Rituximab

Sorry to hear. Did you went through Splenectomy ?

I am sorry to hear.

Did you went through a Splenectomy.

No. My doctor mentioned that but I told him that .athat may happen even for some people who had been stable on a fixed Nplate dose,and will probably go away. I'm going to have couple same dose of Nplate to see if its like before?
I hope I don't need to do anything else along with Nplate .
Pray for me

I have not ate anything for 2 days and Saturday Ilwwill undergo endoscopy. I hope all tests and cbc will come fine ...

How many shots of nplate a year you need to have? Is a rest for your life treatment?

Around 50
I don't know, like anyone else in this forum I like to live a long healthy life off all treatments.
I'll try not to consider splenectomy before 30th month of my diagnosis.

There are moments I think about my spleen and it gives me hope. A way to get out of the rollercoaster. I wouldn't mind a shot a week forever if side effects are minimal.
My only concern is that If I decide to go for my spleen that in few years after they find the miraculous pill to cure it.

I don't know why the shot didn't go well
I used to skip a day or two, that may be the reason
First day after treatment

Wbc 8
Rbc 3.71
Hct 31
Hb 11.5
Plt 75
I have had bleeding of course.
Hal, it has been first time I had Ivig treatment ( along with steroids and transfusions and regular Nplate) do you have any idea?

I received 2nd pulse methyl prednisone.
No Ivig anymore. I fill bleeding has stopped. But today I'm going to have endoscopy. I have not ate anything in past 3 days.
Today test:
Wbc :7.8
Rbc: 3.79
Hb: 11.3
Hct:32
Plt: 90
I recall those times that I only had methyl prednisone alone last year (and once with plt transfusion due to my last bleeding) counts never rosw beyond 20-22k. Now I also received Ivig along with my routine Nplate which would normally take me around 120k alone. What has happened to me? Is it possible Nplate has suddenly stopped working for me? I recall sometimes I had symptoms on Nplate and I could tell I'm around 10k (and I was 10k once I was on Nplate last year) but couple days after that 10k they rose to +200k !
My hema wants to discuss me about splenectomy l. I'm confused I don't want to give it up right now. Due to my counts being around 120k, I used to skip couple of days of Nplate which I think was a big mistake.
I just want something good to happen in my life. It has been over a year I hadn't been on any hospital

When I was on Nplate my counts were all over the place. I lost response to it after about year. I was due an operation which had to be cancelled as my count dropped from 94 to 6. I find Promacta more effective.

Endoscopy came clear. Hooray!
Met my hemo. Will be discharged tomorrow. I told him I will try nplate alone for a month and if it was fine, Ill stick to it. As I ubderstood most people who lose reaponse to it do so around a year. But I was really feeling my counts climbing up gradually. Unfortunately I dont have access to promacta which I know keeps counts more stable. If I needes higher dose of nplate, I must diacuss with my insurance company which pays for my shots and ivig 100%. But if they refused, I consider adding a bit of steroids or cyclosporine to my nplate and wait one more year. Im just so delighted that Im doing fine with current nplate dose, but wont skip any days of it again.
My hemo seemed ok with my choices. He had called my dad yesterday and told him your son current situation may be risky. But today I convinced him again.
All I need is some luck and prayers

Great! Happy to hear good news . Excellent

Wbc 10
Rbc 3.7
Hb 11
Plt 125
Amazing
I ha been hovering around 125k on recent months on Nplate and now I'm 125k on nplate+steroids+Ivig. I thought I'd beat 500k on this combo. (Had my Nplate 5 days ago, Ivig 2 days ago, steroids 3 days in a row and 10 units of platelets past 2 days)
My recent counts on Nplate. Each measured aground a week after shot, each test approximately a months after the previous one:
100k,115k,172k,125k

Oh my Lman, you've been through a lot the past few days. Glad things are going better. Maybe a two to three hundred count after a few more days?

Where to start. Looking back, do you have any idea what triggered it? Too much stress? Change of diet? Bad cold? Stomach virus? Change of diet supplements? Taken something to affect liver function?

Correct me if I'm wrong, didn't I have you pegged as row 2/1 before? No steroid response but a sudden improvement / count increase (after 3 months?) when taking Nplate and steroids together? Have I got you confused with someone else?

I dunno. Maybe the Nplate dose will need to go up for a few months, and then, drop back down like it did shortly after diagnosis? Give it some time for the immune system to settle?

Just my opinion. A splenectomy is a poor idea for someone with a row 2 or 2/1 response.

I think one would need to go to Nplate 10 dose for a month, with no count improvement, before one can officially declare loss of Nplate response.

Hi Hal,
What do u mean by row 2 or 2/1?

Thanks Hal.
Yeah You told I'll probably improve (I really hope so!)
Interestingly my counts has stopped rising 2-3 days after Ivig and after my last steroids dose!
I was 125k at night and 127k in the morning so I think rising is over. It's interesting that I had a small nosebleed between 125k and 127k so nosebleeds probably don't mean very low counts (at least for me).
I had been overseas for a week and was working very hard in couple past week. That might be the reason. Some stress yess, but about virus I'm not sure because my dad had also stomach ache at the time I had but mine lead to bleeding due to my low count.
My question is, I will have to shoot Nplate tomorrow night and I don't want to be back here again! My hemo told me to visit him couple days later but did not explain anything (and he's not good with Nplate, but he listens to me). If I'm going to switch to a higher Nplate dose it must be by his prescription and my insurance approval. So my question is that is it safe for me to shoot my previous dose and check my counts 2 days after my shoot so when I'm going to visit him I won't be critically low? Or you think I should take some steroids despite hating them like hell with my shot to be sure?
Thanks.

