Welcome, Guest
Username: Password: Remember me

TOPIC: Diagnosed on Sept 15, 2016 with <1 platlet

Diagnosed on Sept 15, 2016 with <1 platlet 2 years 1 month ago #58260

  • Shikha
  • Offline
  • Posts: 3
  • Thank you received: 0
Hey, I need immediate help please.
My father for diagnosed with itp and his platelets count is very low since then it's fluctuating between 1k- 4k now it's 2k..He was treated with ivig, steroids,npause7 and with some other medicines also but anything didn't helped..Now he is been undergoing Rituximab treatment this 27 Feb he get his 4th dose n probably the last dose as per the doctors but still his platelets is 2k... Please let me know what can help...Is there any other medicines or do we need to wait...As he fell down two days ago so he is having extreme pain in his waist n below his waist...Please please please do reply and please help

Please Log in or Create an account to join the conversation.

Diagnosed on Sept 15, 2016 with <1 platlet 2 years 1 month ago #58263

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
Shikha - It can take time for treatment to work. Rituxan can take 4 to 12 weeks after the first infusion. If he was trying N-Plate, that can also take time and hopefully, they are still using it. It has a good success rate.

Please Log in or Create an account to join the conversation.

Diagnosed on Sept 15, 2016 with <1 platlet 2 years 1 month ago #58272

  • Shikha
  • Offline
  • Posts: 3
  • Thank you received: 0
Sandy really thanku for replying...But there is no fluctuations beyond 4k...And doctors have not used nplate yet...Do we need to ask them to start it? And last n 4th dose of Rituximab will be given on 27th February...After that 12 week we should wait?

Please Log in or Create an account to join the conversation.

Diagnosed on Sept 15, 2016 with <1 platlet 2 years 1 month ago #58342

  • anon
  • Offline
  • Posts: 24
  • Thank you received: 8
Really a remission, either full or partial is reached when the person is off all medication and has good counts.

Please Log in or Create an account to join the conversation.

Diagnosed on Sept 15, 2016 with <1 platlet 2 years 1 month ago #58351

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
Shikaha - you could mention it to the doctors and see what they say.

Please Log in or Create an account to join the conversation.

Diagnosed on Sept 15, 2016 with <1 platlet 2 years 1 month ago #58428

  • jayinchicago
  • Offline
  • Posts: 181
  • Karma: 1
  • Thank you received: 15
I got my cbc count today.
Iam at 141k on my own.
Went from 91k to 141k in 2 weeks.

Last 250mcg nplate shot was given 5 weeks back.

Please Log in or Create an account to join the conversation.

Diagnosed on Sept 15, 2016 with <1 platlet 2 years 1 month ago #58432

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
Jay, that is fantastic! Great news, especially since you expected to be down! Maybe remission is a near possibility for you. Fingers crossed!

Please Log in or Create an account to join the conversation.

Diagnosed on Sept 15, 2016 with <1 platlet 2 years 1 month ago #58433

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1227
  • Karma: 10
  • Thank you received: 147
I am very happy for you Jay. I reread this thread. That NPlate has consistently worked very powerfully for you. Great response. Much, much better than other drugs.

This now makes two great NPlate stories I'm familiar with. Robert's, and now it looks like yours too. He had trouble getting a response to NPlate and some time to get remission, while you always had a great response. Need to think about these two cases for awhile. LOL, try to come up with a CRAZY deduction from it all.

Refresh my memory. You've talked about doing lots of exercise. Also tried/trying a few things diet wise. Can you attribute the success you have now with anything you've done diet wise? Anything throughout NPlate treatment perhaps?

Please Log in or Create an account to join the conversation.

Diagnosed on Sept 15, 2016 with <1 platlet 2 years 1 month ago #58439

  • jayinchicago
  • Offline
  • Posts: 181
  • Karma: 1
  • Thank you received: 15
Okay Hal,
Can you attribute the success you have now with anything you've done diet wise?-
No Alcohol.
I am taking a new protein shake for lunch ( EAS Myoplex original)
This shake is loaded with essential nutrients\vitamins and 42g of protein.
Stopped taking vitamins in the pill form.

Other than the diet above (Mon-Fri)-
30minutes strength training. (VERY IMPORTANT)
30minutes cardio .

Please Log in or Create an account to join the conversation.

Diagnosed on Sept 15, 2016 with <1 platlet 2 years 1 month ago #58441

  • momto3boys
  • Offline
  • Posts: 403
  • Karma: 2
  • Thank you received: 84
Congratulations on the latest counts. It looks like you may be out of the woods for a good start to a remission. Fingers crossed that you keep stable at those great numbers!

