Nplate at 50,000 vs 25,000 platelet count....weekend issue of closed dr offices.

Hi,
Newly diagnosed ITP in May and confused on this issue...
Platelets 101,000 this past Monday, yesterday on Thursday was 62,000. Going for platelet count again today. Don't want to tank by Monday if it keeps going down 15,000 a day. I will probably get a nplate shot today, Friday to stimulate platelet production in bone marrow. if it wasn't the weekend the general rule is wait until 25,000 before nplate shot I think. But Not sure if I want to chance it going under 10,000 again to see if it would stabilize at a higher number over the weekend. I have been under 8,000 twice in may. Sigh! Darn weekends and closed dr offices. Any thoughts on nplate today vs waiting till Monday?
I am leaning towards nplate today after platelet count if numbers are 50,000 or below. This is so hard to figure out and the dr gave me both options if under 50,000 get shot today or see if it stabilizes over weekend and not get on Nplate cycle. Is there a problem doing nplate and not worring about 8,000 critically low platelets? Do you guys worry if platelets are under 10,000. I don't want a head bleed and think nplate is lesser of two evils. But dr thinks since I've been 8,000 twice in May that I am probably not a bleeder? Had one Nplate shot 3 weeks ago.
Thanks in advance or taking the time to give your opinion.
Cindy

Cindy:
You have to do what makes you feel comfortable. However, there is nothing wrong with waiting until your counts warrant treatment. It looks like you might be getting counts done a bit too often and doing that will make you crazy. If you got three weeks from an N-Plate injection, you're doing good! You don't want counts too high, either.

Thanks for your response.
Can you see a benefit of waiting until Monday if platelets are 49,000 today? Do you not worry about under 10,000 bleed? Maybe I should not worry about a bleed under 10,000? That is my fear since I was 8,00 twice last month. Also, I have been researching Nplate vs Promacta and it seems Promacta is less a little less scary. Do you have a preference on nplate vs promacta?

Oh, I was in hospital got the Nplate, platelets and IVIG. Not just Nplate.

I think people tend to worry more when they are first diagnosed. That's normal. I wouldn't treat at 49k because you are exactly at the target count that you should be for N-Plate. The problem with N-Plate is that there will be highs and there will be lows in between injections. Counts tend to fall over time and keeping a stable count can be a bit difficult. Promacta can provide a little more stability once the dose is right. I personally don't have a preference between the two because I have not used them. They were not around when I was treating. Everyone chooses according to insurance coverage, lifestyle, and the way that the meds work for them.

If you feel that you would panic over the weekend without the injection, then do what you feel is best. You'll get the hang of things in time.

I can't say that I did worry about brain bleeds much, even with counts under 10k. It is very rare and I never really had nose bleeds or other serious bleeding, mostly just bruises and petechiae. Of course it is always a possibility, but just because counts go below 10k does not mean it's a medical emergency. I once hung out in the 20's for months without treating, only going for counts every week or every other week. I didn't have symptoms so I didn't worry much. I got to a point where I wanted to avoid treatment as much as possible, but that can also take time to get there.

Did you get Platelets and IV Ig at the same time? If so that seems a bit daft as you haven't know which one of them is doing the trick.
My count has been down as low as 2k and I'm still alive to tell the tale without any haemorrhages.
My counts swung alarmingly on N Plate. I'm much happier on Promacta

Hi mrsb04,
Platelets stayed high enough at 54,000! Yay! Next draw Monday or Tuesday.
Thanks so much for your reply, it was very helpful. Speaking of crazy platelet swings after that doctor had me in the hospital for IVIG, platelets, dexamethasone and he wanted to give Rituxan (which I refused) my platelets went up to over a million. Sigh.
I did talk to my new wonderful doctor about Nplate vs Promacta and he said he'd start me on nplate if I go down to 20,000 to get a quick platelet boost then switch me to Promacta. If you don't mind sharing, how long have you had ITP, how long have been on Promacta and have you had it straigt though or had remissions?
Is there any reason to get a bone marrow biopsy if I am a newly diagnosed ITP? How did they rule out other issues?
Thanks and be well!
Cindy

Hi Sandi,
Platelets stayed high enough at 54,000! Yay! Next draw Monday or Tuesday.
I agree, I want to avoid treatment as much as possible. Thanks again for your help in getting me through this initial anxiety and confusion over how to handle almost everything related to ITP. It can be very overwhelming and having people being able to guide me through it is incredibly helpful!
My friend suggested I go to an autoimmune specialist. It seems like a good idea, thoughts?
Be well,
Cindy

Cindy - there have been a few people over the years who have gone to an immunologist. They didn't get anywhere, and the general consensus is that Hematologists are best for ITP. You can give it a shot, but if it were a good solution, everyone would be doing it.

The protocol for bone marrow biopsies is to perform them if the patient is over 60 or if they do not respond to any treatments. Usually ITP is diagnosed just by looking at the blood smear and lack of other symptoms such as weight loss, fevers, swollen glands, pain, etc...

Cindy,
I've had ITP for 3 years. The only thing that keeps my count up is high dose steroids which I am not prepared to do for the sake of my health and sanity.
I am currently tapering them for the third time having had them bumped up twice to get my count into double figures. I cannot maintain a count above 25k without 15-20mg of Prednisolone a day and become symptomatic below 20k .

After failing to maintain a response with 2 second line therapies whilst tapering steroids I participated on in a drug trial. Unfortunately I failed to respond to that too.

I started N plate after 15 months. I chose it primarily because the dietary restrictions with Promacta didn't appeal at the time. In the UK we are able to inject ourselves. You need to check this out, I know USA members on here have to go to a clinic/GP surgery. That could be a bind if you need to take it very regularly.