10 units of platelets seems a bit excessive.

2 Days each days 10 units totally 20 units
platelets were 227k. We decided to continue previous dosing and if needed we could increase. He also said he has a patient who gets ivig every 2 weeks. But I prefer to stick to Nplate because it's more comfortable.
He also said he had patients who received pred for couple years and totally been able to quit it! So all I have is hope
I'll go for test next week and shot my nplate today.

Hi Lman! Just wanted to say I’m glad your platelets are up, I’m sorry to hear about what you went through...internal bleeding is up there in my worst fears for sure Hopefully you continue to feel better and keep those platelets hanging out at a safe level!

I wonder why TXA wasn’t used instead of all the platelet transfusions

Hi Claudia. Thanks Bleeding is bad ... But I have decided to avoid any food that may have contributed to GI bleeding, I hope it helps.
I was really getting better but this was shocking. I hope things gets better quickly for all of us. There's a lot of hope!
Anne, They also gave me Tranexamic acid. What really bothered me is that they initiated methyl prednisone treatment 12 hours later than when I was admitted.Maybe because I went to ER on my foot, they thought it's not serious
First they gave me platelets which I knew wouldn't help much in the absence of other drugs.

Gastrointestinal bleeding is no fun. Are you feeling better now?

Lman, ok, stress and maybe stomach virus? Let me ask this. Are you eating well, getting all the vitamins one's immune system needs to be healthy? You know, certain ones are needed by the immune system. A google search can get you a list.

All one can do is try current Nplate dose and see what happens, right? It seems to have taken a lot to get counts up, hence the possibility of increased dose. I'm just wondering if there is an increase will it be for a short time, like when you were first diagnosed.

Oh, by the way.

Lman wrote: ... Due to my counts being around 120k, I used to skip couple of days of Nplate which I think was a big mistake...

Yes, I think you are correct about that. Keeping counts around 100 may be best.

Hope the next count is a good one.

b2h, Yeah I'am better. I sometimes feel shortness of breath which can be both due to high platelets or bleeding somewhere After that incident I take any unusual sign serious and say "Oh my God! I hope I'm not bleeding!".
I have been away from hospital for a year and that was fine, but the fact that being on nplate doesn't guarantee that I'd stay away from hospital, have made be thoughtful about what should I do? What would happen and so. I hope within next month after my blood tests I'm able to continue my previous life.

Hal-What supplements do you mean exactly? I googled them and came across to vitamin D and vitamin C which I have restored taking them again. I also had tried high dose folic aid but didn't help in the long run.
And about stress, I had been working hard since couple weeks before the incident and so I should slow down a bit, And also give off playing my PS4 for a while to see if it helps

Hal~ All one can do is try current Nplate dose and see what happens, right? It seems to have taken a lot to get counts up, hence the possibility of increased dose. I'm just wondering if there is an increase will it be for a short time, like when you were first diagnosed.

I just started with 3 and have remained on 3.look at this : www.hindawi.com/journals/crihem/2017/4109605/fig1/
patient (a) once had a 3k count which lead to 2 or 1 dose 4 and then restored dose 3. You're right, I should had tried two 250mcg shot or asked doctor to prescribed couple 500 mcg . I think I will have Ivig shield up to the next test (10 days post ivig) and according to next count we'll decide what to do. You know, insurance
By the way, I used to solute nplate into final volume of around 0.8ml which I know it should be around 0.5ml. I did this because I thought it takes more time to get absorbed and so counts would flatten smoothly. I'll try standard injection rule.

I had a nice discussion with my doc last time. I promised him If I achieve remission, I would help him write an article about itp prognosis (like the one which Portielje did) and I would use my data knowledge to try to fit a model on guessing the prognosis of the disease according to features we have.

Lman
An Hb of 11 means you are marginally anaemic which maybe contributing to your shortness of breath

Lman, It’s good to hear you are feeling better. Shortness of breath can be so many things, but I don’t really associate it with platelet count. However, I could be wrong. It could be anxiety. You’ve been through a lot.

I understand about staying out of the hospital. I remember being so happy when I thought it’s been a month since my last hospital visit, it’s been 4 months, 6 months…. and the disappointment when the counter went back to zero because I was readmitted. It certainly can be discouraging, frightening and all the rest. It’s really difficult not knowing.

I hope you are able to feel more ‘normal’ next month too. If not next month, then the next…. Healing takes time, but it happens. Many platelets and lots of strength to you ~

102k

Looking good

Lman, on patient 1 in the graph. Yes I see that temporary dose increase at week 18. With that nice 102 under your belt now, looks like you may not need a dose increase.

As for vitamins, take a look at these two links. I just take a multi-vitamin and be done with the subject. First link. Second link.

Would it be fair to say that you were not taking Folic acid during this recent crash?

Out of the blue, two days later I noticed some symptoms and counts were 20k, two days later were 40k. So let's go beyond 3 0:)
Hal- As I read that article, after that drop in patient one count, he was tested for H.pylori and was positive and they eradicated it. But mine was negative.
By the way, I found something that I didn't know. Each 250 mcg vial of nplate, contains 375 mcg of romiplostim ! not 250 mcg! so I was on dose 4 because I used to inject all of it.
Now, I have two 250 mcg vial every week. So, I should take that extra 175 mcg into account?

---

Update: After I switched from 375 mcg to 500 mcg, 20k went up to 80k
And another question. As the leaflet say I must dispose rest of the drug? My insurance pays for it, But I was wondering is there any way I could save it?
Or, I could have a 250 mcg shot every 5 days (and my count is more stable). I didn't find 500 mcg vial so I get two 250 mcg and mix them together.