TOPIC:

Hal, I absolutely agreed that Prednisone made his blood vessel less leaky. He is on 40mg Prednisone now and still waiting for Promacta to be delivered from a specialty pharmacy. I also scheduled an appointment with an infectious disease specialist at Children's National. From what I learned last 6 weeks, I still feel that my son has Lyme co-infection, such as Babesiosis, which is exactly matching his symptoms. Since Babesiosis is a parasite so Doxycycline won't do the job. Our hemo totally disagrees with me and he actually never heard about co-infection at all. Let us see what infectious disease specialist will say next week.

The whole family felt very frustrated today. My son's ITP has been going on for two and a half month now. Last three weeks he was put on 80 mg Prednisone and also finally get on 50 mg Promacta. He has no petechiae, no blood blisters in the mouth and no new bruises (his old bruises are not healing). We all thought his count is up at least a little bit. However, his CBC this morning is coming back 10K only. What can we do?? His Lyme coinfection tests were all negative. So infectious disease specialist told us to put Lyme behind us. Our hemo lowered the Prednisone to 60 mg, since my son's face puffed up so severely. He also ordered another dose of IVIG and is willing to give Promacta another 2 weeks. Anyone here has any other suggestions? Thanks.

I'm sorry you are dealing with this rollercoaster. Are they doing the counts manually? It's a good thing he is not bleeding or bruising. It's also good that the infection is now clear; if i remember, he is still only a month out from the Lyme diagnosis, so it may take a while longer for his body to figure out what's what. I hope IVig buys you a few weeks of normalcy, at least.

Others with experience with Promacta can probably speak to how long it took to become effective.

No, the count was not manual. They put the blood into a machine, which spits out the results in a minute. Yes, we just finished Doxycycline little over a month ago. Hopefully, it is what is holding everything right now. Thanks, Maria. How is your little one doing?

Sometimes it can take a few weeks for Promacta to kick in. Don't give up on it yet. If that doesn't work, you can still try N-Plate. Not having symptoms is a good thing even if the counts are low.

Oh pooh. Nothing from Promacta and steroids th8899? Even with 50mg of Promacta no less.

Time to go back to what is known to work? Go back to steroids and IVIG?

I think you mentioned in another thread to try Nplate? You know, there are some folks that do NOT respond to Promacta - and do definitely respond to Nplate. Maybe that is the case here?

Unfortunately Promacta is not working. He was on 50 mg along with 60 mg Prednisone for 4 weeks and count was 10k. Our hemo increased Promacta to 75 mg two weeks ago and taper down Prednisone to 20 mg since my son got severe moon face and gained 10 lb. it has been two weeks, I do not think Promacta works because my son still have blisters in his mouth. We will go back to his hemo this Friday. I think the next step is to try NPlate. If that is not working, then we will try Rituxan. Also I will ask hemo to test for H Pylori this Friday. It is because my son had a week long trip to Japan 6 weeks before his ITP. Just want to look into any possibilities.

Promacta would have been easy and is a common choice. I would not let this be an indicator for Nplate. Some people just don't respond to Promacta. One thing that has crossed my mind is that these folks are able to metabolize it in the liver before it can stimulate the bone for platelets. But, who knows.

20mg Pred and Nplate should get the job done.

It has been a while since my last update. We are entering 5th month now and I could only say ITP is "Weird"! My son was put on 50 mg Promacta for 4 weeks and then increased to 75 mg Promacta for the last 6 weeks along with 60 mg Prednisone. Two weeks ago his count was 5K. Our hemo declared Promacta and Prednisone are useless. So we start weaning off Prednisone and going through insurance for NPlate. Last Friday, we were at 30 mg Prednisone and 75 mg Promacta and count were 14K. Today five days later, we finally got NPlate and brought it to hemo office. Guess what? My son's count is 206K! So now what? Should we just stop Promacta and keep weaning off Prednisone? Do we need to weaning Promacta as well? Finger crossed his count could stay up. New year new hope .

