Dear Kim,

Wishing you a very special day full of all the things you love
:laugh: !

Love Vanessa

Thank you Cindy! Her platelets were 132 today so they are not dropping the way they were. Other than the bruising, she has fatigue. I know when her platelets get below 90 she usually gets petechiae and very fatigued. She also gets really cranky.

I talked to the pediatrician today and she is getting us some names and numbers for a second opinion. She is stumped about the butt dent but says as long as it's not bothering her or getting bigger she doubts it's anything to worry about.

Thanks so much for your reply!

Momspot

Happy Birthday, Hope u have a great day!!

I am having my first dose of nplate today and i was just curious as to if anyone has had side-effects and when they have had the side effects if they have. What i mean by that is if you have had side-effects within say 24 hours or so of having it or if side-effects can occur at any time during the treatment? I am not too worried about the side-effects it mentions you may get, it is nothing i haven't had before, i am just curious when if any side-effects have occured.

Hi Vanessa, i wonder if they get your count down to under 450k they will be able to leave you alone with the needles etc? Do they think the infection is helping keep your count up too?
Bush Gardens is brilliant and in Tampa an hrs bus trip from Universal, I think they own Sea World too. We have been 3x on holiday but unfortunatley we live in the UK
Im doing fine thanks on the Imuran, my last count was 275k on 50mg but my little old bones are suffering with the cold. Just got some fab thermals though :woohoo:
Take care in there hope they let you out soon
Julia

Happy Birthday! Hope you have a grrrreat one! :woohoo:
Julia

So you are now toffeegirl Judy - I love toffee too, my daughter in law makes THE best!!

I went to MedlinePlus to look up Mercaptopurine and found this:
www.nlm.nih.gov/medlineplus/druginfo/meds/a682653.html

Scroll down to Other Uses and it says:
"...idiopathic thrombocytopenia purpura..."

Hope you can get your count up and the surgery out of the way!!

I hope there is some chocolate cake in the plans for the day!

I went to my doctor regarding an extremely heaving period and had blood work done and put on iron supplements. I have had bw twice since then and my platelet count went from 109 to 47 in one month. My Doctor told me he believes I have ITP. I am current waiting for an appt with a hematologist.

Other then feeling very fatigued I feel okay, but I noticed yesterday that my hands and feet have been cold and I sometimes get a funny sensation in them, almost like a tingling. Is this related to ITP in any way?

Many happy returns and have a blast!

Lily

My Dr wants me to wait at least 6 months between cycles, but then again I usually get a partial response about 5 weeks after finishing rituxan.

Have a very happy birthday Kim!

Erica

I figure that if she ends up with this diagnosis, then we will take precautions at home where we will try to encourage her to swim in the early mornings or later evenings when teh sun is just coming up or going down. I just don't know if we can force her to wear a sun hat at 11 years old, but we can make her wear the sunscreen. I know when we went to Florida 2 years ago, we slathered all of the kids every hour with sunscreen, but Caitlin still had the worse sunburn ever and it was the first evidence of any sun sensitivity that she had ever had, so we were assuming that Nplate had something to do with it. Her sunburn was like the "butterfly rash", but it was not a rash...more like the worse sunburn you ever saw and it took days to go away, rather than just a few hours if she even had a sunburn before. She has olive skin so she tans no matter how much sunscreen I put on her.

Sorry to mention it being a "mild" form...I know Lupus is Lupus no matter what, but it really would be hard for me to comprehend that she could get worse in the future because she is seriously, by far...my healthiest eater (will eat fruits and veggies over chips/dessert any day) & she is so fit due to being in cheerleading all these years. Tiffany is my one who complains about joint pain and has some severe cases where we've had to keep her on Motrin for days at a time so that she can walk without too much pain. (Going to get her tested for autoimmune disorders if Caitlin tests positive.)

Debbie- I don't really know if Nplate will ever be an option for her. There is a study going on that is following adults on nplate who already have reticulin in their bone marrow. This study is supposed to follow them for 3 years and if it shows that reticulin is hindering with the bone marrow's ability to make platelets or the other cells necessary for survival, then they will know not to allow people showing evidence of reticulin stay on the drug. Caitlin is currentlydoing tests for lupus so based on these results will tell us the next step for Caitlin. I don't think we will be doing splenectomy as our next step.

I must be suffering brain fog.

I'd forgotten about a post I'd made entitled Feeling Blue. Thank to Juliannemom, Katie57, foursons,Melinda,KimL, and CindyL for you kind thoughts and prayers. They are so very much appreciated.


KimL, thank you for sharing your experiences with 6-mp. You've given me hope. I'm am going to start taking it next week.

Thanks for the info re: Simon
Hope you're doing well. I just read that your counts are coming up. Way to go!

I tried Sandoglobulin, a newer IVIG, just before my first surgery booking,but my counts instead of rising went backwards... from 62k down to 45K. My anxieties about a 8 hour operation probably play havoc on my counts.

That was Simon. He hasn't been here to the new site yet. The old site is still available for reading, and if you have access to it, you might find Simon's username 'cause I don't remember it.

