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It would appear I have lost my response to Eltrombopag 4 months 1 week ago #71325

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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First Pfizer vaccination dropped my count from 58 to 19. It came back up without any steroid intervention to 42 a fortnight later. Pre 2nd dose of Pfizer (11 weeks after 1st dose) it was 44 so no real rise there. Count dropped to 18 within 48 hours of 2nd dose. 2 weeks later it was 21, jump another fortnight and it is now 23. Which explains why I am covered in bruises, experiencing waves of fatigue and permanently tired.
I have been on Eltrombopag for 4½ years and at 75mg/day for the last 16 months during which time my Hb and ferritin levels gradually dropped until I needed to take iron supplementation.
Just been into clinic to see my Haemo consultant who feels I may well have lost response to Eltrombopag. We have had a good discussion and despite having sworn never to go back onto Romiplostim I've come home with 4 weeks worth to self administer.
When I was taking it previously I was working 12 hour shifts (days and nights) on a fast paced high dependency unit looking after very sick patients, tapering prednisolone, worrying about my ageing father managing on his own and caring for pre school age grandkids. It could well be that now retired with a much less stressful life I may not have such violent swings in my counts, only time will tell.
I am prepared to give it at least 6 months to see if I can stabilise at a count between 50-100. Plus I can eat what I want when I want and return to having porridge and a warm milky drink for my supper.

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It would appear I have lost my response to Eltrombopag 4 months 1 week ago #71326

  • momto3boys
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Well phooey mrsb! That is not the news that you want to hear. I'm sorry to hear that your counts have been low and that you are symptomatic. In hearing about the difference in your stress levels from the time that you took Romiplostim before and now, I'm hopeful that it might work better for you this time around?
Fingers crossed for you. Is avatrombopag/doptelet an option for you over there? It has been working really well for me thus far, but I seem to recall that you had to wait a while before having access to eltrombopag/promacta, so maybe avatrombopag is still too new to be easily accessible. They certainly made me jump through some insurance hoops before I could get it.

Leaving those dietary restrictions behind is quite nice, though! Enjoy your milky drink and porridge.
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It would appear I have lost my response to Eltrombopag 4 months 1 week ago #71327

  • Meredith
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I am very difficult to treat. I must take bith the platelet boosters and the immunosuppressant drug that slows the destroyers down . Hence, I take Promacta and Cellcept I have also taken NPlate and Cellcept.

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It would appear I have lost my response to Eltrombopag 4 months 1 week ago #71328

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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Mom...
I have just finished my porridge and milky drink. What a treat. Avatrombopag is not yet available over here. It was going to be discussed by NICE (our regulatory panel) but as with many other aspects of health care it is on hold due to Covid.

Meredith ...I am still on Prednisolone 2mg/day and have no intention of ingesting any additional immunosuppression during a world wide pandemic.

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It would appear I have lost my response to Eltrombopag 4 months 1 week ago #71329

  • Meredith
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Good news. I have positive antibodies for COVID—- had my Pfizer in January and February. I am working with the team at Mass General— Dr. Kuter. Hopefully I will get in his clinical trial for TAK-079.

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It would appear I have lost my response to Eltrombopag 4 months 1 week ago #71330

  • MelA
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Oh mrsb that is a bummer! But I love your positive attitude about romiplostim and not having a diet restriction! You keep that good attitude!! We are pulling for you!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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It would appear I have lost my response to Eltrombopag 4 months 1 week ago #71331

  • CindyL
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Oooh, so sorry to hear that, mrsb! Hopefully the romiplostim will help you.
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It would appear I have lost my response to Eltrombopag 4 months 1 week ago #71334

  • momto3boys
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Mom...
I have just finished my porridge and milky drink. What a treat. Avatrombopag is not yet available over here. It was going to be discussed by NICE (our regulatory panel) but as with many other aspects of health care it is on hold due to Covid.


I figured as much. You'll have to keep an eye on it for the future. Since you had a good response to the eltrombopag it would be nice to give the avatrombopag a try when its availability improves. I love the lack of dietary restrictions as well! Hopefully with your lower stress levels romiplostim will do the trick for now. Keep us posted.
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It would appear I have lost my response to Eltrombopag 4 months 1 week ago #71342

  • poseymint
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MrsB- That is frustrating! So sorry to hear it. But I tend to wonder if perhaps your loss of response may not be permanent.? I was on eltrombopag 4 different times over a period of 4-5 years. I quit each time due to side effects but oddly, my response and side effects were different each time I tried it. One year 25mg did nothing at all, and another time 25mg brought my counts up into the 40-50 range. One time 50mg made my counts really stable around 50K. And one time on 50mg my counts went up to 100K.

