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  • toffeegirl
18 Feb 2010 05:50
Replied by toffeegirl on topic child age 5yrs with chronic i.t.p
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
  • athos45
18 Feb 2010 05:35
Replied by athos45 on topic child age 5yrs with chronic i.t.p
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:
  • toffeegirl
18 Feb 2010 05:31
Need help with mercaptopurine was created by toffeegirl
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
  • athos45
18 Feb 2010 05:29
Replied by athos45 on topic liam back on predi
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.
  • Angel85
18 Feb 2010 05:14
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!
  • snowgoose
18 Feb 2010 04:49
Wait for it!!...........Drum roll.........Today's count is 897!!!!!!
:huh: :dry: :blush: :blink: :side: :S :woohoo: :ohmy: ;) :( :unsure:

Vanessa
  • Sophie
17 Feb 2010 22:35
Replied by Sophie on topic Accessory Spleen
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:
  • snowgoose
17 Feb 2010 22:08
Hey Tamar, I am no longer fresh, but have attained Junior status!!! :laugh: Looks like 20 is the magic number!!
  • snowgoose
17 Feb 2010 20:30
Just asprin, I had read that they can also choose to use cytotoxic drugs - I don't want any more of those, if I can help it :woohoo: !

Sandi, Have you tried Cadbury Creme Eggs!!! MMMMmmmmmmmmm!!!
  • Sandi
17 Feb 2010 20:00
Oh, just aspirin then....that's not too bad. I thought they were bringing out the big guns! Wow - you get all that delivery service - we don't have that here.

I certainly hope you don't have MRSA!

The candy is all gone...has been. It was great and thank you again!
  • kiwiinoz
17 Feb 2010 19:55
Replied by kiwiinoz on topic Infertility & ITP
Hi Gilly,

Hope this info helps. Hubby and I had 2 children and decided that was enough for us, so Hubby had a vasectomy. Years later we both came to regret that decision and turned to IVF to conceive our 3rd child.
My ITP was discovered at the beginning of my IVF journey, but after talking to many specialists we were told we could proceed. My counts untreated were between 20 - 60 000. The fertility clinic wanted a count of 100 000 for the egg retrieval, so I did a week on pred to get my counts up. We only got 1 egg and 1 decent sperm off hubby, and I am currently 36 wks pregnant. Miracles do happen.
I think your Dr is overreacting about hyper stimulating, here in Australia every thing is closely monitored, and they adjust your meds accordingly. Do you have PCOS (poly cystic ovarian syndrome)? This means you have trouble ovulating and have more chance of over stimulation. I have it mildly, so they started me on a low dose, too low, thats why we only got 1 egg, luckily for us we only needed 1!
All the best.
Emma
  • snowgoose
17 Feb 2010 19:49
Hi Sandi,

They are concerned about the high count, but haven't had a chance to talk to Haematologist in person yet. I think one factor in the decision to treat is probably because of the documented clotting issues associated with Eltrombopag/Promacta.

Have you broken out the Berry Panacotta yet? :)

Vanessa

The blood lady has just been, I will know todays result in a couple of hours,and the chemist has just delivered the asprin for the Thrombocytosis. I feel unwell with the infection,as antibiotics have not kicked in yet. A bit concerned as it could be MRSA as it would seem like it was picked up during surgery, and I have had it in the past, and it comes in handy, as I always get my own room when admitted :) !

I appreciate being able to rave here, as I have a lot of time on my hands,alone at the moment.

I thank God for this site, for Sandi and for all of you! :)
  • Sandi
17 Feb 2010 18:54
Replied by Sandi on topic Rheumatology Appointment
Pauline:

Staying out of the sun is the hardest part for me. I was a sun lover, always have been. We also have a pool and go to the beach every year. I don't stop doing those things, but I do take precautions. I use a high SPF sunscreen with both UVA and UVB, and I limit my time. I also wear a hat on the beach when the sun is highest. I've heard stories of people who went for years with no problems in the sun and suddenly they end up with all sorts of problems.

I do push my limits though, I know. My Rheumatologist suggested that I sit under a beach umbrella at all times...I don't do it. However, I have not had any rashes yet nor have I seemed to have any problems with excess antibody production due to the sun. My blood work has remained the same every three months when I am tested. I do have an increase in neuropathy when I'm in the sun...my arms and legs feel like they are being pelted with sleet the whole week I'm on vacation. When we leave, that goes away. The thing is, Lupus symptoms can change at any time and get worse, so I know I'm taking a risk by doing it at all. I've been okay for five years so far, I just hope it continues.

