Welcome, Guest
Username: Password: Remember me

TOPIC: Questions for Those Experienced with ITP

Questions for Those Experienced with ITP 4 years 4 months ago #48169

  • Ann
  • Offline
  • Posts: 1895
  • Thank you received: 355
I have to disagree with DeeDee. There has never been shown to be any foods that lower platelets. Alochol will do so if you are an alcoholic with liver problems.

Some foods have been shown to 'thin' the blood ie they affect platelet aggregation but only in a very minor way. You'd have to eat or drink a lot to notice.

I've done a lot of research on this so it isn't quite just my opinion!
The following user(s) said Thank You: Red Nighthawk

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

Questions for Those Experienced with ITP 4 years 4 months ago #48170

  • DeeDee Marie
  • Offline
  • Posts: 860
  • Karma: 1
  • Thank you received: 143
Ann,

We are all different and each case is different. You cannot judge by just what you have read. As it is, I react to alcohol anyway and certain medications. So do not put us all in the same group. Plus, I've never had to take N-Plate or Promacta which I am glad for it. It doesn't mean that I will not relapse. When you are scared, it is worth a try. My neighbor ended up with Lupus just from taking a cholerstral drug--and it's been years and she gets worse. So, please don't lump us all in the same category however knowledgable you are.

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

Questions for Those Experienced with ITP 4 years 4 months ago #48171

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2338
Deln:

I have never read anything that states that diet helps with ITP symptoms for sure one way or another. Some people claim that Vitamin C can help, so you could try that.

As for Prednisone, don't let yourself be talked into staying on it for too long. When you start having setbacks from the taper and have to keep starting over with high doses, it may be time to discuss other treatment options. You will continue having the ups and downs if you stick with something that isn't working as well as it should be. That can greatly add to the frustration and make the low counts an endless nightmare. A change in treatment could help you stabilize sooner so that life can become normal again. Many people here have said that N-Plate or Promacta totally turned their lives around.

When I was first diagnosed, I felt the same way that you did. I felt fear and anger, I felt self-pity, violated, intruded upon, sad, crazy....many different emotions. I came here and found many calm people who went about their lives, and they became my role models and voices of reason. They showed me that there is a normal life after/during diagnosis and in time, I discovered that they were right. I read the stories of others and found things that helped me through it. I try to share those things with the newly diagnosed when they occur to me. One of those things had to do with perspective. I met a woman who had both ITP and APS. Basically, that meant that she had low counts and serious blood clots at the same time. She could not get her counts up with the treatments available then, and also had to use blood thinners. That is a lot to juggle. I was amazed at how she took it in stride and wondered why I was so freaked out. I could get my counts up and although I didn't like the treatments, I did have one that worked.

I also met several women who had ITP and Autoimmune Hemolytic Anemia. Every time they got their platelets up, their red counts dropped and vice versa. That's the way things go with those two combined disorders; it's like a see-saw. It was a constant struggle for them. I've also met some people here over the years who have TTP. They don't come here often, but if you read about that disorder, it makes ITP seem so much easier. After that, I saw my situation in a whole different light. So for me, reading about people who had more difficult struggles did help. It spun my perspective.

I also realized that I was lucky because ITP didn't hit me until I was 35. I'd already had my children, so I didn't have to worry through a pregnancy like some of the women here. I didn't have to deal with ITP through my teenage years and beyond like so many ITP patients. I flipped that coin over and looked at the shiny side. Again, perspective. I am one of the judges for the yearly PDSA college scholarship and I read the most amazing essays written by these teenagers. They have so much insight for people their ages and they found the positive in this situation. I know that takes time and some people never do find anything positive about it, but it's there if you look hard enough. It changes who you are whether you like it or not, but it does not have to be a negative change.

I know ITP is hard and I remember it well. I struggled with it for 8 years before I finally got a sustainable remission. My counts were under 5k several times. With the newer treatments available now, most do not have to wait that long. My main goal through it all was to keep life as normal as possible for the sake of my children. I think that is also what helped me keep my sanity. I didn't want to be a wreck of a mother and I didn't want my kids to remember their childhood that way. I did my best but yes, there were a few incidents when I lost it. We laugh about that now. I allowed myself to feel angry or sad only at certain times and the rest of the time, I just let it go and honestly, between my job and 3 kids, I didn't have time to dwell on it. You will find tricks or certain things that make you feel better about all of this, but in the meantime, I am trying to share the things that made a big difference for me.

