Platelet Disorder Support Association

Join Us:

Become a Member

Support Us:

Make a Donation
    Remember Me     Forgot Login?   Sign up   •  Web site Help & Info
!!! DISCUSSION GROUP RULES !!!

1. You must be a registered website user in order to post and comment. Guests may read only.
2. Be kind and helpful, not rude and cynical.
3. Don't advertise or promote anything. You will be banned from the group.
4. Report problems to the moderators. THANK YOU!

Nplate, fibrosis, Promacta

  • libelder
  • Topic Author
  • Offline
  • Take a look on the Amgen site, I'm their "poster girl", if you will, for Nplate. It's kind of a nice video, probably tells my story as well as I could here.
More
7 years 5 months ago #63170 by libelder
Nplate, fibrosis, Promacta was created by libelder
SO, back again. Monday night a nosebleed hit HARD, my "rescue" using high dose pred didn't, and I lost probably more than 3 pints. Took 911 two hours to arrive and if the cops hadn't arrived when they did I would have lost consciousness. Platelets at 2, I got 2 grams of IVIG while being transported back here to UVA plus solumedrol. Hema just came by and said the bone marrow biopsy I got on the 2nd showed some fibrosis. Now they want to try Promacta again even though it failed 10 yrs ago, but I want to be sure it won't make the fibrosis worse. Is that a side effect of Promacta? Anybody got any new wisdom for me? Thanks!
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
7 years 5 months ago #63171 by Sandi
Replied by Sandi on topic Nplate, fibrosis, Promacta
It's a side effect of both Promacta and N-Plate, Lib.
  • Hal9000
  • Offline
  • Give me all your platelets and nobody gets hurt
More
7 years 5 months ago - 7 years 5 months ago #63173 by Hal9000
Replied by Hal9000 on topic Nplate, fibrosis, Promacta
Lib, what is the latest on taking Nplate with Rituxan, Fostamatinib, and Tamiflu?

I saw the video about Fostamatinib in your other thread. Hadn't seen that one before. Sounded good to me. About clotting mentioned. My take was that anyone with a splenectomy (and isn't in remission) has higher clotting risk, not just those taking Fostamatinib. IVIG and steroids are worrisome too - when they raise one's counts.

About MMF/CellCept. My guess would be is that if you get a response from it that should indicate a row 4 issue, and, if you do not get a response that should indicate a row 2 issue. A row 4 issue would indicate Cyclosporin A as a possible better alternative over CellCept. Just a guess.

