Well last week my platelets dropped to 49,000 but then this week they went up to 240,000. Hoping my Hematologist will agree to just an N-Plate shot this week and see what happens

Hi There,

Wondering if others have noticed any of the following in your loved one with ITP that we've seen with our son:

• Overpopulation of S. Aureus in G.I. (from 3 G.I. mapping of gut flora)
• Cavities (2 that required extraction)
• Pimple like bumps on rear end (especially when counts are below 20k)
• Itchy nose (ENT saw crusting that he suspected was Staph, but couldn't test due to recent nose bleed events)

​​​​​​Our son was diagnosed 3 years ago, just before turning 3. We have gone through a number of treatments and medical interventions to stop nose bleeds. As a long time reader, but first time poster, I'm interested to know if these potential S. Aureus related symptoms are unique for his case, or if others with ITP (particularly children) have similar observations.

Hello,

Thank you Miguel for sharing your experience. I would also like to hear if the effects of Avatrombopag and Quercetin have contributed to durable platelet counts. My son's profile of ITP treatment have a similar timeframe for when they wear off.

Also wondering what source plant is the Quercetin derived from? Is it Sophora Japonica?

Thank you for this information! I’m feeling overwhelmed with all the choices of Medicare and how Part D will cover this medication. I hope whatever way it will be covered that it will be affordable. I’m just grateful it’s been covered at 100% thus far… a real blessing! Be well!

Theoretically 60 is a good number for surgery but it all depends on the surgeon. Some are happy with anything over 50 and others want the count to be around 100. I am well aware that blood count is a floating number. When you have to stick two 16Ga needles in your arm and pull them out after 3 1/2 hrs for dialysis 100,000 is a good number to shoot for to prevent excessive bleeding. Also it is not what the blood count is but how sticky the platelets are which is hard to tell. Extended bleeding at the canulation site in hemodialysis is no fun. I've been there.

I'm always happy when my count is 60k or higher. A few years ago my then hematologist said I could have brain surgery (we were talking, I wasn't going to have brain surgery) with a count of 50k - this year my hematologist (wanted one closer) didn't like my 57k for gum surgery so had to take pred to bring it up and I got shingles between the pred & my body not liking what was going on, I didn't mind the gum surgery at all it was my body that spoke).

Just remember that count is bouncing around all the time - you can't maintain a certain number! 2 weeks ago my count was at 104k, 52k, 139k & checking it again today - no treatment just blood work .

Keep us posted!

SO far after the third treatment of Ruxience and N-Plate my platelets went to 60,000 They had been as low as 19,000 Most Dr. won't do any kind of invasive procedure un less platelet count is at least 50,000 Ruxience is very similar to Rituximab. When I tried to us Rituximab my insurance wanted me to use Ruxience instead (probably cheaper). My Hematologist was fine with that.
I get bloodwork today with results Thurs. so we'll see if the 60 held or maybe even went up. I would like to be and maintain a 100,000

W the Ruxience raised your platelets to what? I had not heard of that drug so went looking. What you are trying to do with treatment is to bring your count up to a decent level not necessarily in the normal range. For a while there was a group of us ITPers who would get together and a few of them could only reach a count of 5k or a bit above and they were living normal lives, one of the men w/a 5k count and his wife adopted a child.

Denise the same goes for the majority of us, healthy and never heard of ITP or gave a thought to platelets when this hit us. I was looking forward to moving to Tokyo with my husband and sons - and I am absolutely sure ITP started after a gamma globulin injection my husband's company insisted we have before we went to look for an apartment as it was very shortly after that the red dots appeared and then bruises. (We did move to Tokyo, I was not going to have us miss that opportunity - a bonus was we went from Tokyo to Hong Kong before coming back to the States - I'm an old timer, diagnosed 35 eyars ago)

I wish you both success in getting your count up - stay strong and keep us posted!!

True but I had already tried Ruxience similar to Rituxan and N-Plate by themselves. N-Plate worked for a while (a couple of months) and then stopped. Ruxience raised my platelets a little but not enough to continue with it by itself. It seems that almost everybody is on more than one treatment.
Good luck.

The only problem with trying two medications together is there's no way to tell which one is working  I'm glad the combo is working for you, W.
I just did Rituxan and got a rise with the first treatment.                  .

Didn't mean to come across as intolerant, just wrote down what my Dr. had me do and why.  Sorry if I offended you
 

On this site someone responded to my dilemma of not finding a treatment for my ITP even though my Hematologist tried all kinds of things. The person who responded said his/her Dr. tried 4 weeks of Ruxience (1 treatment per week) plus weekly shot of N-Plate after the Ruxience infusion. My Hematoligist agreed to trying the combination. I went from a platelet level of 20,000 to by the third week I am up to 60,000 I will continue with the Ruxience and N-Plate next week and then we'll see. I had been on N-Plate before and it worked for a few weeks and then stopped. Same with the Ruxience. Also tried both with Decadron and with IVIG with both N-Plate and Ruxience to no avail. Ruxience and N-Plate together seems to be working. Time will tell. My levels haven't been this high in over a year!!!

Your reimbursement is determined by the Medicare Part D (drug) and/or supplemental plan of your choice. Benefits and co-pays vary. My supplemental plan sets ITP oral drug co-pays at $80 per month. The NPlate I take is considered a medical "treatment" covered by Part B, and is completely covered that way. I advise you to compare the benefits of several Part D insurance providers before you lock into one. Consult a Medicare supplement broker if it's all as overwhelming to you as it would be to me. At one time, I recall that some pharmacies provided such advice as a free service; but they all seem to be suffering from short- staffing these days. Not sure if they're able to do that anymore.

Hope this helps!

