Brief History: I am currently being treated for relapsed CLL. A year into a 2 year course of Venetoclax and already had 6 months of Rituximab. Bloods are all fine and within normal ranges as the CLL responded well and very quickly at the start of treatment and I achieved (treatment induced) remission within a month after ramp up of V and after 1 session of R - from a Lymph count of over 250.
Treatment has been going reasonably well over the year. I have had spells of nausea from the Venetoclax and various other drugs taken for a Heart attack 2 years ago. I have also had a couple of trips to hospital due a temp spike, which was precautionary. Apart from that, been chugging along, doing exercise, but being quite careful with regards to COVID.
Unfortunately, due to a wild weekend where I went to a friend’s 60th party and an open air Rugby match I tested positive for Covid on 29th March 23 . My symptoms have been reasonably mild to moderate, suffering from a bad head cold and blocked sinuses and an upper chesty cough (probably due to post nasal drip). I was supplied with Molnupiravir within 24 hours of contacting the distribution centre and informed my Haematology department. Within the first week my symptoms remained mild, but I spiked a temperature of 38.5, which led to a 2 night stay in hospital (precautionary). After 6 days my LFT tests started getting feinter and I thought I was over the worst of it. Unfortunately, 2 days days after finishing the 5 day course of Antivirals, the red line on the LFT bounced back to bold red and has remained so ever since. It is now day 21. I have had blood tests at Haematology and apart from a couple of days where my Neuts dropped below 1.5 my bloods are fine (Neuts back up to >2.5).
This is more frustrating than anything else as I am still coughing up and blowing out copious amounts of green mucus and my symptoms have remained the same. I suppose I should feel somewhat reassured that it hasn’t progressed into anything worse, but I can’t help worrying that it may well do, even after 3 weeks - especially if Inwere to be unlucky enough to catch something else. My Haematology department haven’t really been much help with advice, except for telling me that I am not eligible for any more antiviral treatment. I am now even thinking about seeking advice about stopping my Venetoclax short term so that I can scramble back some immunity to fight this off before resuming again.
I have had plenty of coughs and colds that have lasted for weeks before now and if I wasn’t testing positive on that LFT every day, I probably wouldn’t think too much of it and just try and ride it out, but it is covid and it has been at the forefront of my fears for so long, it is adding that extra layer of anxiety to my frustration and worry.
Has anyone else had this drag on for so long?
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Rich316
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I can't personally answer your question ("Has anyone else had this drag on for so long?") because I got my first COVID symptoms just 3 days ago and tested positive today. (It had been 5 months since my last booster and the wouldn't give me anymore...
I do recall that some few CLL patient didn't clear the infection for over a year as their original strain mutated into the same variants that were later found globally.
The Dutch don't do anything special for CLL patients in The Netherlands with COVID ,and I've been instructed not to call unless I spike a fever or my blood oxygen goes below 95% of saturation. Furthermore, paxlovid is not even an option here (as the socialized medicine didn't find the cost/benefit ratio compelling)! I've heard early paxlovid treatment often results in a 2nd bounceback of antigen titers after thinking you were all one. Is that phenomenon experienced with Molnupiravir too? I don't know.
My sense is that the current strains cause relatively milder disease, so I'm hoping that my compromised immune system can eliminate this bugger from my body in short order. I too, am interested in what is happening with others on this site who are catching COVID now, so I'll see who else writes and go back and search recent archives.
I had read that Molnupiravir (as well as Paxlovid) can cause rebound infection. That wouldn’t surprise me as it hasn’t cleared the infection after I had finished the dose. I have also read that Molnupiravir efficacy is also not as good as Paxlovid (although they are now both in doubt with the new variants), but I was unable to have Pax due to interactions with Venetoclax.
It surprises me that the Dutch Government don’t supply more antivirals for immune compromised patients with COVID (or, that your vaccination booster program isn’t still running). I always figured as a country you were far more caring and civilised than our lot in the UK.
We’re you given Evusheld when it was authorised across Europe last year?
I hope you have mild symptoms (if any) and you clear it quickly. What is your CLL status at the moment? It will be interesting to see if you can clear it quicker with no antivirals as I don’t think they did much good at all. Keep in touch.
My markers were good at diagnosis 4 years (13Q mutated), and I've been on watch and wait with steadily increasing ALC. My doctor says my CLL disease is progressing, but I'm not sick. ..no CLL symptoms.