My counts fluctuated wildly whilst taking N Plate but I did manage to taper my Pred to 3mg a day. It worked for a just over a year then I lost response to it, count dropped to 6k, I was symptomatic and back on high dose steroids. I tried again to taper but to no avail so started Promacta this February.

The dietary restrictions are nowhere near as intrusive as I thought. I feel more comfortable on it. I can jiggle the dose about to keep more control of my count. The target count is 50k and when I do get count drops ( i.e. the slightest sign of an infection) I can up the dose for a few days to get my count up rather than taking more steroids.

I had a bone marrow biopsy quite early on. Nothing special. I'd rather have another one than a filling!!

The link below is to a booklet put together by a group of european nurses for fellow health professionals who know absolutely nothing about ITP, me for instance 3 years ago. It's not written in medical jargon and although it is 8 years old it gives a good overview. I found it invaluable in the beginning. I hope it is of use.
Anne
www.ebmt.org/Contents/Resources/Library/Resourcesfornurses/Documents/ITP%20Handbook.PDF

Thanks Sandi,
Your response is very helpful.
Has an autoimmune specialist been helpful since it is an autoimmune disease?
Be well,
Cindy

Wow Anne,
What a helpful informative note you wrote to me. I just want to shot off a thank you so much. I just got this ITP 6 weeks ago and it has been an overwhelming and dizzying process and rollercoaster ride. It really stinks. I'm still trying to link it to hpylori from a Costa Rica trip I took a week before the bruising started.
I will look at that link later. I appreciate the thoughts on Nplate and Promacta and bone marrow biopsy. I do think I will do Promacta if I need it.
Thanks so much for taking the time to share your experiences with me. They help more than you know!

Be Well,
Cindy

62 to 54 in one day? Well, that certainly has slowed down. That's encouraging.

Cindy, everyone is really different when it comes to low counts. For a lot of folks, an 8 count means a trip to the hospital with an uncontrolled nose bleed. And for others, it is just another number. If you weren't bleeding at 8 earlier, chances are good that number isn't a disaster number for you.

As you mention, an NPlate shot should be low risk because they aren't going to give you IVIG & platelets along with it. Also assuming they were going to give you a low dose, a '1' dose: 1mcg per kg of body mass. I can't recall if it was mentioned what they gave you before.

And then there is the complicating factor, the h-Pylori. Will you bottom out at some number higher than 8 now? Unfortunately, no one knows. I've got my fingers crossed for another 54 next week!

Cindy -autoimmune specialists (immunologists) mostly deal with allergies. As I said, you can try it and see what happens. They probably couldn't treat you for ITP but might run some general tests.

Got it. Thanks!
Have a great day!

Well I am reporting good news...the platelets held steady at 50,000 today. That was good news, just down a bit from 54,000 on Friday. I'll get them rechecked on Thursday and am hoping maybe I am stabilizing.
I hope everyone is doing well.
Cindy

Wow ! That is great news Cindy. Very, very happy for you.

Cheers to higher and higher counts !

Good counts Cindy! good you are holding steady. Normal counts are not necessary as we all learn. I have been below 10K many times for months at a time and it hasn't been a problem. My first hematologist told me a person can have open heart surgery with a count of 50K. Also 50K is the target for Nplate and Promacta- which I am on Nplate. My counts are between 30 and 80 which is just perfect for me. I found my counts were more stable on Promacta, but I feel better on Nplate.

I, like you, wanted to see an "immunologist"- sounds so perfect, but I'm afraid the title is a bit misleading. Its really an allergist as Sandi said. I went to an immunologist. She didn't address ITP but did test for 70 foods- needle prick test on my back. Seems I am not allergic to anything! yay right? except that I get an itchy throat sometimes when I eat nuts, bananas, avocados. And pasta, potatoes give me inflammatory arthritis. So that is my experience with the immunologist.

I have never had a bone marrow biopsy because my 3 hematologist have said its unnecessary for diagnosing ITP. They can tell from a CBC.

Hi Poseymint,
Thanks so much for responding to my post. It is so incredibly helpful to hear your story. I am still so new at all this stuff that your information helps me make good decisions and understand the reality of the situation.
I am curious what symptoms you have on Promacta that you did not have on Nplate. From my research, it seems Promacta is a little safer because it doesn't cause reticluar (or some word like that) scarring formation in your bones.

I went to an infectious disease guy today since I just got back from Costa Rica. He said since I do not feel sick that he has no tests or answers other than ITP or hpylori ITP or virus caused ITP. I scheduled an appointment at Mayo first available late August. If I feel like if things are under control at that point they said I can cancel it.

Tomorrow I get platelets tested again. Never a dull. Crossing fingers and praying for stabilizing at 50,000.
Thanks again and Be Well,
Cindy

Sorry to tell you but Promacta can cause bone marrow reticulin fibrosis just like Nplate. Eltrombopag is another name for Promacta.
www.ncbi.nlm.nih.gov/pubmed/25801698
Also its important to watch for elevated liver enzymes, and cataracts. The reticulin is a rare side effect and can be caught on a CBC. It is usually reversible when Promacta has been stopped. As I recall one or two people on the forum had fibrosis, they stopped the drug and bone marrow went back to normal fairly quickly. Anyway, I always made sure I got monthly CBCs when I was on Promacta. Most people have few or no side effects.

I had a few odd side effects on Promacta- a kind of brain fog, memory problem. Thats unusual- I think one other person talked about it on the forum. I stopped taking Promacta and my thinking cleared up within 24-48 hours. I don't have really any side effects on Nplate. I feel good, just an occasional morning headache, for which I drink a bit of coffee. Hopefully your counts will stay steady! But also with ITP its good to have a next step plan.