Attention*****All N-Plate users***** Please reply

OK....I fought it for 8 years, but finally had to succumb. I'm an official N-Plate therapy patient. had my 3rd injection today when my count went back to 6000 after only a few days. No more rituxin, I'm too old for successful splenectomy. What can I expect? Am i going to be bound to weekly injections, sticking close to home?, monstrous side effects! What's your story? How long have you been on it? What is your life like now?

I've used it for over three years. Am not tied to home because I self inject. Get bloods done every eight weeks and have counts around 80.. 78 last week.

It took me a while to get stable and each dose would work for a couple of weeks and then I had to up the dose to the next one and so on until my count suddenly went high and I came back down the doses to the lowest again where I am at now. Seeing the consultant tomorrow so going to suggest injecting fortnightly instead of weekly and will see how that goes. Patients where I go are sometimes being nudged into remission by Nplate so it isn't necessarily a for ever thing. I have no side effects.

i had my fourth injection yesterday, after having count of 0-3,5,5,14 count the past 4 weeks.
i got a dose of 4 microgram/kg, i have had occasional headaches but i am not sure if its because i had a very bad nosebleed and i lost a lot of blood or that its the Nplate.

however right now i feel fine and im even going to uni again.

Ann, what range of dosage have you been using? If you inject every 14 days then the last 7 days theres no Nplate effect right?

Thanks Ann....this has been helpful even though my hemo told me it is unlikely that injections could not be less frequent than once a week. I had also asked if Nplate could nudge me into remission and he didn't seem to think so. good luck with your progress.

I had my third injection yesterday. The first was 1 mcg, second was 2 mcg, and yesterday i believe it was 4 because i had already received a total of 3 mcg. Count was 38000 on Sun but only 6000 yesterday and I'm sure lower today. The other problem I'm having is a numbness on the left side of my face which they can't figure out if it's connected to anything. Suggestions include virus, shingles flareup even though there's no rash, infection, but CT scan showed nothing, but not related to Nplate side effect.. It is compounding everything.

sal89 wrote: Ann, what range of dosage have you been using? If you inject every 14 days then the last 7 days theres no Nplate effect right?

I went up to 5 mcg/kg and then back down to 1 mcg/kg.

I think with longer between injections, the count will come down lower before the next injection which is fine as I have room to play with.

Hi in 2010 I was on nplate for nine months my bones hurt but got passed it but not trying to scare anyone just like people to know it can happen I had a stroke in October 2010 because my doctor let my counts go at 200 without reducing my dosage it's now been a year since my stroke I don't blame the nplate but the dr because nplate is not used to make a count normal I learned that the hard way anyway I started nplate again two weeks age trying to stay lowest dosage I can but just a slight increase n back down to 5 but fingers crossed just beware of counts spiking because I honestly never thought in a million years I'd have a stroke at 25 lose my job my apartment my ability to use my left arm sorry for all the info I just don't want anyone to have to go through the mess I did good luck

I am on Nplate for the 2nd time. The first time it worked for several weeks and different dosage amounts. Then it stopped working. I was then on Promacta, again worked for several weeks and 2 different dosage amounts. I have since been on steriods and Rituxan and had a splenectomy. Now I am on Nplate again as the splenectomy didn't put me into remission as was hoped. My counts are still all over the place.

The most common side effects for me from Nplate are sore muscles and achey joints.

OK...had my 3rd Nplate injection on Tues, but had blood in urine and a mouthful of sores by Thurs AM. Went back to hemo and received ivig and platelets. Count was at 8000 and bleeding was attributed to lack of steroids. Was put back on decadron and after receiving treatments bleeding lessened and mouth seems to be clearing up. Go back next Tues for another Nplate injection. Dose will depend on what the platelet count is. The last dose was 4mcg/kg. Thanks to all responders. Your replies help me greatly. I am a 64 yr old male who has been in relatively good health my whole life even after being first diagnosed with itp 8 yrs ago. Rituxin worked at first but the last remission was only 11 mos. Now they think Nplate is the answer. Hope so.

I used nplate for about a year it worked well at first after about 5 injections ,then after about 6-7 months my counts started falling and dosage was increased until I reached the maximum amount allowed it was great while it worked because I self injected and it meant going to the hospital less. I've now tried every drug known to help ITP and had a splenectomy all with no success but I now go about life as near normal as possible I go to work go to the gym everyday fly anywhere and my counts usually peak at about 5 k and I'm on no medication at all and over the past 10-12 weeks its the best I've felt since being diagnosed I think something's happening and I think I'll have normal platelets again soon but it's been with the help of this site the excellent work of the Nhs and a wee book I like to read called the secret that's got me really going and positive

I believe

Cheers

Well, we may have quite a bit in common. I have tried every therapy except splenectomy because at my age (64) they believe success is unlikely. I have the same positive attitude as yourself and wish the same success for us both. Be well my friend.

nroach, i had blood in my pee for a week and it stopped by itself.

jpb, you fly with a count of 5k? im thinking of taking the airplane next month so im wondering.

Hi have been on N-Plate for 2 months now injecting every 2 weeks did you mean your count was at 200 when you took another injection is that what caused your stroke hope you are feeling better thanks marosa

Now that's several of you that inject less frequently than once a week. My hemo says that should not be the case. Low dose injections once a week just to keep counts in a safe (50,000) range is the rule. Anyone else on a schedule like that?

Sal89

I just asked my son's doctor about this - because the level of his symptoms on holiday in Spain last week led me to strongly believe that his count was around 5. Anyway, the doctors answer was that it was fine to fly the 3 hours home. Get on that aeroplane!

Ali

nrcoach wrote: Now that's several of you that inject less frequently than once a week. My hemo says that should not be the case. Low dose injections once a week just to keep counts in a safe (50,000) range is the rule. Anyone else on a schedule like that?

My haematologist told me the other day that he had someone using Nplate once every six weeks. It's all they need as the count goes to around 70 or so and slowly drops over the 6 weeks. If he did it every week his count would go way too high, even on the smallest dose.

When your doctor has a patient who reacts like that to the drug his view will modify. Basically, you so what fits.

thanks alison, i will!

Nplate worked for my husband for more than three years. He was on 1 mcg once a week, but the headaches and dizziness were getting worse and he said he didn't want it any more. Other treatments were tried and now he's taking Danazol. See the thread below this one.

I have only been on N-Plate for a few months i had to go up to 10mcg/kg before i got a response but it has been a slow reduction down to 2mcg/kg.

The platelet count will go up and down as they tweek the dose at the start it can be scary but hopefully soon they will get a grip of it and get you to stable numbers (Like me) i am sitting between 100-200. At the start i had site bruising and headaches but as my platelets came up both of these seemed to subside.

The only thing i suggest is getting used to self injecting the sooner you get used to it the sooner the doc can give you more than one weeks supply. I currently get three weeks doses in one go and keep them in fridge and i wake up on a thursday make up the jag and then go about my daily business. The jags are only a problem if you make them, I love N-plate as it was the only thing that stabilized my count and maintained it.

If you have other questions for me feel free to send me a message

Thanks mark, my last dose was 5 mcg/kg. Getting another dose on Fri, but had to have ivig today because the count was 4 and I had severe mouth blisters. i'll mention self injecting to my Dr on Fri. Whatever dose i get will depend on Fri.'s count. He told me it takes 4/5 days to take effect so last Fri's dose should kick in soon.

Protocol in America is not to allow self injecting so don't be disappointed if they refuse.

I got up to 5mcg/kg before getting stable and then had to come back down the doses to the minumum. So here's hoping it works well for you.

Yea, didn't think so...but maybe in the future they might...here's hoping!

Ok...feeling pretty good today, no sign of crashing platelets. going tomorrow for CBC and Nplate injection....hopefully lower dose than the 5mcg I got last time; depends on count. I do have some cramping and spasm-ing in my hands and fingers. Anyone else experience this? Very foggy in head as well. Could be decadron (only 6mg per day) or the Nplate. What do you think?

