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27 Dec 2021 09:46
  • CindyL
  • CindyL
Mum
Hope you did too, Mel!
We did.  It was weird, tho.  We did go out to Cathy's and had a good dinner.
I have no decorations up because I really didn't feel like doing anything.  Plus, we don't have room!  And no snow! I like a bit of white stuff for Christmas, then it can go away!
The whole family of mum's nurse (when she was in the hospital in 2017) spent Christmas with Covid.  One of her granddaughters might have picked it up at school.  We are going through the same thing here, some kids have to wear masks and some don't. The lower grades 1 to 6 got to start their Christmas break a week early due to cases in our schools.
I'm not a big fan of the Premier of our Province, but I'm glad I'm not in his shoes.  Back when our cases were really low, people wanted everything opened and back to normal, so he gave them what they wanted. Now, we're in worse shape than we were when the whole Covid crap started!
The "experts" are predicting over a thousand cases a day by the end of the year, and with NYE coming, I can see that happening!
Cathy and I are going out for our weekly walk today, so there should be some pictures up tomorrow!
Category: Social Chat
27 Dec 2021 00:30
  • MelA
  • MelA
Mum
Hope you had a good Christmas Cindy!   

Our 9 yr old grandson got covid the beginning of Nov thanks to the school district going back & forth on whether masks were mandatory in schools [his parents have him wear masks, even when attending karate classes] - he was supposed to get his 1st vaccine when the symptoms showed up, he then gave it to his Dad who got symptoms before he was to get his booster, neither sister or mother got it - both well and back to normal now.  But their family all took the home tests just to be safe before we went to their house, bless their hearts - to our 12 year old vaccinated granddaughter she probably is tired of things being stuck up her nose, she said since going back to school in 2020 she has had to have 9 covid tests due to cases in the school.   
Category: Social Chat
26 Dec 2021 11:58
  • gozorakgogo
  • gozorakgogo
I received weekly Nplate injections from July 2020 until November 2020.  Looking back at my billing invoice the cost is dependent on the dosage I was fortunate to have insurance because each injection was over $8000. My final Nplate injection on Nov 2 2020 was $8879 in Submitted Charges. That was for one treatment.

Nplate, I believe, is primarily relied upon to help to stimulate platelet production in the bone marrow. In addition to the Nplate injections I also underwent a course of four Rituximab infusions in an effort to "reset" my immune system so that it would stop destroying my platelets. 

Those two treatments in tandem have been successful for the most part since my levels have been stable over 100 since that final Nplate treatment in Nov 2020. IVIG is not really a treatment for ITP anymore than platelet transfusions. I had both when I was in the hospital in 2020. They are for temporarily elevating your platelet levels out of the "danger zone" until some other successful course of action is decided upon.

.





I
26 Dec 2021 01:13
  • Eemu10955
  • Eemu10955
Hi RR01 
It depends on how much the dosage you are given for NPlate. You will have to talk to your hemo about cost prices since they will know best! 
Mine is covered by insurance 
25 Dec 2021 16:02
  • RR01
  • RR01
I am on prednisone 10 mg now , tapered to 5 mg and count is in 30-40 range 
24 Dec 2021 06:51
  • Juliandrea85
  • Juliandrea85
Well, long time ago, when I was a teen , I had a short remission after IVIG, lasting one year. Maybe it was just luck.

I had.my spleen then.
Now as an adult I had three IVIG, bad side effects the last two of them, and a response of a month aprox.
24 Dec 2021 00:28
  • MelA
  • MelA
I've had ITP since 1989 - I recall one of my hematologists telling me he had never had an ITP patient go into remission with IVIg.
What is your count RR01?
23 Dec 2021 08:09
  • cchucky51
  • cchucky51
platelets run around 40-50k
i just thought some one else might be having similar  issues  reason for asking 
i know advil and similar  drugs will affect my counts so don't take every day and do take prednisone on occasion small amount s to help with counts my body does well on it brings counts up quickly 
was told to try celibrac by orthoepic for the arthritis  have it in lower back knees neck shoulder right hand !  but drug plan won't pay for it so am stuck 
but thank you for all input 
22 Dec 2021 18:43
  • RR01
  • RR01
My hematologist suggested IvIg and says sometimes it will work (may or may not get people into remission) but  at least numbers will not drop this much and I will have some more time. I had my vaccine in may . Me and my doctor both have a doubt if  my count drop is because of covid vaccine. So I am holding off on my booster shot for now.
22 Dec 2021 15:48
  • b2h
  • b2h
Sounds really frustrating and discouraging. I hope something can be figured out so you feel better soon.
22 Dec 2021 15:15
  • Lman
  • Lman
Hi mrsb04
Yeah, I exactly know that, but anyway I never obey him :), but he is a nice doctor and making decision is my task.
As far as I have good options I do not think about that.
Thanks.
I just hope that this is not related to IVIG and something good has really happened.
Only time will tell.
Pray for me 
22 Dec 2021 15:08
  • mrsb04
  • mrsb04
Lman
 "this response shows you will respond to splenectomy"   I would  ask him  for his evidence base to support that statement. 
I've just done a quick literature search:- ITP does a response to IVIg indicate a splenectomy will be successful.  
Cannot find anything less than almost 20 years old so not exactly current.
Nor can I find a definitive answer  but I think more articles saying IVIg response  is not predictive.
I have absolutely no intention of parting company with my spleen. It is a perfectly healthy organ doing its job properly. I think the risks outweigh the possible, but by no means certain, benefit. 
22 Dec 2021 14:35
  • mrsb04
  • mrsb04
It is very rare that NSAIDs or Aspirin cause ITP but they do affect platelet function i.e. reduce ability to help clot blood.
22 Dec 2021 14:22
  • mrsb04
  • mrsb04
Thank you CindyL
Back on Eltrombopag starting at 25mg + 15mg Pred. I thought the dose small but the aim is purely to make my count safe not bring me into remission. When the trial restarts remission will preclude me from enrolling so I can see the logic.

