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21 Dec 2021 17:06
  • Juliandrea85
  • Juliandrea85
Hi!
And your platelets are in good numbers 30 years after spleen removed?
My splenectomy remission "only" lasted for 10 years
21 Dec 2021 17:02
  • Juliandrea85
  • Juliandrea85
You have been in stable counts before, so you will be there again. I hope eltrombopag helps you. Today my doctor told me about a new pill called avatrombopag, that will be available next year...this could be an alternative for everybody dealing with itp
21 Dec 2021 16:25
  • ecvia1
  • ecvia1
Well, shoot.
Thanks and Merry Christmas!
21 Dec 2021 16:19
  • JJ
  • JJ
Probably no direct link but when you've got one autoimmune condition, it's quite common to get another.
21 Dec 2021 16:17
  • JJ
  • JJ
I'd rather have a count of 7 than 700. With Nplate over about 250 the risk of clotting and consequent stroke is higher than I would be happy with.
21 Dec 2021 14:28
  • mrsb04
  • mrsb04
Registrar has just rung,  count is now down to 9, one tiny oral blood blister and a bruise on my arm from phlebotomist blowing a never before used vein (IVI cannula in my normal vein for 72 hours so it needed a rest)- no other symptoms at all. 

5mg Pred stat on top of the 10mg I had this morning and back up to 15mg in the morning.

Reg's  suggestion is double the IVIg dose and repeat it as a day case asap. I have said I am happy to go back on Eltrombopag starting at 75mg (taking an iron supplement from the outset) to see if it works after 6 months break. I am not prepared to go back on romiplostim again.  He is going to speak to my consultant and get back to me tomorrow. 

I am not in the best  of moods. All I want is a count above 20. 
21 Dec 2021 12:04
  • ecvia1
  • ecvia1
Greetings,
  I had ITP almost 30 years ago real bad and they ended up taking my spleen out to fix it.  
  About to have a physical, and my labs show very high thyroid antibodies and high TSH.
  I wonder if these alarming numbers are somehow related to my having had ITP all those years ago?  I'm physically good no health problems that I know of!  Maybe my thyroid has always been out of whack which caused the ITP years ago, I don't think they were looking at thyroid's and thyroid tests back in the early 80's.
  Thanks for any input in advance.  

Eric
21 Dec 2021 10:33
  • faye1025
  • faye1025
Has anyone changed from Johnson & Johnson to Pfizer for a booster?
Five days after receiving the J & J my platelets crashed to 4000.
Our doctors know very little about my condition and would've to hear from anyone with advise.
Also is the flu shot recommended ?
21 Dec 2021 09:56
  • cchucky51
  • cchucky51
what does every one take  for arthritis  pain 
my hemo won't give me any thing told to take advil on occasion but that doesn't work when you have pain every day 
pain is so bad that some times i can't even walk had all kinds of blood work done and they can't find any thing
seems that if i take 250 Tylenol  500 advil and 5 mg pred i can actually  function 
any info would be great 
thank you
 
20 Dec 2021 19:51
  • b2h
  • b2h
Hi. I'm so sorry to hear about your reaction to the Moderna vaccine. Severe drop in platelets is never fun and the hospital is a definitely a drag. Glad you have been better since.

Perhaps switch to a different vaccine? I received Pfizer three times and did not have any ITP related reactions to it. If possible, I would definitely finish the two course vaccine and then boosted as soon as you can. It takes a couple weeks after receiving the vaccine for you to be considered protected.

Not sure what your new job is or if you have other medical issues, but if your job is inside with others, I would make sure precautions are being taken by you and others. Do you know what they are doing regarding Covid? Perhaps get some rapid tests to keep on hand?
20 Dec 2021 16:30
  • tomgoodstuff
  • tomgoodstuff
Hi everyone...When I received my first COVID vaccine back in April, I developed an ITP response. After two weeks I had petechia, sores in mouth, etc. My platelets were at 1. I ended up in the hospital for a week for treatment. A combination of IVIG, steroids, and an nplate helped and I eventually recovered. My platelets have been okay since then (around 170), however I am struggling with deciding whether to get the second COVID shot. I would have never considered it a few months ago, but It seems COVID is getting worse and I need to protect myself. I will be starting a new job in NYC in a couple weeks as well so I'm worried if I get the same reaction I won't be able to start. But also this new job brings up more fear of COVID. Any insight is greatly appreciated. Thank you
20 Dec 2021 11:40
  • Juliandrea85
  • Juliandrea85
I was thinking the same. But I had very bad drop in counts when i skip nplate. From >300 one week, my doctor decides to skip nplate and the next week counts went to 7!
20 Dec 2021 11:33
  • Juliandrea85
  • Juliandrea85
Yes, i had a remission  of 10 years after spleen was removed. Since december 2018 the itp came back ... At least I took a long break
20 Dec 2021 11:12
  • RR01
  • RR01
Hi Eemu 10955
How much does NPlate treatment cost roughly? My numbers went down after Covid vaccine and looking for treatment options now . I am in US . Doctor suggests IvIG  , I am not sure if it will help me though ... 
20 Dec 2021 04:24
  • Eemu10955
  • Eemu10955
Hi Amberyard! 

