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
×

Advanced Search

Search by Keyword
×

Search Options

Find Posts from
Sort Results by
Search at a specific date
Jump to Result Number
Search in Categories
×

Search Results

Searched for:
21 Jul 2022 17:11
  • JJ
  • JJ
The latest Omicron is called Centaurus or BA2.75. The newest vaccine should cope with BA4 and 5 too which the original vaccines don't.

Oddly I had a high temperature after the last vaccination which is the first time I've had any reaction. The blood test done at the same time showed that I had no B cells at all so made no antibodies but maybe something else was happening.
21 Jul 2022 10:09
  • CindyL
  • CindyL
This was my fourth.  And I hear we have new variants forming, so I have no doubt we'll be getting another shot.
I'd be willing to get a yearly booster if I need to.
We've already had the Omicrom.  Not sure what the new one is.  Have you had any reactions to your shots, JJ?
20 Jul 2022 19:08
  • JJ
  • JJ
In the UK we are going to get another covid vaccination in September or so. This time it is likely we will all get a Moderna updated for Omicron, so I'm told. It'll be my sixth! Fed up with them now.  
19 Jul 2022 09:40
  • CindyL
  • CindyL
I totally agree with you Mel!  This is going to be around for a very long time!
We received a notice from the landlord about still wearing masks in the common areas.  Yesterday, Steven had to go down to his office and thanked the LL for the notice.  Not that it really makes a difference, we would still be wearing our masks anyway.  We wear them in the stores or anyplace there are a lot of people.  People just don't care anymore.
Both of Cathy's kids had mild cases of it., but she and hubby both got away without it.
I couldn't wait to get my first shot so I could go see my mother in the nursing home.  I don't understand how your friend refuses to get vaccinated, especially since she takes care of her mother.
I hope your son, grandson and niece are all feeling better!  Steven says he has no doubt that we'll probably get it.  We'll just try to avoid it as best as possible.
19 Jul 2022 00:27
  • MelA
  • MelA
My son was just a couple days shy of getting his 2nd booster when he came down with symptoms - he got it from his son who was just shy of getting his 1st injection as his age group finally was approved.  Interesting our young grandson was over his in 3 days and thankfully not real sick - our son had it not too good, high fever etc.    My fully vaccinated niece got it from her son who is fully vaccinated, her daughter fully vaccinated got it too.  The fully vaccinated husband of a friend just tested positive.  A friend who I haven't seen for quite a while because she refused to get vaccinated has it - what I don't get is she has a mother who is demented and she is there taking care of her and wouldn't get vaccinated knowing her mother is high risk, haven't heard yet if mother got it.    Just telling you all this because I think we will be having covid vaccines for a long time to come :(       

Nope, I wouldn't get another Moderna again - you have had 2 reactions to it.  

I haven't been on the computer till now so haven't seen the photos yet - it is late so I'll look tomorrow.   
18 Jul 2022 09:41
  • CindyL
  • CindyL
Nope, no reaction like this.  The first Moderna dose made me sick for a couple of days.  The ER triage nurse called it "localized reaction" and that it's normal.  He did suggest I not get Moderna again and take Tylenol.  According to the nurse who gave us our shots said as far as she knows, these will be the last ones.  Yeah, right!  With more variants coming out, I'm sure our government will suggest another booster.  I wouldn't mind if I had to get it once a year like the flu shot if it will keep me safe.
Steven's shot came out of the same bottle as mine and had no reaction.  I will say, the redness is almost gone and the heat isn't as bad.  Today makes day 5 and the arm is still a bit sore.
Pictures will be posted later this afternoon.  Enjoy them!  We went to the nature park.  Cathy actually bought a book on hiking in New Brunswick and has a few trails picked out for us.
17 Jul 2022 18:27
  • MelA
  • MelA
Good heavens Cindy, that didn't happen with the other injections if I remember right.  Bless your heart - I don't blame you for getting out in the good weather & clean air with Cathy (plus I need photos to look at :) ) instead of waiting around.  Did they give you any tylenol or something to maybe quiet that reaction?  I'm so sorry!!
17 Jul 2022 12:06
  • CindyL
  • CindyL
Mel, I'm still waiting for the breathing test appointment.
Just wasted 2 hours at emerg and plan on calling my doc tomorrow to see if I can get in to see him soon.
We had our 4th (and final, I hope) boosters on Thursday.  Now my arm is red and hot to the touch.  Triage nurse said it was a localized reaction.   I didn't feel like sitting there for 5 or 6 or 7 hours only to be told they couldn't do anything.  And I didn't want to miss my walk with Cathy!  The triage nurse did mark the red spot in case it grows.
So, we are going to be late getting out, but Cathy and I are going for our walk!  We're going to another park we have here in the city.  The only thing is, the trails there are mostly short ones.
17 Jul 2022 00:25
  • MelA
  • MelA
Cindy, your doctor sounds thorough and that is good!  Has the breathing test been scheduled?   Can you email your doctor, or call his office, to ask if you will still be seeing the specialist?  
13 Jul 2022 19:34
  • EdwardJacob
  • EdwardJacob
They thought I had ITP for several years. My platelets kept on a slow slide down. No treatment was needed, I was told, until they got lower. A number of treatments were finally tried. I too was tired all the time. Finally, I had a bone marrow biopsy. It sounds terrible, but is no big deal. The use lidocaine. It doesn't hurt. There is a dull ache which goes away in a few days. It showed blasts in my bone marry. I have Leukemia. I am 76. I am now going through chemotherapy. While there are risks at this age, I am fortunate that I have Medicare and a good supplemental plan. While the treatment and the disease are dangerous stuff, I wish I got the bone marrow biopsy 10 tears ago. I hope I survive the treatment and have a few more years. 
13 Jul 2022 02:28
  • mrsb04
  • mrsb04
Vancouver 40
Have you been diagnosed with a parasitic infection? 
12 Jul 2022 14:38
  • Vancouver40
  • Vancouver40
Thank you MelA for your prompt reply. I respect your perspective. Has anyone used Parastroy? What was your experience?
12 Jul 2022 14:21
  • MelA
  • MelA
No, I have not tried it and I will not try it without being told that I do have parasites and this stuff will take care of the problem - that would be like taking blood pressure medicine without having high blood pressure.   Also I wouldn't touch the stuff unless my hematologist looked at the ingredients first, I wouldn't take it even if he said the ingredients won't mess with my platelet count.    Sorry - know this isn't what you are looking for. 


