Newly diagnosed with ITP low platelet - ITP Support Assoc...

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Newly diagnosed with ITP low platelet

Lawcomo
Lawcomo

Was diagnosed with ITP, was hospitalized with count of 1, given transfusion and steroids. Crashed after couple of weeks was hospitalized again with 1 and given another transfusion. I have had bone marrow biopsy and it came out ok. Currently off steroids they I’d nothing for my counts. I am on endplate and get shot when platelets are low. Currently been 4 weeks since I’ve had a shot. I’ve had 3 so far. I have spleen removal surgery scheduled but got postponed due to Coronavirus. Platelets are dropping but platelets last check was 190. I get blood tested every 2 weeks. I am 59 years old and never no major illness or had been hospitalized till this. I had went to primary care when I had bruises and red dots and mouth sores. Glad to be part of your group.

21 Replies
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Hi, sorry to hear about your problems. I was diagnosed 10 years ago with a count of around 60. It was monitored without meds for a few years until a sudden drop to 29. That was when I had to join the mysterious world of ITP treatment! Nothing seems to work for everyone. At first I was put on steroids, initial rise then a huge drop. That was followed by an infusion of IViG, again the same result as steroids. Next came an infusion of Rituximab, same result as before. A bone marrow biopsy was done, but nothing untoward was found. It seems that my immune system is attacking my platelets, so a transfusion of platelets was out of the question. At no time was a splenectomy suggested, which I wouldn’t have even considered unless it was 100 per cent certain to cure the ITP. Then I started getting NPlate injections which stabilised my count at around 40-50. At last! I was taught how to set up and self-inject at home which made things a lot easier. However after 3 years I discovered that a daily tablet of Eltrombopag (Revolade) might be even easier - especially as I travel abroad quite a bit and it was proving almost impossible to guarantee a handy fridge to store the NPlate in. After consulting my haematologist it was decided to try the tablet. After initial juggling to get the dose right I now take 25mg daily and my count has stabilised at over 100 - I have had this high count for over a year now. I am not suggesting that this could be the answer for you, but it might be worth considering. Good luck in your quest!!

Lawcomo
Lawcomo in reply to Lynney11

Thank you, if meds will control that seems like the best route to go, I would have already had my spleen removed if not for the pandemic. This site has given me more questions to ask. Thank you.

SRJEER
SRJEER in reply to Lynney11

Revolade is too Expensive.. My 11yr old son has been advised Dapstone tablet no ce a day.

Hello Lawcomo and welcome to the group.

As someone new to ITP you may find the following links helpful...

itpsupport.org.uk

pdsa.org

globalitp.org

novartis.co.uk/ITP-patient-...

Hope this all helps.

Best wishes

I have had a similar journey - platelets at 3, IVIG, steriods, Rituximab and then speen removal. I would certainly do more research before getting your spleen removed - any positive results usually are only temporary. My platelets stayed up for about 4 weeks after removal then started dropping again.

I now take Eltrombopag daily and platelet levels vary, but are staying safe.

I was in your situation when it was diagnosed first in hospital.. I guess @ hospitals they are aggressive in treatments and look to discharge when your platelets are back normal. feel it’s too early for spleen removal, usually they suggest only if all the treatments had failed which can take more than a year. i wish you good luck and hope you have a good dr and find treatment quickly that works for you. For me it was mix of prednisone danazol and vitamins with good diet.. and of course lot of prayers.

Lawcomo
Lawcomo in reply to christfollow

Thank you!

Lawcomo, if you wish to read a quick version of my 15 year ITP journey, please feel free to have a look at my ITP blog at the following link....myownpurplepatch.simplesite...

If you scroll down to the bottom of the blog that will take you to the start. The most recent updates are at the top of the blog.

Best wishes

Hi Lawcomo, was diagnosed with itp back in november 2017, I had 3 platelets, and was 35 at the time.

They tried steroid, didn't work and then IVIG, which brought my platelets back to normal level... but it crashed again 3 weeks, later back to 10. They gave me IVIG again and this continued for 2 years , I was getting IVIG every 4 to 6 weeks..and blood test almost every weeks. They wanted to do the splenectomy but I was looking at all my options and hoping for a spontaneous remission, so I was fighting it.. On December 2nd 2019, after 2 years, I finally got the spleenectomy... now it's been 6 month and my blood test are normal, well I'm at 530 platelets.. its a bit higher than the normal but its stable...

The general idea is to wait one year,in case of remission, it also give you time to make your research and make your descision.

I tried many things to bring my platelets up..chinese medecine, papaya leafs, I clean my food to reduce inflamation, I stop gluten for a while, lost weight, train more.

For my case, my platelets were more stable during the summer, (I live in Canada). And it got better when i started losing weight, when i was getting IVIG it would rise to higher value. It might all be coincidence.

Also when I was getting the Flu it would crash my platelets.

Good luck and be strong my friend

Lawcomo
Lawcomo in reply to Daveitp

Thanks for sharing, after taking the end plate mine stayed in the normal range for 8 weeks dropping some each week. Got blood work done last Friday and they crashed to 5 or 50000 from 180000. Got another shot, checking to see if they improve this Friday. My blood Dr. still thinks I need the spleen removed. I’ll probably follow his advice. Do not know when they will schedule surgery. I pray that will resolve which he said if it was him he would do the splenectomy.

Kazpig1
Kazpig1 in reply to Lawcomo

Hi I was wondering if you have had an indium scan. I had one as my consultant was taking about spleen removal, the scan showed that destruction of my platelets was not in my spleen but in my liver, therefore removing my spleen would have been pointless. I know not all countries do them, but if you can get one done I would try to before you make any decisions

Anthonyh7
Anthonyh7 in reply to Kazpig1

The indium label scan is only carried out widely in the UK, albeit only at selected hospitals.

To get a list of where it is available in the UK, get in touch with the ITP Support Association .. see itpsupport.org.uk

Such a scan will give an indication of whether or not your platelets are being destroyed in your liver rather than in the spleen, ( albeit like with most things in ITP), it is not 100pc accurate.

But better, in my view, to have the test before removing the spleen if your liver is the culprit. After all once the spleen is gone you can't get it back ! (though I have heard of a few quite rare cases where fragments of the spleen are left in the body and grow back)

Lawcomo
Lawcomo in reply to Anthonyh7

I’m in the United States as I understand no tests.

Lawcomo
Lawcomo in reply to Kazpig1

No my Drs. did not mention any test, they only did CT scan to see if enlarged. My surgery is scheduled for May 18. I can only pray and trust the drs. Thank you for your feedback.

Kazpig1
Kazpig1 in reply to Lawcomo

Sorry to hear the tests not available to you, good luck with your operation.

Lawcomo
Lawcomo in reply to Kazpig1

Live in United States no test.

Lawcomo
Lawcomo in reply to Daveitp

I forgot to ask, since having spleen removed have you been sick more?

Daveitp
Daveitp in reply to Lawcomo

No not really, nothing change for now.

But i got sick only once since i got splenectomized tho.

Lynwoodley
Lynwoodley in reply to Daveitp

Hi I also found in hot places my platelets went up so I started taking Vitamin D3 25ug 2 tablets a day and this seemed to work my platelets went up but always check with haematologist before taking anything

Lawcomo
Lawcomo in reply to Lynwoodley

Thanks!

General information about splenectomy ...

itpsupport.org.uk/index.php...

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