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

Questions for Those Experienced with ITP 4 years 4 months ago #48174

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2338
Oh, one other thing that I just remembered that helps me get through tough times. My daughter was diagnosed with an autoimmune disorder when she was about 21 (seven or eight years ago). I was so angry and devastated...you can't imagine. I'm not particularly religious, but it was a 'shake your fist at God' kind of angry. She took the news much better than I did, although I didn't let her know how bad I felt. I realized at that time that I would gladly take the hit, any hit, if this crap would leave my kids alone. I know it doesn't quite work that way, but everything is a little easier to accept knowing that it got me and not them.

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

Questions for Those Experienced with ITP 4 years 4 months ago #48175

  • DeeDee Marie
  • Offline
  • Posts: 860
  • Karma: 1
  • Thank you received: 143
Deln,

I am very religious and do pray a lot--but that is just me. Just thought you might also like to check out the PDSA Facebook page. I belong to it and read some of their postings. It is very helpful at times as someone is always posting information; and, you can see that we are all different. Just ask to join their FB page.

www.facebook.com/groups/PlateletDisorderSupportAssociation/

Good luck to you!
The following user(s) said Thank You: Red Nighthawk

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

Questions for Those Experienced with ITP 4 years 4 months ago #48183

  • DelnStyle
  • Offline
  • Posts: 177
  • Thank you received: 1
Sandi, DeeDee and Ane,

Thank you all for your responses. You are all very insightful and it's nice to have people to talk to, who have gone through similar situations. I guess there's just comfort in knowing that other people have gone through these issues, and there is always hope for something positive, since others have gotten through it.

My largest worry (to go off of what you are saying Sandi) is that my kids (I have two) will have something similar to me. I've said it to myself and my wife that I would rather all this stuff happen to me, than to my kids.

One drawback, though, is that I feel 'limited' with this ITP, at least when I have a ongoing episode of it. For instance, because I know my platelet count is under 5,000 at the moment, I cannot fully enjoy or participate in simple things, for I'm worried that my 3 year old might accidentally hit me in the head, or do something that would end up causing massive problems.

My other anxiety comes from treatments in general, at least the more 'invasive ones'. I don't consider Prednisone too invasive, at the moment. I pop a pill, go on with my day. I don't consider IVIG too invasive, other than the fact that I hate getting an IV and have poor veins. Though once they get the IV actually inserted properly, it's not too bad.

What I'm concerned, mostly, about is that there are other treatments that you've been talking about. NPLATE, Promacta, Rituxin. These treatments, which are treat if they do work for people and put them in remission, still make me nervous. A drug that stimulates my bone marrow like that, must have some side effects. Perhaps not immediate, but at what cost?

Perhaps I'm just paranoid... I'm just not someone who generally likes to put any medications in my body, yet alone a bone marrow stimulant. I supposed, if worse comes to worse, and I have no choice in the matter I'd do it out of necessity. But I would like to prevent that, if possible.

With this ITP episode, it feels like my life is on 'pause'. Like, I'm just waiting. Waiting to get better. Waiting not to get injured. Waiting to have my mouth/gum tissues heal so I can eat foods I want to eat. Then, there's always the thought that it's not like this is a 1 and done. I know, that with a high probability, I will likely battle this again. Maybe 5 years, maybe 10 years. You are always at the whim of this, and your 'normalcy' can be taken from you in a moment.

Sure, I won't go about my every day thinking of it (Just like I truly hadn't for the past 4 years)... but it always lingers there, and these 'traumatic/emotional' experiences won't be shaken.

It is frustrating. I guess it either builds character or breaks you down.

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

Questions for Those Experienced with ITP 4 years 4 months ago #48184

  • DeeDee Marie
  • Offline
  • Posts: 860
  • Karma: 1
  • Thank you received: 143
Deln,

I can completely understand your frustration, especially since you have a young family.
We have other members on this site that have gone through this like you, while supporting
their families. Hope you can get a chance to read some of the posts from Jack (Weirdjack) as he is truly an inspiration. Some of us can tolerate these new medications very well, while others,
like myself, cannot. You know your own body by now and what you can take. I knew at a very young
age that I could not tolerate a lot of medication. Plus, my family had a history of bone marrow
problems. Like Sandy said, she started out very young and was able to raise all of her children.

I think you will do just fine once you get over the "fear" part. Just keep studying this illness
as much as you can and take time to learn. I have attended two conferences so far and plan to go again in a few years.

