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06 Jan 2022 04:05
  • mrsb04
  • mrsb04
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. 
06 Jan 2022 00:14
  • poseymint
  • poseymint
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!
05 Jan 2022 23:17
  • JJ
  • JJ
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.
05 Jan 2022 14:25
  • Lman
  • Lman
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.
05 Jan 2022 13:55
  • RR01
  • RR01
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.. 
04 Jan 2022 10:48
  • midwest6708
  • midwest6708
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.  
04 Jan 2022 10:07
  • CindyL
  • CindyL
Mum
23's not bad for you.  Good luck on Friday.
Mel, more to go up either today or tomorrow.
Category: Social Chat
03 Jan 2022 21:04
  • MelA
  • MelA
Mum
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!!
Category: Social Chat
03 Jan 2022 21:02
  • MelA
  • MelA
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.
03 Jan 2022 20:57
  • MelA
  • MelA
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 :) ]
03 Jan 2022 20:54
  • MelA
  • MelA
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!
03 Jan 2022 20:24
  • Ravenfam1
  • Ravenfam1
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?
03 Jan 2022 15:26
  • mrsb04
  • mrsb04
Mum
Cindy
Up to the giddy height of 23. Repeat test on Friday.
Category: Social Chat
03 Jan 2022 15:22
  • mrsb04
  • mrsb04
Full blood count, Liver & Kidney  function, Bone profile and `CRP are what my consultant orders on a monthly basis plus Ferritin every 3 months.
03 Jan 2022 04:42
  • GrouchoMarx
  • GrouchoMarx
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. 
03 Jan 2022 03:20
  • mala_malina
  • mala_malina
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.
02 Jan 2022 18:07
  • RR01
  • RR01
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 ...
02 Jan 2022 09:51
  • CindyL
  • CindyL
Mum
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?
Category: Social Chat
02 Jan 2022 04:54
  • GrouchoMarx
  • GrouchoMarx
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?
02 Jan 2022 04:38
  • GrouchoMarx
  • GrouchoMarx
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
01 Jan 2022 16:39
  • mrsb04
  • mrsb04
Mum
Found it Cindy, some fabulous photos. Happy new year 
Category: Social Chat
01 Jan 2022 09:21
  • CindyL
  • CindyL
Mum
mrsb, I have a page called Nature's Wonders Photography on Face Book.
Category: Social Chat
01 Jan 2022 02:17
  • mrsb04
  • mrsb04
 Open  the Search  tab and type in tattoo; search entire posts,  by any date;  you will return several topics  to peruse. 
01 Jan 2022 02:12
  • mrsb04
  • mrsb04
Mum
Cindy 

Where can one view the photos?
Category: Social Chat
31 Dec 2021 22:12
  • wyatt
  • wyatt
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?
31 Dec 2021 09:26
  • CindyL
  • CindyL
Mum
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.
Category: Social Chat
31 Dec 2021 00:36
  • MelA
  • MelA
Mum
And your photos are interesting and stunning - you are very talented!
As you know, I really enjoy them!
Category: Social Chat
30 Dec 2021 17:46
  • RoseHeartSmile
  • RoseHeartSmile
If you haven't already done so please report this to the VAERS reporting system and to JnJ directly. They need to gather data on adverse side effects. TTS (low platelets combined with abnormal clotting is an adverse reaction to this vaccine.)  I'm not a doctor or a health care professional or scientist, just an amateur researcher. From what I have seen so far is that Moderna seems to have the best long-term protection. There are heart issues with MRNA vaccines even though this is primarily in younger men, but protections from COVID hospitalization and death seem to be best with Moderna. Again, I would check directly on the CDC site and do a search with the current date and type in "Updates on booster and list each brand separately. It's a 'work in progress' with the data.
30 Dec 2021 09:58
  • CindyL
  • CindyL
Mum
It really is ridiculous!  Going through Face book and I see laughing faces under some posts about the virus and I just shake my head.
These same people who say they won't get because they don't want to be tracked, probably don't realize they're being tracked by their phones!
What's going on here right now is about the only thing that I'm glad that mum isn't here. Steven and I would be allowed in to see her, but my brother and sister wouldn't
People are upset that the NHL isn't going to the Olympics (I don't think they should have been anyway, it's for the kids) and the World Juniors. I guess I'm more concerned with the health and welfare of the players than others.
Yup, we got out!  It was a beautiful day.
Category: Social Chat
29 Dec 2021 10:17
  • MelA
  • MelA
Mum
Glad you were able to get to Cathy's for Christmas!

It just does not make sense why people will not mask and distance and behave - if they had from the start things probably would be a lot different.  So sad that people die because they believe it is a hoax, or the vaccine will put things in their blood stream to track them [yep, I know someone who wont' get for that reason] and so on.     

Hope you and Cathy got out for you walk - going to go see if photos are up.
Category: Social Chat
Displaying 61 - 90 out of 70647 results.

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