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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. 
07 Jul 2022 15:45
  • malizgue
  • malizgue
98. Her dr just said if she bleeds too much to to emergency room, to wait until body collapse then they can see what's wrong with her.
07 Jul 2022 12:12
  • midwest6708
  • midwest6708
Sorry you're having to deal with an overzealous medical system.  I happens all too frequently with this disease.  You shouldn't panic, and it would be better if you had doctors who wouldn't, either.  

I was diagnosed at age 58 and am in my 70s now.  I've had single-digit counts more times than I can remember, although not very often since late 2014 when I started NPlate.  I've never once been hospitalized because of a low count. 

You may not be able to find a hematologist whose main focus is in ITP.  I live in a major midwest city that has two university-based medical systems.  I could find only one ITP specialist, but he was out of date in his methods and would not tolerate my refusal to have my spleen removed.  Your better bet is to do your own research to learn as much as you can absorb about your disease.  Then look for an open-minded hematologist who won't mind your input about your treatment preferences and tolerances.

If you haven't yet read the Patient + Caregivers section on this website, start there now.  It's one of the best resources with the most up-to-date information I've seen yet.      

How did they arrive at the lupus diagnosis?  A suspicion based on low platelet count alone can't confirm anything, if that's what they're using.  Diagnosis takes a battery of tests, and even that isn't always definitive.       
07 Jul 2022 03:55
  • ShinMegami
  • ShinMegami
Thanks for the reply I'm going to ask today are the hemotologist ITP specialist, if not I'm going to look to getting out of the hospital and find an ITP specialist. I haven't got no crazy side effects from the drugs. My body is hella resistant to drigs. I got bad bruises in my arm from failed attempts to put in an IV, but they are healing despite low platelets, once I get them up I know they'll go away.

I also had a plasmapheresis done over 5 days last week.

I don't know if they'll let me home since I'm still low I was 11k as of Wednesday.

You think the Lupus diagnosis can be a mistake? The Rumotologist here said I have Lupus, That team said Lupus can be the cause of my platelets dropping don't know if that's true.

Glad I found this forum instead of panicking, I can ask some hard hitting questions if I don't like the responses then I am switching doctors.
07 Jul 2022 03:44
  • mrsb04
  • mrsb04
Sounds horrendous...are you being cared for by ITP specialists?  Doesn't sound like it to me as they would be following the international guide lines see link ( looks unfinished but it works)   ashpublications.org/bloodadvances/article/3/22/3780/428877/Updated-international-consensus-report-on-the
07 Jul 2022 00:34
  • MelA
  • MelA
T-W-K there used to be a group of us ITPers in town who would meet every couple of months, unfortunately that did go by the wayside a number of years ago.  In our group was a woman who kept a count around 5k & who flew to London for the Indium test - she was originally from the UK so had relatives she could stay with during that time.  It was determined that the destruction of platelets was in the spleen.  She came back here and had her spleen removed, her count went up for a short time and then back down to 5k or thereabouts !!   

You must remember that there are other places in the body that have the job of cleaning the blood and they can take over when the spleen is removed.   
07 Jul 2022 00:25
  • MelA
  • MelA
malizgue what is your Mother's platelet count?
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