Be a part of the ITP community and stay informed.
Login to your account or REGISTER
.

•  Web site Help & Info

Welcome, Guest
Username: Password: Remember me
  • Page:
  • 1

TOPIC: Example: Advocating for the care YOU want

Example: Advocating for the care YOU want 5 years 9 months ago #45415

  • MatthewR
  • Offline
  • Posts: 45
  • Thank you received: 7
First, a quick recap of my treatment:

8/18/14: Diagnosed with ITP due to reaction to antibiotic.
8/18 - 9/4: Treated with steroids and IVIG's. Also had two five-day hospital stays during this time.
9/5 - 9/26: Treated with Rituxan - four weekly treatments at max dosage. Also still doing daily steroids.
During the above timeframe, my counts never went about 9 and were as low as 2. Was also 'pushed' numerous times by my hemo to serious look into getting my spleen removed - and was close to doing it on Labor Day. Instead, I pushed for continued drug treatments, until I was told I should probably switch doctors to a hemo who wanted to follow MY treatment recommendations.
So...
10/13: Meet with new hemo
10/27: First shot of NPlate. Count was 6
11/5 - 11/19: Three more weekly shots of NPlate. Counts go to 92, then 200 - at which point my hemo said she wanted to try stopping the NPlate treatments.
I continued to get weekly CBC's - none of which has shown a drop and all have remained at or around 200.

So, I may never know for sure but I believe one of the following happened:
1) It really WAS the antibiotic that caused this (not just furthered it along) and it has taken this long for it to get out of my system.
2) The Rituxan kicked in weeks after those treatments stopped.
3) The NPlate kicked in.
...or possibly some combination of any of those.

My point is, had I caved to the suggestion of having my spleen removed two months ago, I'd have had it taken out for no reason. Or, should I say, that's the way it looks at this point - barring a crash in my numbers...although, assuming either the Rituxan or the NPlate worked, I know that I can continue drug treatments if they DO crash again...and not elect for surgery.

This forum has been a great guide and resource for me to make a better, more informed decision about the sort of care that I wanted for myself and not just follow what I was told by my doctors. So, I should also take the time to say thank you to everyone here!

As a sided note, my primary care physician told me that if he ever had another patient get diagnosed with ITP, that he'd bring me in to talk to them since I've learned so much about it - more than he knows at this point.

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

Example: Advocating for the care YOU want 5 years 9 months ago #45416

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12435
  • Karma: 11
  • Thank you received: 2352
Matthew - what a fantastic story! I am so glad to hear that things have turned around for you. I agree, it looked bad for a while with your counts in single digits for so long. That just goes to show that anything can happen with ITP. I had no doubt that something would work eventually. While it's going on though, patients can feel as if it will never end and sometimes hopelessness sets in.

As for your theories about why counts are staying up, I'd have to agree that it could be any or all of the reasons you listed. I guess you'll never really know, but that doesn't matter - it's all good for now! People do go into remission from N-Plate, but certainly not that fast. I think it's odd that your doctor stopped it cold turkey risking a crash, but in your case, it worked out.

I have said the same things many times about advocating for yourself. Since there are many ways to treat ITP and all doctors seem to do things differently, patients almost have to become educated and fight for themselves. There is nothing wrong with finding a doctor who will go with your preferred treatment ideas since there is no right or wrong way to treat ITP. Sometimes though, expense, side effects and time constraints must play a part in those decisions and some doctors don't get that. Many are also too quick to jump to splenectomy and do not give treatments time to work. I can't even imagine how many unnecessary splenectomies have been done.

I hope you have continued success and please don't run away from us too fast!

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

Example: Advocating for the care YOU want 5 years 9 months ago #45417

  • MatthewR
  • Offline
  • Posts: 45
  • Thank you received: 7
I agree that the decision to stop the NPlate 'cold turkey' seemed odd to me at first but the thought was that the timing - being so close to both the possible drug induction and the Rituxan treatments - meant completely stopping made more sense.

I would say I'm cautiously optimistic at this point. Certainly its a good trend in my counts but I'd prefer longer-term success before using the "R" word. We shall see! In the meantime, I plan to still frequent this site - it's the least I can do for all its done for me.