I would also suggest to try and keep up your health in all other aspects as this will benefit you in the long run. Try not to be too hard on yourself as, hopefully, it will get better in the future and you will learn to live with it. This is why I enjoyed the conference as I met all different types of people with ITP. Some people would "crash" like I do; others had platelets that stayed in the 20-30 range and did just fine; and some stayed about in the 50 range. What was really inspiration was the young ambassador girl (now about 13).

Good luck to you and try not to fret too much. :)

Dee Dee

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

Questions for Those Experienced with ITP 4 years 4 months ago #48188

  • mrsb04
  • Away
  • Diagnosed in 2014. I'm also a renal specialist nurse
  • Posts: 1277
  • Karma: 7
  • Thank you received: 314
Dein Have a look at this
www.ebmt.org/Contents/Resources/Library/Resourcesfornurses/Documents/ITP%20Handbook.PDF
I'm a nurse but had little knowledge of ITP until I was diagnosed. I read this at the very beginning of my ITP journey and found it very helpful
The following user(s) said Thank You: Forevertwentyone

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

Questions for Those Experienced with ITP 4 years 4 months ago #48193

  • DelnStyle
  • Offline
  • Posts: 177
  • Thank you received: 1
Thank you all for your responses.

It's nice to have people to talk to, in general.

Out of curiosity, I currently take QNASL for nasal congestion and stuff. I'm wondering if this is contributing to my mouth-bleeding issues, as it's a steriod as well. I wonder if the combination of prednisone and the nasal spray is messing with the tissue lining and making the mucusal bleeding worse than it otherwise might be?

I can't find information that directly links this though, perhaps one of you have experience with nasal spray inhalers?

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

Questions for Those Experienced with ITP 4 years 4 months ago #48196

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2338
I wouldn't think that a nasal spray could cause problems. If anything, it might affect nose bleeds, but not mucusal symptoms.

I know it gets to you emotionally, but you have to focus on what you can do, not what you can't do. You can still walk, talk, see, hear, laugh, cry, hug....all of the things that make up a normal day. You can still play with your children...there are board games, video games, coloring...you just have to modify things a bit. As for foods, I wouldn't think you'd have to change your diet that much. I never did. If there is a food that bothers you when you have blood blisters, that's just a temporary thing. It's not like Celiac's or Diabetes where you're restricted for life.

I understand the fear of the invasive treatments. I get it. But the alternative is fearing low counts which you are dealing with now. It's a trade off. The safety record for the TPO's is good right now. They are not seeing many long-term problems after 10 years of using these meds. Sometimes you have to deal with now, now, and worry about later, later. Prednisone does not come without problems either. It can cause osteoporosis, cataracts, glaucoma, bone necrosis, diabetes and many other long term-problems. It is 'just a pill', but it's a nasty drug that has many bad side effects.

As for worrying about dealing with ITP for life, you can't think like that. Like I said, I dealt with it for 8 years and never in my wildest dreams thought I'd get a remission. It's been nearly 10 years now. You never know. N-Plate has been causing remissions for people which was unexpected, but it does happen. Things always seem the bleakest in the middle of the storm but most storms do pass.

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

Questions for Those Experienced with ITP 4 years 4 months ago #48199

  • DeeDee Marie
  • Offline
  • Posts: 860
  • Karma: 1
  • Thank you received: 143
Deln,

My first episode of ITP was brought on by a medication. I was having outpatient surgery and the medication was some kind of Mortrin they gave me (instead of putting me under). During surgery I felt like my heart was going to stop and had extreme pressure. The next day my mouth was full of "wet purpura"--all over. Then, they just kept going down week after week. So, I am different than most with ITP. My second episode was brought on by stress and being bitten by a bug. I felt them drop immediately (of course, they could have been slowing going down before this happened--this was the culprit).

During the second episode I stopped taking Sinequan which is known to lower your platelets.

Dee Dee

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

Questions for Those Experienced with ITP 4 years 4 months ago #48203

  • weirdjack
  • weirdjack's Avatar

One drawback, though, is that I feel 'limited' with this ITP


Many of us live normal lives with low counts.
Not to minimize the issues of ITP; but one is far more likely to be run over by a big purple bus filled with soccer-hooligan-nuns, than to have massive problems from being accidentally hit in the head by a child (No disrespect intended toward nuns who enjoy soccer...or even curling).
I've played music in biker bars on weekends for much of the past 12+ years of my own ITP adventure.
Drunken bikers are scarier than 3-year-olds....but you can lullaby them just the same.