I had vaccine shots every 3-4 months since March 2021 , but the first 2 were in USA because the Dutch got off to a slow start, and luckily, I had near normal anti-spike titers 3 weeks after my first shot (via LLS clinical study). But now it has been about 5 months since my last bivalent booster and I couldn't get another despite asking....I think I could now...if my specialist would request it, but I only get to see him 1x per year. My symptoms are chills (but no fever), fatigue, body aches (literally coming from my bones), headache, sore throat, congestion & runny nose, diarrhea and some stomach aches...all rather minor. I'm supposed to call my house doctor if I spike a fever or my blood oxygen drops below 95% of saturation...my finger monitor often reads 94ish so I think I'll wait to call in it reaches 91...
I'm hoping to clear it quickly and you get your done with too...fingers crossed. (I read on this site that testing positive for weeks is not uncommon.)
please be careful of that Oxygen saturation level, especially if you are having difficulty breathing. If they say call it in at 95% then I would recommend doing that. Hopefully it goes up again if you take a few deep breaths?
I will keep you updated, but it was interesting what you said about others reporting long term positives.
Take care and be a pain in the arse to the doctors if you have to. That’s what they are there for.
Better now that my chills & bobyaches gone. Thx for asking. Persistent unusual feeling in trachea/bronchus area I’ve not had in any prior infection that is accompanied with mild, largely unproductive cough. Woke up with a bad headache. Just quarantining in bed, but feel like I should try and get things moving with some exercise until I read this: time.com/6215346/covid-19-r.... , which scared me off of trying anything aerobic. How are you feeling today?
That is interesting. I will definitely stay away from the gym then , until I am 100%.
I am not too bad thanks. Still very bunged up in sinuses and a productive cough. I too have that strange irritation feeling in my Bronchial area, along with a sore throat, which I have put down to post nasal drip. Generally feel okay during the day, but worse at night when tired. Still banging out positive tests as well. Will give ot a few more days then enquire about coming off Venetoclax.
Stay safe and - as it’s official - plenty of rest.
I am currently in the same boat as you. I tested positive on 3/26/23 started Paxlovid on 3/27 for five days. I am on Venclexta so my dose of V was reduced to 100 ml per day. I tested negative the following Saturday. I never had any real symptoms a few chills the day I tested positive. I thought I was over it went back to work , then 7 days after last dose of plaxovid tested positive again. I have a stuffy nose. I am on day 8 since second positive. My hem/onc took me completely off Venclexta for two weeks to help with immunity. I think I'm done testing.
Thanks for your reply. It is very interesting that you were V reduced so that you could take Paxlovid AND you have been taken off V altogether for 2 weeks to boost your immunity. I have read this has been the case in some instances and will write to my Haematology team to ask if this is appropriate for me.
I wish you a speedy recovery as well. I thought it was weird they pulled my V for the rebound COVID also. Butit seems to be working, I never really got any symptoms. I'm back to work and feel fine. They said you can test positive for a long time with rebound COVID so if you feel good and it's past the 10 days continue on with life.
I tested positive for around three and a half weeks on the LFT (can’t remember exactly now) after taking Paxlovid (tested negative on around day 4 but it came straight back). It petered out at slowly, the line getting fainter. I stopped testing in the end as it was so frustrating. I didn’t feel unwell, however, after taking the Paxlovid. A bit of a cold for a couple of weeks, yes, but mostly fine. There’s some argument if the anti-viral doesn’t clear it all out, it can linger for a long time, and with our immunity system, longer than for most. If you feel you’re getting better, not worse, I’m sure it will be on its way out.
Thanks, that seems to be where I am at, with the exception of a sinus cold and chesty cough - which is producing a lot of gunk. I suppose my main worry is secondary infections letting COVID take hold again, especially now pollen season is upon us and more gunk to come. My LFT’s are getting fainter and taking longer to register as positive , so hopefully it is on its way out.
I tested positive on the 26 December last year. I was able to receive Paxlovid within a few hours. I tested negative following the dose, but tested positive again 7 days latter. I then continued to test positive for 12 weeks.
Yes the 12 weeks was frustrating, there was nothing that could be done to resolve. I had no major symptoms, however I had a productive cough, and STILL have.
Have you ruled out a secondary bacterial infection if you are coughing up green stuff? I just came out of a 14 week chest infection with 14 days of Covid on top. Antibiotics were the most useful thing in my case.
Yes had about 3 courses of Antibiotics and chest Xray. The cough is mainly productive and yellowish first thing in the morning, then turns clear for the rest of the day. I suspect it's viral, I also suspect that I still have COVID fragments even 4 months later, so a PCR test would show positive.
If you don’t mind me asking, are you currently in treatment? I am thinking maybe asking if I can stop taking Venetoclax for a couple of weeks to see if my immune system can recover enough to see it off.
One other thought. Do you think, or have you been informed, that such long exposure to Covid has in some way protected you from serious COVID in the near future?
Rich316. I am currently on Ibrutnib which I didn't stop whilst I had Covid. My own assumption is that now that I have had Covid I might have antibodies which will help me in the future.