You asked this in 2 places and the above is what I wrote in the other location.

While researching parasite cleanse these were found:
   
"It's unlikely that the average person is walking around with active parasites in their gut," says Dr. Mannon. "I would question the usefulness of these parasite cleanses."

"The risks of parasite cleanses
Not only is there no upside to these cleanses (since no parasites are there to remove), there are many potential downsides. "The risks depend on the type of cleanse," says Dr. Mannon. Note that parasite cleanses are not tested to see if they work or if they're safe. They haven't gone through any type of Food and Drug Administration (FDA) review or approval process."
www.nebraskamed.com/gastrointestinal-care/gut-parasite-cleanses-like-paraguard-the-good-the-bad-and-the-ugly

Good luck!
12 Jul 2022 14:15
  • MelA
  • MelA
No, I have not tried it and I will not try it without being told that I do have parasites and this stuff will take care of the problem - that would be like taking blood pressure medicine without having high blood pressure.   Also I wouldn't touch the stuff unless my hematologist looked at the ingredients first, I wouldn't take it even if he said the ingredients won't mess with my platelet count.    Sorry - know this isn't what you are looking for.  Good luck!
11 Jul 2022 14:12
  • Vancouver40
  • Vancouver40
Hello, has anyone used the parasite cleanse called Parastroy by Nature's Secret that has naturally helped fellow PDSA member Cindy1 with naturally healing her ITP? If so, how did your platelet count react during the two weeks of cleansing? What was your experience? I have just purchased Parastroy by Nature's Secret and would like to get more details on what to expect. Will update once I try it. Thank you and also a big thank you to Cindy1 for sharing her story!
11 Jul 2022 14:07
  • Vancouver40
  • Vancouver40
Has anyone used the parasite cleanse she speaks of called Parastroy by Nature's Secret that helped with her ITP? If so, how did your platelet count react during the two weeks of cleansing? What was your experience? I have just purchased Parastroy by Nature's Secret and am trying to get more details as to what to potentially expect while on the cleanse. Will update once I try it. Thank you and also a big thank you to Cindy1 for sharing!
11 Jul 2022 03:15
  • JJ
  • JJ

That was an expensive way to stop your doctor from talking about a splenectomy JJ!!
I take it that "NO" just didn't do the trick?!   Thankfully none of the hematologists I've had since 1989 never pushed a splenectomy!