I don't know that there is such a comfort as a mild form of Lupus. Things can change quickly. A person might live their whole life with few problems, but you won't know that until you get to the end of your life. Until then, Lupus is Lupus and symptoms can come and go. I think I've been pretty lucky with it so far, no organ involvement, but I do live with constant pain and fatigue. I have mild nerve damage due to neuropathy which also comes and goes. It acts up in the cold months and the week I'm on the beach. Annoying, but nothing compared to what some people go through.

Well, I didn't want to talk about me. I just wanted to let you know some of my story to give you an idea of what can happen. Talk to her doctor about precautions and see what she says.
  • snowgoose
17 Feb 2010 18:47
Julia, I like your sense of humour!!! :laugh: :laugh:

I know Disneyland and Universal Studios, but have not heard of Bush Gardens?? Are they in your part of the world??

How are you doing on your treatment?

Vanessa :laugh: :) :P
  • momspot
17 Feb 2010 18:31
Replied by momspot on topic New symptom? and possible treatments?
No. She hasn't had any shots in that area. She did have a hip injury in that area four years ago, but the dimple is new. I guess I will call the pediatrician tomorrow and see what she thinks. Thanks so much for your reply.

Momspot
  • Sandi
17 Feb 2010 18:29
Vanessa:

I don't understand why the hemo wants to treat you for thrombocytosis. Your counts are not dangerously high yet - are you at risk for clots for some reason (other than the surgery)?

I hope you feel better soon!
  • Sandi
17 Feb 2010 18:25
Replied by Sandi on topic New symptom? and possible treatments?
I agree with the pediatrician.

Has your daughter ever had a shot in that area? Some meds, such as Kenalog (allery med) can cause permanent dimpling in the skin. Other than that, never heard of it in relation to ITP.
  • alisonp
17 Feb 2010 15:33
Replied by alisonp on topic holiay insurance
Hi

We live in Cheshire (UK) - What about you?

I had heard that ITP would be expensive to insure before we went on holiday, but it didn't seem to be at all. I guess it might be more problematic if you have a lot of bleeding symptoms, but fortunately my son doesn't. I seem to remember that it was exactly the same category as my moderate asthma, so not bad at all. We did get told by the hospital to ensure that we went somewhere with good hospitals just in case though.

I am sooo jealous of anyone going to tunisia - I bet you are looking forward to it!

Ali
  • momspot
17 Feb 2010 15:11
Hi all. My 18 year old daughter was diagnosed with ITP in February of last year. She had petechiae on her legs and arms and her count was 14,000. She was also severely anemic. She's been taking Iron 325 mg twice a day ever since and her hemoglobin stays at a healthy 12 unless she skips even a few doses. Her ITP was treated with Prednisone most of the last year. She was finally able to taper off in December. Her counts are steadily falling though. Her count two weeks ago was 130. Her hematologist wanted another blood test in two weeks (tomorrow) and an appointment in four. He keeps talking about taking out her spleen if her counts keep falling. But he hasn't really mentioned any other treatments! I know there are other treatments to try. Taking out her spleen at this age seems drastic and it's my understanding that it doesn't always work.

Our pediatrician, whom she still sees, confidentially suggested we get a second opinion. She said with the children she sees who get sent to a Children's Hospital they often don't even treat unless the platelets get very low. I know that she's eighteen so maybe adult onset and pediatric onset are treated differently?

Any suggestions?

Also, of course she bruises easily due to the anemia and generally is sporting several bruises. But she told me she had a dent the other day. It appears that she had a bruise on her right buttock about the size of a fingertip. The bruise has faded to a faint blueish color, but there's a small indentation (also the size of a fingertip) still there. It seems like somehow the tissue was damaged? Has anyone else had anything like this happen?

Thanks for any replies!
  • julia
17 Feb 2010 14:50
Wow, its like Disneyland,Universal & Bush Gardens all rolled into one! What a ride!
Hope you feel better and more normal very soon.
Julia
  • mumof2
17 Feb 2010 14:07
Replied by mumof2 on topic holiay insurance
thankyou for that.....are you UK or US
  • alisonp
17 Feb 2010 12:50
Replied by alisonp on topic holiay insurance
Hi

We went to Spain for a week when my son's count was under 20. I declared his count/condition and his recent hospital stays to the insurance company, but they weren't over bothered - I think that we had to pay an excess on our normal insurance of £10 or something. Try phoning round a few to ask - I tried a few because I couldn't believe that there wasn't a higher excess charge, but they were all pretty much the same!

Hope you have a good holiday anyway - Tunisia sounds so tempting givcen the temperature outside in Crewe at the moment!!!