Your numbers and hospital experience are the exact same as mine. They are starting the Rituximab next week, but did not mention any injection. I also was the prime healthy person! Eats well, exercises, avoid chemical yada... and STILL somehow get ITP!?? Are you still in "remission?"

Hi Kay, any change since the explant? Are you in remission?

I will be going on Medicare in 2025 and currently my ITP Rx, Doptelet, is covered thru Sobi Patient CoPay at 100% because I have retiree health insurance through my former employer (commercial insurance). It is my understanding that once a patient has governmental health insurance (Medicare, Medicaid) that patient assistance is no longer available from Sobi. If anyone has gone through this transition, could you please share your experience and advice?

As we all know, our medications are necessary and expensive. I’m guessing there is a copay but I’m concerned about the cost. The Medicare formulary I checked stated that Doptelet is a Tier 3 drug.

Thank you in advance! I hope everyone’s ITP journey is going well and your platelet counts are in healthy ranges.

Any update on your wife? Has she been stable? I’m very curious about trying this

It looks like it’s been a month since your post. Any update?

I started papaya leaf pills several months ago and think they were maybe doing something but then they dropped my meds too much and I crashed. Trying to level out again.

That's good you checked Lman - enjoy learning to dive 

Ok, he suggested diving is safe in general, but If one enters the water incorrectly there's a risk of bleeding due to water impact. He suggested learning 1m dive first. I guess I'll do that occasionally for a while

Hello,
Do you know much about these medications? I am asking for a friend-

1. daratumumab
2. rituxan
3. Nplate
4. fostamatinib 
5. Rilzabrutinib

Thanks
 

Maybe you should ask your hematologist about this - then you can be comfortable if he/she says hey, diving is ok.

I'm so sorry - bad enough for an adult to get ITP but when it is your child it is worse! We Moms do get anxious that's for sure - but it is me with ITP not one of my sons. I was diagnosed at 11k and dropping - looked like I'd been beaten in a back alley with a 2x4.

Is there a hospital near you that is associated with university? If so I'd go that route first. If not then could your son's doctor or your doctor recommend a good hematologist?

Keep us posted on finding a hematologist and how your son (and you) are doing!
Melinda

Hi
I've recently started recreational diving. I currently use the 1m height springboard, but I plan to attend a few lessons. After many jumps from the 1m board today I had a little painful landing with head in the water and had a little abrasion on my head due to water impact. Has anybody had any experience with it? How about the 3m springboard? 

Hi Liwen
I don't know anybody in NJ, I live in IL. Just as someone who found to have itp at 21 a few years ago (and I also have an anxious mom), I tell you there's no grave danger in itp and you should not worry! Most of us here would be happy to have a platelet count that does not need treatment but just a little more careful living

Thanks a lot guys.
You guys have given me hope. Will update you guys with my latest count.
Once again thanks a lot 😄

Mine was 2g for about 6 months (together with prednisolone for the first 2 months, to allow time for the mycophenolate to kick in; then MMF only)
1.5g for 3 months
1g for 3 months
0.5g for 2 months, then discontinued completely
The count was around 120K throughout the tapering period, until I started taking 0.5g when it dropped to 75K. So I was very hesitant to discontinue and expected a dramatic drop, but in fact there was no change from 0.5 to zero. I've taken no treatment since then and it is still around 75k.
My doctor and pharmacist said with or without food, although added that taking it with food might reduce side effects, if I experienced stomach pain or unsettledness. So I took it right after food while I was on the highest dose, but as it was tapered off it didn't seem to matter when or how I took it.

Yeah I also experienced some stomach troubles initially when the MMF was started but just like you my body got adjusted to it in a month. I have been on mmf since last year and my docs were also going to taper it and end it by this year's end. But unfortunately I had this cold and crash and now again one step up for the next two months.
I am quite surprised to see that the medications you received are similar to what i received ( except for the fact i received an ivig course due to an invasive C-diff Infection).
I wanted to ask what was the tapering regime your doc followed? And did you have anything along with mmf like some dietary changes and did you take mmf empty stomach or with food? My doc says you can take it either way , it does not affect its absorption a lot.
And what I think I experienced were not some side effects of MMF rather something like a panic attack. I havent experienced anything like that since.
BTW this is my treatment regime
1g - 2 weeks ( no response)
2g- 6 months ( count b/w 100-120K)
1.5g - 5 months ( count b/w 150 -200k)
1g - 2 months till now but crashed due to cold otherwise the plan was 4 months 1g and then 2 months 500g and then stop it

So sorry to read what you've been through! I hope MMF will help you.
I took MMF for about a year, after "kickstarting" my platelets with prednisolone from a low of 12k. I started on 2000 mg MMF a day, and I did have some side effects, upset stomach and some nausea, but not the tingling you described. This was only in the early stages - my body seemed to get used to it and after 6 weeks (ish) I had no problems with it. But - nb - my haemotologist said I was lucky, many patients have much more severe effects. I was told it takes 2 months to take effect. I took that high dose for I think nearly 6 months, and then gradually reduced it. My count has stabilized (for now) at around 70k and I haven't taken any treatment for about 4 months.
If the side effects are manageable it's worth perservering with the treatment. But it seems everyone's experience is different and there are other options if MMF doesn't suit you

Aaklon I know nothing about Cellcept at all as I've been lucky to just have had to use prednisone & WinRho for treatment.
Would what you felt yesterday be side effects from Cellcept?

This is my very favorite site to look up drugs [supplements too], maybe it can help you - sometimes if looking for the brand name it will give you the generic name to click on to read about the drug. medlineplus.gov/druginformation.html

I'm still hoping mrsb sees your messages - she is very knowledgeable and doesn't mess around.