I'm on Nplate/Romiplostin and also slowly losing response it seems. We keep raising the dose slightly to get the numbers to be around 30. But I have a feeling that if I quit Nplate for a while (I've been on it for 5 years) I might have more response when I start back again. Not sure but have been discussing it with the hematologist. Also have been looking at Avatrombopag which sounds very good- except (like Nplate) the price is so crazy expensive. I've read it is $10,000.+ a month for 20mg tablets. There is an assistance program so that might be a possibility. Good luck with Romiplostin!
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It would appear I have lost my response to Eltrombopag 4 months 2 days ago #71389

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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My first week back on Romiplostim at 2mcg/kg produced a platelet count of 14, dose increasing to 3mcg/kg tomorrow.

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It would appear I have lost my response to Eltrombopag 4 months 2 days ago #71393

  • momto3boys
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Hang in there. Hopefully this week will yield some more promising results!
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It would appear I have lost my response to Eltrombopag 4 months 1 day ago #71395

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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Mom
I sure will hang in there.... Apart from bruises (my usual clumsy self) I have no symptoms. Am carrying wads of tissues everywhere but no nose bleeds so far.
9 days off Eltrombopag, I have realised I am sleeping better, have more energy and get hungry which is something that hasn’t happened for a long time. Currently munching a large slice of heavily buttered toast whilst my milk warms up for pre bed nightcap.

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It would appear I have lost my response to Eltrombopag 4 months 1 day ago #71396

  • MelA
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mrsb I have no knowledge of this treatment but sounds like things are going well - I'm happy for you!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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It would appear I have lost my response to Eltrombopag 4 months 1 day ago #71402

  • momto3boys
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Mom
I sure will hang in there.... Apart from bruises (my usual clumsy self) I have no symptoms. Am carrying wads of tissues everywhere but no nose bleeds so far.
9 days off Eltrombopag, I have realised I am sleeping better, have more energy and get hungry which is something that hasn’t happened for a long time. Currently munching a large slice of heavily buttered toast whilst my milk warms up for pre bed nightcap.

Nice that you are feeling better off of the Eltrombopag/Promacta. I definitely felt better, but that was mostly because I wasn't waking up with those crazy deep "bone pains" in my hips and legs. It was a big relief to get off of it. Great to hear about you drinking all the milk you want, lol :)

I've always felt that people who get the ITP nosebleeds have the worst symptoms, because those are so disruptive. I'm really glad that you haven't had any thus far. Here's hoping the Romiplostim/NPlate starts kicking in soon!
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It would appear I have lost my response to Eltrombopag 3 months 3 weeks ago #71450

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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Blood test Friday. Haemo rings yesterday asking if I’m ok as my count is 6!
I was astounded; less bruises than last week and completely asymptomatic, not a hint of a nose bleed.
Asked me to go to local hospital ASAP get a repeat test then go home and administer 250mcg of Romiplostim.
That count came back at 28. If it’s up in the 200s this Friday I will not be happy.

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It would appear I have lost my response to Eltrombopag 3 months 3 weeks ago #71452

  • MelA
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Whoa, 6?! I'm so sorry Anne!! I'm glad the repeat test was higher - will be interesting to find out this Friday's number.
Bless your heart!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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It would appear I have lost my response to Eltrombopag 3 months 3 weeks ago #71453

  • CindyL
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That sucks, Anne! Hopefully Friday's count will be much better!
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It would appear I have lost my response to Eltrombopag 3 months 3 weeks ago #71454

  • momto3boys
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Whew. 28 is a lot better than 6, but still, hopeful you don't go spiking up there. Fabulous that you aren't having any symptoms, though, which means that you have some time to work with in getting your dosages sorted. Good luck.
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It would appear I have lost my response to Eltrombopag 3 months 3 weeks ago #71457