Oh my th, that is wonderfully good news.
Pat yourself on the back, again, for sticking with the 75mg for so long. Nice. Six weeks on 75mg, that has got to be a record for time to response. You know, this now makes me wonder about others that have thought they didn't respond and went on to Nplate. Perhaps all the weeks with Promacta made them then respond relatively quickly to Nplate.

Several questions come to mind, that need rumination.
- did the higher dose of steroids prevent the immune system from resolving a flu virus
- does merely reducing the steroid dose cause the Promacta response
- is a lower steroid dose, say 1/2 mg per kg, required for a reduced time to response
- the Flu strain this season is H1N1, does that strain take longer for immune system to resolve than other strains
- will the count response oscillate, like user 'robert1959' did, until remission
- will steroids create a smooth count response going forward

Taking both steroids and Promacta now has risk of out of control counts. Since steroids can only be tapered so fast, the count has to be controlled with Promacta. Isn't the protocol dose rule for Promacta to reduce to 50mg if count is over 180 or 200? One never knows for sure how fast or slow things will go - as you now know, vast understatement here. May have to go to 25mg very soon.

A couple of questions. Can you fill me in again on Vitamin D he's been taking? Also, on Folate / folic acid? Or, just taking a multi-vitamin?

Hal,
By now, both our hemo and I don't have clue what worked. It could be Prednisone, Promacta, supplements or simply my son's immune system just decided to calm down. Who knows! Here is the list of supplements he took at the moment

1. 500 mg Vitamin C tablet
2. 2000 IU Natural Made Vitamin D3 (Was taking 1000 IU, I increased it about 3 weeks ago to 2000 IU)
3. Kirkland Super B Complex (Started about 3 weeks ago with increased Vitamin D3)
4. Garden of Life 5 billion Probiotic for Kids

Since I worried about interaction with Promacta, I gave all above to my son at breakfast. Also, I start and stop with Papaya Leaf Extract several times during the last 5 months. However, I found my son always got more petechiae and bruise when on Papaya Leaf Extract. I am not sure if it is just coincidence, but for safety, I stopped it. Starting today, we are on 20 mg Prednisone and 75 mg Promacta, we will go back to hemo office next Monday to see how things are going.

Thanks for the info. Good for future comparison reference when/if this happens again.
Oops. Left one possible influence off. A very important one. The evidence here is not a Flu virus, but rather, Lyme (tick bite) is the possible ITP trigger.
- did Lyme (tick bite) cause the protected time to Promacta response

If user 'Clia' ends up with a correspondingly long Promacta response time, my money is on H1N1 strain as the culprit.

We were back to hemo office today for another CBC. Prednisone is down to 10 mg and Promacta is still at 75 mg. Platelets are up to 415K comparing to 206K just 5 days ago. Hemo told us to do 10 mg Prednisone every other day for a week, then just stop it. For Promacta, he lowered it to 50 mg. But I asked him if we should just stop Promacta since platelet count is over 400K now. He said it is ok and just lower to 50 mg and check back in 3 weeks. Maybe I should just follow his advise this time. By the way, does anyone has any information about the teardrop cell? I just noticed this test on my son's last test report, it shows "few". Not sure what that means and hemo never even mention it. Thanks.

No, I wouldn't just stop Promacta, but lowering the dose is a good idea. Stopping it could result in a crash and you'd have to start all over again. His Prednisone is being tapered a bit too quick. He may experience withdrawal side effects.

I don't know what the 'teardrop cell' is, but if the doctor isn't worried about it, you don't have to be either.

