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ITP Rollercoaster can be so infuriating !!!!! 5 months 2 weeks ago #71937

  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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So one week after Romiplostim failed completely again, and increasing my Pred to 5mg/week whilst I am worked up for the PRN1008 trial 
I am covered in bruises and have oral blood blisters. FBC yesterday = Platelet count 5, WCC 17.8 (I did increase my pred slightly and have the slightest snivel of a cold. COVID negative on LF test yesterday).

Following a phone conversation with my Haemo Consultant I'm demoted to weekly blood tests and  Pred 20mg x 5 days, 15mg x 1wk, 15mg/10mg x1wk, 10mg x 1wk, 10mg/7.5mg x1wk then back to clinic to see her. 
On top of that I will  have to take a PPI to cover increased steroids which will put my gut microbiome way off kilter 

Hello insomnia, possible manic behaviour, gallons of body lotion and loads of probiotic supplements. Jolly old Christmas this will be. 

Symptoms changed which is probably the most annoying thing, not a hint  of a nosebleed  which has always previously indicated a count below 20. Only ever had one oral  blood blister about 6 years ago with a count in the teens. I am not feeling cold or particularly tired, they usually kick in below a 30 count. Last week with a count of 15 I was completely asymptomatic. 

Why not opt for IVIg? I hear some of you ask.  3 reasons from my point of view 
A:- there is a general worldwide shortage. 
B:- it is horrendously expensive and the NHS is on it's knees due to serious underfunding  after 11 years of Conservative policies,
and let's be honest my count can be managed on high dose steroids for a short while.  
C:- there is more chance of a transfusion reaction if one is nursing an infection when it is  administered and it looks like I may well be starting with a cold. 

That is my moan over.  Just storm Barra to look forward to now, it's  trashed Northern Island already  and is on its way here. Glad I live on the Eastern side of England hopefully it may calm down a bit before it arrives. Time to take the dog out for a walk . 

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ITP Rollercoaster can be so infuriating !!!!! 5 months 2 weeks ago #71938

  • ecoclayton
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Sorry to hear this mrsb04.  I too have been riding the roller coaster since April.  Platelets crashed after 2nd covid vaccination into the low 20's, but rebounded into the 40's a few months later by just staying on the 20mg Doptelet.  I then got a minor case of covid in October, which actually jumped platelets into the 70's, and now back in the high 40's again.  I hope the prednisone symptoms stay away for you this time.  You will make it through this dip in the ride and be back at the top before you know it.

On a side note I was just in London over our Thanksgiving visiting my youngest daughter.  Fortunately, we had good weather and got out the morning before the snow storm that hit a few weeks ago.

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ITP Rollercoaster can be so infuriating !!!!! 5 months 2 weeks ago #71939

  • mrsb04
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Thank you Ecoclayton. 
Hope you enjoyed London. 

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ITP Rollercoaster can be so infuriating !!!!! 5 months 2 weeks ago #71940

  • CindyL
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Oh, Anne, I'm so sorry to hear this!  Hope your counts stabilize soon and you feel better.
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ITP Rollercoaster can be so infuriating !!!!! 5 months 2 weeks ago #71945

  • poseymint
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MrsB~ So sorry to hear of your ITP treatment problems! Its very frustrating. Hope the trial works soon. I know what you mean about symptoms changing. I'm getting purpura now on my hands. I've never had purpura before. Also it seems as though I am sometimes very responsive to prednisone and sometimes not. I wonder if there is a chance that eltrombopag could work again? Just a thought. People like Avatrombopag, I wonder if you have explored that option?

My platelets were 8 a couple weeks ago, no apparent reason for the drop. So I was also back on dreadful prednisone again also. I get kind of angry and intense on it and also have insomnia, hopefully my behavior is acceptable and not a representation of how I feel inside. I was at two doctor visits while on prednisone and felt very upset and confused after both visits, feeling like the doctors aren't helpful, uncaring, I can't understand them because they don't communicate well- I want to quit everything! haha Of course it was partly the prednisone and also I may have low thyroid (did labs today). Still I'm grateful to have pred as a rescue treatment that I can carry with me. I hope your prednisone taper goes well MrsB! Good you were Covid negative.

