for the surgery. If the surgery is laprasocopic it'll be easier on your surgeon but will depend on their decision re clear access to "see" and monitor bleeding. The major item is the lifelong monitoring of fever and QUICK reaction when detected. You likely know spenectomy might not be successful in controlling ITP AND it may be effective but lose control later. Mine was successful for about 10y and recently "failed". Dropped from 300 to 10 over several weeks and now attempting Rituxan but no response after 3 weeks so time will tell.

Not seeking to dissuade you and being an advocate of splenectomy under the right circumstances, you don't mention your symptoms nor count. As frightening as ITP can appear, living with ITP symptoms and counts is very plausible and hopefully you've considered these factors.

I pray it'll help you and you'll find peace (at least as much as possible) with your decision and a successful outcome (controlled ITP) with the surgery.

thanks but ya i never really have too many symptoms except for joint aches and petechia and tiredness and in the beginning i would level out between 30 to 40 but now i havent been above 20 in like 8 months

Living on the "edge" isn't as exciting as the movies make it appear!

hahaha ya lol

i am a 15 year old and i have had itp for 3 years and i have had ivig and it has brung my counts up to 20 to 50 but then they drop rite back down again all the way to 1 and i have been on steriods as well but that didint work ither and now one of the hemitoligest recons to take out my spleen

The only thing I have ever had for my low platelet count was platelet transfusions prior to surgery or to stop bleeding from injury (mainly head).

I have never heard of Nplate and Ivig...are these something you take on a regular basis? What are they, exactly? And I've seen some are on Prednisone/Prednisolone - something I took as an older child to spur on my growth as I was pretty small for my age - again, I wasn't aware this helped with ITP.

Being 35 and not seen a medical professional since my mid-late teens, I seem to have missed an awful lot of developments!

I have had my spleen out in 1994 and it did raise my count more than anything else at that time. 18 month later they crashed again and then on I had steroids and IVIG and the two together worked for me. They kept my platelets up for at least over a year sometimes 2 and twice kept them up for five years.

This year has been entirely different as back at Christmas I had a drop and they gave just steroids due to me wanting to be on holiday and in effect was right for them to do so because my next appointment they were 410. But that didn't last and by May they were down to 4. I had overnight in hospital and sent home with 60mg steroids. They went back up. Tapered the steroids though like in Jan every time I tapered I would get a tiny blood blister. (never happend before). In June sometime had an appointment and platelets dropped to 32. He slowed down the tapering but I felt it was just delaying the envitable and went along with it because doc always knows best dont they :-} I was okay ish until was alternating 5mg steroid and platelets finally went down to 7. I was tiniest bit bleeding in gums so they took me in and stopped the steroids and started 5 day IVIG which is my usual treatment but consultant had been reluctant - as didn't need it he claimed. He was away and I get the feeling it was almost the boss is away the mice can play stuff as they had me on it quicker than could say "Jack Frost" almost. That evening then daytime for the rest of the week. drove everyone in the room silly with its beeping every two seconds. I'd long ago adjusted. roommates were kind of picking on me well not me but that it was my machine making the noise so the nurses gave me permission to buzz whenever it went off. (Don't normally need to buzz for the machine beeping)
Platelets started to climb again and allowed home/back to course I was on at 24 platelets and the following week they crashed again to 5.

Just had 4 weeks of rituximab last week and platelets doing very well on last count at 217. I tapered the steroids down from 10mg now on 5 mg and yep a blood blister appeared two days ago. Bruising. But ignoring it all whilst the 19th as only a tiny one and gone by the evening. Just like before so not sure if out of the woods yet.

For me it the not knowing. If I knew my count was 5 all the time, yes I be tired but fine with that. When bruises appear I been told to ring, but what is the point when they wont do anything if the count is 190 or something.... They only act when it below 10 for me it seems. Am fine with that but it a good half day getting to hospital and back and waiting etc. I wish we had home testing kits and one day that might happen. I can ring the ward any time night and day. That isn't the issue. Just that it takes at least 3 hours getting there, waiting and coming back. So am always kind of relieved when the count is below 10 because I haven't wasted anyone time.

Steroids stunt growth, so I don't know why you'd take that for that reason. Very odd.

"Prednisone may slow growth and development in children. Your child's doctor will watch his or her growth carefully. Talk to your child's doctor about the risks of giving prednisone to your child."

www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000091/

Sandi wrote:

Steroids stunt growth, so I don't know why you'd take that for that reason. Very odd.

"Prednisone may slow growth and development in children. Your child's doctor will watch his or her growth carefully. Talk to your child's doctor about the risks of giving prednisone to your child."

www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000091/

Oh, I have just read that link! I'm now going to request access to my hospital medical notes, since Prednisolone was prescribed to me by them to spur growth. That'll probably explain why I am only 5ft 4!!!! The brown stuff will hit the fan...