Email received: New Treatments for Covid. - MPN Voice

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Email received: New Treatments for Covid.

azaelea profile image
56 Replies

Hi everyone, I have just received an Email today from NHS informing me that I will be having delivered a PCR test to keep at home and use if I get Covid symptoms. They give instructions with phone numbers etc and the treatment can be administered right away if test is positive.

They say I’ve been selected because of a health condition ( will be the MPN) . I did read about this treatment some weeks ago, so it looks as if we are not the forgotten folk at last. Just wondering if my friends on here have been contacted too.

Best wishes to all for a Happy Christmas and good health and peaceful 2022. Kind regards Fran xx

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azaelea profile image
azaelea
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56 Replies
Dazakella2010 profile image
Dazakella2010

Hello… I tested positive on Friday…. Had a PCR which also come back positive… after an assessment over the phone this afternoon I’m now waiting for my anti viral meds to be delivered by my hospital. Initially I had a phone call from the nhs to say I had flagged up as testing positive because I’m under the extremely vulnerable category then a doctor rang me this afternoon to do the assessment. Very fast. X

azaelea profile image
azaelea in reply to Dazakella2010

Good. Looks as though it’s working. Do hope you’re OK and have mild dose.xx

Dazakella2010 profile image
Dazakella2010 in reply to azaelea

Thank you… I’m at starting to feel a little chesty now. My meds have now been delivered so I have just started them. Quite a few capsules! 4 capsules twice a day for 5 days. X

Mazcd profile image
MazcdPartnerMPNVoice in reply to Dazakella2010

sending you and your family all the best for a speedy recovery, take care. Maz x

light profile image
light in reply to Dazakella2010

Praying for your fast recovery.

harleydavidson profile image
harleydavidson in reply to Dazakella2010

Hope you recover quickly x

Mostew profile image
Mostew in reply to Dazakella2010

So gladyou have the meds . Hope you feel better for Xmas Warm wishes to you for the New Year

Carolyn

130396 profile image
130396 in reply to Dazakella2010

Are there any side effects to the anti viral?

katiewalsh profile image
katiewalsh in reply to Dazakella2010

Hi Please let us know how you are when you’re able to. Hope you’re feeling ok. Katie

caroline_284 profile image
caroline_284 in reply to Dazakella2010

Wishing you all the best with your meds,hope they work quickly.I have received a letter too.

NewBloom profile image
NewBloom in reply to Dazakella2010

Speedy Recovery x

Loubielou profile image
Loubielou in reply to Dazakella2010

Hi, so glad to hear you were given the meds. How are you doing? Hoping you and your family are ok. Xx

Otterfield profile image
Otterfield in reply to Dazakella2010

I wish you a swift recovery x

Wyebird profile image
Wyebird in reply to Dazakella2010

Yes I received one too. I was most impressed. My husband is type 2 diabetic he received one a few hours later.

Wyebird profile image
Wyebird in reply to Dazakella2010

Hope you only have mild symptoms and that the meds kick in really quick. Wishing you a speedy recovery.

beetle profile image
beetle in reply to Dazakella2010

I hope you recover soon x

Cja1956 profile image
Cja1956 in reply to Dazakella2010

I hope you feel better soon.

mhos61 profile image
mhos61

Hi Fran, I’m delighted for you. I’m sure this will give you much peace of mind.

Looks like ‘things’ are going on behind the scenes. It sounds like a really sensible plan. Will be interesting to see if others are contacted.

Wishing you a happy and peaceful Xmas.

Mary x

Carolyn77 profile image
Carolyn77 in reply to mhos61

I have PV and take hydrea and aspirin. I received a letter today telling me a PCR kit is on the way and to use it if i get covid symptoms and this will give me quick access to the new anti viral meds. I was surprised as although I had shielding letters from the nhs , I was never put on the extremely vulnerable list by my GP and my consultant didnt seem to know much about extremely vulnerable lists so i gave up early on trying to be acknowledged as such.Perhaps there is hope for us mpners after all and we are being recognised as vulnerable. it can only be good.

carolyn

Wyebird profile image
Wyebird in reply to Carolyn77

Hi I was never put in the high risk list as a result I waited my turn for my first jab. When boosters were introduced I sent info from MPN voice to my GP.

It worked! 🤩

I too received an email yesterday

Carolyn77 profile image
Carolyn77 in reply to Wyebird

Thanks wyebird, I'll try my gp with the letters again. Fingers crossed .

Wyebird profile image
Wyebird in reply to Carolyn77

Google off internet from MPN voice too. Good luck let me know how you get on xx

amhann profile image
amhann

Hello Azaelea - I’m ET on hydroxy and also lymphoma and got an email this afternoon to say I would be getting a PCR posted and if needs be access to antivirals - makes a change not to have to fight for help - so pleased for Dazakella that the system has worked for her, and hope she recovers quickly. Very best Anne-Marie x

mhos61 profile image
mhos61

Just found this:

gov.uk/government/news/uks-...

MPort profile image
MPort in reply to mhos61

Thanks. Very informative news article. It fills in the background to this rollout. These medications are in trials so we would join the trial from necessity (if we caught Covid and used them). And report to trial for 28 days afterwards. I have received invite email. Thanks again.

azaelea profile image
azaelea in reply to mhos61

Thanks for this link. Very interesting.

EPguy profile image
EPguy

Such a program could never happen in the US. We can't even get low cost LFTs.

Is the drug Molnupiravir?

katiewalsh profile image
katiewalsh in reply to EPguy

What is LFT?

