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11 Nov 2021 20:01
  • gozorakgogo
  • gozorakgogo
Hey all

Been a while. After having skipped my last 3 Hemo appointments for CBC's(the last one being this past April) I FINALLY went this past Monday. After my Diagnosis and 10 day hospitalization in July 2021 with a platelet level of 2. I went through the 4 Ritux treatments(Jul/Aug 2021) and received weekly Nplate injections from July to Nov 2021. My level was at 100 at my final Nplat injection a year ago. It remained right around or slightly above 100 up until my last CBC this past April(never dropping below 100). After 7 months of no CBC's and a full year since my last treatment of any kind my platelet level is now at 179. Great news.

Im one of the lucky ones. But for those of you who may be newly diagnosed, its rarely as bad as you initially think it is. The forum here was of great assistance to me i those first few months. Since that last visit and CBC in April I had actually stopped thinking about ITP. Its as if it never happened and I never worry about it. At all. I think of it as a one time thing. Of course we all know that the possibility(if not probability) exists that remission ends and its back to ground zero. I actually dont care. If that were to happen unlike last time I would know what was up and not give it any thought.

Hope all is well with everyone
11 Nov 2021 18:03
  • Juliandrea85
  • Juliandrea85
Don't be guilty, just happy! I've chronic itp since i was 11 years old also, and my doctor at that time was hoping itp was acute, not chronic, because the most part of children don't develop chronic itp.
Imagine to be guilty for every person in the world who suffers extreme poverty, illness, and many other problems. 
Allow yourself to feel free from itp, and also part of the community because we, al itp patients, need people to talk to, who understand us :) 
11 Nov 2021 16:00
  • MelA
  • MelA
Mum
Cindy I was pleased to see more of your wonderful photos on the site!  You make me smile!
Category: Social Chat
09 Nov 2021 03:42
  • Rob16
  • Rob16
N-acetylcysteine (NAC) is a strong over-the-counter antioxidant supplement. It is also used in the ER to help prevent liver damage from Tylenol overdose. I am taking the maximum daily dose of Tylenol on a daily basis, which I figure can't be good for my liver, so I take NAC whenever I take acetominophen. It makes sense, intuitively, and I figure it can't hurt (except that many brands have a horrible sulfur odor, so purchase carefully!)

Celebrex is not OTC, but it is a generic NSAID. To my knowledge it is far safer than any other NSAIDS -- including ibuprofen and naproxen -- in terms of not interfering with platelet function. I posted a study to that effect here: 
pdsa.org/discussion-group/7-treatment-general/29179-platelet-function-tests.html#59678
09 Nov 2021 02:12
  • Rob16
  • Rob16

I noticed the lack of posts by Rob16. Such a shame he was so helpful when I was first using this site.

I just looked in at this thread to see if there had been any word on our dear Sandi. How sweet to stumble on those kind words from you, Mrs. B! Life became more and more demanding, and I had to cut out some important activities in order to make room for others, like raising my six-year-old grandson. I intended just to cut back on my time here, but found it hard to stay involved without being sucked right back in, so except for occasional lurking, I just quit coming back. 

Ellen has been stable all this time, with fairly low platelets being an annoyance more than anything else, and only becoming a small problem when she needs to get her platelets up for a medical procedure. My own autoimmune journey is a longer story for another time.

