9 year old daughter with ITP in Hong Kong

My daughter was diagnosed with ITP in March 2016. We live in Hong Kong. At diagnosis (platelet count 4), first line of treatment given was Prednisone. After 3 months of steroids, the pediatric hematologist in HK put her on Cyclosporine A. I'm wondering if there is anyone out there whose kids have been given an immunosuppressant and what side effects they experienced. Her platelet count has gone up and down depending on the dose of the steroid and her last count yesterday was 64.

Also, if there is anyone on this forum, who is in Hong Kong, I would love to talk to you further as well about the doctors and the treatment here.

Many ITP patients have taken Prednisone...probably almost everyone. Very few have used Cyclosporine so you may not get any responses about that one. The more common immunosuppressants, especially for adults, are Imuran and CellCept.

Hi Sandi

Thanks so much for your response. Yes, I understand that Cyclosporine is not the treatment of choice in the US. However, it is for our pediatric hematologist here and we need to work within the constraints of the doctors in Hong Kong.

We have discussed a lot of other options with our doctor here including promacta, nplate etc but his response was that there is no ideal treatment for ITP. If there was, we would all be using it.

My daughter has never had an active bleed so I wanted to go for the wait and watch approach but he didn't advice that as she is 9 years old and he said that in his research on ITP, when he divided the children into subgroups by age, the 8-11 year cohort was at a higher risk for chronic ITP. That is why he wants to treat this more aggressively. Have you heard that before?

Also, what has been your experience with immunosuppressant in general as second line of treatment?

Thanks again!

I tried Azathioprine & mycophenolate. Neither worked. I'm now on N Plate which is working.

As a renal specialist nurse I would advise extreme caution with Cyclosporine, it is nephrotoxic & a well known cause of kidney damage. If you go down this route you must ensure that your daughter's renal function is very closely monitored

We moved to Hong Kong about 1 1/2 yrs after my diagnosis - however I had private insurance - saw a hematologist in Central who did blood work & prescribed prednisone (I knew more about ITP than she did). There was a man here not too long ago who is/was an expat in HK. Can't think of his name though. Know of one person in HK who has a daughter who had her spleen removed when she was 10 if I remember right, daughter is now in college in the States. Sorry I can't be of help.

What dose of prednisone is your daughter on - could the dose be lowered by too much when it is being tapered? Just remember if you don't feel right about something, fight for what you do feel is right.

Good luck!

Cy:

I have never seen any research indicating that ITP must be treated aggressively to prevent it from becoming chronic. It's not a disorder that can be cured or made acute by aggressive treatment....treatment is used to raise counts. I've been researching ITP since 1998 and have never heard that. If he has an article, I'd love to read it. All articles that I have read regarding children and ITP state that the ITP will remit when it is ready whether the child is treated or not.

I have taken immunosuppressants for Lupus and will never do it again. My Rheumatologist is practically forcing me but I'm not doing it. Long term side effects can be nasty. Can you get a second opinion? It's rare to see a child on strong meds unless nothing else is working and the child has symptoms with low counts.

Yes. We have been monitoring LFT and RFT and so far so good!

Hi Melinda

We also started off seeing our normal pediatrician at Matilda. However, after 3 months, he felt it was a bit out of his depth and recommended we move to a pediatric hematologist at Queen Mary Hospital. He came highly recommended by 3 other pediatricians in HK and head of adolescent medicine at Hong Kong University.

She is no longer on steroids. They were tapered off over a month ago as they were not working and he feels Cyclosporin is less nasty than steroids.

Thanks Melinda and I hope you are doing well too!

Hi Sandi

I will ask him for his research paper at our next appointment.

We consulted 4 other doctors in HK as well as doctors in the US and India. While all the doctors in HK and India concurred that the first line of treatment should be steroids, not IVIg since she has never had an active bleed, nor watch and wait since her count at diagnosis was 4, they couldn't agree on the second line of treatment. It varied from azathioprine, to Eltrombobag to cyclophosphamide (which was an absolute no)

We are from California and I also consulted Pediatric hematologists there who recommended we watch and wait and taper off the steroids since they didn't seem to work for her.

We went with the specialist at Hong Kong University because he is the one who came the most highly recommended. I asked him about the watch and wait approach to which he said I can but he really doesn't recommend it. I am not a doctor and I wasn't confident enough in my internet knowledge to risk not being medically compliant with the specialists recommendation.

She has now been on a low dose of Cyclosporin for 2 months and her current count is 64. In a couple of weeks, we will begin to taper off the medicine and really hope the count holds.

I misunderstood since you said her count went up and down depending on the dose of steroid so thought she was still on prednisone. But I do wonder if the does was decreased by too much too quickly - lots of doctors do that, I was dropped from 60mg to 30mg overnight and my count went into the gutter.

I just say do your research [which you are doing] and go with your gut. I'm really sorry your daughter is having to deal with this & you too - bad enough when us adults get it.

I know it's a very tough decision. Here are some guidelines about treating children:

www.ncbi.nlm.nih.gov/pubmed/25288142

ash.confex.com/ash/2013/webprogram/Paper59391.html