Take care- have a happy and safe and healthy holiday everyone!
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ITP Rollercoaster can be so infuriating !!!!! 5 months 2 weeks ago #71946

  • mrsb04
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  • ITP since 2014. Retired nurse. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use.
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Thank you poseymint

My last day on 20mg Pred. Down to  a week of 15mg tomorrow.  Oh for a decent night's dream free sleep.  
Retrospectively I wish I had done Rituximab all those years ago. If we weren't in the middle of a worldwide pandemic I would have opted for it this time but for now it's a 6 month trial. If it works I will be allowed to stay on the medication. If not I'm in for some thinking about what next.
My bone marrow will enjoy the rest I'm sure, The bone pain has already ceased within 2 weeks of stopping Romiplostim. I definitely will never take it again.  As Avatrombopag  has finally been authorised for chronic ITP over here I may well opt for it but  will ask to go on iron supplements at the outset as anaemia is one of the commonest side effects. 

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ITP Rollercoaster can be so infuriating !!!!! 5 months 2 weeks ago #71953

  • MelA
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Not sure what happened to my post mrsb - but I am so sorry you are having to deal with this!  I won't go into what I posted
earlier that didn't show up - I am sorry the prednisone is causing dreams, I remember that all too well even at the dose of 20mg a day.  I sure hope you get in that trial and have great results!!!  Great to hear your bone pain has ceased!  thinking of you!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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ITP Rollercoaster can be so infuriating !!!!! 5 months 1 week ago #71954

  • Juliandrea85
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It's difficult and sometimes I feel helpless. For me, the last two months have been really hard. 
I have problems at work since summer, and my anxiety problems came back. So I was put again on fluoxetine and alprazolam. After a month, november 17th, I had a big crash and count of 5 so I must stay in hospital for ivig.
I had to take days off work and after three days i had the worst migraines ever. It was the worst ivig experience in my life ( i had ivig on february and december and i had adverse effects but nothing compares to this time). I changed fluoxetine for agomelatine with my  other doctor.. .we suspect it could be related to that crash . i left fluoxetine cold turkey :( difficult to do.
After that I had good counts 180 the 19th, 340 the 24th. 239 the 29th november.
Last week, 12/07 i was on 336 and i had no romiplostim.
I was happy after all  and also for a little rest of romi. but sunday I saw a little petechiae and bruises. I was thinking about a count of 50-80...but today 7 again.
My doctor avoided ivig and i had metilprednisolone. 
We also are in difficult times in my family because grandpa had a stroke. He's recovering ...but I must help AND manage to have time for  my ITP crazy moment...
I feel like I would like pospone christmas too

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ITP Rollercoaster can be so infuriating !!!!! 5 months 6 days ago #71961

  • mrsb04
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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. 

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ITP Rollercoaster can be so infuriating !!!!! 5 months 5 days ago #71963

  • Juliandrea85
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Good luck with the next count :) !!
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ITP Rollercoaster can be so infuriating !!!!! 5 months 5 days ago #71967

  • mrsb04
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2 nights in one's own bed is good for the soul. I feel almost human this morning.

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ITP Rollercoaster can be so infuriating !!!!! 5 months 4 days ago #71979

  • mrsb04
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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. 

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ITP Rollercoaster can be so infuriating !!!!! 5 months 4 days ago #71983

  • Juliandrea85
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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

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ITP Rollercoaster can be so infuriating !!!!! 5 months 3 days ago #71992

  • MelA
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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!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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ITP Rollercoaster can be so infuriating !!!!! 5 months 3 days ago #71994

  • mrsb04
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Juliandrea85   Avatrombopag  is not yet licensed for chronic ITP in the UK

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ITP Rollercoaster can be so infuriating !!!!! 5 months 3 days ago #71995

  • mrsb04
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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. 