Hang in there, it gets easier. :)

I agree with Sandi though, try something more mellow than Prednisone for treatment.

.

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

Questions for Those Experienced with ITP 4 years 4 months ago #48230

  • DelnStyle
  • Offline
  • Posts: 177
  • Thank you received: 1
Weird Jack:

Just curious what do you consider more 'mellow' than prednisone?

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

Questions for Those Experienced with ITP 4 years 4 months ago #48231

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2338
My answer:

Everything else (except Dex)!

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

Questions for Those Experienced with ITP 4 years 4 months ago #48232

  • weirdjack
  • weirdjack's Avatar
Amen Sandi!

Almost every other ITP treatment is more mellow than Prednisone, except Dex. :)
But I would honestly rather do Dex pulses, than use Prednisone again.
Prednisone has been around since the early 1950's...ITP treatment has progressed some in 60 years.
Everyone is different, but we do have many treatment options available today.


.

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

Questions for Those Experienced with ITP 4 years 4 months ago #48239

  • DelnStyle
  • Offline
  • Posts: 177
  • Thank you received: 1
Weird Jack:

From what I've read regarding your situation, you carry a low count like myself.

I'm now in my 4th day of 60 mg prednisone. I think the prednisone is a double edge sword for me now, as my gums seem to be weakening, which in turn, is making them easier to bleed.

I'm not sure how much longer I should continue on prednisone and give it a fair chance to help rebound my platelets a bit. I just don't know what to do at this point.

But I see that if you carry low platelets around 15,000 you are managing just fine, so perhaps I shouldn't be too concerned that I have some minor mouth bleeds.

So far there's been no 'non-stop' bleeding. It's all 'stopped' but in the mouth, it's difficult when I eat and stuff, like brush teeth because the gums are so tender and any little cut or scrape will cause a slight bleed and then a blood clot/blister will form around the gum line.

Also, I noticed you are in Ohio. I live fairly close to Columbus myself. Would you mind informing me of the specialist ITP doctor you see?

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

Questions for Those Experienced with ITP 4 years 4 months ago #48280

  • weirdjack
  • weirdjack's Avatar

"Would you mind informing me of the specialist ITP doctor you see?"


I see Dr. Spero Cataland at 'The James' (Ohio State University hospital system).

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

Questions for Those Experienced with ITP 4 years 4 months ago #48327

  • DelnStyle
  • Offline
  • Posts: 177
  • Thank you received: 1
Hello All:

I had a very interesting discussion with my Doctor. So, the current situation is that the 60 mg prednisone isn't having much effect. I was at 1,000 again yesterday. So, I was given a dose of IVIG and will check my counts on Thursday to see if that has helped boost the numbers.

The interesting part of all this conversation is this, and I'm not sure if this holds true as a general statement or analysis but here's the issue.

My body is likely 'always' in a state of ITP, as I've typically had 'normal' levels of 90,000 - 100,000. Obviously, us ITP people know that levels of that nature, although 'below' normal limits, are just fine and usually most people will not be symptomatic at those levels.

What has happened is that, most likely a viral infection, has triggered the antibodies in my disregulated immune system to attach themselves to my platelets, and (potentially) has had a negative effect on the production of platelets. So, my once "in balance" and 'manageable' chronic ITP levels of say, 90,000, has now recently been thrown out of whack, causing a destruction and production problem.

The "good" news in all this, is that the Half-Life of these antibody to platelet issues, EVENTUALLY GOES AWAY and clears itself out of the system. The question is the following:

1. WHEN

2. How to be "SAFE" in the meantime.

So, my take from this, thus far and what we know is that I need to 'temporarily' maintain or increase my platelet count to above 20,000 for 'safer' or at the very least, non-symptomatic levels (such as No Wet Purpura).... and "ride it out" until the system flushes out this antibody that attaches to the platelets.

What I find interesting, however, is that this also may allieviate the need to start or take some of the other drugs, like a Rituxin, or CellCept or NPlate, for instance. Because, eventually, the antibody attaching to the platelets will wipe itself out and then, you really don't know whether an additional drug was actually needed.

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

Questions for Those Experienced with ITP 4 years 4 months ago #48328

  • tamar
  • Offline
  • Posts: 469
  • Karma: 2
  • Thank you received: 61
Sorry, Dein, I don't know how your doctor can know that. I think he/she is misleading you or he/she is misinformed about the nature of ITP.

