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 

My count is generally in single figures. Paracetamol has had no affect on it 

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)

youtu.be/1TP5glJs7cw

I don't click on anything I do not know what it might be.

Chad did you post this?  What is it about?

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 

I looked at the video, saw who it was speaking and left. He's well known and often described as a quack.

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.

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?

 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.  

Good to hear! Hopefully it keeps working. 

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

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.  

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!

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.

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.

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.

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.

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.

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. 

Hello,
Has anyone traveled overseas like Long flights with low platelets? I am talking really low like 23000. I am planning to travel 18 hrs(flight travel). Prednisone bumps up my numbers usually but I don't want to be on it considering the Covid situation, especially on a long flight like this. Any suggestions?

Not sure if I am posting in the right category, but recently I experienced a wasp sting and my platelets went up. The last time they went up naturally was after a bee sting. I have IVIG on a regular basis (aprox every 6 weeks when I drop below the threshhold of 30) My question is has there been any research on wasp or bee venom for ITP?  BTW I am not going to be stung by a  wasp/bee in order to keep my plts at a safe level !!!!!!

I noticed this Chat has not been active for a while. I am guilty but when I saw AR Canada I thought of you Cindy and reminded me I hadn't checked in for some while. My husband became progressively worse with his dementia , when he became verbally abusive and physically threatening I felt it was time for him to go into LTC. He passed away after 6mths later. . For the past couple of years I have been occupied with his care and now the paperwork involved.  The odd time I did lurk to find out how everyone was doing. My plts have remained steady on the Revolade and trips to the hospital for IVIG when counts dropped below 30.(aprox every 6 weeks - sometimes 3 mths)  Hope everything is onwards and upwards (especially plts!) from now on.  High platelets everyone.

I flew from UK to Australia and back my count was 21 when I returned. I had no extra meds nor any problems. I had checked with my haemo what count I needed to fly before I left.  She told me above 1. 

Hey, Christine!
Sorry to hear about your husband.  It's not easy to see someone with dementia go downhill.  We got lucky with both sets of parents, we didn't have to deal with that.  I do remember the paper work for mum.   The funeral home we used helped us with a lot of it.  The last thing we had to do was put the car in my name, which we finally did in May.
Good that your counts have remained steady with treatment.
Take care and don't forget to check in.

The funeral home helped tremendously, I had to deal with his UK pension and deal with the health benefits being transferred to me. So
for 4months now I have been paying for my Revolade. I was told I would be reimbursed when they kicked in. - maybe early October!  Are you watching ARC? It is great they did two episodes in Alberta hoping they move to the Maritimes. Take Care.

Amylynnet, as I read your questions, it appears you and your mother-in-law assume she will die when she stops her NPlate treatment.  That isn't at all a guarantee.  At her age, it's somewhat more likely than it would be if she were in her 40s, but it's still not a given.  

Low platelets could make any bleeding that starts in the brain, stomach, or intestinal tract to become unstoppable; but that could happen even in the absence of ITP.  The odds of having such a bleed are higher with old age, because the vessels are in a weaker state then than at younger ages; but low platelets alone don't usually precipitate a bleed.  Does that make sense?

I'm 72.  My ITP has never caused me any symptoms other than unprovoked bruising, petechiae, mild nose bleed, and mouth blood blisters at the very lowest counts.  There have been times for me that low platelets didn't show any signs at all.  I've never had a massive bleed of any kind, and never been hospitalized for the disease.  When my count is above 20, I wouldn't be aware that I have ITP.  For most people, there are signs that the count has become low.  But unless massive bleeding begins, death would not be imminent or predictable.  

I wish for her sake that someone could talk your mother-in-law into entering a hospice or palliative care program.  My aunt is 93, in a clear and razor-sharp mental state.  As of 10 weeks ago, she was still living independently and driving a car.  Then she broke her hip and her heart condition has deteriorated to an insurmountable degree.  She just made the hospice decision last week.  It's not pleasant for her to know she's so close to the end of her days, but she is relieved that any suffering she's about to face will be supported by caring professionals looking out for her best interests.  And she's most relieved that she won't have to shuttle back and forth to the hospital for futile treatments that won't improve her condition. 

Wishing your MIL and all her family the best... 

So today my count is 52. I don’t know if it is the trial drug, the increased  Pred dose  or a combination of both causing the  rise from 4  last week.
What  I do know is steroid reduction starts now. I have had the week from hell with Pred side effects. I am not going to do it again. Honestly death by bleeding is preferable to Prednisolone  the way I feel at the moment. 

We still think and talk about mum.  That helps.  The funeral was hard to get through because we buried my dad at the same time.
The only pension mum had was her Old Age Security.  The advisor at the funeral home notified them for us. There wasn't much left after that.
Yeah, I record ARC and watch it the next day.  I don't care for the two girls, Vanessa and Beverly, I think that's their names.  I'm cheering for the two brothers.  I don't think they are coming to the Maritimes this time around. I haven't seen last night's episode yet.  We sure do have a beautiful country!

Yay on the  52, but it sucks that you don't know if it's the trial drug or pred.  Hopefully once you get off the pred, your count will stay at 52. Or will continue going up.  Sorry the pred is putting you through hell.