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22 Oct 2021 14:50
  • Cindy1
  • Cindy1
Hi ananta,
You have more than made my day, month, year! I am so happy for your improvement from ITP that I have tears in my eyes and heart.  Also, I am so appreciative that you shared this information of your improved platelet count with the PDSA group so that others with ITP might benefit from your Healy microcurrent information.  And that Cleveland Clinic is using it is very powerful information too. Did you mention where you think you may have gotten the microorganism? I did not see it in your current post. I know for me, my ITP started within a week after my return from Costa Rica. Not sure what caused it; maybe from eating contaminated food or riding horses in the jungle. I just had my 4 year anniversary of my last IVIG treatment on Oct.16, 2021. The whole ITP thing and every 10 day IVIG for several months in 2017 is a distant surreal memory but I do have some PTSD from it. I am always a bit wary of things or places that could introduce parasites into my system again. I just try to remind myself that if it did happen again I would have a treatment for it. Thanks for allowing me to add you to my list. You are number 5 being cured of ITP after either a parasite pill and/or microcurrent treatment for parasite or unidentified microorganisms.  Here's to your being well and hopefully with your great information many others will get cured by a parasite destroying pill or the Healy microcurrents!  Best to all.Cindy
22 Oct 2021 13:27
  • Jane T
  • Jane T
Thank you, this article is very helpful.
22 Oct 2021 12:59
  • ananta
  • ananta
22 Oct 2021 12:49
  • Jane T
  • Jane T
Has anyone had a reduction in platelets after a flu shot. How long did it last? My labs also show possible hemolytic anemia. Anyone have a similar situation?
22 Oct 2021 12:46
  • ananta
  • ananta
Hi Cindy1 and everyone else.
I was in the hospital in May with a count of 1k. When I left the hospital my counts were 55k. I started using the Healy medical devise as soon as I left the hospital. Three weeks later my count was at 115k.Thinking that it might be left over effects of the meds I had in the hospital, I decided to check in a couple of months. I  just had my CBC done a week ago. My platelets are now at 182k. Completely in the normal range. All my other blood numbers were completely normal. Well, my MPV was a little high. That measures how big the platelets are. Makes perfect sense since new platelets are larger and shrink as they age. So my body is churning out new platelets and my immune system is not destroying them! 

The only thing I did was use the microcurrent devise called Healy. Google it if your interested.  FSM-(frequency specific microcurrents) is going mainstream. Even the world renown hospital Cleveland Clinic is using it. 
my.clevelandclinic.org/health/treatments/15935-frequency-specific-microcurrent
Here is a video of a before and after treatment with Healy on someone who had red blood cell problems: 
www.youtube.com/watch?v=Sj0wiCT2K3I
So, Cindy1, you can add this to your list of natural cures. :)
22 Oct 2021 12:39
  • sleev-les
  • sleev-les
I had my hematologist follow-up this morning.  Down to 10mg and CBC in 2 weeks.  dosage is definitely going down so will be off sooner than later.
21 Oct 2021 18:18
  • Juliandrea85
  • Juliandrea85
It's good to know about you. Yesterday i was about to ask you, But finally i didnt.
hope you could stop pred soon!
21 Oct 2021 16:31
  • juliane23
  • juliane23
Hello everyone,

I'm brand new to this group. I live in New York and am wondering if people would kindly share the name of their NYC hematologist (particularly if they feel in good hands. ;)