Why do you think Sandi and Melinda and Ann and I (and many others) have been here for 10 years or more? It's not because ITP is predictable, that's for sure.

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

Questions for Those Experienced with ITP 4 years 4 months ago #48329

  • EmilyK
  • Offline
  • Posts: 449
  • Thank you received: 66
Delyn
I wish and hope for you that your doctor is correct, but why do any drugs exist to help cause a remission if everyone would get there on his/her own? Why have they been removing spleens for many years if the problem just fixed itself. I do not know of any auto-immune disease that is guaranteed to go away on its own. My fist hematologist thought he could reset me with prednisone like resetting a computer. That didn't work. We are all different but please have a realistic expectation about the course and nature of ITP by reading everything you can.
Emily
Diagnosed Jan 2015 at age 50 with 13,000.

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

Questions for Those Experienced with ITP 4 years 4 months ago #48330

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2338
Deln:

I agree with Tamar, that is an overly optimistic view of ITP. Things don't quite work that way.

WHEN: ITP can remit on it's own, but it does not happen often. Most of the time, the platelets need help in the form of treatments. Some people get remissions from the first or second treatment, but many do not and it can take a long time to get to that point. Some people never have remission but they are able to manage ITP in some way. You're back to thinking that all ITP is acute and just goes away. Forget about that now and start considering the word 'chronic'.

SAFE: The only way to maintain safe counts if they do not stay above 20k on their own is to treat. I truly think that you should consider your next step to be Rituxan or N-Plate. You can choose to wait it out until your system 'flushes' it but that might never happen. Antibodies can be an endless cycle until something stops them. The antibodies don't just slowly fade themselves out in some half-life, at least, not often. How long would you actually be willing to wait it out? Six weeks, six months, six years? What would you do in the meantime?

Years ago, we used to use the term 'burn itself out' in relation to ITP but it wasn't very realistic. It can happen over time but as I said, treatments can have a lot to do with that and you don't want to sit at 1k waiting for that. People also used to believe, as Emily said, that Prednisone would reboot the immune system, but that terminology has been gone for a long time too and was overly simplistic.

We're trying to give it to you straight here. I think you're in denial about having to move on to another treatment and I'm sorry to have to say that. Realistically, most people don't sit around with low counts waiting for the day when it resolves itself. Sometimes it takes a more proactive approach.

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

Questions for Those Experienced with ITP 4 years 4 months ago #48371

  • DelnStyle
  • Offline
  • Posts: 177
  • Thank you received: 1
Counts at 5,000 today. So maybe IVIG helped a bit. Slowly, maybe.

I guess we'll see what's next. Since prednisone hasn't really worked we'll probably have to taper it down and supplement with ivig.

During the last visit, the potential next steps, however could be:

1. Cell Cept

2. NPlate

My understanding though is these are longer term maintenance treatments. So how do you really get off of them if you start them in the first place?

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

Questions for Those Experienced with ITP 4 years 4 months ago #48372

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2338
You get off of them if you have a remission or decide try something else. N-Plate has been successfully causing remissions which was unexpected with this drug. You need a doctor who knows what he is doing with N-Plate. Way too many doctors do not dose properly.

Personally, I don't like CellCept because of the long-term cancer risk. It doesn't always work for ITP and it doesn't work quickly. I've been on it for another autoimmune disorder and didn't like the side effects.

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

Questions for Those Experienced with ITP 4 years 4 months ago #48375

  • DeeDee Marie
  • Offline
  • Posts: 860
  • Karma: 1
  • Thank you received: 143
Deln,

I know Sandy and others don't like the Decadron pulses, but I did them almost 5 years ago (along with a 24-hour IVIG drip) and it did give me a (almost) 5-year remission. I would always be happy with that--especially if I relapse soon. Did you see the doctor that Jack recommended? I think Jack said that he uses Decadron as a "rescue" treatment at times, too.

Good luck on your decision. When times are better, try to go to one of the ITP conferences. I was so happy last year when it was here in California!

Good luck to you
Dee Dee

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

Questions for Those Experienced with ITP 4 years 4 months ago #48378

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2338
It's not that I don't like Decadron pulses, I don't like the stories I've read from people who have done them. I would prefer to try a Decadron pulse over months of Prednisone though. Very few people have seemed to be successful with it. You, DeeDee, have been one of a few exceptions who did have success.

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

Questions for Those Experienced with ITP 4 years 4 months ago #48385

  • DelnStyle
  • Offline
  • Posts: 177
  • Thank you received: 1
Boy, this 'ride' is so fun... unreal.