Sandi's reason for leaving is her own business, and I am confident that her life is better for it, full of children and grandchildren and trips to the beach, without constantly checking her computer for new postings to respond to. My only regret is that I did not fully let her know how much her work was appreciated. Someone mentioned that her position was uncompensated, in which case her contribution was even more remarkable. I hope she knows that this forum has managed to stay alive in her absence, thanks to so many of you who have remained active and helpful to all of those who arrive here as scared as we were way back when.
Category: Social Chat
08 Nov 2021 23:12
  • Rob16
  • Rob16
The latest meta-analysis of 12 studies, 869 patients:
Biomed Res Int . 2021 Oct 6, 2021:9992086. doi: 10.1155/2021/9992086. eCollection 2021.
The Efficacy and Safety of Different Dosages of Rituximab for Adults with Immune Thrombocytopenia:
A Systematic Review and Meta-Analysis
Yu Dong , Ming Yue , Mengjiao Hu
PMID: 34660807 PMCID: PMC8514896 DOI: 10.1155/2021/9992086
Abstract
Background: Rituximab has been frequently used as a second-line treatment for patients with immune thrombocytopenia (ITP). The optimal dose and course of rituximab are uncertain.
Methods: A comprehensive search for randomized controlled trials reporting the use of low-dose (100 mg) or standard-dose (375 mg/m2) rituximab in ITP treatment was conducted. Meta-analyses were performed on CRR (complete response rate), ORR (overall response rate), PRR (partial response rate), SRR (sustained response rate), infection rate, SB (significant bleeding) rate, and SAE (serious adverse event) rate.
Results: A total of 12 studies were included, comprising 869 patients. Compared to the control group, rituximab treatment resulted in an obvious increase in CRR (P < 0.00001), ORR (P < 0.0001), and SRR at month 6 and 12 (P = 0.0007, P = 0.0003), without increasing the infection rate (P = 0.12) and SAE rate (P = 0.11). No significant differences in CRR (RR 1.61 vs. 1.42, P = 0.45), ORR (RR 1.26 vs. 1.49, P = 0.28), PRR (RR 1.25 vs. 1.00, P = 0.11), SRR at month 12 (RR 2.00 vs. RR 1.64, P = 0.54), infection rate (RR 0.85 vs. 1.46, P = 0.36), and SB rate (RR 0.14 vs. 1.19, P = 0.17) were found in subgroups of low dose and standard dose.
Conclusion: Rituximab was effective and safe for adult patients with ITP. A low-dose rituximab regimen might be an effective alternative to the standard-dose regimen in ITP, as it showed similar CRR, ORR, and SRR at month 12 and was relatively safer with a lower cost.
08 Nov 2021 16:43
  • MelA
  • MelA
I don't understand your guilt - I've had ITP since 1989 and living a full life, even moved to Japan shortly after diagnosis and then to Hong Kong.   

You should not feel guilty - it wasn't your decision to never have low platelets again.  Have you thought about getting help in hopes of getting over this guilt?   Life is too short to have misplaced guilt. 

Take care now!!  
08 Nov 2021 16:13
  • Ssigrist
  • Ssigrist
I had ITP when I was 11. I’m 50 now.  I have had no relapses since I was released from my 2 week hospital stay at 11.  

I deal with guilt from never relapsing.  

