Covid advice please : I finished treatment on... - CLL Support

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Covid advice please

Stavrou1 profile image
26 Replies

I finished treatment on 15th Nov this year😊. Since than been has been a struggle . I have had a urine infection which was treated with antibiotics. Haven't been rough a few days , by Monday got worse and chest . Had a emergency dr who prescribed antibiotics. . Yesterday i tested positive. Anouther rough night 🙄

Should I let my Dr know a, and do I need anti viral drug ! .

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Stavrou1 profile image
Stavrou1
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26 Replies
CaptRon1976 profile image
CaptRon1976

If you tested positive for covid and are immunocompromised ( which you are ) I would definately take an covid antiviral like Paxlovid which must begin within 5 days of testing positive ( the sooner, the better ).

Good luck in your recovery!

Stavrou1 profile image
Stavrou1 in reply toCaptRon1976

Thank you , thats really helpful and what I thought. I rang 111 the morning. Refered me to G.P . They have since called me , saying only the hospital can issue the covid antiviral. They have referred me to hospital, and Waiting for them to call me . . All so exhausting!.

Walkingtall62 profile image
Walkingtall62 in reply toStavrou1

It’s very exhausting but keep going. I thought it was 5 days after catching Covid rather than 5 days after testing. But get the antivirals if you can. Take care

Stavrou1 profile image
Stavrou1 in reply toWalkingtall62

Thank you so much. Rang 111 at 9am . Refered to GP . Spoke with them , referred me to the hospital . Still waiting , if I have not heard by 3.30 to call them back !!! . I can barely talk from coughing as irritates when talking🙄.

Walkingtall62 profile image
Walkingtall62

have you tried phoning/emailing your consultant/nurse? That was where I started

Stavrou1 profile image
Stavrou1 in reply toWalkingtall62

Thank you for you for your advice . . I rang and left a message with my cancer nurse , I haven't heard back!! . Waited till 3.30 and rang my GP again to let them know , I haven't been contacted . At 5.20 I received a message from them to say I am eligable . Not to contact them unless I haven't heard by 19th ... if to be given by 7th day .🤞

Walkingtall62 profile image
Walkingtall62 in reply toStavrou1

do you have an out of hours phone number for haematology

Stavrou1 profile image
Stavrou1 in reply toWalkingtall62

Thank you and so sorry I missed your message . 🙃. I do have a update . That the referral was done by GP and now the refferal is being reviewed by CMDU delivery unit and someone will contact me by certain date !!. . 🤞

Walkingtall62 profile image
Walkingtall62 in reply toStavrou1

Oh goodness. I pray they call before it is too late for antivirals

Downriver555 profile image
Downriver555

yes I just finished paxlovid after getting Covid last week. It cut my symptoms in half immediately. I am on day 6 of testing positive and feel pretty good other than fatigue. Get well

Stavrou1 profile image
Stavrou1 in reply toDownriver555

Thank you for your repky . That's really good to hear.😊 stay well. I was given antibiotics the day before i tested positive.. .. am assuming I carry on with them. Told 111.

JigFettler profile image
JigFettlerVolunteer

Ring 111. ASAP.

They will assess and guide you.

Jig

Walkingtall62 profile image
Walkingtall62 in reply toJigFettler

Hi I was told today that 119 is the Covid hotline. It’s mind boggling. I don’t think I have ever heard of 119. I haven’t called. Just looked up on line and it says it is to request a test to be sent

JigFettler profile image
JigFettlerVolunteer in reply toWalkingtall62

Indeed!

I am aware that Covid Medicine Delivery Services are to be given to the GP and Primary Care. (UK)

I rang 111 today to ask what is the set up in my neck of the woods.

It was not slick, response unclear, but if I get Covid, ring 111, or specialist hosp nurse or GP to access the antivirals. The

111 triage fella said if I actually had Covid, he would have put me thru to a Dr for further assessment pending accessing treatment.