I'm many years older than 11 but I can offer 2 thoughts .
Firstly that is far too fast a taper. He needs to come off much more slowly. Maybe go down to 7.5mg a day for a while then reduce by 1mg/day each month which is standard pred. tapering protocol.
I can assure you steroid withdrawal is horrid. I would only wish it on my worst enemies. There is a wealth of info on this site regarding tapering.
I agree with Sandi about continuing Promacta. Personal experience tells me that trying to taper pred and find a suitable dose of Promacta is a long drawn out process.

th8899 wrote:

We were back to hemo office today for another CBC. Prednisone is down to 10 mg and Promacta is still at 75 mg. Platelets are up to 415K comparing to 206K just 5 days ago. Hemo told us to do 10 mg Prednisone every other day for a week, then just stop it. For Promacta, he lowered it to 50 mg. But I asked him if we should just stop Promacta since platelet count is over 400K now. He said it is ok and just lower to 50 mg and check back in 3 weeks. ...

Count doubling every 5 days? Wow.
It's all very strange to those unfamiliar. The 'row 2' response is truly amazing. Counts don't go up with steroids. Counts don't go up with IVIG. Counts don't go up with full dose Promacta. Frustration, followed by frustration, followed by frustration. Will nothing work? Now, magically, counts go up not just a little, but seemingly without control. Ack! What the hell happened?

I'm NOT saying this is going to happen, but, let's take a hypothetical. Suppose for a moment that counts continue to go up past 415 on 50mg. Now what? Well, this time the Doc will actually say: stop Promacta, let the count drop down and restart then. Here comes the dilemma. With no Promacta, the immune system turns back on with the same 'strong destruction' binge it had before. Oh no! Counts are 200 one week, crash to 5 the next. Lather, rinse, and repeat with 75mg again to get counts back up. No 'in between' level. What to do?

If you read through 'robert1959' this is roughly what happened. Extreme oscillation with several on - off cycles. So, let me just say ahead of time. If this sort of situation repeats itself here, in my experience, a low dose of steroids is the key to soften and prevent the oscillation. There is at least one difference though. Robert was on Nplate and your son is on Promacta. That difference alone may prevent the oscillation. I dunno. Just a precautionary.

On the check back in 3 weeks. Surely counts will be tested every week, right?

Good luck.

Quick updates, my son is on 5 mg Prednisone along with 50 mg Promacta now. Knock on the wood, so far my son did not experience any prednisone withdraw symptoms. As planned, we will stop Prednisone next Monday. Hemo won't do any blood test or see us for the next three weeks. Honestly, if you ask me, I will say it is not Prednisone, Promacta or supplements. Likely my son just had a spontaneous remission. Otherwise, it did not make any logical sense. But ITP is not logical, no one will be 100% sure what happened. Only time will tell. We are cautiously optimistic for now.

Today we were back to our hemo office for 3 weeks follow up. My son's platelet count is at 257K. He completely stopped Prednisone 2 weeks ago and lowered Promacta from 75 mg to 50 mg for the last 3 weeks. Hemo said 257K is good but not extremely high. So he decided to keep my son on 50 mg Promacta and check back in 8 weeks. Luckily my son did not have any Prednisone withdraw symptoms (only got some rash on both of his legs first 3 days). However, 4 months on Prednisone he gained 20 lbs. So far he did not even lose a pound. Does anyone know how long it takes to lose weight after stop Prednisone?

th8899
I can't help regarding the 20 lbs gain as Pred never affected my weight.
Although good news about the counts rising I am concerned haemo is ignoring protocols regarding dosing & count checking..see this recent publication 'Eltrombopag doses in children with ITP' @ www.ncbi.nlm.nih.gov/pmc/articles/PMC5858473/
from which I've copied "On the basis of results from PETIT and PETIT2, the starting dose is 50 mg per day for patients age 6 years or older and 25 mg per day for patients age 1 to younger than 6 years. Once initiated, eltrombopag dosing should be adjusted to achieve a platelet count goal of 50 × 109/L, not to exceed 200 × 109/L. The dose should not be titrated to achieve normal platelet counts."
There is a table with the protocol within the article but I cannot find a way to copy and paste it into this message.