Please Log in or Create an account to join the conversation.

Diagnosed on Sept 15, 2016 with <1 platlet 2 years 1 month ago #58466

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1227
  • Karma: 10
  • Thank you received: 147
If I understand, lots of exercise and no alcohol were the most profound contributions to success. I know from other postings you seem to be one of those that does research on ITP. In your research did you ever come across how the liver consumes/destroys platelets? If so, have you got a link? As you know there are folks here that talk about how the liver can take over destruction of platelets after splenectomy. Do you suppose alcohol consumption can upset the liver to not only reduce thrombopoietin levels but consume platelets as well?

For me, I cut out gluten because I appear to have celiac disease (not diagnosed). No evidence that my celiac is directly related to low platelets though. Might have milk allergy, unconfirmed. Easy to just cut that out, guilty or not.

Please Log in or Create an account to join the conversation.

Diagnosed on Sept 15, 2016 with <1 platlet 2 years 1 month ago #58483

  • jayinchicago
  • Offline
  • Posts: 181
  • Karma: 1
  • Thank you received: 15
Hello Hal,
Close to 50% of the people who suffer from Cirrhosis have ITP.
Also many people who consume alcohol who explicitly do not have liver disease still have ITP.

My opinion is that there are two issues here-
1. TPO levels are getting affected by alcohol.
2. Bone marrow suppression because alcohol is a toxin.

Antibodies to platelets is a very tricky subject and my opinion it is truly by chance and not by any causation.
What causes platelets to be tagged as foreign objects?

Please Log in or Create an account to join the conversation.

Diagnosed on Sept 15, 2016 with <1 platlet 2 years 1 month ago #58488

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
There are also people who are very heavy drinkers and never get ITP. I've known plenty in my day.

My opinion is that sometimes acquiring ITP is chance and sometimes it is causation. Illnesses, medications and vaccines are all known to trigger ITP and in that case, it would be causation. However, you'd have to have the predisposition in the first place.

Please Log in or Create an account to join the conversation.

Diagnosed on Sept 15, 2016 with <1 platlet 2 years 1 month ago #58494

  • jayinchicago
  • Offline
  • Posts: 181
  • Karma: 1
  • Thank you received: 15
Hello Sandi,
you can take your argument to say that there are some chain smokers who don't get lung cancer, so lung cancer is not caused by chain smoking?
If 58% of people suffering from liver disease get Thrombocytopenia then statically it is very significant.
academic.oup.com/qjmed/article/106/5/425/1541856/Liver-disease-as-a-cause-of-thrombocytopenia



Abstract

Background: Liver disease is frequently missed as the cause for a patient's thrombocytopenia.

Aim: To evaluate the role of liver disease in causing thrombocytopenia within a tertiary hospital.

Design: A hospital-based retrospective study.

Methods: Analysis of medical records of outpatients and inpatients with a platelet count <100 × 109/l seen at St Mary's Hospital, London in October 2011, was conducted. Cause for thrombocytopenia was determined in each case and patients with liver disease were analysed further looking at factors associated with their low platelet count.

Results: In total, 223 patients were included in this study, 109 of them were outpatients and 114 were inpatients. The mean age was 57.1 years (range 22–106), 64% male and 36% female. Liver disease was the cause for thrombocytopenia in 58% of outpatients. Overall, 92 patients with liver disease were identified; cirrhosis and/or splenomegaly were present in 78%, a further 8% were on interferon therapy. Thrombocytopenia was not explained by the extent of liver disease in 8%, significantly more in hepatitis C than other causes of liver disease (P < 0.05). Factors correlating with low platelet count in patients with liver disease were spleen size (P < 0.05) and serum bilirubin (P < 0.001). There were none, or mild abnormalities only in liver function tests in 19 patients with liver disease-associated thrombocytopenia.

Conclusions: Liver disease should be considered in all patients with an unknown cause of thrombocytopenia. Advanced liver disease does not have to be present for thrombocytopenia to develop. All patients with unexplained thrombocytopenia should be evaluated to see if liver disease is present, even when liver function tests are normal.

Please Log in or Create an account to join the conversation.

Diagnosed on Sept 15, 2016 with <1 platlet 2 years 1 month ago #58495

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
Jay: Thrombocytopenia caused by liver disease is not ITP. It is thrombocytopenia; two similar but very different things.

Please Log in or Create an account to join the conversation.