Thank you.
21 Oct 2021 08:01
  • sleev-les
  • sleev-les
So a little Rituxan update.  After my last post, my pred was dropped from 40mg to 20mg.  Body never responds well to a drastic drop like that and was concerned.  Of course the next week platelets dropped to 33k.  We have held 20mg since then.  The week after which would be the 4th week of Rituxan they went up to 58k.  Still held 20mg pred.  I'm 2 weeks post Rituxan and platelets are at 160k again.  I'm hoping it is is Rituxan working as 20mg of pred would never get me that high.  Fingers crossed as I need to get off this pred. 
21 Oct 2021 05:05
  • mrsb04
  • mrsb04
It sounds like you are being given a reconstituted dose. Ask for the single dose  'self injection kit' packs. They come with everything one needs to administer a single dose. That is what we get in the uk. My hospital dispenses 6-8 packs at a time. The vials need keeping in the fridge so can be taken out of  the packs and put in a tupperware  if you don't have sufficient space for  the entire pack. Here is the link to European  patient information leaflet  www.medicines.org.uk/emc/files/pil.567.pdf  . It starts with the many possible side effects but if you go through to page 7 onwards you will see what is included in the kit. 
20 Oct 2021 19:15
  • delta809
  • delta809
I got Johnson & Johnson vaccine. Side effects were a mild fever and flu like symptoms for two days. 
Platelets were around 50k prior and around 60k about a week after the vaccine.
20 Oct 2021 17:31
  • Juliandrea85
  • Juliandrea85
Moderna, two shots.
Both shots gave me fever the day after. Second shot tiredness and body pain.
After that (july and august) I've had counts of 40 until last week, I had 175, but after romiplostim dosage increased. Don't know if it has something to do with the vaccine, but It could be and my doctor thinks it's always a possibility. Anyway I prefer the vaccine, don't want to catch the virus without it!
20 Oct 2021 17:20
  • Juliandrea85
  • Juliandrea85
:) i live in Spain! Today the nurse told me vials have an expiration date of one week so I think I must go to the hospital every two weeks ...I thought it could be more, for example every 4 weeks. Anyway, a little more flexibility in my life is a good thing.
20 Oct 2021 02:18
  • mrsb04
  • mrsb04
Over here in UK most patients self administer as far as I know. Remember to keep vials in the fridge. 
19 Oct 2021 17:54
  • Juliandrea85
  • Juliandrea85
Well...i am excited i started to learn how to self administer romiplostim. I'm being trained by the nurses and waiting to be approbed to bring romi home and inject myself. It will give me a little more time avoiding the weekly visit to the hospital. It's very simple but I'm proud :)

Anyone here self administer romi?
16 Oct 2021 03:16
  • GrouchoMarx
  • GrouchoMarx
16 Oct 2021 00:54
  • MelA
  • MelA
ITP has not changed my quality of life, I wouldn't let it.  We moved to Tokyo shortly after diagnosis and I was on 60mg of prednisone, didn't know if I'd have a hematologist when we got there or anything about Japanese health care - as it was I had a fantastic hematologist & it turned out he knew my hematologist in the States.  We then moved to Hong Kong before coming back home.  I can't say I wasn't worried at times - gave myself a case of shingles in 2002[?] when my count hit the gutter after a tetanus booster and I thought I'd have to go on prednisone again.  

I am so sorry your daughter's count didn't go up - sounds like she has a good hematologist, my old one [am now with one who is closer to my house] would have said the same thing about 4k & 6k.   Congratulations on your pregnancy, when is the baby due?   You talk to that little one and tell it how much it is loved - try to relax a bit [easy for me to say].  Have you talked to your OB about what is going on with your daughter, that might help you.   

What part of GA are you from - we lived in Marietta for 2 years.  

Melinda
Category: Newly Diagnosed
15 Oct 2021 05:14
  • mrsb04
  • mrsb04
agarr7
I was in my 50s. My count is usually around 40-50 but has been as low as 2.  
Category: Newly Diagnosed
14 Oct 2021 18:33
  • agarr7
  • agarr7
Thank you so much for sharing the link. If you don't mind me asking, what was your age when you were diagnosed and what are your platelet levels now? 
Category: Newly Diagnosed
14 Oct 2021 18:33
  • agarr7
  • agarr7
Wow - early 40's. Has ITP significantly changed your quality of life, or have you found a way to navigate through it?