I don’t think it is a secondary bacterial infection at the moment. Was in hospital for a couple of nights on first week of Covid because of a temp spike. Was given Tazocin whilst in and two courses of Amoxiclav since I have been out. The green stuff has remained pretty constant throughout. Was reading on a couple of reputable websites that green/yellow mucus is just as likely to be viral as well as bacterial and is the dead white cells and virus that have been in battle and the body is getting rid. In which case it is like world war 3 inside me at the moment.
Some researchers have questioned whether "Paxlovid rebound" is nothing more than an urban myth, since in systematic studies similar rates of rebound of Covid symptoms occurred in patients treated with Paxlovid or Molnupiravir and patients untreated cidrap.umn.edu/covid-19/cov...
Many case reports have shown that the Covid infection can dwell much longer in immunocompromised individuals, the longest recorded being well over a year.
I myself have had two viral infections in the past year, each of which took roughly 4 times the usual time to clear. Fortunately the symptoms were no worse than anyone else's. Hopefully it will go that way for you.
Thank you for bringing this report to our attention.
The data presented found that "rebound" occurred within the whole grouping of hospitalized persons in about 1 out of every 20 cases. While "rebound" occurred in about 1 in 10 of "immunocompromised" patients (defined as those persons with primary immunodeficiency or on active immunosuppressive treatment at baseline or in the past 12 months) I like those odds!
I personally will stop Ven and take 10 day course of paxlovid if I test positive. Of course stopping Ven is a must with Paxlovid due to interactions, but even if it were not I would stop it.
Fortunately I’m a doc and have been able to get the paxlovid
Pres Biden and Dr Faucci and a fair number of personal friends with normal immune systems took a second round of Paxlovid and they had no trouble getting it
I know a lot of CLL folks who had to stop Ven to clear infection
Thanks for your reply. I guess the question is, What are the dangers of stopping Venetoclax for a short period of time? Will the interruption affect the CLL response to it (build in a resistance etc)? And how long does it take for the body to regain any immune response after cessation?
I have already been told that I cannot have another anti-viral treatment on the NHS for the same infection and I don’t think there is access to it privately in the UK. The rule is also that they have to be started within 5 days of symptoms starting and it is now day 25 (is that is a clinical or political decision?).
I would like to try and ride it out to possibly build up some sort of immune response, or at least get my body used to it in case of re infection, but I am concerned the symptoms could take a turn for the worse ( even after 25 days) and I am not really sure if it works that way, anyway.
Resistance is considered to take months to develop, not a few weeks. If you need to make some proteins/mast cells/macrophages/neutrophils to fight off an infection successfully, that's probably a bigger health concern than a possible resistance a year later. Stopping the CLL therapy when needing treatment isn't ideal, but getting rid of the infection is a higher priority.
Are you still testing positive on LFT after 30 days? I'm LFT positive on day 12 with only two mild symptoms lingering on (bronchial cough and fatigue). I've been reading about long covid, which is kinds unsettling... fredhutch.org/en/news/cente...
can’t believe I just typed out a long response and forgot to post it. Must have been telling me something.
Yes still testing positive. Posi line has been getting fainter over the last week and a bit and takes longer to show up (5 mins sometimes). I have even had the odd negative test, only to show up positive again the next day 😩. I am starting to take it personally.
Still got symptoms of copious amounts of green mucus from sinuses and upper chest (poss post nasal drip) and not had much sleep. A Newish symptom is sore throat from coughing lots, which also makes it more painful and I am generally feeling tired.
Went to Haem Clinic today and had bloods, sputum and PCR test done (I am Neutropenic again at 1.2, so have to inject GCSF into my stomach twice a week to build up Neuts). Also been told to stop Venetoclax for a week to try and help immunity. Apart from that, I am right as ninepence.
Whinge over!
It’s good your symptoms are mild. Are your LFTs fading at all? Hopefully, you are clearing it out of your system.
Green mucus usually indicates one is fighting off a bacterial infection from the sinusutis if not a continuing viral infection. So it's probably not a simple post nasal drip, those are generally clear or white.. And is possibly one of the symptoms that made your doc decide to hold the Ven.
thanks for the reply. Yes, although I have had 3 days of Tazocin and two courses of Amoxiclav since day 3 of testing positive, the Registrar did say that there may be another secondary infection . I have just started a 7 day course of Doxycycline to see if that will make a difference.
Some of us need extended courses of the same antibiotic for a single infection. We take longer to clear things. I recall a few people here saying whenever they are prescribed a Zpack, they get 2.
never heard of a zpac before - will Google that. Well they took swabs and sputum today so, hopefully, will get to the bottom of it. I felt as if I was being a bit of a fraud asking for more help from my Haem team, as GP’s are not easy to get hold of , but glad I did know as I found out my Neuts were down again and there was some GCSF in my fridge itching to be used.