ive attended support groups for ITP and I’ve never met another person who wasn’t chronic.  I feel terrible around other folks with ITP because I certainly don’t understand what they  are going through and can’t figure out my role in the community that I feel like I should be a part of.  
08 Nov 2021 10:06
  • MelA
  • MelA
08 Nov 2021 07:31
  • sleev-les
  • sleev-les
Platelets 163 this past week.  Still holding :)
07 Nov 2021 17:33
  • Juliandrea85
  • Juliandrea85
Hello,
I've had a drop in my counts. 4 days after first shot with moderna my platelets were ok. But after second shot all my counts went arount 40-50k.
Now I finally got good counts again but after nplate dosage increased and 3 months of bad counts 
06 Nov 2021 21:20
  • LISAKUSZMAR
  • LISAKUSZMAR
I am 46 was totally healthy and within 2 weeks of the J&J vaccine I was losing so much blood from my period I passed out and was taken to the ER. My platelets were 7,000.  Spent 3 days in the hospital and was given Dex and 1 round of IVIG.  Platelets were at 100K, but dropped 2 weeks later.  Weeks of prednisone, more drops, 3 more hospital stays. We tried Rituximab and that failed failed, back on steroids.  Finally went on Promacta and seem to be stable.  Praying it says that way, it has been a long 6 months. 
06 Nov 2021 20:25
  • LISAKUSZMAR
  • LISAKUSZMAR
I had a similar experience with heavy period bleeding that put me in the ER after I passed out.  I was super traumatized as well.  I got an IUD placed by my OB/GYN because I knew it is known to lighten or even stop your period.  It has absolutely done that for me, which has made my period way less stressful.                                        
03 Nov 2021 10:59
  • amberyard
  • amberyard
Everyone deals with ITP differently. I was 0k-3k for a whole month, went to infusion center every morning to get a bag of platelets then went to work. I'm only hospitalized when bleeding won't stop or for my spleen removal (which didn't help). Currently I get n-plate every Tuesday with CBC.
28 Oct 2021 03:31
  • JJ
  • JJ
When I was on the romiplostim trial ten or so years ago, we didn't have the special packs so were given the vials and the water separately and drew up the water and injected it into the vial to mix it ourselves. Maybe they will let you do that. 
28 Oct 2021 01:58
  • mrsb04
  • mrsb04
That is why the maximum daily dose is 4g in 24 hours for adults  over 50kg and 3g for adults under 50kg. 
25 Oct 2021 17:41
  • lovethatgrey
  • lovethatgrey
Hello all.  
During my physical this past October the lab was unable to get an accurate platelet count due to excessive clumping.  Two attempts were made and still significant clumping.... During this same physical my liver enzymes came back high.  Since my previous hematologist is no longer on my insurance I had to find a new hematologist.  This new hematologist drew blood and did two tests for my platelet count (both with two different coagulants- Heparin and Citrate) and both came back low (99 and 120),  I am not a drinker at all.  He said that in the last 10-15 years he has seen a huge increase in Non-Alcoholic Liver Disease or (fatty liver disease) because of body weight. I am not heavy but I could stand to lose about 10-15 pounds.  I am scheduled for a liver ultrasound on Nov 8th.  
What I am most confused about are the two different approaches of both my old hematologist and my new one.  The old one never made mention of a liver issue, ever and simply wanted to monitor my platelets yearly along with me watching for any signs of bleeding/bruising.  This new hematologist scared the bejesus out of me with the liver disease. I guess I'll find out more after the 8th
25 Oct 2021 16:43
  • lovethatgrey
  • lovethatgrey
I went to a new hematologist and specifically asked what I could take for a headache or body ache.  He said Tylenol now and then is fine but he also followed that by saying that Tylenol can damage the liver if you take too much.  
25 Oct 2021 06:04
  • sleev-les
  • sleev-les