I was diagnosed when I was 6 weeks old in 1997, had counts of less than 5,000. But with NPlate I range at 40k to 60k. 

I got both Moderna vaccines, 1st dose I just had fatigue and soreness in my arm. 2nd dose, I ended up with a fever, chills, fatigue, and soreness in my arm. 

I was at 56k prior when I got both doses 

The first dose dropped my count to 34k 

The second dose dropped my count drastically to 9k. 
20 Dec 2021 04:16
  • Eemu10955
  • Eemu10955
I mean I was told that I was a special rare case. Ye, I am happy also, thanks! 

Same here, they could not promise that it would be a cure so I still have my Spleen as well. 

Thanks for the warm welcome @MeIA 
20 Dec 2021 04:12
  • Eemu10955
  • Eemu10955
That's interesting that your condition went into remission, but I am guessing it came back then? @ Juliandrea85
20 Dec 2021 02:26
  • mrsb04
  • mrsb04
2 nights in one's own bed is good for the soul. I feel almost human this morning.
20 Dec 2021 02:21
  • JJ
  • JJ
You shouldn't be injecting Nplate at all with counts that high but I suspect you already know that. You are playing a dangerous game.
20 Dec 2021 00:34
  • MelA
  • MelA
Interesting Eeman that you were born with ITP.   Don't recall seeing that here before.  Great that you have found a treatment that is keeping your count at 40-60k - happy for you!  I've had ITP sine 1989, bone marrow is fine and productive - still have my spleen since they couldn't promise me removing it would be a cure.  

Nice to meet you!
19 Dec 2021 18:12
  • Juliandrea85
  • Juliandrea85
Nice to meet you Eeman.
Happy to hear that nplate got you at safe counts.
I'm 36 years old. Diagnosed at 11, had splenectomy at 22 and a remission of 10 years ...until december 2018.
Last count: 60K
19 Dec 2021 18:00
  • Juliandrea85
  • Juliandrea85
Good luck with the next count :) !!
19 Dec 2021 06:10
  • mrsb04
  • mrsb04
ITP as frustrating as ever Lman!!  Me too see my new post  #71961
19 Dec 2021 06:07
  • mrsb04
  • mrsb04
The steroid bolus failed to work only increasing count from 5 to 6, bruising continued +++,  insomnia raged and I was summoned  to hospital on Wednesday evening  by a haematology registrar (Chief Resident I believe in USA). Pred reduced to15mg in the hope I would get some sleep; Ha Ha no chance of sleep in a hospital, bloods repeated  and count was still 6.

Thursday morning count down to 4. Offered either IVIg or go back on Romiplostim. Absolutely no desire to go back on Romiplostim (failed twice and hate the side effects) so as the cold symptoms had abated I opted for my first ever IVIg.  This  had to be sourced so stuck in hospital waiting for it.

With a count of 9 I finally started the infusion on Friday evening . As  it was running with limited medical overnight cover the nurses and I agreed best to run it slowly (approx 6 hours for 45g) which I tolerated with no side  effects at all. 

Saturday morning count  rechecked about 8 hours post infusion and came back at 13. I then had to wait for  a registrar to come and confirm I could go home. After 3 sleepless nights I was ready to walk out and go  home when he turned  up 4 hours later. (NHS medical staffing at weekends is always appallingly low). He was actually lovely, told me to  go home,  drop Pred to 10mg for 5 days then to 7.5mg for a week after which to commence a taper with my choice of dosing  as I know my body best.  
He  expected my count to continue to rise for next 24-36 hours and to a  get repeat count  on Monday morning at the local hospital rather than trek 15 miles into the city.  Bloods from the local hospital are transported to the city lab early afternoon. One of the hospital doctors will ring me if there are any concerns. If I hear nothing count is good and they are not worried about me.
PCR Covid tests on admission and repeated after 48 hours,  both negative. 