Okay, so tomorrow I'm supposed to get another IVIG infusion.

I'm tenatively scheduled, then, depending on its effect, to get Rituximab on Monday.

I'm just so messed up right now, I don't really want to put this stuff in my body. I mean, I obviously have the 'final say' and can refuse it. But I'm just wondering what the real benefit is. First, it may or may not work, and ALSO takes awhile to likely show effect. In the meantime, by the time to Rituxin may work, perhaps my body and platelets would have been bouncing back more naturally, so I'd feel like I took the drug for no real purpose. What, do get myself to maybe, 30,000 temporarily? Doesn't seem like a big benefit given the risks.

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

Questions for Those Experienced with ITP 4 years 4 months ago #48386

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2338
Deln:

It's unlikely that your body will spontaneously remit. I'd go with that for now and try to accept it. Even if by chance that would happen, you don't know when and should do something in the meantime.

If your counts are not up tomorrow, it's also unlikely that IVIG does not work for you. Another IV might not make any difference. It will cost you time and expense for little to no benefit but since you tolerate it okay, it won't hurt to go through with it. It's not a very toxic treatment.

You're right, Rituxan does not always work. If it doesn't, you waste a month having infusions for nothing. Again, it is expense, time and toxicity. Many feel that the risk is worth the possible benefit, some do not. I believe the success rate is 50% to 60%.

If I were in this situation, I would personally skip Rituxan and go to N-Plate. There is a fair chance that you will move on to that anyway if Rituxan fails. N-Plate has a greater than 80% success rate. If you are failing Prednisone and IVIG (which is rare), you don't seem to be a good responder to first line treatments.

That's just my opinion and of course you can choose what you want to do. I know it's confusing, but for someone who truly wants to reduce toxicity, that is not a bad plan.

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

Questions for Those Experienced with ITP 4 years 4 months ago #48389

  • mrsb04
  • Away
  • Diagnosed in 2014. I'm also a renal specialist nurse
  • Posts: 1277
  • Karma: 7
  • Thank you received: 314
Cellcept didn't do anything for me other than make me feel depressed

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

Questions for Those Experienced with ITP 4 years 4 months ago #48390

  • EmilyK
  • Offline
  • Posts: 449
  • Thank you received: 66
Deln,
The ride is horrible. Everyone (well almost everyone) who gets to this website starts out by saying that the diagnosis was a surprise, that we were living "normal" healthy lives, working out, eating right, not smoking, enjoying our families...and then boom, you have symptoms which lead you to a hematologist who turns your life upside down in a minute. I don't even have a primary care doctor! From the research I have seen, less then 10% of adults have a spontaneous remission so now it is time to think through what options you are willing to try and in what order you are willing to do so and under what time line. I started a thread on this list in January when I was diagnosed. My feelings have run from suicidal to scared to terrified to angry to sad, everything in between and back again. Each morning I wake up and think, "this hasn't really happened to me has it?" The fact is, it has happened and I have no idea why. I keep thinking that I must have done something really bad in a prior life.
I tried NPlate and the doctor got scared when my number dropped to 4,000 and we did Rituxan thereafter. My last Rituxan IV was on March 16. My platelets continued to fall while I tapered Prednisone, but as of March 26, they have been between 70,000-88,000 and I am still tapering. It is only a month of good numbers and I am still tapering Prednisone, but it gives me some hope. There is no way to know which treatment might work or which will not work. As Sandi said, NPlate and Promacta have a 80% response rate. Hang in there, but keep track of your counts and all medications you are on and the results! There is no other way to see what might be helpful. Come up with a plan that seems ok and be ready to continue to ride the ride you never signed up for. Good Luck.
Diagnosed Jan 2015 at age 50 with 13,000.

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

Questions for Those Experienced with ITP 4 years 4 months ago #48393

  • DelnStyle
  • Offline
  • Posts: 177
  • Thank you received: 1
Thank you alll. As you all know, this is a hell of a ride. So many ups and downs and what ifs.

I definitely feel depressed.

Sandi, I am curious about your advice then. My goal, in taking a second line drug is to reduce or minimize Toxicity.

Nplate is highly recommended by you it seems. I agree when looking at statistical info, 80% response rate is better than 50-60% and if it reduces toxicity, then it seems like Nplate would be a better bet.

Why then, in general, would be a benefit of Rituxin over NPlate?

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

BBB Cleveland logo GuideStar Seal NORD Member Badge 2018THSNA logo