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29 Aug 2022 03:28
  • mrsb04
  • mrsb04
Maybe contact the palliative care team. They will be able to assist the family prepare for the inevitable. No one can predict a timeline for end of life, each personal is an individual. 
28 Aug 2022 21:03
  • amylynnet
  • amylynnet
Really appreciate your response! Unfortunately, my MIL has not included other family members in the discussions she’s had (or hasn’t had) with her physician. I’m hoping this group can help me gather some information to better prepare us for the future.
28 Aug 2022 09:53
  • CindyL
  • CindyL
I'm surprised no one has replied yet.  I personally have not use Nplate, so can't help there.  But I would suggest discussing this with your MIL's doctor.
27 Aug 2022 13:23
  • amylynnet
  • amylynnet
My mother-in-law has been receiving weekly Nplate (romiplostim) treatments for ITP, and her count fluctuates between 30-45. She is 86 years old and also has Parkinson’s, which is progressing rapidly. She has made the conscious decision to stop Nplate treatments, with the intention of ending her suffering. We want to respect her wishes, but need to understand what she will be facing with this decision. How will stopping the Nplate treatment affect her overall health? Is there any prognosis on a timeline for when she may near end of life? What could the symptoms/issues look like (internal bleeding, stroke, etc.)?
EDIT: MIL has not included other family members in the discussions she’s had (or hasn’t had) with her physician. I’m hoping this group can help me gather some information to better prepare us for the future.
27 Aug 2022 10:27
  • CindyL
  • CindyL
Saw this on anther post, but didn't want to high jack the thread.
I'm sorry to hear about the count and bruises, but glad you're still on the trial.  Hopefully, your count will go up soon.
27 Aug 2022 04:19
  • mrsb04
  • mrsb04
On a prednisolone rescue as my count crashed to 4 and I'm  covered in multiple bruises. Still continuing with the trial though for the time being.
26 Aug 2022 16:44
  • mjocusa
  • mjocusa
Hello everyone,
We are looking for recommendations for a good doc in Northern California. My dad has a great specialist for big issues at USC, but his local hematologist (in the Chico area) just moved out of state and the replacement is overwhelmed and under-informed. Does anyone have recommendations? Could be in Sacramento or the Bay Area. Please DM if you have a good doc that could help with chronic ITP and all its attendant issues.
Many thanks!
26 Aug 2022 10:30
  • sleev-les
  • sleev-les
I did Rituxan last fall.  September and last infusion was the first week of October 2021.  I have been in remission since.  Last count was 3 weeks ago and 240.  I didn't have any adverse reactions.  I was tired at the end of each treatment, but they had me on Benadryl and Dex during the day so sure that is where my tiredness came from.   I would do it again if my numbers drop.  Hoping I still maintain remission for a long time, but we will sure see.  I'm 41.  I had asked about TPO's and my doc said that since I'm younger he didn't want me to start with those due to possible long term use effects.  
26 Aug 2022 01:59
  • mrsb04
  • mrsb04
Unfortunately mrsb is on a prednisolone rescue as my count crashed to 4 and I'm  covered in multiple bruises. Still continuing with the trial though for the time being. 
I too read up on Dr Berg. Some dreadful reviews I have to say.  drericbergscam.blogspot.com/2016/08/dr-eric-berg-scammer-read-this-before.html
25 Aug 2022 15:04
  • Chad89
  • Chad89
Good to hear! Hopefully it keeps working. 
25 Aug 2022 14:46
  • MelA
  • MelA
 mrsb is doing well last I heard and her count went up some.
If you lived in the Denver area there is a trial that will be starting for those w/a count <30k and treatment quit working (think I remember that right).  