  • poseymint
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Great you didn't have symptoms at 6k Mrs B! That is what happens with me- no symptoms below 10. Its a mystery, I think in my case there is something compensating. Activated platelets? I don't know, but its nice to not have bleeding. Symptoms do seem to change over time. I now get purpura spots on my hands when my counts are in the teens/20s. I've never had that before.
Re: the 28 count, as you know- its hard to know if the dose should be raised or just give the current dose time to work. Since the doses build upon each other, it may have come up without the raise, but hard to tell. You avoided more prednisone by raising Romiplostin, so thats great. Yes, like you said, I hope the increase doesn't shoot your counts way up. My counts never shoot up on Romiplostin, they are oddly stable (*_*)? I'm up to 500mg weekly, I'm still responding but not well. I was at 408mg dose for over 3 years, then 2020 my counts started dropping into the teens. good luck!
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It would appear I have lost my response to Eltrombopag 3 months 1 week ago #71636

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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Count 25 after the 250 mcg dose so next dose was a full vial (of the 250mcg/0.5ml) which equates to somewhere around 325mcg-350mcg. The patient information leaflet states it is 375mcg for a full vial but I dispute this I have not managed draw more than 0.68ml. Count came back at 44. Absolutely symptom free. Promoted to fortnightly bloods and self managing dosing. Thrown out of clinic for 8 weeks. If England beat Denmark tomorrow and win the final on Sunday it will be an absolutely perfect week.

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It would appear I have lost my response to Eltrombopag 3 months 1 week ago #71638

  • Juliandrea85
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Hello.
How is it going with romi? Do you feel good or tired?
I've start to tolerate it well enough, but the first months and after dosage increases, i felt tired as hell next day. I thank God I work from home so the day after romi I can make little pauses from my work. As times pases by, I feel my body tolerates romi better. At least i am able to work almost with a normal rythm ...and i dont need paracetamol anymore the day after

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It would appear I have lost my response to Eltrombopag 3 months 1 week ago #71641

  • mrsb04
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Juiliandrea
I feel absolutely fine on it. Last time I used it I took 150mcg without any problems except for my counts swinging around all over the place (lowest 6 highest 230) which is why I stopped taking it. However now I am retired with a more regular and much less stressful life I am hoping for more stability in counts but only time will tell.

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It would appear I have lost my response to Eltrombopag 3 months 1 week ago #71642

  • MelA
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44k - great!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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It would appear I have lost my response to Eltrombopag 3 months 1 week ago #71643

  • momto3boys
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I somehow missed seeing that you were back up at 44k! I'm so glad the tide has turned and you are back in your previous count range for the moment. Hopefully, you can stay in the 40s and 50s and call it good! And since England squeaked it out against Denmark yesterday, you are well on your way to an idyllic week!
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It would appear I have lost my response to Eltrombopag 2 months 4 weeks ago #71669

  • mrsb04
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Now up to 132. Staying on same dose and testing again in 2 weeks. Hope count doesn't go any higher. Prefer a count around 80.

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It would appear I have lost my response to Eltrombopag 2 months 3 weeks ago #71670

  • MelA
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Oh my, that is really a great count! But I know what you mean about preferring a count around 80 - will be interesting to see what it is in 2 weeks.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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It would appear I have lost my response to Eltrombopag 2 months 3 weeks ago #71674

  • Hal9000
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Oh pooh. At least Nplate is working for you Anne. Around a 4 dose for the 132 count?
Sounds like mom24b is on Nplate now too?

Stopping by to signup for this years PDSA conference. See what the doctors say about new treatments in the works. Maybe all this competitive COVID research has shaken up the immune system knowledge base for the better. Hopefully there has been some threads here on the apparent link between COVID severity and certain fungus's?

Like Posey was saying. Reading this thread makes me wonder. What symptoms might crop up going without Promacta, or, a very very low dose. LOL, is it possible to rack up a baseline count (eg 6, or 12 in my case) and have little to no symptoms?

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It would appear I have lost my response to Eltrombopag 2 months 3 weeks ago #71676

  • mrsb04
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6.5mcg/kg Hal, haemo is hoping for maintenance dose of 3mcg/kg to keep count >50. Anything less than 15-20 = nosebleeds+++ and multiple bruises, not to mention being frozen stiff with enduring fatigue.

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It would appear I have lost my response to Eltrombopag 2 months 1 week ago #71702

  • ImPatient
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Good your count came up again, that sounded a bit scary. Is NPlate working better than Revolade for you this time? I mean does it feel better too, side effects etc.

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It would appear I have lost my response to Eltrombopag 2 months 4 days ago #71711

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. 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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2 weeks ago my count was 71 now 48 (I do have a slight cold) but this is exactly what happened last time on Romiplostim my count swung around and was never stable.
Maybe it's going to happen again. I'm seeing my haematologist on 23rd. I do not want to increase my dose. 48 is so nearly 50.

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