Do ITP patients have to go into "shie... - ITP Support Assoc...

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Do ITP patients have to go into "shielding" during the Covid-19 pandemic?

crazydoglady
crazydoglady

I am an ITP patient currently in remission with my most recent platelet count taken last month being 251. I'm not on any immune-suppressants or treatment since February 2019. Imagine my shock when today I received a text from NHS England telling me that I have to be "shielded" as I am at risk of getting Covid-19 more severely. I will apparently receive a letter in the post very soon. Has anyone else received this text, and why have we only now been told to go into "shielding"?

16 Replies
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I am in similar position, also Itp patient(+hypogammaglobulinemia) in remission from March 2019 with healthy number of platelets currently, i am 33 yo from Croatia, and there is no special guidelines here from health workers, except ''well we dont know, maybe you should stay at home if you can, but we cannot give you sick leave because you are not sick'' so i guess our goverment wants everbody to go to work normally ..

Hi Daniel, thanks for your reply. It sounds as if in your country they are as confused as they are here in the UK! I am not working but my husband works at a Primary school which is still open for the children of key workers (NHS nurses and doctors, police, supermarket workers etc). If he continues to go to work he has to live separately from me in our very small house which is impossible!

No, I had a letter fro my haematologist about it. But if you have other conditions - talk to your specialist. I had to go into shielding because of my immune deficiency but not because of ITP

No not received any texts or advice. My platelets range from 30 up to 80 and I am on no medication and only visit the haematologist every six months, i did not expect to be shielded. I did read somewhere that those who had their spleen taken out were going on the vulnerable list.

scaryteacher
scaryteacher in reply to Morgan

Ditto here.

Phew 'crazydoglady' Thank you for confirming that!

I have chronic ITP with a count of generally around 13 and I got the same message yesterday morning, advising to shield indoors until 30th June 2020. I was getting confused as I am currently shielding my elderly disabled mum and wasn't sure if it was for me or her.

Haematology Unit at my hospital couldn't confirm at all if this was for ITP and neither could my GP's surgery. I even rang Mervyn from the ITP Support Association to ask but I think none of the Health Professionals were made aware before these texts were sent out.

I did some online research and found a Paper from the International Journal of Clinical Chemistry by Lippi, Plebani & Henry which concluded, verbatim;

"Low platelet count is associated with increased risk of severe disease and mortality in patients with COVID-19, and thus should serve as clinical indicator of worsening illness during hospitalization."

crazydoglady
crazydoglady in reply to sam_b

Thanks for replying Sam. My text arrived yesterday lunchtime and I immediately rang my GP surgery who told me that they had received a message on my patient file saying that I now needed to go into shielding, but like with you, they didn't know for what reason. I told them I was an ITP patient and they told me to ring my ITP clinic to ask them. Managed to get hold of a specialist ITP nurse who said she had received calls from loads of ITP patients who had received the same text and like me were panicking! She didn't know where it had come from as it was nothing to do with them. She later rang me back and said that I should receive a letter later next week from their department telling me whether or not I need to go into shielding. At the moment I don't know either way and my husband is worried that him still being at work which involves travelling on the tube and mixing with other people, is putting me at risk.

Hello. I haven't received any such text. It may be to do with the medications you are on which affect your immune system ( eg recent immuno suppressants plus steroids ) If I remember rightly our clinicians said although platelets fall during covid that's not rejated to itp. ...

crazydoglady
crazydoglady in reply to HOLCOTT

Hello HOLCOTT, thanks for replying to my post. I am not on any immune-suppressants or treatment as I am in remission - came off MMF in February 2019, so over a year ago. I received a letter from my ITP clinic about a month ago reassuring me that I TP patients are not at increased risk from Covid -19 unless they are on high doses of steroids or certain immune-suppressants, or have had their spleen removed, or have certain other health conditions. None of which applies to me, that's why I was so confused when I received the text yesterday. Obviously something has changed or new evidence has come up.

I am in the shielding group because the drugs I’m on are immunosuppressants and that puts me at high risk of complications if I were unfortunate enough to get COVID -19. As far as I’m aware everybody is at risk of catching the virus - shielding is for those at risk of complications.

Hi

I am on immunosuppressants and have no spleen. I have been shielding for the last 7 weeks at home on my own. I have not had anything through from my doctor, hospital or the NHS to say that I am high risk. I decided I was, so have stayed in the house and not gone out. Bit disappointed not have got anything official from anyone to say I should do this, but I am not prepared to take the risk of getting the virus and being another government statistic.

NickyD

Anthonyh7
Anthonyh7 in reply to NickyD

Spot on Nicky, if you are on any immune suppressing drug or have been on them in the last 12 months or have no spleen then you should be “shielding”. Immune suppressing drugs that are included are Prednisolone (or any corticosteroid) , Rituximab, Azathioprine, Mycophenolate Mofetil & others on the list of treatments that follow ..

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

I am on Mycophenolate Mofetil & have been for 4 years so I am shielding and did get a letter from he Govt and regular text messages too from the Govt. I am in Berkshire, England.

The communications are a bit hit and miss and of course are different for Scotland, Wales and Northern Ireland.

If in any doubt whether you should be shielding or not do talk it through with your specialist/doctor. Always be cautious first and don’t take any risks if you are in doubt.

NickyD
NickyD in reply to Anthonyh7

Hi Anthonyh7

I have been on mycophenolate for nearly 10 years. Apparently there are no known side effects, which is good to know. I have been at home on my own for 56 days without going outside my front door and the hardest thing to deal with is the mild depression that is beginning to creep in.

I will stay at home for the full 12 weeks before even considering going out again. I am not prepared to catch the virus. So, only 4 more weeks to go.

Stay safe.

Nx

Hi Nicky, thanks for replying to my post. I'm sorry to hear that you haven't been sent any information about whether you should be shielding or not. I think you have made the right decision based on your health situation, but you should have been given guidance by your ITP centre. I'm shielding until told otherwise by an ITP consultant as my GP surgery have now emailed me a letter advising me that I should. I'll be annoyed if I find out later on that it wasn't necessary, but better safe than sorry as they say! Stay safe and well. X

Hi

I see it that it comes down to the individual to take responsiblity for their own safety. There is nothing physically stopping me from going outside of my front door. But I do not want to get infected. I am sure I could chase my doctor or my consultant for a letter, but they have far more important things to deal with. I know I am doing the right thing for me and for the NHS, but I appreciate your support.

Stay safe and take care.

NickyD x

Hello crazydoglady...

You may find the following links from the ITP Support Association to be helpful, if you haven't already discovered them ...

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

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

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