What about a 2/3 day dose of IVIG? I see you have reactions to it, but in this situation, would it work? That's what I get when I need to bring my counts up for surgery.

I hope you get your numbers up so that you can get your surgery done!

I think a second opinion is in order too. I was diagnosed in /04 and had my spleen out in /06. And I am still at the point I was before I had it out.

Other than bruising, does your daughter have any symptoms? If not, I would suggest waiting on the splenectomy. Let us know what her count is today. 130 isn't bad. I wish my numbers were that high! Good luck and keep us posted.

Last July I had the 4 doses (not the max)of rituximab, it didnt do anything. Saw a specialist haematologist this year, who has written loads of papers on ITP and she surgested I have the maximum dose of Rituximab, I am waiting for a phone call from the day ward with my appointments for the infusions.

Good luck with the preds. I hope they do the trick.






Toffeegirl

That must have been such a frightening time for you and Tonio. Hopefully he'll continue responding well to the IVIG. Good luck to all of you

Cheers
toffeegirl

wow, thats a low count. My son tonio had a low count of 0-3k only once and it happened during a viral flu of sorts with counts of 24 then dropping to 18 the next day.

We just got outof hospi though, after a 3 hr nosebleed last saturday, 3 vomits of pure blood, and 3 x of him defacating blood, IVIG was the only option. Of course in my country we have to pay for this expensive med. But at least we have peace of mind for at least a week. :dry:

Hello everyone
I've been reading the posts for years and have always been impressed with the amazing amount of knowledge, wisdom and compassion on this site. I need to tap on this knowledge right now.

My hema is putting me on an immuno-suppressant, mercaptopurine. I've tried IVIG products, WinRho, & prednisone, but I had to taken off all of them because of a variety of reactions. I need to get my platelets up over 100k to undergo neurosurgery. My hema was going to prescribe a massive round of preds to raise my platelets, but my neurosurgeon said the steroids would inhibit the healing of the arterial by-pass and could perhaps cause the new artery to atophy.

The one good note about having low counts (around 5K) is that my neurosurgeon feels my low counts are doing a good job in keeping the blood and oxygen flowing to the collateral arteries around the clot and keeping me from stroking. But with this time bomb ticking away in my head, we need to start on something to raise the platelets for surgery.


Has anyone tried mercaptopurine and had any success with it raising platelets 100k or over?

I remember reading posts from an ITPer in England who was training to be a specialist in ITP. I'm sorry I can't remember his user name. Would someone put me in touch with him? I'd like to know if he has any current information about mercaptopurine and raising platelet counts.

The drug monologue from my pharmacy lists acute lymphocytic leukemia, Crohns disease, ulcerative colitis and lymphoblastic lymphoma , but nowhere does it says it will help with platelet production. In fact the sites I googled have warned of the following:

Common side effects:
With this drug, many people have a temporary drop in the number of blood cells made by the bone marrow, leading to the following side effects

Increased risk of getting an infection from a drop in white blood cells - it is harder to fight infections and you can become very ill. You may have headaches, aching muscles, a cough, sore throat, pain passing urine or feel cold and shivery.

Tiredness and breathlessness due to a drop in red blood cells (anaemia) - you may need a blood transfusion.

Bruising more easily due to a drop in platelets - you may have nosebleeds, bleeding gums after brushing your teeth, or lots of tiny red spots or bruises on your arms or legs (known as petechia).


My hema chose mercapto6 over immuran because the first drug works faster... 1 month as opposed to waiting 3-4 to get a rise in platelets. With the seasonal flu shot in Nov., H1N1 shots in Dec, and catching a bit of the H1N1 plus some my kids and husband having January cold, it wasn't a good time to start an immunosuppressant.

I've been following the rituxan files and asked my hema if he could apply for Exception Drug Status but he said the rituxan costs were so astronomical that it would never be included in our province's health plan and that Health Canada didn't have empirical evidence proving Rituxan is able to bring on remissions. As far as Health Canada is concerned, Rituxan doesn't raise any longer than conventional IVIG products. So I'm stuck with trying immunosppressants.

Sorry this is such a long note, everyone! Thank you to all who respond.


Toffeegirl ( formerly know as Judy51... thought I'd change the handle cause I'm now closer to 60 than 51, and I love homemade toffee so hence the toffeegirl name

Sorry to hear, my son, tonio had a 3 hr nosebleed that i failed to take control of and had me bring to him to ER. Usually after a few cotton/gauze packs up his nostrils with a bit of pressure, the bleeding stops, but this time it didnt. I know exactly how you feel and i hope Liam gets better.

More platelets to you.

Wow, they don't seem to be coming down at all, platelets have a mind of their own sometimes i think. Hope they come down a bit soon and hope u start feeling better soon!

Wait for it!!...........Drum roll.........Today's count is 897!!!!!!
:huh: :dry: :blush: :blink: :side: :S :woohoo: :ohmy:

Vanessa

Thanks for the comments

I'm seeing my doc tomorrow so I'll have to see what he says. It's kinda weird that you can have extras of organs or even regrow them!

I agree with you barrelgal, it's a strange name to give an extra spleen. I thought my surgeon was making things up when he told me he had also removed an acessory spleen :laugh: