Unfortunately  it is not 100% certain a treatment will  work.
IVIg will only offer a temporary fix,  and is extremely expensive I believe. 
Rituximab is  too risky during a worldwide pandemic, in my opinion.
All treatments have long lists of side effects but no guarantee you will suffer from any of them
them. 

Thanks everyone ! My hematologist doesn't want me to be on prednisone for long. Every treatment option seems to have a lot of side effects as well. I am thinking may be staying on low dose steroids is ok for a while like maybe 6 months than going for IvIG ,Nplate or Rituximab . Rituximab seems very scary reading thru the side effects .Honestly all of them sound scary to me on top of the high cost and uncertainty that it may or may not work for me.

Back when I was first diagnosed in 2004, I was on Prednisone for the first whole year.  Started out at 60mg's but couldn't handle that, so on one test day, I asked the nurse to ask the doctor if I could drop the dose.  He said I could go down to 30.

I've been on it for over 7 years. I managed to get off it completely a couple of years ago for 2 months before  my ITP relapsed alarmingly due to Clarithromycin. Last year I managed to get down to 2mg/day (I suffer dreadful withdrawal symptoms and have to taper very very gently) but back on 15mg/10mg alternate days due to another major relapse just before Christmas  as a result of  Romiplostim failure. 

Just my opinion, I would stay on the same dose and allow your body/immune system to stabilize. I find to avoid the ITP roller coaster, slow and steady with one drug at a time is the best way. Good luck with your final exams!

Years ago I was on it for 6 months but they don't recommend that now. They now say it should be only for a few weeks and to try something else if counts drop when it's stopped.

Hi.
Happy new year.
I continued my weekly testing. Tbh, fearing that the results are transitory and caused by IVIG (and despite deciding to switch to one vial) I dropped 50mcg and overall I have reduced 1mcg/kg compared to pre-hospitalization.

On day 39 it was 254k (So yeah 50mcg reduction almost halved the counts)
And 45 days it was 211k today. (I'm on dose 6mcg/kg now)

Do you folks that have experience with tapering nplate have an idea? Should I go for another 50mcg reduction or play safe and wait even more so that if it Is still IVIG working (after 45 days of injection of the last vial) I will not drop too much? Tbh, I have also started a new diet so maybe it is working. Will let you know once I was sure.

I remember JJ used to taper nplate when he was above 100k. Since I have had a GI bleeding while doing well (+110k) on nplate for a year, but suddenly crashed to 10k and had to dose up significantly. I am really fearful of doing so. And, I confess some part of my mind is conditioned to think dose reduction is too good to be true :|

I should mention that I will have final exams for the next two weeks, so it is another reason I am thinking to play safe.
I have to shoot tomorrow, I can keep the same dose or do some modest (30mcg) reduction and see how it works.

Thanks.

I have been  on prednisone for the past 1 month - was at 60 mg for 10 days then dropped to 20 mg then 10 mg. I am planning to be on low dose steroid for some time- again my counts arent that great either they are at 30-35K on 5 mg .. I am hoping they will improve . Would like to ask as to how long you all have been on steroids like what was the longest period.. 

NPlate's FAQ section addresses your question here ~ www.nplate.com/faqs
I'm not super convinced it works that easily, depending where you're going.  It's something to check out, though.

I faced a similar situation just last week.  My MD's office was closed all week for the holidays, so I couldn't get my dose.  I respond well to prednisone, so I just took a low dose for a few days to keep my count up till this week.  I'll find out this morning how well that plan worked.  

23's not bad for you.  Good luck on Friday.
Mel, more to go up either today or tomorrow.

Aren't her photos great mrsb?!   I really enjoy them!

Hey - 23k - good for you mrsb - hope they continue to go up!

Happy New Year you 2 - and a healthy one too!!

I just don't get the undetectable parasites - and I wouldn't treat anything that isn't detected [that would be like getting chemo for undetected cancer].    I don't mean to be ugly, if I am I apologize.  But it doesn't make sense.

Congratulations to your son on the 77k count! 

As mrsb said this has been talked about before so a search is a good idea.

[Personally if I wasn't a chicken I would have gotten a small tattoo ]

Have you talked to your doctor about this?
I haven't ever had Nplate so I know nothing about it - but I would think asking your doctor these questions may be the way to go.
Good luck!

I am getting weekly nplate shots. How does anyone travel and not miss their shot? Can i bring it with me and have someone give it? Can i go to a nearby hospital and get a blood test to see if I need it? Or can I just take a chance.  Suggestions?

Cindy
Up to the giddy height of 23. Repeat test on Friday.

Full blood count, Liver & Kidney  function, Bone profile and `CRP are what my consultant orders on a monthly basis plus Ferritin every 3 months.

I am glad my post helped.
After over 3 year with ITP and an extensive research I came down to 2 axiomas: we don't know enough of it and every person has a diferent path.

ITP is more severe for some. If without medication your platelets drops to nearly zero that's your starting point. While for other the basement is 40 or even higher.

ITP tend to fluctuate for many known and unknown reasons for everyone. A plus or minus 20, 30, 50 is always a possibility even with medication. 

Nplate was affecting me and it didn't do much apart from bothering me with an injection. For other is a miracle. 

Revolade/Promacta took months to work for me. I posted also here my journey. It just gave me a normal life with no side effects whatsoever. A miracle. I even needed to dose down after getting counts over 150K.

If for your husband prednisone works well. There is a chance that 2.5 mg to 5mg of it a day (apparently this dose is almost imperceptible) together with Revolade will do the trick. It might just give you an extra 10 to 20K on your count but that might just be enough to reach a more relaxed level.

Check with your doctor thou. 

Thank you GrouchoMarx for sharing your Nplate journey. I'm very interested: did the combination of Revolade and Pred did it's job? 

My husband took Revolade 3 months, at first 50mg (1 month), then 75mg (2 months). But that did not prevent his counts from dropping to single digits as far as 1k. He got Ivig nearly every week. A few weeks ago when he was still on Revolade he got a 4 Days high-dose Dex pulse and his counts went up to 130k. Now he switched to Nplate because Revolade alone did nothing. But we are insecure because maybe he just needed to add some Pred to the Revolade and it would have worked.

I never knew that NPlate injections are that expensive 8000$ for one injection ? I'm not sure if insurance would cover ..
These treatment options are extremely expensive ...

Thank you mrsb.  I like taking pictures of some weird things. And the great outdoors.
Happy New Year to you too! How are your counts doing?

healthpath.com/gut-health/parasite-testing-need-to-know/

Apparently only through a PCR test the parasites can be detected. Normal H Pylori test will not. My itp came out just after a mission in a developing country. Btw after I took Hpylori killer my itp raised without medication but it didn't last a month.

Why doctors are not exploring this path?

Good day and Good year everyone. 
I would like to avoid unnecessary blood test now that Promacta is working fine for over a year.
What do they look for in blood test when they want to check the Promacta medication has on you? I just remember my doctor saying all fine, all fine. My bilirubin a bit high but it didn't concern him much.

What do they look? Which parameter? And how often you need to do the test.

I am not a big fun of blood tests btw

Txs

Found it Cindy, some fabulous photos. Happy new year 

mrsb, I have a page called Nature's Wonders Photography on Face Book.

 Open  the Search  tab and type in tattoo; search entire posts,  by any date;  you will return several topics  to peruse. 

Cindy 

Where can one view the photos?

my son who is 18 and has had chronic ITP since age 13 wants to get a tattoo.  His numbers have hovered around 48,000-55,000 for the past year.  he most recently had his highest count in the past year of 77,000 .  if he stays at 77,000, can he safely get a tattoo?

I really enjoy taking them!  We've had some snow the last couple of days, and the trees around us really look nice. It's flurrying right now and we have to take a run out to get some things so I may take some quick shots when we get home.

And your photos are interesting and stunning - you are very talented!
As you know, I really enjoy them!