Diagnosed on Sept 15, 2016 with <1 platlet 2 years 1 month ago #58496

  • jayinchicago
  • Offline
  • Posts: 181
  • Karma: 1
  • Thank you received: 15
Hello Sandi,

Stopping alcohol does not cause Thrombocytopenia to go away.
So makes it very complicated to even associate a causation, my hematologist does not believe alcohol causes thrombocytopenia.

I have not had alcohol from September 15th, 2016.
Until I started getting NPlate shots my platlets were under 5 no matter what.

Please Log in or Create an account to join the conversation.

Diagnosed on Sept 15, 2016 with <1 platlet 2 years 1 month ago #58499

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
Jay:

If there is damage to the liver caused by alcohol which then causes thrombocytopenia, the reason is the alcohol. The thrombocytopenia may not go away because the liver is damaged and therefore, platelet production is impaired, maybe permanently. You're stuck on the alcohol causation and this is rarely a cause of ITP, however, there can be other causes. In fact, there are known causes, or triggers if you prefer. There are lists of side effects on medications and vaccines that list thrombocytopenia which actually ends up being an ITP diagnosis.

You said that your Hemo does not believe that alcohol causes thrombocytopenia, but also posted a link that says that it does if the liver is impaired.

Please Log in or Create an account to join the conversation.

Diagnosed on Sept 15, 2016 with <1 platlet 2 years 3 weeks ago #58573

  • Rhondale
  • Offline
  • I'm an adult male, 57 years of age. A year ago while having a routine physical and blood work found that my platelet count was 30,000. Did the prednisone treatment and four Rituxan treatments, did not take. My count today was 10,000. Not sure what's next
  • Posts: 2
  • Thank you received: 0
Lot's of great information here! I had a CBC today and my count was 10,000. My Hemo Dr.. felt it was time to think about other courses of action. I have already done Prednisone and Rituxan with no long term effects, he's now thinking about Promacta or a Splenectomy. I noticed quite a bit of discussion on NPlate, has it been successful?

Please Log in or Create an account to join the conversation.

Diagnosed on Sept 15, 2016 with <1 platlet 2 years 3 weeks ago #58574

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
Rhondale:
Both Promacta and N-Plate have pretty good success rates. They are maintenance drugs though, meaning that you have to keep taking them to maintain counts. While on these drugs, the count should not be normalized, but should be dosed to keep counts around 50k. Some people go into remission while on these meds, but it can take years. They usually have few side effects.
The following user(s) said Thank You: Rhondale

Please Log in or Create an account to join the conversation.

Diagnosed on Sept 15, 2016 with <1 platlet 2 years 3 weeks ago #58578

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1227
  • Karma: 10
  • Thank you received: 147
Welcome Rhondale. Yes, this forum is a great resource. Almost like having an ITP specialist on call, LOL

Like you, I didn't respond well to steroids and started with a count of 12,000. Curious though, how many weeks has it been since your first (or last) Rituxan treatment?

Please Log in or Create an account to join the conversation.

Diagnosed on Sept 15, 2016 with <1 platlet 2 years 3 weeks ago #58579

  • jayinchicago
  • Offline
  • Posts: 181
  • Karma: 1
  • Thank you received: 15
Got back my cbc yesterday (03/22/16) back to 51.
What a bummer.
So the last spike from 91 to 145 was just because of my viral infection, can you imageine that?
With no infection I am back to killing my platelets.

I did not take the shot but should next week when it will drop below 50.

Please Log in or Create an account to join the conversation.

Diagnosed on Sept 15, 2016 with <1 platlet 2 years 3 weeks ago #58583

  • Rhondale
  • Offline
  • I'm an adult male, 57 years of age. A year ago while having a routine physical and blood work found that my platelet count was 30,000. Did the prednisone treatment and four Rituxan treatments, did not take. My count today was 10,000. Not sure what's next
  • Posts: 2
  • Thank you received: 0
My last treatment was in June 2016.

Please Log in or Create an account to join the conversation.

Diagnosed on Sept 15, 2016 with <1 platlet 2 years 3 weeks ago #58586

  • poseymint
  • Offline
  • Posts: 511
  • Karma: 1
  • Thank you received: 118
Jay- I had bronchitis in January and my platelets jumped from around 50 on Nplate to 325. I thought I had gone into remission! I hadn't had platelets that high in 10 years. But next week they were down to 51K again. Oddly the counts were flat the week I was sick, they jumped up the following week (?) delayed reaction I guess. Anyway, if your counts went up because of a virus, doesn't that prove that you have auto-immune thrombocytopenia? and not an issue with alcohol and your liver?

