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Dougie's latest count

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9 years 5 months ago #46544 by alisonp
Dougie's latest count was created by alisonp
We haven't been for one since August, but he seems remarkably stable at 23 - his last count was somewhere in the 20s too. On the (very) positive side, he has virtually no symptoms and 23 is a good 10 points up from his normal for the last six years. On the down side, its not high enough to have surgery to remove a mole that the dermatologist says needs to go. As Dougie has little response to steroids and bad reactions to IVIG, the haematologist is going to see if he can get approval for a very short course (3-4 weeks) of one of the TPO drugs. Its in situations like these that I think that ITP just unnecessarily complicates simple things :angry:

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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9 years 5 months ago #46559 by Sandi
Replied by Sandi on topic Dougie's latest count
I'm glad his counts have been stable in the 20's! That's huge for Doug!

The only problem with TPO's on a short term basis like that is that it could cause a drop after he's finished and he might lose his nice cushion in the 20's. It would also be hard to schedule the mole removal because counts can vary wildly for the first few months. We're seeing the adults report counts of 200k one day and 4k at the next count.

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9 years 5 months ago #46562 by alisonp
Replied by alisonp on topic Dougie's latest count
Hi Sandi,

I wondered about the unpredictability of it too, but the Dr said its getting to be the standard treatment for adults needing surgery now. I hadn't considered it bouncing him out of the 20s, so I will bring that up when I talk to the nurse next week. He did say that a count of 30 would be acceptable although he would prefer 50+. At least him and the dermatologist are talking now.

A count of 20-something and no symptoms is such a reassuring place - its ages since I've worried about Dougie doing things. To the extent that the other week I took them to an indoor ski place in Manchester and I only remembered afterwards that maybe I should have considered his count and whether it was safe or not!!! Bad mum points!

Ali

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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9 years 4 months ago #46598 by Sandi
Replied by Sandi on topic Dougie's latest count
We've not had many adults using N-Plate before a surgery, so I haven't seen that done. I have only witnessed the problems they are having trying to achieve stable counts. For some people, it's been taking a few months at the least.

I guess all you can do is have a count done the day of the surgery and if it's down, cancel and reschedule. Hopefully the doctor doing the surgery would understand.

One of the known side effects of N-Plate though (when the drug is stopped) is a fast drop to single digits. I'm sure that doesn't happen for everyone, but it could. Or, with any real luck, his counts could go up and stay there!

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9 years 1 month ago - 9 years 1 month ago #48815 by alisonp
Replied by alisonp on topic Dougie's latest count
It looks like Dougie will get three weeks of romniplostim (sp?) in June to get his platelets okay for the minor op at the beginning of July. If it drops his counts it can't do much harm - I don't know whether it's the stress of his GCSE exams or what, but he is covered in petechiae and bruises at the moment so his count can't be much anyway. Fingers crossed it works well enough, quickly enough that the op can actually go ahead :-)

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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9 years 1 month ago #48823 by Sandi
Replied by Sandi on topic Dougie's latest count
I hope it works. That's a tricky way to get counts up for surgery.

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9 years 1 month ago - 9 years 1 month ago #48830 by Ann
Replied by Ann on topic Dougie's latest count
Ali, you may find that you and Dougie like the romiplostim and higher counts and elect to continue with it. I've been off it for over 2 years now and with a count of 161 at last week's blood test. The first normal count with no treatment since 2006. You never know, it might work for Dougie too.

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9 years 1 month ago #48858 by DeeDee Marie
Replied by DeeDee Marie on topic Dougie's latest count
Sometimes the Dex pulses can get his platelets up enough to have the surgery. N-Plate is good, but it could mess with his counts if you just use it temporarily. Just my thoughts.

Dee Dee

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9 years 1 month ago #48865 by BethF
Replied by BethF on topic Dougie's latest count
Hi, Ali -
I haven't been on this site in ages and just stopped in for a look. I'm sorry Dougie is still dealing with all this. Good luck with the romiplostim and I hope it raises his counts enough for the surgery and beyond!

Beth - mom to Brady, age 18, diagnosed 1/18/02.

Beth - mom to Brady (age 19, diagnosed 1/18/02) and Matthew (age 21)

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9 years 1 month ago #48904 by alisonp
Replied by alisonp on topic Dougie's latest count
Hi Beth, gosh I can't believe Brady is 18! How is he doing? Dougie is fine really, he still ignores the condition 99% of the time - it's just that things like this seem stupidly complicated because of itp.

Ann, I don't think he could get it permanently because I don't think it's available for kids unless you get special funding from the PCT or something.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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9 years 1 month ago #48914 by Sandi
Replied by Sandi on topic Dougie's latest count
Alison - I just came across this today. Perfect!

Abstract
BACKROUND:

In patients with Chronic ITP (c ITP), the platelet count tends to be quite variable and, in the majority of cases, specific therapy is not warranted on a regular basis. However, patients with low platelet count (<30nL) or with bleeding complications would require therapy such as prednisolone, IVIG infusions, splenectomy, and/or immunosuppression. Romiplostim, a thrombopoietin agonist, has also proven to be useful in improving platelet counts. cITP can be associated with bleeding complications peri-operatively. As such, a higher platelet count is warranted (approximately 100nL), particularly for invasive surgeries such as orthopaedic surgery, cardio-thoracic surgery, head and neck surgery, and abdominal surgery, where risk of bleeding is quite high already.
AIM:

Safety and efficacy of short-term use of romiplostim, perioperatively.
METHODS:

Patients with chronic ITP requiring major surgical interventions were enrolled in the study. Patients with malignancies or MDS, major bleeding disorders, under 18 years of age or pregnancy were excluded.