Good to hear th. Got that Promacta response. Yeah. Give it some time, life can return back to normal. Not having to worry about what to do about low counts.
For steroids, all I've had is a Dex pulse before. What I noticed is that sugar lost its flavor and was no longer satiating/satisfying - so it was easy to consume a large amount without realizing it. After the pulse was over, it took some time (week or two?) for sugar to fully get its taste back.

mrsb04 wrote:

th8899
I can't help regarding the 20 lbs gain as Pred never affected my weight.
Although good news about the counts rising I am concerned haemo is ignoring protocols regarding dosing & count checking..see this recent publication 'Eltrombopag doses in children with ITP' @ www.ncbi.nlm.nih.gov/pmc/articles/PMC5858473/
from which I've copied "On the basis of results from PETIT and PETIT2, the starting dose is 50 mg per day for patients age 6 years or older and 25 mg per day for patients age 1 to younger than 6 years. Once initiated, eltrombopag dosing should be adjusted to achieve a platelet count goal of 50 × 109/L, not to exceed 200 × 109/L. The dose should not be titrated to achieve normal platelet counts."
There is a table with the protocol within the article but I cannot find a way to copy and paste it into this message.

Thanks so much for the information. Yes, that is what I am worried about. I plan to wait 2 more weeks. If everything still looks good, I will Email him and ask to lower Promacta to 25 mg.

Another quick update. We are back to hemo office today for 2 months follow up. My son has been off Prednisone for little over two months now and he is still on 50mg Promacta. The platelets are 257K today and exactly the same as two months ago. Our hemo is extremely conservative this time (he used to be very aggressive on weaning off Prednisone). He said he wants to wait until summer to let my son off the Promacta. But we insisted on at least lower Promacta and he agreed. So starting tonight I will cut Promacta in half. For the last two months, he had no signs of ITP. But his seasonal allergy is the worst so far. We put him on both Singulair and Zyrtec for the last couple of weeks. It seems not to affect his platelets at all. We are so happy that he is moving towards a good direction and keep our finger crossed.

Well let see. Half of 260 would be 130. So that should put him around 100 - 130. Sounds good to me. Hopefully he will continue to do well and counts will not crash. It seems the closer one gets to 50 (or 0 for that matter) the higher the chances of a crash - if one is going to crash.

Good luck th8899.

Maybe do 25mg/50mg on alternate days to start with.

A little drama today. My son has been on 25 mg Promacta since 04/29. Today he just returned from 3 days of outdoor education. Before he took a shower, I found a tick on his shoulder!!! His ITP was trigger by Lyme disease last Oct. We asked him to wear long pant, long sleeve, and hat. Also prepared bug repeller! I took him directly to the ER and luckily ER doctor pull the tick out in one piece. For safety and his history with Lyme, the doctor gave him one dose of Doxycycline after consulting with the CDC. As I requested, they also ran a CBC. His platelets are still good at 218K. Now we just wait and see. Hopefully, nothing happens this time.

That's a strong count for 25mg. Glad to hear he is doing well.
The grounds keeper for our neighborhood has all his workers wear long pants and sleeves, and wear hats. Very loose fitting. It's like a uniform.

Oh no! I'm *dreading* tick season, and I know ticks are increasing in numbers due to climate change.

Great that you went to ER immediately, though; the doxy should have helped! How is he doing?

Thanks Maria. My son is doing well. We went back to hemo office last Friday for 4 weeks follow up. He has been on 25 mg Promacta for the last 4 weeks and his count is 192K. Our hemo discussed with us and decided to take him off Promacta and check again in 4 weeks. He is completely off the med since Friday and so far so good. We keep our finger crossed. I also closely monitor Lyme symptoms, but I heard that actual chance of infection is less than 5%.

That's great news. Fingers crossed the counts hold up!

I think our experiment to be off Promacta is failing. Since day 8th, petechiae are coming out again. It is very mild comparing to before, but it is a bit by bit and appearing on his back, belly, and feet. Since there is no bruise, no nosebleeding, and no blood blisters, does it make sense to wait a couple more days to see if things will improve? I hate ITP... Every time you thought you see the light at the end of the tunnel. It jumps right back to you.