Believe me I'm not the only one to "bash" the doctor - read the reviews on him.  
25 Aug 2022 12:58
  • Chad89
  • Chad89
I’m not sure. Just thought it contained some interesting information. Everyone is entitled to their opinions. All good. To be fair, he might know a little more about nutrition than the we do with whatever medical school we all went to. Don’t be so quick to bash someone and call them a quack just because they don’t completely align with what you view as a credible Dr. Maybe he doe’s specialize in weight loss and Keto. Doesn’t mean it’s wrong. There will always be skeptics on both sides. I hear what you’re saying though. Any word on this new drug trial one of our members is participating in?
25 Aug 2022 11:59
  • MelA
  • MelA
I looked up Dr. Eric Berg, DC and found he specializes in weight loss - how did he become an expert on autoimmune diseases?
I too found that he is labeled as a quack.  Thanks but no thanks Chad.
25 Aug 2022 09:30
  • JJ
  • JJ
I looked at the video, saw who it was speaking and left. He's well known and often described as a quack.
25 Aug 2022 00:46
  • Chad89
  • Chad89
Hey. Sorry I should have said what it was. It’s just a video about many underlying causes of autoimmune disorders and what is sometimes not told to patients by Drs 
25 Aug 2022 00:16
  • MelA
  • MelA
I don't click on anything I do not know what it might be.

Chad did you post this?  What is it about?
23 Aug 2022 19:03
  • Chad89
  • Chad89
22 Aug 2022 12:23
  • MelA
  • MelA
Tylenol is what I was told only to take (Tylenol and Paracetamol are the same) - just Tylenol.   It has not dropped my count to my knowledge.  Just need to make sure you don't take more than allowed in a 24 hour period!!

Why not talk with your hematologist about this?

(What I found interesting is when I had total knee replacement I had to take baby aspirin for a few weeks to ward off blood clots, well my count actually went up :) and we aren't supposed to take aspirin)
21 Aug 2022 19:13
  • mrsb04
  • mrsb04
My count is generally in single figures. Paracetamol has had no affect on it 
21 Aug 2022 17:19
  • RR01
  • RR01
Haven't started yet, I thought that taking pain meds would lower the platelet count. So holding up on that. Hence wanted to hear from you all about any experience with regular pain meds. My platelet count is really really low 
20 Aug 2022 16:34
  • MelA
  • MelA
Like you autumn I had a "feeling" my count had hit the gutter after a tetanus booster - I had not one symptom, not even faint petechiae, nothing.   I went in for a count, got a message later from one of the docs in my PCPs office that my "count was low and if you continue to feel bad come in" - WHAT?  I never said I felt bad and there was no mention of what my count was in that message.  Got in the car and drove the 4 blocks to the office and demanded to know what my count was (16k and dropping) and then went home and called the hematologist's office for an appointment.  (I have never felt bad or tired or out of sorts or anything when my count goes down)  

I used to check my arms/legs/belly for red dots - if I bumped into something I'd write down when/where so that if a bruise came up I'd know it was ok.  But I've been fortunate since having one WinRho IV after the tetanus booster dropped my count and have had decent (not normal) counts since.  

You didn't have any symptoms but you knew your count was low - that's a good sign I'd say.
20 Aug 2022 13:51
  • autumnlsmiles24
  • autumnlsmiles24
Thanks for your reply!
My concern is that I *don't* recognise my symptoms, because my count gets very low before anything appears (the petechiae on I had at a count of 3k on my most recent hospitalisation was very very faint, and it was more of a 'gut feeling' to go to the hospital than the fact I was symptomatic)...so I find myself scrutinizing my body, or noticing small marks/bruises and becoming very anxious.
Do you have any experience with this?
17 Aug 2022 14:31
  • MelA
  • MelA
RR01  how much Tylenol are you taking daily?
17 Aug 2022 06:06
  • mrsb04
  • mrsb04
Each person is unique as is their ITP to them. 
You recognise symptoms of a low count and go for a test.
If 4 days of Dex works for you then that is great. 
Personally if I was in your shoes I would carry on as you are. If you normally have a count of 170 then why do anything else? 
16 Aug 2022 14:10
  • mrsb04
  • mrsb04
Assuming Tyenol is Paracetamol, I took it regularly when I broke my wrists. No affect on my platelet count.
15 Aug 2022 14:17
  • Chad89
  • Chad89
I have an appointment with one of the Coimbra protocol Dr’s at the end of the month. I’ll pass on any useful information I receive.
15 Aug 2022 12:00
  • autumnlsmiles24
  • autumnlsmiles24
Hello lovely friends
Sorry this is a really long post.
Background:

Firstly, I am so far in my journey not 'chronic'. I have had (that I know of) 3 acute episodes. First one was at 18 years old, following a men C vaccine (symptoms were just feeling very malaise, and petechiae on my chest in clusters, noticed over the course of a few days) I eventually went in to hospital, on the basis that I just felt 'weird', and my platelets were 25k. They didn't treat me, just watched me over night, and discharged without medication, following up with a healthy count a few weeks later and until…

Second episode was October last year (11 years later), contracted covid and after a couple of days of fever and starting to feel better, I noticed a large blood blister in my mouth, petechiae on my feet and legs, and was coughing a small amount of blood (from my throat I believe). I went to hospital- count of 3k, platelet transfusion/prednisolone, kept for 4 days and discharged at 57k (platelets remained stable, and I had a successful taper in January)

Third & (I really hope) final- flash forward to today. I caught covid again a few weeks ago...was very anxious about this of course given the last time. Got through the first couple of days no problem, and the morning I was again feeling much better...I noticed the TINIEST bit of petechiae on my chest...almost invisible. So much so that my boyfriend told me not to worry and just try to sleep. After the last experience, I felt so incredibly anxious that I took myself to hospital anyway, and my platelets were at 4k. I was given 4 day Dexamethasone only (I seem to respond well to steroids) and so far my platelets seem to be recovering.
Over the past 9 months since the October relapse, my platelets seem to average at around 170k.

Now my questions!
Had I not noticed these TINY petechiae a few weeks ago, would this have been a disaster, or is there a good chance I would have recovered? I felt totally fine otherwise, no other bleeding symptoms, fever, etc. I seem to see that there is a distinction between 'bleeders' and people who get very low without many symptoms. I know that serious things can happen under 5k, and it is not necessarily worth taking the risk to stay at home and wait…but I would rather not have to spend days at a time in hospital, on the steroid treatment which had been quite harsh on me (have since developed very severe skin issues, lost a lot of hair, and the emotional side effects of not only the prednisolone but also as I’m sure many of you know, being in a hospital environment).
My biggest concern of course is that I seem to go very low before any symptoms appear, though my haematologist advised that this should perhaps be considered a good thing, as there are other components in the blood that create stability to prevent bleeding!
Does anyone else have experience with these low numbers/little symptoms?
I fear I am starting to become obsessed with numbers, instead of being able to focus on how I feel.
Are there others who only seem to experience drops like this when there is some kind of external immune stimulation involved? What are your patterns?
How do you feel anxiety can contribute to these episodes?

The other question would be about medication, and whether or not anyone believes that perhaps the ‘overwhelm’ of treatments that seem to be thrown at people with ITP in a frantic effort to bring the numbers up, could perhaps be contributing to some of the instability in platelets? Along with the anxiety we all seem to experience with ‘the numbers’, it seems like this disorder is incredibly overwhelming in terms of all of the processing/filtering of information we have to go through.

Sorry I know I’m asking a lot of things here!
I would just appreciate any insights anyone has into my history, or from your own experiences.Thank you for reading xxxxx
15 Aug 2022 12:00
  • RR01
  • RR01
I have been taking papaya leaf tablets(Swanson) - not sure if it's helping but I am continuing to take them. My platelet count is really low(25000) but I guess it helps to stay clear of any petechiae or bruises.
Category: Newly Diagnosed
15 Aug 2022 11:24
  • dejesus
  • dejesus
Hello everyone,
I have a 13 year old daughter who has chronic ITO (diagnosed about 1 year ago).  Has anyone tried papaya leaf tea in combination with medication or alone? Any good results?

Best,
Maria
Category: Newly Diagnosed
15 Aug 2022 10:48
  • RR01
  • RR01
Does anyone take Tylenol daily with ITP. Does it affect platelet count? 
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