A further count tomorrow just to make sure it hasn't dropped. Then another one next Wednesday. These are at my local cottage hospital. Any bleeding before Wednesday and I will have to go into the city to the ITP centre to get bloods done there and no doubt be incarcerated within the haematology unit again. I shall  be taking overnight  bag and iPad with me  if I do have to go.

Lateral flow test at lunchtime was negative.   
22 Dec 2021 13:36
  • Lman
  • Lman
I took another test and was 580. Visited doctor he believes it could be the IVIG effect. He was happy because he believed say this response shows you will respond to splenectomy :/
Anyway we came to an agreement that tomorrow I should inject 375 mcg (one vial) and test the next week again. Thanks for your responses friends.
22 Dec 2021 12:11
  • MelA
  • MelA
I take nothing orally for my arthritis pain.  Don't have a rheumatologist.  I have had both knees replaced and that made a huge difference, no more pain in knees.  For shoulders I use Voltaren cream - it is a NSAID so I only use it for a couple days at a time, it does help.  Walgreen's has their brand of it and it is the exact same ingredients [active & inactive] as the brand name and cheaper.  Also for shoulders I use lidocaine patches if not using the Voltaren.  There's nothing I use for hands/fingers - just a few curse words ;)   

What is your platelet count cchucky?
22 Dec 2021 10:02
  • CindyL
  • CindyL
I'm sorry to read this, mrsb!  Hopefully you'll be able to get stabilized soon!
And sorry to hear that the trial has been postponed.
22 Dec 2021 09:33
  • CindyL
  • CindyL
I've had my thyroid issues for longer than my ITP.  A couple of weeks ago, I had to lower my dose of Synthroid/Levothyroxin (thyroid has always been low and now it's high). I'm on 2 different doses.
Nobody has ever told me there was a correlation between my thyroid and ITP.
22 Dec 2021 07:40
  • cchucky51
  • cchucky51
yes do have a  rheumatologist and a lot of test done and she can't find any thing so we started with what i am taking now but thank you 
22 Dec 2021 04:16
  • mrsb04
  • mrsb04
MelA
Thank you. 
The trial has been suspended pending amendments to some part of the protocol according to my haematologist. Hopefully it will recommence in the spring. 
22 Dec 2021 04:13
  • mrsb04
  • mrsb04
Juliandrea85   Avatrombopag  is not yet licensed for chronic ITP in the UK
22 Dec 2021 04:10
  • mrsb04
  • mrsb04
I've had 3 Covid vaccinations.
All crashed my counts but I'm still here to tell the tale, which I might not have been had I contracted Covid.
22 Dec 2021 00:41
  • MelA
  • MelA
mrsb - I am so sorry to read this - bless your heart, you are having a time of it for sure!   Have you heard anything about the trial?
Thinking of you and sending good thoughts!   Sure hope your next count is a good one!!  Hugs!
22 Dec 2021 00:32
  • MelA
  • MelA
IVIg isn't really used as an ongoing treatment RR01.   And it doesn't last long at all.   Is this a hematologist who suggests IVIg?
How long ago was your vaccine - what is your platelet count - could the decrease be only temporary?

Good luck!
22 Dec 2021 00:27
  • MelA
  • MelA
I'm not in the medical field so this is just my opinion - if you had ITP 30 years ago and just now a high [hypothyroid] TSH I wouldn't think the 2 were linked.  High TSH could be Hashimoto's Disease/Thyroiditis, which is autoimmune.  If that is what it is you need to have it taken care of.  I happened to come down with Grave's Disease about 13 years after ITP diagnosis, Graves is hyperthyroid and also autoimmune.  

Talk with your doctor when you have your physical and you should be having that blood work done again.  My TSH was so low it couldn't be read so I had no idea how low it was.
22 Dec 2021 00:15
  • MelA
  • MelA
21 Dec 2021 18:37
  • b2h
  • b2h
Oh, that's not a good way to live. I've been there. I take extra strength tylenol and tylenol arthritis, but if my pain gets as severe as yours I talk to my rheumatologist about other treatment options. You shouldn't have to live with that. Do you have a rheumatologist?

I don't think you should take ibuprofen when you have ITP since it can lower platelet counts. Asprin can lower platelet counts too. The only OTC pain medicine I take is acetaminophen.
21 Dec 2021 18:32
  • b2h
  • b2h
I haven't personally switched. I had Pfizer for all three, but many people have switched and have had not issues. Perhaps you can do an internet search and find some info.

Yes, flu shot is also recommended.
21 Dec 2021 17:26
  • Juliandrea85
  • Juliandrea85
I would do what your doctor said: vaccine and weekly test
21 Dec 2021 17:10
  • Juliandrea85
  • Juliandrea85
Yes. I think Lman must reject nplate above 250.
Lman, did you ask your doctor about that ?
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