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

Example: Advocating for the care YOU want 5 years 9 months ago #45418

  • Aoi
  • Offline
  • Posts: 314
  • Thank you received: 58
That's a great story with a very encouraging outcome. I hope your counts stay up. I was in for a platelet count today, pushing for my PCP to order some related tests to see about some possible issues that my hemo is (perhaps) ignoring. My PCP was receptive and the tests were performed, and he even looked at some of the NLM reference material I bought with me to the visit.

I hope this thread reminds everyone here of the value of becoming highly informed about ITP and advocating for what you need, even if doing so requires switching docs.

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

Example: Advocating for the care YOU want 5 years 9 months ago #45419

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12435
  • Karma: 11
  • Thank you received: 2352
Many people find that, when they are unhappy with their care, switching to a second or even third doctor can make a world of difference. You two have a great handle on things!

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

Example: Advocating for the care YOU want 5 years 9 months ago #45420

  • CindyAnn
  • Offline
  • Diagnosed Jan 10, 2008. Rituxan treatment in May 2009. Treated with Prednisone off and on until 08/23/17 - 12.5mg Promacta as of 10/22/17
  • Posts: 227
  • Thank you received: 39
What a great story, it is nice to hear about successes.

I can't agree more!!!

Switching doctors has made a huge differnece for me - my ITP has not changed, but how it is treated and the stress level has gone down dramatically!!

We HAVE to be our own advocate and learn as much as we can as well as know your body and how it reacts/feels. Small changes can make a big difference.

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

Example: Advocating for the care YOU want 5 years 8 months ago #45807

  • brizee
  • Offline
  • Posts: 11
  • Thank you received: 2
How long before your ITP Dx did you take the antibiotic? I filled a script for amoxicillin on 8/15, came down with ITP on 9/22.

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

Example: Advocating for the care YOU want 5 years 8 months ago #45809

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12435
  • Karma: 11
  • Thank you received: 2352
Brizee:

The problem is that either an illness or the antibiotic used to treat it could trigger ITP. Sometimes it can be the combination; a cascade of events that disturbs/changes the immune system.

I was diagnosed with ITP after a bad cold, but had two major platelet drops twice after taking Amoxicillin. I stayed away from it for many years after that, but recently had to try it again since I am having worse reactions to other antibiotics. The last few times I used it, I had no problems.

Sometimes you can't make heads or tails out of 'cause' because the actual trigger might even be something that you didn't think of. Some people have been diagnosed after using supplements like Echinacea but they don't put two and two together because they think something was harmless. Come to think of it, I was using Echinacea around the same time that I had the bad cold, and Echinacea has been known to trigger autoimmune disorders.

It's possible that Amoxicillin triggered ITP, but you probably won't know for sure. Your counts may have started dropping slowly right after you began the drug and you didn't find out for a month, or it may not have been that at all. I'd try to avoid that family of drugs though, if possible.

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

Example: Advocating for the care YOU want 5 years 8 months ago #45824

  • Winnifred
  • Offline
  • Posts: 784
  • Thank you received: 125
I just wanted to say from the sounds of it I like your regular doctor. If I mention something I read I still sometimes get the old be careful what you read and where you get your information.

The more people learn to be their own advocate the better it will become for everyone!

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

Example: Advocating for the care YOU want 5 years 8 months ago #45825

  • MatthewR
  • Offline
  • Posts: 45
  • Thank you received: 7
Brizee:

I had been taking the antibiotic (bactrim, a sulfa-based antibiotic I'd never taken before) for only two days when I first noticed the reaction, which came in the form of petechia on my legs. I started taking it because of a swollen lymph node on the right side of my neck.

My most recent count (little over a week ago) was 250.

I will probably never know the exact cause. The bactrim could have been the trigger in and of itself or it could have been the thing that pushed the pebble over the edge of the mountain and started an avalanche. I do know that's I will never take it again. So the others are right - it can be very hard to pinpoint the actual cause - and you can elevate your frustrations by trying to do so.

As I move farther along - and , hopefully, stay with a good count, hindsight might help me develop a theory as to what happened, but I will never know for sure. But, then again, they say having a little mystery in your life is not a bad thing.

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

  • Page:
  • 1

BBB Cleveland logo GuideStar Seal NORD Member Badge 2018THSNA logo