I already have an out patient appointment with my consultant on 10th January. I realise IVIg is only a temporary solution but if it manages to  tide me over until then I will be happy.  I may actually leave Pred at 7.5mg until I've seen her. 
18 Dec 2021 14:09
  • Eemu10955
  • Eemu10955
Hi, my name is Eeman,
 I am a 24-year-old who has been diagnosed with ITP since I was born, I was diagnosed when I was 6 weeks old, they found out when I was rushed to the ER with a fever. So yeah I have been living my whole life with ITP. Also, my counts were always dangerously critically low which were less than 5,000. I have had ton countless treatments in the 24 years I have lived with ITP, nothing seemed to work except for Promacta for a bit but I lost response from it and even found out the more Promacta produced platelets, the less they were functional since they would go up to a normal count. I started NPlate in 2019 and my journey with this treatment has seen results where my counts stay at 40K to 60K which is my new normal. I am a special rare case where I was born with ITP but whenever I had a bone marrow biopsy done, it is shown that my production is all normal. Also because countless platelet transfusions were done when I was younger, my body has developed antibodies towards them so there only for stricter emergencies. 
Now that you know a little about me, I hope I can make some new friends here that also may have the same experience as me through ITP. I have never met anyone who has the same or similar case to mine. 
17 Dec 2021 06:08
  • Lman
  • Lman
Ok, Some updates. Still wondering what is happening. Lets recap:

Caught some sort of strange cold or flu (symptoms very minimal, took adult cold pill for a day or two and I though it resolved) but a week later crashed and platelets were 6-8k.

Hospitalized for 3 days, 30gr IVIG four times along with 40mg dex four times (upon admittance and each of the following days) plus some 10 units platelets. I had a quick reaction to the first bag so they brought another platelet bag and added some anihisamins.

Before being admitted to the hospital switched Nplate to one level higher to avoid hospitalization. Failed.

On discharge (by discharge, I mean the very last vial of drugs used): some 250 k.
2 days after: 777k.
4 days after: 845k. This time I only used one vial nplate ( normally used 1.5 vial)
11 days after: 480k. Normal 1.5 vial injected that day.
18 days after: 358k. Normal 1.5 vial injected that day.
25 days after: 619k which was yesterday. instead of normal 585 mcg I reduced some 25 mcg due to the fact that after I had some dietary change and lost 5-6kg in three weeks. Some 3kg of it happened in the hospital since I did not eat much so basically the mcg/kg is same as before.

So I was wondering is it still the IVIG or dex effect or the extra nplate dosage a month ago, or its something else?
The last time I received IVIG was some 2 years ago. I received 50gr for GI bleeding, the effects vanished by the 10th day. Also the last time I receive dex was some 3 years ago, after my diagnosis and once again after another GI bleeding. Effects did not last more than a week or two. 

WBC was 9k yesterday with some 63% neutrophils which were slightly high. The 358k also had 11k WBC slightly high.

Given that I am on some high-dose nplate, could I be optimistic that I can at least reduce its dose?

Thanks.
16 Dec 2021 10:32
  • midwest6708
  • midwest6708
It's wise to try another treatment.  IVIG shouldn't be considered a permanent solution; it's only a "rescue".

I can tell you I've been taking NPlate for 7 years without any side effects.  I've finally found the dose that keeps my count in a low but safe place.  During the first few years, I experienced frustratingly wild swings in count; but I'm satisfied with what it does for me now.

The very worst thing about ITP is the unpredictability of disease and response to treatment for it.  There is no "best" fix for everyone.  It takes hopeful patience to find what works best for each.  I'm sorry this has happened to your husband and hope his case is temporary and will remiss soon.  

  
15 Dec 2021 15:24
  • Yankee46
  • Yankee46
A quick update for those interested. In September I had my platelets checked again and they were 150. With the holidays coming up, my girlfriend and I are planning on traveling and flying to see friends and family. With that in mind, we both decided to get Moderna booster shots to be on the safe side. I received my booster shot Saturday, December 4th. Had a rough night of sleep, felt a bit of fatigue the next morning, but no other symptoms (a relief!) I just got my numbers checked today (December 15th) and my numbers were 176! It seems that getting the COVID shot is actually good for my numbers, haha.
Just thought I would share in case this is useful to anyone. Stay safe!
15 Dec 2021 11:34
  • mala_malina
  • mala_malina
Just to keep you updated: we did not go to the hospital that weekend and that was the right choice. My husband was asymptomatic and a few days later the counts went up to 35.

But today we had a heavy throwback as his count crashed again to 1. He went to the hospital voluntarily. The doctor there said maybe it's time to try other medication like Rituximab/Rituxan, Avatrombopag, Fostamatinib, Nplate, ... we don't know exactly what to expect from those medications, but we'll see. I've read many studies about the other drugs so I'm confident. It can't stay the way it is now. Like every 10 days Immunoglobulin and counts in the single digits.
14 Dec 2021 19:42
  • lilicarot
  • lilicarot
Thank you. I am tapering down steroids but side effects are tough. Will see what happen. I Keep praying
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