If you were taking '100' low level dose of Nplate before, I'm a bit surprised about the occurrence of Fibrosis. Is the doctor's thinking that it wasn't enough to worry about, or ?
ITP Types and Treatments by HAL
  • libelder
  • Topic Author
  • Offline
  • Take a look on the Amgen site, I'm their "poster girl", if you will, for Nplate. It's kind of a nice video, probably tells my story as well as I could here.
More
7 years 5 months ago #63174 by libelder
Replied by libelder on topic Nplate, fibrosis, Promacta
You're right Hal, doc felt the fibrosis was not serious and wasn't prepared to say Nplate related since I'm over 60 and it can happen with age. What I've seen indicates Nplate and Rituxin play OK together, I'm pretty sceptical of the tamiflu so don't expect to try it- it just has too much of a random "let's try the kitchen sink" feel to it for my comfort, and cyclosporin failed years ago so I'm even less inclined to try CellCept... But sh*t, you know? I damn near died Monday night, I was alone and where there was no 911 service and I went from OK to NOT so quickly, it rattled me. If I can just hold on til the fostamatinib comes out I think that might be the one for me, but I wish we knew when that'll happen. Thanks for your input.
  • libelder
  • Topic Author
  • Offline
  • Take a look on the Amgen site, I'm their "poster girl", if you will, for Nplate. It's kind of a nice video, probably tells my story as well as I could here.
More
7 years 5 months ago #63179 by libelder
Replied by libelder on topic Nplate, fibrosis, Promacta
And today I'm at zero. My anxiety could not be greater. Honest to god I'd rather just bleed out, if only I could rely on that and not a frikking stroke. I'm currently under the influence of IVIG, Rituxin, AND Promacta and I'm at ZERO. What now? I know, frikking watchful waiting. Oooooo, my cnfidence SOARS. NOT.
  • dru
  • Offline
  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
More
7 years 5 months ago #63183 by dru
Replied by dru on topic Nplate, fibrosis, Promacta
Wow, this stuff is never easy but you are having a really rough time. I'm hoping that something kicks in for you. Hope you can keep up your spirits in spite of all this.
  • libelder
  • Topic Author
  • Offline
  • Take a look on the Amgen site, I'm their "poster girl", if you will, for Nplate. It's kind of a nice video, probably tells my story as well as I could here.
More
7 years 5 months ago #63185 by libelder
Replied by libelder on topic Nplate, fibrosis, Promacta
What worked for you Dru? I see you've done IVIG and Rituxin, were either effective for more than a little while? I was diagnosed in '87 and for probably 20 years, until Nplate, nothing worked but I also rarely bled and never like this, enough to scare me so. I was always rock solid in my confidence, I want to be that unflappable woman again. It was easier to pull off before the brain bleed in April of '06, before I fully realized the risks. Ignorance WAS bliss, but you can't put the knowledge genie back in the bottle.
More
7 years 5 months ago #63186 by momto3boys
Replied by momto3boys on topic Nplate, fibrosis, Promacta
I don't have sage advice for you either Lib. I just wanted to say hang in there. Fingers crossed that the Rituxan will kick in for you soon and you can at least break out of hospital jail. After your scary bleeding incident you deserve some kind of good news!
  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
More
7 years 5 months ago #63191 by Sandi
Replied by Sandi on topic Nplate, fibrosis, Promacta
Lib, unfortunately, it gets harder with age because the blood vessels get weaker and thinner. The only advice I have is high dose Vitamin C which can help strengthen the vessels.
Hang in there. Something will work eventually.
More
7 years 5 months ago - 7 years 5 months ago #63195 by poseymint
Replied by poseymint on topic Nplate, fibrosis, Promacta
Hi Lib- Sorry you are having a tough time. You said you used to not be a bleeder. I wonder if there is anything you are doing or eating differently that would make you bleed? I mean besides age as Sandi said- Vit C is a good suggestion.

I bleed when I take turmeric, and Omega 3. I stay away from flax seed oil, garlic, cayenne as they are supposed to thin the blood or stimulate immune system. I don't have any more tips but just wonder why things would change to become an emergency bleeding situation? take care
ps I just did a google search for "strengthening blood vessels and repairing blood vessels". Basically its all about Fruits and Veggies! no surprise
  • dru
  • Offline
  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
More
7 years 5 months ago #63214 by dru
Replied by dru on topic Nplate, fibrosis, Promacta
I do respond well to prednisone but the side effects are tough. Rituxan works great for me, it takes about 8 weeks and I react badly to it but my remissions last 2 years at least. I’m going to have Rituxan infusion tomorrow at Brigham and women’s hospital in Boston in the allergy immunology clinic where they can deal with my reactions to it. I am really interested in fostamatinib as it is supposed to have good results for hemolytic anemia and ITP
Platelet Disorder Support Association

Donate

About

Stay Informed

Follow Us

IMPORTANT!

The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.


Platelet Disorder Support Association
8751 Brecksville Road, Suite 150, Cleveland, Ohio 44141
Phone: 1-87-PLATELET | 877-528-3538 (toll free) | or 440-746-9003
E-mail: pdsa@pdsa.org


© Copyright 1997 - 2025, Platelet Disorder Support Association. All rights reserved.
The Platelet Disorder Support Association is a 501(c)3 organization and donations are tax deductible to the fullest extent allowed by law.


Privacy Policy and Terms of Use