No treatment was working at the time and the doctor said to do the indium test just in case a splenectomy became necessary. In the end I got myself on a trial for romiplostim and that worked so all was well. 
11 Jul 2022 03:04
  • JJ
  • JJ
There's nothing to do unless the platelet count goes much lower. Changing doctors won't help as none of them will treat. There are no supplements or diet that will help. You and she are worrying unnecessarily. 
10 Jul 2022 10:22
  • CindyL
  • CindyL
So according to my doctor on Wednesday, my stress test was good.  So I said nothing to worry about.  He says he wouldn't go that far, we have to figure out why I'm having these symptoms.   So now I am waiting to get a breathing test done. Doctor wants to rule out everything, like COPD. He asked if I was still walking with my sister and I said yes, I wasn't going to stop unless told to.  I forgot to ask if I would still see the specialist, but my sister seems to think I will.  It's been awhile and I haven't heard, so I don't know.
09 Jul 2022 23:55
  • MelA
  • MelA
A hematologist is an oncologist too.  I just saw mine yesterday, the exam room was a hop skip & a jump from the infusion room - he specializes in blood cancers, GI cancer, and blood disorders [ex: ITP].    
09 Jul 2022 17:53
  • mrsb04
  • mrsb04
Basel has a department of nuclear medicine maybe contact it to see  if the scan is available. 
09 Jul 2022 17:34
  • Sherry
  • Sherry
My son was diagnosed with ITP at 10. We were hoping it would be an acute case, but unfortunately we have passed the year mark and he's now considered chronic. Luckily, his platelets have been stable for the past six months, staying in the 80s. Our hematologist ran anti-TPO thyroid checks and his levels are off the charts in the three times he has been checked. Does anyone have experience with Hashimoto's or other thyroid disease/conditions in children? If so, did treatment with thyroid medication improve platelet counts? We are planning to see an endocrinologist soon. In the meantime, I'm incredibly worried that this autoimmune issue along with the ITP could be indicative of a worse condition. :( 
09 Jul 2022 08:56
  • malizgue
  • malizgue
Her blood count went to 65 no apparent reason. She was told a year ago she was a point from hitting leukemia, tbats how grandpa die and didnt find it until he died.
She lives in Houston. She will have a dr appt with a Dr next week (Dr #8) for whatever reason she's referred always to oncogist instead of hematology. The many Dr she had so far, only do the same blood test but dont do anything or say anything at all, no recommendations, diet, supplements, advice  at all. She's tired all time, she's sleeps a.lot, don't feel hungry buy force herself to eat. There are many times I believe she won't make it. She's losing faith. Is like when you turn off a fan that's stopping and shut down slowly.
That's why I make take her to a Dr  I heard a lot, hes close and across to the border a friend days he's an specialist in kidney  and liver and he cured a friend who's been suffering with anemia almost leukemia. My friend says he prescribed traditional meds along with natural  medicine and supplements.
09 Jul 2022 06:55
  • Toby-Wan-Kenoby
  • Toby-Wan-Kenoby
Thanks to all who replied. Now I know what the test is called. Has anybody had to pay out of pocket for this? I am in Switzerland and this I think would have to be done in the UK. 
I am inclined to start a survey about success rate with spleen removal. But I think that would make little sense as people which it has worked for are most likely not so active on the is forum and people where it had not worked continue to engage on pdsa. 

The problem for me is that I often drop to Tc levels of 2. It got so bad 2 weeks ago that I had a brain bleed and platelet infusions at the ER stopped that. But with an emergency flight to a more advanced hospital to Denver (this was during a vacation) and one extra day in the ICU and a second day in a normal room probably cost my insurance $100k 

So I can no longer tolerate the ultra low Tc levels for the fear of a relapse. Everything <5 I am in fear now. 

I want to keep my spleen. So I am between a rock and a hard place. 3 years into this and I am running out of options. 
09 Jul 2022 00:40
  • MelA
  • MelA
That was an expensive way to stop your doctor from talking about a splenectomy JJ!!
I take it that "NO" just didn't do the trick?!   Thankfully none of the hematologists I've had since 1989 never pushed a splenectomy!
08 Jul 2022 14:39
  • JJ
  • JJ
I had the indium scan which showed that destruction was taking place in the liver so a splenectomy had no chance of working. I wasn't going to agree to a splenectomy anyway but it stopped the doctor talking about it. 
08 Jul 2022 00:11
  • MelA
  • MelA
malizgue a count of 98 is a good count really!  Treating at that count would never be done by my hematologist!
However if I had a hematologist (I'm assuming your Mother's doctor is a hematologist) tell me to just go to the emergency room if I'm bleeding too much & to wait for body collapse I'd find another hematologist fast!  That's ridiculous!

Are you near Houston, aren't there really good hospitals there?  (I'm talking about a 2nd opinion not to take her to the ER if she's bleeding a lot)  
07 Jul 2022 21:53
  • mrsb04
  • mrsb04
Malizque
A count of 98 does not require treatment.  A watch and wait approach is the correct way to go. This is in line with the international ITP guidelines. Follow the link below 
  www.pdsa.org/images/InternationalConsensusReport2019.pdf
07 Jul 2022 21:44
  • mrsb04
  • mrsb04
If your count is generally above 50 whilst taking Promacta why on earth have you been prescribed NPlate too?
The whole point of any ITP treatment is to keep the platelet count safe not try to bring it up to normal levels.
07 Jul 2022 18:14
  • mazinhaaa
  • mazinhaaa
Hi - 

I have been diagnosed with ITP since Aug 2020 - I am 32yo. I am wondering if anyone just receives the Nplate tx on an as needed basis vs a cadence? 

My numbers hover above 50k most of the time and I am also on promacta 75mgs daily - I feel like if my numbers are above 50k I should be able to skip the injections (which often has side effects) esp if I am feeling well which is 98% of the time. Please let me know if any physicians have been open to this. 

Thank you so much. 
Displaying 271 - 300 out of 71316 results.

Charity NavigatorGuideStar Seal NORD Member BadgeTHSNA logo