Today, her blood showed that her platelets are at 4! The doctor said it's still within the range as last time (6), but we're still crushed. We're still going to do watch and wait since it's only been almost 2 months that she's had it, but I almost had a breakdown today. I NEVER thought my child would be going through this at this age...and what makes things even more stressful is that I'm currently pregnant. I haven't had a chance to really focus on my pregnancy because I've been so preoccupied with ITP.
Category: Newly Diagnosed
13 Oct 2021 01:44
  • mrsb04
  • mrsb04
agarr7
I too was diagnosed as an adult so not sure how much help I can be. Have you seen this link ?  pdsa.org/children.html 

 
Category: Newly Diagnosed
13 Oct 2021 00:34
  • MelA
  • MelA
Early 40s - I was "fortunate", my only symptoms were petechiae and massive bruising.  

So sorry her count has dropped - know that is a big worry!!  I do like that your daughter's doctors aren't rushing to treat her with every known treatment, so many do that.  

I'm hoping you get some good news with Thursday's blood draw.  How is your daughter doing with those bless her heart!   Sending good thoughts your way!! 
Category: Newly Diagnosed
12 Oct 2021 14:37
  • agarr7
  • agarr7
Thank you so much for your message. I apologize for the delay in my response. If you don't mind me asking, at what age where you diagnosed with ITP?

Well, the blood work showed that her platelet level dropped to 6 (6,000) from 12...so we were absolutely crushed. We get more blood work done in a day so we'll see where her levels are at. I feel like her petechiae rash on her chest is getting a bit better (although it's still definitely present) and she currently doesn't have any blood blisters (wet purpura) in her mouth (although they pop up like every other day or every 2 days). I'm really praying that her platelet levels have risen just a little to offer us some hope. 

She still bruises SO easily, so I know the levels are still low, but we're aiming for anything over 6! Her doctors are a little concerned about the wet purpura. They said they are right on the edge of treating her, but they still want to wait and see if she improves on her own before going down that road. I'll let you know what your blood platelet level is at on Thursday. Thanks for your kindness and support :)
Category: Newly Diagnosed
12 Oct 2021 03:52
  • JJ
  • JJ
I've been vegetarian for years and still managed to get ITP. I do eat a bit of cheese though but can't imagine it's the cheese to blame.
11 Oct 2021 14:40
  • MelA
  • MelA
Haven't tried it and won't - although I do watch the sat fat.  I don't believe there is any sure "cure" to bring counts up.   Possibly your count went up to 70 and has been stable because it went up to 70 and stabilized on its own.  I'm happy for you that your count has stabilized!
11 Oct 2021 14:36
  • MelA
  • MelA
No side effects - get Pfizer booster in the morning.  I have heard from a few that the booster has caused pain at the injection site - but know you aren't looking for that type of side effect.  I did not have any known drop in count - even if I did I would still have gotten the 2nd and also made the appointment for the booster.
10 Oct 2021 07:27
  • JJ
  • JJ
I had neutropenia after a different vaccine, not for covid. My neutrophils were 0.3 for a while. It corrected itself after 6 months.
07 Oct 2021 07:23
  • CindyL
  • CindyL
Amber, my first shot was the Astra Zeneca and my second was Pfizer.  Had a bit of a metallic taste with the AZ and a little nausea but with the Pfizer, I didn't have any side effects.  I'm eligible for a booster but am getting my flu shot on the 22, so I am going to wait to get that.
I had my spleen out in 2006. 
06 Oct 2021 12:58
  • poseymint
  • poseymint
Edward Jacob- I'm wondering if you got the booster? Like you said, Covid is so bad and so dangerous esp for all of us with auto-immune issues. I agree that now would be a good time to get the booster while you are off prednisone. Perhaps the booster would push your immunity up to the 95%?- thats what the studies say. I've also been concerned that the booster would drop my platelets. My plan was if my platelets fell I would wait a couple weeks- just tolerate the low numbers, then take some prednisone to calm down my immune reaction and bring my platelet counts up.
06 Oct 2021 12:25
  • amberyard
  • amberyard
Who has gotten the vaccine and what was your side effects? I was diagnosed April 27, 2012 and have tried everything for ITP including spleen removal. 
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