Likely your counts will trend down until your next Nplate shot, BUT its not unthinkable that your counts could go up. OR that you could sustain a longer time with safe platelets after your next Nplate dose. Its really hard to predict Nplate. I get weekly doses - was up to 495mcg but was able to lower it to 453mcg and get the same response. We then lowered my dose of Nplate from 453mcg to 412mcg and I thought my counts were trending down- 50 47 31 27 33 but then they went back to 52 54 57. So I'm happily surprised with that.

Just my 2cents but I would never go on to Rituxin or splenectomy with such a good Nplate response. I would stay the course with Nplate and see how it plays out. good luck- thanks for your contribution and good insights!
The following user(s) said Thank You: jayinchicago

Please Log in or Create an account to join the conversation.

Diagnosed on Sept 15, 2016 with <1 platlet 2 years 3 weeks ago #58587

  • jayinchicago
  • Offline
  • Posts: 181
  • Karma: 1
  • Thank you received: 15
Hello Posey,

Thanks for your insights and encouraging words.

Yes, with my latest counts it looks you are correct I have ITP.
Iam going to stick with NPlate and see where this takes me. Last shot I took was on Jan 30th. So yes let me see where this takes.

Regards,
Jay

Please Log in or Create an account to join the conversation.

Diagnosed on Sept 15, 2016 with <1 platlet 2 years 2 weeks ago #58651

  • jayinchicago
  • Offline
  • Posts: 181
  • Karma: 1
  • Thank you received: 15
Got back my cbc yesterday (03/30/16) back to 35.

Given an NPlate shot 250 mcg and will return back 04/20/17.

Nothing to report just destruction still going on albeit at a slower rate.

Please Log in or Create an account to join the conversation.

Diagnosed on Sept 15, 2016 with <1 platlet 2 years 2 weeks ago #58679

  • mally
  • Offline
  • Posts: 6
  • Thank you received: 1
hi sandy ,

i am doing a research on NPlate , i have read your views on the same , and your insights would mean a lot to a study that we are conducting right now ... can u help me

Please Log in or Create an account to join the conversation.

Diagnosed on Sept 15, 2016 with <1 platlet 2 years 2 weeks ago #58680

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12444
  • Karma: 11
  • Thank you received: 2325
Mally - You need to contact the PDSA directly about this. PDSA@PDSA.org
We cannot address this on the Forum.

Please Log in or Create an account to join the conversation.

Diagnosed on Sept 15, 2016 with <1 platlet 1 year 11 months ago #59078

  • jayinchicago
  • Offline
  • Posts: 181
  • Karma: 1
  • Thank you received: 15
Quick update went for my CBC yesterday 05/11/17 and was at 64 count and was told to come back in 2 weeks with no NPlate shot.
Last NPLate shot was on 04/19/17 250mcg, Count during that time was 31.

So nothing new to report just still destruction going on albeit slowly and NPlate is still responding but no sign of stabilization yet.

Please Log in or Create an account to join the conversation.

Diagnosed on Sept 15, 2016 with <1 platlet 1 year 10 months ago #59362

  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
  • Posts: 1227
  • Karma: 10
  • Thank you received: 147
Question for you Jay. This 250 mcg dose is about a '2.7' for your weight, yes? If so, do you think if they gave you a '1' dose strength that you would have to get a shot every week?

Also, you mentioned on another thread that you thought the overall response rate to Rituxan was about 25%. What lead you to that? Something your doc said?

Please Log in or Create an account to join the conversation.

Diagnosed on Sept 15, 2016 with <1 platlet 1 year 10 months ago #59367

  • jayinchicago
  • Offline
  • Posts: 181
  • Karma: 1
  • Thank you received: 15
Yes, if they reduce it then I might have to get it weekly, just a theory but cannot say for sure.
But why waste money, every vial is worth $377 so it is better to get it full.


As far as Rituxan goes There was a study mentioned which went through various scenarios.
www.ncbi.nlm.nih.gov/pmc/articles/PMC2783818/

In recent years, rituximab, (17, 18) has become a widely used treatment option for chronic ITP (19–25) Forty to sixty percent of chronic ITP patients achieve a partial or complete platelet response following their initial 4 infusions with standard dose rituximab. Despite this relatively good response rate to initial treatment, only 15–20% of patients sustain responses lasting at least 3 years (26, 27). Therefore, more than 70 to 80% of the treated patients will either not achieve a response or will respond but relapse and require further treatment.

Please Log in or Create an account to join the conversation.

BBB Cleveland logo GuideStar Seal NORD Member Badge 2018THSNA logo