CONCLUSION:

This study has shown that use of romiplostim is safe and effective in improving platelet counts pre-operatively and achieve excellent haemostasis, with no associated bleeding complications or rebound thrombocytopenia. A larger study involving multiple centres is required to verify these findings.

This article is protected by copyright. All rights reserved.

www.ncbi.nlm.nih.gov/pubmed/25904300
The following user(s) said Thank You: mrsb04, bobbiesade

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9 years 1 month ago #48916 by alisonp
Replied by alisonp on topic Dougie's latest count
Sandi, that's just FAB!!! Thank you so much - that gives me a lot more confidence in this approach.

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9 years 3 weeks ago #49445 by alisonp
Replied by alisonp on topic Dougie's latest count
It seems to work for him! Count today one week after mid-range dose (375?) was 83 :) So he got the same dose again and goes back for a count on Monday to check he is good to go for Tuesday. Fingers crossed it continues to produce the desired result.

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9 years 3 weeks ago #49447 by DeeDee Marie
Replied by DeeDee Marie on topic Dougie's latest count
Alison,

That's great news! It's good to know that it is working for him. Praying everything works out fine for surgery.

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9 years 3 weeks ago #49449 by Rob16
Replied by Rob16 on topic Dougie's latest count
You may want to think whether there is anything else that he might need done while his platelets are up: Dental cleaning, wisdom teeth (though 16 may be a little young), etc.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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9 years 3 weeks ago #49450 by Sandi
Replied by Sandi on topic Dougie's latest count
Alison, that's fantastic! I'm so glad to hear it! :cheer:

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9 years 3 weeks ago #49451 by alisonp
Replied by alisonp on topic Dougie's latest count
Hahaha - Rob, I love your thinking. I will be phoning the dentist tomorrow. Dougie is thinking along the same lines but to a different end - he has roller coasters and paintball lined up for the weekend already :)

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9 years 3 weeks ago #49452 by Rob16
Replied by Rob16 on topic Dougie's latest count
I didn't mean to be a killjoy! I hope I don't ruin his fun!

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9 years 3 weeks ago #49458 by alisonp
Replied by alisonp on topic Dougie's latest count
Rob, don't be daft, getting him into see the dental hygenist this week is an ace idea! And one which I am sure he will happily swop for a day of paintball :P

Thanks for the good wishes everyone. It's a great relief that it seems to work.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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9 years 3 weeks ago #49482 by Sandi
Replied by Sandi on topic Dougie's latest count
I like that word....daft. Think I will start using it! :P

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9 years 3 weeks ago #49490 by BethF
Replied by BethF on topic Dougie's latest count
Alison -
Glad this seems to be working and Dougie can take care of a few boring, necessary things and have some fun too!

Yes, Brady is 18 already and graduated from high school two weeks ago. He just returned from "Beach Week" with a bunch of his friends and we're getting ready for a celebration trip as a family, then college orientation and he'll be heading off to college at the end of August. Time flies...

We mostly ignore ITP at this point and haven't even had a count done on Brady in a couple of years. But just before he left for a week at the beach without us he had a massive nosebleed, so we plan to take him in for a count later this week. Hopefully it was just one of those things and doesn't mean anything ITP-related.

Good luck with Dougie's adventures!

Beth - mom to Brady (age 19, diagnosed 1/18/02) and Matthew (age 21)

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9 years 2 weeks ago #49550 by alisonp
Replied by alisonp on topic Dougie's latest count
Sandi - LOL, sometimes I forget that English and American are not exactly the same language!

Beth - sounds like a fantastic summer :-) I hope the blood test works out ok - two of my kids without ITP have had far worse nosebleeds than Dougie has ever done, so it's not always a sign!

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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9 years 2 weeks ago #49568 by Sandi
Replied by Sandi on topic Dougie's latest count
Alison - you keep using your British words. I like it!

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9 years 2 weeks ago #49675 by alisonp
Replied by alisonp on topic Dougie's latest count
Wow, perfect dose - today's count was 77 so everything is fine for tomorrow :-)

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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9 years 2 weeks ago #49680 by Sandi
Replied by Sandi on topic Dougie's latest count
Great! That IS perfect!

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9 years 2 weeks ago - 9 years 2 weeks ago #49711 by alisonp
Replied by alisonp on topic Dougie's latest count
And the actual event was........completely uneventful :)

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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9 years 2 weeks ago #49713 by Sandi
Replied by Sandi on topic Dougie's latest count
Great news! I'm glad everything went so smoothly. Will he stay on the med?

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9 years 2 weeks ago #49714 by alisonp
Replied by alisonp on topic Dougie's latest count
No, the romiplostim was a one off just for surgery. Hopefully he wont get a dip coming off it. Its nice to know that something works if he ever needs it though. He is also taking tranexamic acid for the next few days.

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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9 years 1 week ago #49734 by Sandi
Replied by Sandi on topic Dougie's latest count
Yeah, watch for a quick drop...that is very possible. I hope it doesn't happen.

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9 years 2 days ago - 9 years 2 days ago #50026 by alisonp
Replied by alisonp on topic Dougie's latest count
Just thought I would wind up........Dougie didn't appear to drop badly having stopped the romiplostim. I thought it was an excellent way to get counts up temporarily and I would recommend it. The only downside I can think of is having to go to the hospital weekly for counts and injections - but it was only for two weeks so not too bad :P

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