Just say No

It's been a while since I have had to look at treatment options. Promacta is my next option. I've done prednisone and IVIg. Neither work and I ended up with symptomatic meningitis from the IVIg. We have been doing the whole watching and waiting thing for years now. I've finally dropped to 25 and its time to discuss my options. I think i'm going to say no to promacta. Honestly I just don't think any drugs side effects are worth it. How low is too low? Did anyone else refuse treatment? How did that work out? Please share all your wisdom...

I was diagnosed in 2009 fyi

Hi, I don't think that there is any number that is too low and must be treated. There are definitely symptoms that should indicate treatment, but those symptoms don't occur at the same count for everyone if at all. For example, my son has got down to 1 with no wet purpura or active bleeding (both symptoms which I am told should be treated), but other people get them atuch higher counts. Treat the symptoms not the count

I agree with Alison. Look at symptoms. If I had counts of 25K I would not treat. That said, I don't get symptoms at those numbers, plus I've had years of experience with ITP and lots of low numbers (<10). I've grown to trust that I'm okay with numbers under 30K.You have to look at your particular life style, symptoms and how safe you feel at the lower numbers.

Sometimes I feel safe with the lower numbers, my hematologist feels safe, but the nurses feel its a medical emergency. So I have had to reassure them. Just last week I saw a new doctor, a rheumatologist who said she gets "very concerned when her patient's counts go below 90". (!?) Omg I haven't had a count of 90 but maybe twice in 8 years! So I can see she and I will be having some conversations about low platelets. By the way, I have to treat- with Nplate. If I didn't my counts would be zero. Good luck with whatever you decide!

90! Oh my. She won't like you for a patient, Posey!

No, I cannot refuse treatment because mine will just go down to 1k if I dont treat.

I need nplate shot every 3-5 weeks to keep my platlets over 50k.
Refusing treatment is your own choice and risk you take.

When I was at 15, I refused to take IVIG instead of waiting forNPlate to work. Lucky for me I had a good response to NPlate.

Jay, on your CBC / FBC. Is Mean Platelet Volume, usually listed as 'MPV', included in the list? If it is, is it normal or high?

Hey,
Whats the difference? For the first time in 8 years mine was high. I see my hemo tomorrow and will find out if he says anything about it. But wondering what you know. Thanks

Gosh reneemid, wish I knew myself. I asked my hema about MPV and she said she didn't ever use the data in diagnostic analysis - or words to that effect. Although, it is well known in ITP circles that high MPV is common with ITP.

After reading this article I have a theory about how MPV could be useful and need some data, besides myself, to test the theory. No one volunteers MPV so thought to ask.

I'll be interested to hear what your hema says about it...

There is no MPV.

There is a separate blood smear exam which shoes-

Young Platelets 1+
Giant Platlets Rare

Ok. Thanks for checking Jay.
Where I'm at, 'Quest' labs shows the MPV value but 'LabCorp' labs do not.

I wonder if D.Mann is following this thread...

I have Labcorp here and have not seen MVP.

My weekly blood draw test (CBC/Auto diff 5) shows MPV values which were in the 6.5 range after IVIG but now on Nplate have risen to 7.6 (7.0 being the cutoff for low). My test report puts an "L" when a value drops below normal range. I used to have 5 "L" readings. Currently I only have the "L" next to platelets of 112. I asked the lab tech what the MPV measurement was, her reply was it measures the size (age) of the platelets. A low number is small young platelets, a higher number would be older surviving platelets. Just add some info here" I had my 5th Nplate shot today, the only side effects so far have been 1. The slight taste of turpentine in my mouth for 3 days after each shot. 2. Some back spasms. 3. Numbness on the bottom of my feet. 4. My wife says it makes me cranky for a couple days. 5. Lethargy. 6. Brain fog. ( all listed are manageable)
The one thing I have not asked but will next week is if my Nplate dosage has been varied since my responses of 120, 122, 143, 118, 112. I will also add that Medicare + my supplemental have covered 100% Nplate cost so far which looks to be billed @ $3700 a week when drug, and visit are included. Best to all, may you find what works for you!

I'm glad it's working for you. One correction though. New platelets are bigger and shrink as they age. It makes sense that the MPV would go up while you're on N-Plate since it stimulates production, you'd have more new, large platelets.

You could easily have those varied platelet counts on the same dose of N-Plate. You might be able to even lower the dose since those numbers are a bit high. That might also help with the side effects.

Thomaskm, the current UK price for 250mcg vial of N Plate is equivalent to $620. How much are you taking ?

I have not asked my dose, as stated above. I would assume it is the normal dose for a 200lb man. I guess if I walked into a pharmacy The current wholesale price of romiplostim is $1,062.50 for a single-use vial of 250 µg , once it is put into an injector, then me, then submitted to insurance, that's where price unravels.

There is no normal dose. It is started at 1mcg/kg and titrated to a max of 10mcg/kg, the aim being to be given the smallest dose possible to keep you platelet count at 50K. The higher the count the greater the risk of a thrombosis.
Do you meant to tell me that you let them drug you without receiving the information as to what dose they have been giving you ? How do you know if they are following the correct protocol?

Oh, I will grill the Dr. on Monday! I have not seen him since my first injection.

Good