Sleev-les
Make sure you have a slower taper once you get below 7.5mg/day 


Yup.. Once I get to 10, it then only goes by 2.5mg each drop.  The doc always tries to get me as tapered as quickly as possible being diabetic and the he// that prednisone plays on my blood sugar.  Even so, we figured out that I need an initial slow taper until my body responds to the pred then we can go a little faster until the 10mg mark.
25 Oct 2021 01:44
  • mrsb04
  • mrsb04
Promacta is known to cause iron deficiency Jane T. When I was using it I had to take iron tablets. 
24 Oct 2021 16:12
  • Jane T
  • Jane T
My platelet level has been consistantly in the 30's. I have maintained this level on 50 mg of promacta. I received a flu shot last week and had a lab draw the day after. My platelets dropped to 9. I am also anemic, and have been very slowly decreasing in HCT and HBG levels. My ferritin level is also low at 6. This happened 2 years ago and I received an infusion which helped until recently. 
Seems like the flu shot could of impacted the level. 
24 Oct 2021 15:32
  • Juliandrea85
  • Juliandrea85
Hi Jane.
Vaccines can trigger ITP and also infections can do it. Maybe yours is only a temporary reaction. What are your counts?
24 Oct 2021 15:28
  • Juliandrea85
  • Juliandrea85
Thank you!!
This is a valuable information but I think my hospital doesn't have that option. Maybe in the future. Well, it's a little bit better to avoid to go to the hospital some weeks.
24 Oct 2021 15:20
  • Juliandrea85
  • Juliandrea85
23 Oct 2021 02:36
  • mrsb04
  • mrsb04
I've had the flu jab for years. Not once has it affected my count. 
23 Oct 2021 00:09
  • MelA
  • MelA
I have been getting a flu shot yearly since 1992 and have never had a decrease in count from it.  
22 Oct 2021 21:56
  • ananta
  • ananta
stateofdesign,
Congratulations on 3 weeks of no IVIG! 
Myself, before I had the usual rounds of prednisone and dexamethasone. Then I went on to Rituxan. My first Rituxan remission lasted 4.5 years, my second 3.5 years and my third time, maybe a year. Of course during those years things changed and doctors came to see that most people with counts above 30 don't need to be treated. So I haven't had to treat since 2016. Until this last May. I certainly hope that you find something that works for you.
About Healy, I used the programs called Pure, and Care, Immune System, and Spleen/Pancreas. The first two help the body deal with toxins in the environment. I also used Digest All, and Circulation. I used it pretty much daily. Healy has wristbands that snap to the wires and then to the wearable machine. There is also a coil that does the same thing without wires, which is super convenient! I am still using it, but I've graduated to other programs. Healy is sold through Multi-Level- Marketing. Yeah, I know, I also rejected it more than a year ago hearing that. But when my husband tried one, and his ongoing neck pain disappeared in 20 minutes, I decided to take a second look. It's a great product with lots of satisfied customers. 
22 Oct 2021 21:07
  • ananta
  • ananta
Hello Cindy1,
Thanks for your nice comments.  Congratulations on your 4 year anniversary! 
My ITP was revealed after a bad bacterial infection. I had a carbuncle that I let get out of hand. In recovering from that my PCP did a CBC and found I had low red cells, white cells and platelets. The reds and whites recovered but the platelets did not. Did I have ITP before and was never tested? It's possible. Perhaps I got a microorganism, I've been overseas many times. Despite all our great science, the human body is still full of unknowns. I'm reading a book right now called "The Secret Language of Cells" . It has a whole chapter on what platelets do. Platelets themselves attack bacteria, fungus, protozoa and many viruses! Who knew?
22 Oct 2021 16:40
  • mrsb04
  • mrsb04
Sleev-les
Make sure you have a slower taper once you get below 7.5mg/day 
22 Oct 2021 16:03
  • stateofdesign
  • stateofdesign
Ananta, 

That's such excellent news! I'm so happy for you! Would you be able to tell us a few more details?

- Where did you buy your Healy?
- Which "program / setting" did/do you use?
- How frequently did/do you use it?
- Where did the electrodes go?
- Are you still using it?

Myself, I've been by and large "treatment resistant" since being diagnosed Nov '20 (except thankfully for the temporary spikes that IVIG produced to get my numbers up). No pharmaceutical seems to have worked so far, but that doesn't mean they haven't stopped trying. 

On Cindy's suggestion from prior posts, I searched out PEMF treatments and anti-parasite pills. I've been doing the PEMF 3x a week for a few months now. During this treatment time, my numbers got down to 2k, and I was once again given IVIG. Later that week, I started using Turkey Tail Mushroom extract 3x daily, I saw my count go from 2k to 221k in 7 days (I'd never been higher than 160k post IVIG), then the following week it went up to 291k (completely unheard of for myself). It's fallen since down to 53k, 51k, 13k (got a cold that week, started working more, and was put on 40mg daily of prednisone by my Hema), 33k, and now back up to 73k as of today! This is easily the longest amount of time I've gone without IVIG (WOOOOHOOOO). Not excited about being on prednisone right now, or the weekly NPlate shot (both of which I've been on in the past and haven't shown to work), but I'm extremely hopeful that I'm on the right track and SOMETHING is going to keep my numbers stable (wether it's the PEMF, the Turkey Tail Mushrooms, or the pharma meds has yet to be determined). 

Thanks for sharing your story about the Healy and excited to hear more about the specific details!
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