I believe the service is patchy, as it moves to Primary Care

Jig

Stavrou1 profile image
Stavrou1 in reply toWalkingtall62

Every day is a school day . That good to know. I didn't know that . Like you just looked up . Thank you .😊

Stavrou1 profile image
Stavrou1 in reply toJigFettler

👍. Thank you . At least now will know for the future , but hurdle you have to through.! . At least now just a matter of waiting . Anouther sleepless night with coughing . And ulcers in my mouth ...

ornstin profile image
ornstin

The position seems such a muddle at the moment as, according to the Government website, the question of who (NHS 111, GP ,or hospital) is to be responsible for prescribing antivirals is decided locally (by who? I wonder,) That's a recipe for confusion and I dread getting Covid and having to ring NHS 111, GP etc each denying responsibility for antivirals. This indeed seems to have been your and others' experience. If I may do so, it seems poor decision in the first place to devolve the matter to a local level. (Perhaps to do with saving money?) I would suggest some national consistency/uniformity needs to be introduced urgently.Sorry the whole mess makes me rather angry!

Stavrou1 profile image
Stavrou1

Absoubtly agree . Even 111 told me they will be dispensing through my GP. And hanging phone on the phone 20-30 minutes to answer !! . Have not had a reply from cancer after leaving a message yesterda early afternoon!! .Had a gut full yesterday . Hardly slept last night , can't lay down from with fits and bouts. 🙄. Thank you .

Shedman profile image
Shedman

Your words to 111 are key to outcome (where they are unsure 🫤 )You need to call 111 and ask them to refer you to the Covid Medicine Delivery Unit ( CMDU )so you can discuss antiviral treatment.

That you are immune compromised, and made worse for months following cancer treatment

You should get a call back from CMDU within 24 hours to discuss.

I don't think a handover to primary care has occurred yet.

Thinking of you.

Do monitor your blood oxygen with pulse oximeter. Your temperature too.

Orangecat1 profile image
Orangecat1 in reply toShedman

I don’t suppose anyone there orders Ivermectin? It knocked my Covid out in 2.5 days and no side effects. I am in the US. I had my supply from Internet. I also take D- Mannose 1000 mg plus 400 cranberry twice a day. It prevents future Urinary Tract Infection.

Shedman profile image
Shedman in reply toOrangecat1

What led to your CLL diagnosis?Do you have symptoms?

What type of CLL do you have?

Are you an average CLLer, age about 70 at diagnosis?

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toOrangecat1

Orangecat, the use of a very good dewormer to help with COVID-19 has been debunked over and over again

healthunlocked.com/cllsuppo... by the best possible way of determining effectiveness, randomised control trials healthunlocked.com/cllsuppo...

It's great that you recovered quickly from your infection, but according to meta-analyses of all the ivermectin COVID-19 research, you would have recovered in the same time without taking ivermectin

Neil

Stavrou1 profile image
Stavrou1

Thank you Shedman for your advice ., my first phone call was 111 Itold them my situation , and that I am eligible. This person popped off to confirm I am . . they will do the referal to GP. . In the mean time I am still taking antibiotics from GP before testing positive !.

Shedman profile image
Shedman in reply toStavrou1

I read every word.

You need to draw 111 attention to CMDU:

Ask them ( tell them ) to refer you to CMDU

- Covid Medicine Delivery Unit

My understanding is that it is still CMDU that will assess you (quiz you over phone) and prescribe + deliver drugs.

I worry that you may have spoken with inexperienced 111 call handler.. did they talk about the CMDU?

Did they say that the CMDU no longer deal with CEV (clinically extremely vulnerable) patients positive for COVID?

Walkingtall62 profile image
Walkingtall62

Hi Stavrou. Any news? How are you?

Stavrou1 profile image
Stavrou1

Sorry i should of sent something yesterday. There was nothing to report . It got me know where!. I I rang 111 again . Than I had a call from commissioner. I had another conversations with G.P. practice . Didn't get me anywhere .. I have to wait I was told !. Someone will contact me. I had a gut full and another sleeplessness night!.The morning, i contacted the secretary direct, who sent the referal . Just received a message . I am on the list and will get triage call today with a consultant !. Will update when have when I have news. Thank you.

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