Sorry for using medical slang. "Zithromax Z-pak" is a short term course of azithromycin, sold in treatment blister packs instead of loose tablets in a prescription bottle. "Z-pack" is slang for it.
Sorry, I was really hoping it had passed for you by now! For me, my LTF Faded a couple days ago, but still the same today. I don't want to infect my wife or kids, and virtually everyone says a positive LTF = infectious...makes sense as that's a lot of viral particles on one little swab. Well, may we both be negative tomorrow! I can't imagine your PCR test could be negative, but maybe the bloods or sputum might show a secondary infection. Good they're trying something new to get you over this by stopping V. Speedy recovery!
with regards to positive= infectious I have read so many conflicting reports on that so I don’t know. I would certainly think that symptoms could = infectious, but again not sure.
Hey, How are you doing? Are you negative yet? Day 37 for me and just got my first negative LFT. I was so shocked I did two more during the day and both came back negative so, May the 4th be with me!
Mind you, I must have been given a litre of Immunoglobulin infusion and a course of Paxlovid on Tuesday, so that may have something to do with it. What with the 3 courses of Antibiotics, there can’t be anything on a cellular level living inside of me- got to start thinking about pro-biotics.
Are you still isolating from the family, or has it passed now? Let me know you’re okay.
Glad to hear your testing finally negative! What an ordeal you've been thru these 37 days. I finally tested negative after (just) 2 weeks of being largely bedridden. Happily, I've getting a bit more active each of the last 5 days. I was surprised with the amount of residual brain fog...feels like I have the worst case of jet-lag plus the worst hangover plus tinnitus. However, each day is getting better and my lingering cough and nasal drip is almost gone completely.
I might be overly cavalier, but I walked into grocery store for the first time in 3 years without a mask today. I figure my immune system has just completely (knock on wood) vanquished an omicron infection and I can't be infected again for at least a few weeks. Also, the number of respiratory infections of all types has plummeted here recently. But masking is really not a big deal for me, so I'll continue...today was just a one-off.
Good news! Sounds like you had the roughest ride so It’s great news you are out the other side and getting stronger each day. I know what you mean about figuring you are resistant for a few weeks. I feel that while I am on Paxlovid and testing negative, I must have some resistance, so we went for a cheeky meal last night in a local restaurant. Quiet and airy, but still felt naughty -and good!
i suppose the next question is, now that someone has been through what they have avoided and dreaded for over 3 years and come out the other side, should their attitude to shielding change? One has got to live!
depending on your immune system, it is very very possible you have zero protection from your recent covid infection. Additionally, you could catch covid again when exposed to it.
I don’t know if this is helpful but I’m on week 2, nearly 3 of a head cold, running nose, productive cough (clear and green earlier), ears full (balance off at times), sore throat comes and goes (postnatal drip) and I DON’T have COVID. 🤷🏻♀️ Just something to think about perhaps. PS. I’m outdoors nearly all day for an early morning walk (mowing going on and trees blooming)and allergens are high right now and air quality lower than normal.
I just came down with what I thought was a cold, as my daughter has it - she is coughing, sneezing, complaining of headaches etc. But what I have feels much more like hayfever. Neither of us have Covid.
I'm slightly anxious about this as I had autoimmune neutropenia not so long ago. Very much hoping my body is not gearing up for another episode of that.
Yes, I think you are on to something. I have also been mindful of the V High tree pollen count going on in S. Wales at the moment and I really think it has played a part with the amount of mucus on my chest and in my sinuses. Even now my COVID appears to be clearing I am still getting quite snotty and sneezy in the day when I go out and I get quite tight chested in the evening. I guess we have to be careful of creating a nice environment for germs. Get those antihistamines out.
I haven’t found one that doesn’t keep me up for days. 🙄. I get the opposite effect of most unfortunately. I’m using nasal spray (water and salt), Halls, and Tylenol if needed. I could stay in but refuse to give up my walks :).
An ENT told me 20 years ago to throw out all the “stuff” I was using and use warm water w a bit of salt. It’s pretty cheap at the store. It’s the size of eye drops with two ingredients. If I make my own I boil the water first.
I have not read all the comments. But when I had covid my zanubrutinib was stopped. Long story short, I had two sinus CT Scans, three courses of different antibiotics, oral steroids, multiple sinus sprays, sinus wash with steroids, and eventually sinus surgery. All because I have CLL with low immunoglobulins, and caught covid which led to a secondary complicated sinus infection.
If not done so already, my lay person advice would be get on some good antibiotics, get sinus wash with steroids, and get a good ENT MD.
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