Ali
  • solentgal
17 Feb 2010 08:47
Replied by solentgal on topic child age 5yrs with chronic i.t.p
her count last week was 3 has been low as 0 beofre now yeah has brusied easy and sometimes she willget blood blisters in mouth witch bleed or if she has a cold she will get a running nose with blood in it to
  • mumof2
17 Feb 2010 08:25
holiay insurance was created by mumof2
hi new mwmber and recently diagnosed..platlets today are 61.
i need holiday insurance for tunisia......... how xpensive will this be...
  • tacmom
17 Feb 2010 08:07
Replied by tacmom on topic Rheumatology Appointment
Sandi...I am glad to hear you think it is a good rheumatologist since you do have experience in this field. Sometimes experience is better than expertise. I know that because I worked in a psychiatric hospital for a while trying to train to be a counselor (psychiatric disorders and drug/alcohol addiction) while I was doing my Masters. I was asked several times if I would be a chaperone for different people and I had to tell them that I had never even been drunk or tried any drugs. That was hard for them to understand and even the people who worked there finally said you have to have some experience (if not yourself than someone close to you) to really understand what these people go through. It was an eye-opener for me and I was young so I had time to change my major. (Just my point in saying why I value what you have to say! :) )

I truly hope she doesn't get the diagnosis of Lupus. If Caitlin has it, it is definitely in the mild form so that gives me leeway to keep her from getting worse. Keeping her out of the sun will be hard though. She LOVES the water and we just built a pool and can't wait to use it. We are also going on a cruise this summer for my parents' 50th anniversary and have a trip planned to Florida as well to stay at a place that we stayed at a few years ago. Caitlin spent all of her time under water diving for hermit crabs and scallops. And I'll never forget the baby shark that she and her friends caught. Scary, but awesome moment!

Seeing the rheumatologist basically nod her head when she heard me say splenectomy was a big relief for me. I really don't want to go there just yet. I am scared about the huge doses of prednisone, but glad to hear that others have gone through it and seemed to tolerate it. Caitlin did not do well on 80 mg so it really seems scary. I'm not going to jump the gun yet...there's still hope that the diagnosis won't come, but I am mentally preparing myself just in case and I can jump for joy if she doesn't have it. Thanks for your supoort everyone...it means alot!
  • lucidawn
17 Feb 2010 07:06
Replied by lucidawn on topic Rheumatology Appointment
Oh, BTW, he lost all the weight he had gained fairly soon-I think within 6 months.
  • lucidawn
17 Feb 2010 07:05
Replied by lucidawn on topic Rheumatology Appointment
Josiah, my other son, was treated twice with a five day pulse of 1000mg of steroids (IV). He gained a little weight, but for him, it was good cause he is such a skinny kid. He reached a normal weight for the first time in his life, lol. But, he didn't have any negative side effects, though he had two of those pulses in two months (plus the taper). He had it for MS. i was concerned because of his heart disease that it would be too hard on him, but he tolerated it well.

Tim's family (dad's side) also had alot of lupus, and Tim often gets the butterfly rash, but he has never had a positive ANA. The hemonc did an ANA last week, and at my request a TSH (thyroid stimulating hormone) because on my side there is alot of hypothyroidism, which can cause ITP. We should get our results this week, but I imagine if he was high(TSH), they would have called.

I hope you get answers, and I hope its not Lupus.
  • lucidawn
17 Feb 2010 06:59
Replied by lucidawn on topic ITP not Child Abuse
A few years ago there was someone on this board whose child or grandchild (can't remember) had ITP and was taken away because they were accused of child abuse. I don't know the outcome of the case, but it was a tough one. I'm surprised they didn't do a CBC to find out a platelet count.
I took my son to his pediatrician's office. If they suspected abuse (the peds), they never mentioned it, but they immediately did a cbc and his counts came back very low. One nurse did give me a horrible look when she saw a handprint on his back where I had been holding him still for the blood draw. In those days, his bedsheets would give him bruises from the wrinkles! He also presented by waking up with bruises everywhere. They were concerned with leukemia, but we have a family trait of chronic ITP, so I kind of knew what was going on.

Let us know what is going on.
  • Angel85
17 Feb 2010 03:25
Yeah, my cousin is heaps better now, they still don't know why he was having so many seizures, but he hasn't had any since then so thats all good. Yeah, i'll try to make it on next tuesday night, it has just been a big couple of weeks with work. Thanks I start that on friday, so i'm hoping it all goes well and it keeps my counts up to a good level.
  • snowgoose
17 Feb 2010 02:44
Thanks Lauren :) . I fell like a walking, talking contradiction at the moment! I missed you on the Aussie Chat, hope you can make it sometime :) How is your cousin doing now?

I hope all goes well with the Nplate.

Kind Regards

Vanessa
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