Bluesloth1 profile image
Bluesloth1 in reply to katiewalsh

Lateral flow test. Xx

EPguy profile image
EPguy in reply to katiewalsh

Sorry for the abbreviation, it's a British term I learned here. We call it a Rapid Test or at-home test.

Lena70 profile image
Lena70 in reply to EPguy

I was just telling my husband about this. If we didn’t look after ourselves in the US, no one would. It is frustrating.

hall2 profile image
hall2

I’ve also had one of these emails so it’s useful to know.

MWxxxx profile image
MWxxxx

That's great news. I've not received an email yet but hopefully will soon as there seem to be several here who have. Just hope it is not a postcode lottery or we have to wait for our GPs to set it up -I've not been lucky with the vaccines so don't hold out much hope if its coming directly from GP surgeries. I would be interested in hearing if others are being contacted.

Helpatlast profile image
Helpatlast in reply to MWxxxx

I haven't heard yet and like you thought oh dear I do do hope it's not another hit and miss thing- but realistically I guess it will be distributed over days so hopefully we all hear in coming days

MWxxxx profile image
MWxxxx in reply to Helpatlast

Yes, you are right. It is easy to get stressed out and panicked about it all. Hopefully these emails will come out over the next few days.

mhos61 profile image
mhos61 in reply to Helpatlast

That’s my thinking too. I’m not getting hung up about it...yet!

Mal42 profile image
Mal42

I got an email. Looks like they have this in hand. Good luck keep us informed.

Mal

mystic_shrimp profile image
mystic_shrimp

Hi... I too was sent an email yesterday, informing me of the very same thing. It's nice to know we're being thought about.

beetle profile image
beetle

I received a letter yesterday too.

Wychwoodbabe profile image
Wychwoodbabe

After reading these entries I checked my junk folder and mine had gone in there yesterday. So maybe check yours too? Most impressed by it all. Thank you NHS.

Hope everyone gets better and keeps safe. Merry Christmas and a Happy Healthy New Year. Xx

wormwood profile image
wormwood

Yes, got mine....

Cja1956 profile image
Cja1956

That’s amazing! As ET guy said, that would never happen in the US. My sister was exposed to Covid last week. Yesterday she stood for an hour in a long line to get the test. My friend tested positive for Covid on Saturday and tried to get the monoclonal antibodies. The only way he was able to get it was because his son is friends with a medical director of a hospital. Things have gotten crazy here again.

Foss33 profile image
Foss33

I wasn’t ever out in shielding list etc but have received this email yesterday, so echo what others are saying, system seems to be working now. Email was in my junk folder so worth checking in there if you haven’t received.

Take care and best wishes everyone x

netty64 profile image
netty64

I have jak2 ET but have never received any letters at regarding anything to do with covid.

netty64 profile image
netty64

And ordered my own test kit via NHS

piggie50 profile image
piggie50 in reply to netty64

I haven’t received a letter and didn’t satisfy the criteria on the NHS site? Can I ask how you managed to get one?

netty64 profile image
netty64 in reply to piggie50

I think I just ordered one from the nhs website but it was a while ago so not absolutely sure x

130396 profile image
130396

Have you got a contact number as I should have received either an email or a letter as I was identified as someone who was CEV and told to shield last year but I’ve received nothing yet about being sent a PCR to keep on hand at home or the details of treatment if positive test results TIA

azaelea profile image
azaelea in reply to 130396

Sorry, I don’t have a contact number. I have received shielding letters throughout the pandemic from the NHS when I was identified as vulnerable. I have ET and on Hydroxy and Clopidogerel. This recent email came from NHS. Perhaps you could contact them.

130396 profile image
130396 in reply to azaelea

Do you have email address for them or contact number?I had to shield the whole time as I got letters telling me to but I obviously haven’t kept them

azaelea profile image
azaelea in reply to 130396

Sorry, it’s just the NHS website. I also got letters telling me to shield, like you did so I think you will be receiving this letter about PCR test for us to keep at home. Sorry I don’t know an email address for them. There should be a phone number on their website. Best wishes.

Mostew profile image
Mostew

Good to hear . Will be a comfort 5o know you have it to hand ..Warm wishes to you for the New Year

Carolyn

azaelea profile image
azaelea in reply to Mostew

Happy Christmas wishes to you too Carolyn

Bluetop profile image
Bluetop

That seems to me impressive -and that's before you even get Covid. Good news! Thanks for postin.

NewBloom profile image
NewBloom

Thanks for posting. I wasn't aware of PCR test emails and kits. I haven't received an email but was placed on the sheilding list as it ended. Maybe It'll arrive soon.

LadyAbash profile image
LadyAbash

Seasons greetings,

I received my PCR package before Christmas but had nothing explaining what it was about. It scared the living daylights out of me, thinking I had been in contact unknowingly with someone with Covid. I racked my brain wondering when or where this could have happened since there were only a few places I visit but have no direct contact with anyone. After searching the Internet, finding no real information, I eventually found the email explaining everything. I breathed a sigh of relief knowing that the package is for 'just in case'.

I am glad that our MPNs have not been forgotten but I'm not too keen on having yet more new drugs in my body, simply because I hate taking medications! I remember putting my haematology consultant under my 'interrogation lamp'😂 when he told me I would have to inject Pegasys for ET when I was first diagnosed. It still makes me laugh when I think about it.

Anyway, I wish everybody a happy, healthy, safe and covid-free New Year with your families🥳🍾🥂

All the best!

LadyAbash

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