Was wondering if any others have experienced a Paxlovid rebound infection? My sister who has Chronic lymphocytic leukaemia (CLL) took a 5 day course of Paxlovid and recovered from COVID really quickly after feeling really poorly. She tested negative for 5 days after ending treatment but on day 6 felt like she had a cold and tested positive again. Has anyone else had this happen?
1 Like
Hi @Helen454 this is not something I have heard about, but I hope others will be able to share their experiences.
I will also copy your post to @GemmaBloodCancerUK and @LauranBloodCancerUK the blood Cancer UK nurse advisors as it might be of interest to them.
You and your sister look after and be kind to yourselves, especially as the after effects of Covid can be nasty and lingering.
Thanks Erica - I saw one other post on the forum with the same thing. The CDC in America have issued guidelines but the UK do not appear to have anything in place or to be actively monitoring
2 Likes
Hi @Helen454. I can see you’ve already read about my experience on my other post. I’ve heard of quite a few cases. Watch this space to see if they find out more x
2 Likes
Thanks Nichola - it would be good to hear other people’s experiences!
2 Likes
HI @Helen454,
Thanks for your question & I’m sorry your sister is feeling poorly again. We have actually been discussing this of late. As you have rightly highlighted other countries have reported incidents of this and as of yet we are not aware of any clear UK guidance but we understand it is being monitored.
May i ask how your sister is feeling today? Has she been able to alert the CMDU Team or indeed her GP of this?
She can also highlight these symptoms via the yellow card system- Yellow Card | Making medicines and medical devices safer (mhra.gov.uk).
Also in case it is useful to you we were made aware of this report-
HAN Archive - 00467 | Health Alert Network (HAN) (cdc.gov)
Additionally if your sister gives consent to do so- please can she send in us her own details as our contacts are keen to feedback any specific case studies of suspected paxlovid rebound in order for us to monitor the situation.
Details required are NHS no if possible, name, contact details, stage of Chronic lymphocytic leukaemia (CLL), and health board region. She can send this in FAO of myself at support@bloodcancer.org.uk.
Take Care, Lauran
2 Likes
Hi Lauren
I had this in April, I tested positive for COVID and within 48hours I had received Paxlovid. After the five day course I felt fine and tested negative. 6 days after finishing Paxlovid I felt poorly again and tested positive again. Unfortunately this was over the Easter weekend and I was also on holiday under a different health authority and had an absolute nightmare with 111, trying to get any help or information. By the time I managed to speak to my gp I was on day 5 so didn’t receive any further treatment but luckily I wasn’t too poorly with it. I did enter my details via the yellow card, but really would have appreciated more help and understanding from 111. I did do some research and found an American report on rebound which did help me. As I was only diagnosed with Chronic lymphocytic leukaemia (CLL) in March this year it was a very scary time for both me and my husband.
3 Likes
Hi @Hilaryb a great big welcome and thanks so much for letting us know your Covid saga.
It must have been so, so scary for you and your husband with you having only been diagnosed with Chronic lymphocytic leukaemia (CLL) a few weeks before. I would have still been in shock from the Chronic lymphocytic leukaemia (CLL) diagnosis.
In the middle of feeling rough and then having an absolute nightmare with 111.
If you ever feel you would like to talk to someone the Blood Cancer UK support line is there for you and you are now part of our forum to.
I look forward to hearing more about you and look after yourselves
Hi @Hilaryb, I’m so sorry to hear about your experience, that must be have been so tough. I’d just like to echo what Erica has said and welcome you to the forum. It sounds as though your diagnosis was not very long ago at all, may I ask how you’re coping with it? We have a booklet for those that have been newly diagnosed with blood cancer- in case it’s useful for you, you can download or order it here: Your blood cancer diagnosis: what happens now? We do appreciate that a new diagnosis can be a lot to process. If you’d like to talk about it at all, please do give our Support Team a call on 0808 2080 888, we’d be happy to talk things through with you. Best wishes, Tanya.
1 Like
Hi Helen454, I was prescribed Paxlovid from my hospital and was advised at the time that within a 5-7 day window after taking it, I could get a chest infection and if I did, I was to contact my gp and make sure I got antibiotics.
Luckily, I didn’t but as I say I was told it could happen. Stupidly, I never asked why this might happen, I was just grateful for the Paxlovid. Hope all is well now. Xxx
3 Likes