I think it's the decadron! 6 mg of that is like about 40 mg of prednisone so it's a high sort of amount.

There's a steroid converter here www.globalrph.com/steroid.cgi

I only once did steroids as well as Nplate when I dropped to a count of 1. I found it confused the issue and I had no idea what my count was doing with the Nplate so the next time I dropped I refused the steroids. I found adjusting the dose of Nplate much easier from then and got stable more quickly.

Wow...thanks Ann. That explains a lot. A few weeks ago while in the hospital they had me on 40mg of Dex....now I see the equivalent of that amount. No wonder I was climbing out of my skin. Starting to wean down today.

A few weeks ago while in the hospital they had me on 40mg of Dex....now I see the equivalent of that amount. No wonder I was climbing out of my skin.

It's the Dex.
Try maintaining a 40-hour work week (and side jobs) while on 40mg Dex pulses.....loads of fun. Just did two 4-day pulses over the past two weeks. Even more fun is playing/singing in a biker bar on 40mg Dex pulses...been there a few times over the years.
Does anyone else 'see things' on Dex? I've had some very entertaining hallucinations at work and at home due to the stuff.
Dex is inexpensive, but it ain't fun. I'm elated to be back on Promacta.
.

You've just given me a 'light bulb moment' (if that means anything in the US). I had an operation once and for five days afterwards I had closed eye hallucinations. Absolutely fascinating, I just lay there with my eyes closed seeing all sorts of things, it started off with pictures of roman and greek jugs in patterns. If I could have painted I'd have made a fortune because it was so beautiful. Soon after it changed to being desert scenes with pyramids and castles in the sand. I came home by bus (I know, I got told off for that but hey) and closed my eyes and 'saw' us driving actually through castle grounds. It was all quite wonderful.

I always put it down to the aneasthetic of Propofol but I really think it was probably the dex drip they gave me during and after as steroid cover. I think that because it lasted so long. I only tried oral dex once and that was only at 20 mg dose for four days. I felt drunk for a week after stopping it but had no hallucinations. But I'm really glad to know what probably caused the closed eye hallucinations because I'd rather not rule out Propofol as an anaesthetic for the future.

So what were your hallucinations like?

So what were your hallucinations like?

I've had all sorts them over the years, whenever I do a Dex pulse. Some amusing ones were:

1) One morning I was working in my shop at home (I manufacture specialty hobby items as a sideline). My wife came to the shop door (3 feet from where I was sitting), stood there for a couple minutes, then turned around and went back up to the 1st floor. A little while later I went up and asked her what she wanted. She looked at me funny, as she had been on the 2nd floor the entire time.

2) Same workshop, different year.....I was working away and looked down to scratch my right leg. Imagine my amusement to see one left leg and two right legs....only one of which needed scratching.

3) I'm the first person to arrive at my engineering job in the morning. I was walking through R&D to my office, looked down the hallway to see a panther walk around the corner and into my boss's office. A lovely creature it was too. Not a house cat, a full-size panther the shade of midnight. Of course, there wasn't really anything there.


No, I don't "see dead people"......
But yes, we have 'light bulb moments' here also.
.

I'm sorry guys, but that is actually quite funny! I think it would scare the heck out of me though and I'm not so sure I'd find it amusing. I'm glad you did.

Yes, Ann, we use 'light bulb' moments here too. Our family joke is to say "Duh, bell rang"!

One thing though - my husband just had wisdom teeth removed a few weeks ago and they used Propofol. He told me that the ceiling changed colors the entire time and he just sat there and was fascinated by it. I've had surgeries with Propofol though and never had any hallucinations. Maybe the combination of the two were the reason you had them for so long, Ann. Freaky!

I think it would scare the heck out of me though and I'm not so sure I'd find it amusing. I'm glad you did.

When you know something isn't real, you may as well kick back and enjoy the show.