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ITP Rollercoaster can be so infuriating !!!!! 5 months 3 days ago #71998

  • CindyL
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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.
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ITP Rollercoaster can be so infuriating !!!!! 5 months 3 days ago #72001

  • mrsb04
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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.   
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ITP Rollercoaster can be so infuriating !!!!! 4 months 1 week ago #72075

  • mrsb04
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Count still in the gutter but apart from clumsiness induced bruising I'm asymptomatic.  
Count = 6 on 10mg Pred and 50mg Eltrombopag.  It is obvious that Pred is having zero effect on my ITP. It is having a massive effect on my sleep  and cognitive abilities.
Saw consultant this morning and told her I couldn't stand Pred any longer  and was going to taper off it. She was very understanding and in agreement so dropped down to  7.5mg, Eltrombopag up to 75mg and oh joy of joys demoted back to weekly bloods. 
May need another try at IVIg if count persists in single figures. 
I also now have TXA in reserve in case I develop active/mucosal bleeding. 
On a positive front it looks like the PRN 1008 trial will restart next month. 

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ITP Rollercoaster can be so infuriating !!!!! 4 months 1 week ago #72079

  • CindyL
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I'm sorry to hear this, mrsb!
I hope you can get into the trial when it starts back up!
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ITP Rollercoaster can be so infuriating !!!!! 4 months 6 days ago #72082

  • MelA
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That's the pits mrsb!!  I'm so sorry!!  Thankfully you are asymptomatic though.  Sure hope the PRN 1008 trial does restart soon, and you are in it!!  Boy won't it be nice to get down & off pred - it is the drug we love to hate that for sure!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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ITP Rollercoaster can be so infuriating !!!!! 3 months 4 weeks ago #72105

  • mrsb04
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Count =35 on 75mg Eltrombopag and 7.5mg Pred. Pred reduced to 5mg. No news on trial start date 

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ITP Rollercoaster can be so infuriating !!!!! 3 months 4 weeks ago #72106

  • MelA
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 Ok, that's a better count - fingers crossed the decrease in prednisone treats you well!!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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ITP Rollercoaster can be so infuriating !!!!! 3 months 4 weeks ago #72107

  • mrsb04
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I do hope so Melanie. Sleep has definitely improved. I was sceptical at dropping dose too quickly but so far so good. 

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ITP Rollercoaster can be so infuriating !!!!! 3 months 4 weeks ago #72108

  • CindyL
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Glad to see things are leveling out for you, mrsb! And that your sleep is improved.
Now if only you get accepted into the PRN 1008 trial and it works!
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ITP Rollercoaster can be so infuriating !!!!! 2 months 1 week ago #72217

  • mrsb04
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Still no news on trial start date...count reached 74 a fortnight  ago on 75mg Eltrombopag and 4mg Pred. Eltrombopag reduced to 50mg at my request as fed up of side effects (poor sleep, dreams waking me up every night  &  IBS being main ones). Haemo just messaged me repeat  count yesterday =9.  I'm not surprised have quite a few bruises. Back up to 75mg Eltrombopag from tonight and 5mg Pred in the morning.
I am thoroughly fed up 

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ITP Rollercoaster can be so infuriating !!!!! 2 months 1 week ago #72218

  • CindyL
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I'm sorry to hear this, mrsb.  Wish I could give you some of mine.
Hopefully you'll hear soon about the trial start date.
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ITP Rollercoaster can be so infuriating !!!!! 2 months 1 week ago #72220

  • MelA
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Noooooooo mrsb!!   Darn - I am so sorry to hear this news, bless your heart!!  
I'm with Cindy, wish I could give you some of mine (but you probably wouldn't want them, they are anti-body coated ;) - sorry bad joke, wanted to make you smile).

Boy I hope they get that trial moving soon!   
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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