Post by MPN-MATE Admin » Fri Jul 10, 2020 10:17 am
Morning all...
Here is some encouraging news for those of us w/ compromised immune systems, who might also fall victim to CV-19.
This small study shows that if we are generally in good health otherwise, we should overcome CV-19 w/out too many issues...
However, those of us who are older than 70+ and generally in poorer health will need to take greater precautions, as that is when and where CV-19 poses the greatest risk, according to this article...
Stay safe & well guys...
Best wishes
Steve
JUNE 2, 2020
Impact of COVID-19 infection in blood cancer patients
Thanks Steve - always encouraging- though my bigger fear for us (MPNers) as well as the general population is the lasting long term effects of COVID-19. Studies from SARS1 show permanent lung damage - this virus impacts the heart and intestines too - possibly the blood as well. Even asymptotic spreaders have some noticeable inflammation on their lungs in one Chinese study. Goes without saying, but better to avoid it altogether if you can!
Thanks for posting this. As I’m nearly 71 with advanced Post ET MF and pancytopenia I don’t think I will be dancing in the streets just yet (unlike my son who has just cashed in on stamp duty relief!). I am however sticking my big toe in the water with an outdoor meeting with my young grandchildren next month. 😃
I live in Perth so just across the desert from you. Very pleased to read this and also your recent post about exercise. I am going to commit to more! Cheers, E
I thought my experience might help a little bit. I am in my late 30's and was diagnosed with ET this Feb but have had raised platelets for more than a year now. I am only on Aspirin atm with platelets ranging between 650-780. I also suffer from asthma and take a low dose of a steroid inhaler.
I had a routine antigen Covid test (the swab) done last week prior to attending the hospital for an appointment. To my surprise it came back positive despite me having no recognizable symptoms whatsoever. I have been fine since and looking back the only possible symptoms I had were a couple of episodes of face flushing that I blamed on my ET anyway. My temperature never went above 36 degrees Celsius.
Having said that, back in January I had most of the Covid19 symptoms and had severe difficulties breathing (but with normal oxygen levels when checked). All the other tests (scans, chest xrays, respiratory tests etc, ultrasound) came back within normal range and I was eventually diagnosed with chest infection, then another chest infection and then finally asthma. Nobody knew much about Covid at that time so they blamed everything on ET while my hematologist dismissed this theory. I even ended up seeing a private hematologist for a second opinion and even he thought it could've been 'the stickiness' of my blood.
Sometime mid-March, after a short course of Prednisolone, my breathing improved massively and the inhalers started working better. From a maximum allowed daily dose I am now on only 1-2puffs/day and feeling much better. There are days when I don't need my inhaler at all.
I will never know if I had Covid in January because I haven't had an antibody test done between Jan and my new antigen test. But the recent test showed that clearly I was having it last week with no symptoms whatsoever. I am still self-isolating and looking forward to my next test
Very interesting post which I've only just read ... Did any of the medical people suggest that you might have had CoViD19 in January 2020 and then had it again more recently, with almost no symptoms because you had already developed some immunity?
Also interesting that Prednisolone was helpful for you ... you may already be aware that, a few weeks back, there was a report that Dexamethasone (another steroidal anti-inflammatory drug) was found to increase the survival chances of the most seriously ill CoViD19 patients (at that time I think it was the only drug to have achieved this).
I am fine, thank you, and haven't had any Covid symptoms since. I actually had the antibody test done today and can't wait to get the result.
No, none of the doctors ever made any connection between Covid and my symptoms. But this was my theory as well, that I had it at the beginning of the year and developed some sort of immunity. Maybe I am wrong, I don't know, maybe it was just the ET but I somehow doubt it...
I had never been so ill in my whole life like I was between January-March. The symptoms progressed from one to the other over a course of 4-5 months. Initially I had difficulties breathing, then extreme dizziness, vertigo, tinnitus, muscle pain, extreme exhaustion (going upstairs was quite the task!), generalized weakness, occasional shivers, generalised anxiety, weight loss, hazy cognition, forgetfulness, decreased peripheral vision, hot flushes and ended with severe cough that was blamed on my asthma.
Back in January and February, when I suffered the most, nobody was even contemplating the idea that Covid19 could be around. I work in a medical environment myself and at the end of Dec 2019 and all throughout January almost 70% of the people who attended had some sort of 'chest infection' that was getting better before returning and getting worse. So when I woke up one cold day of Jan. with pressure on my chest I happily called the GP telling them I had a chest infection and needed antibiotics. I then ended up at A&E twice over the next few weeks because I couldn't breathe and I was so unwell. It felt like a giant was sitting on my chest and I couldn't expand my rib cage, I kept gasping for air and yawning. I would get a maximum of 10 normal breaths throughout the day and I was better when sleeping. My whole rib cage was hurting from the respiratory effort and I was lifting my shoulders with each breath to get some space for the air.
As I mentioned above all the tests were fine, I wasn't wheezing and the rescue inhaler (Ventolin) wasn't helping at all. Because of this all the doctors dismissed me pretty quickly blaming it on ET or even suggesting that it was anxiety related.
It was only the respiratory consultant who believed me (and said that the tests could be normal as my body is fairly young and it is 'compensating') and the asthma nurse who prescribed the Prednisolone mid-March when I was coughing so badly that I couldn't even finish a sentence. To this day the only thing that eases the pressure on my chest is the steroid asthma inhaler but I no longer need it that often. Not sure where that inflammation was coming from (Covid, asthma, ET, GERD etc etc) but the steroids massively helped me.
Please accept my most profuse apology for not having replied earlier to your first Post... I can and do often become preoccupied w/ all of my chores down here in the wonderful world of Oz...
As you say, this quite an interesting experience that you have been through, & over a few levels really...
Personally, I have long wondered about how MPNers might recognise potential CV–19 Symptoms, when so many of ours are all to similar to those presenting w/ CV-19 etc...
You latest Test results, obviously will be of great interest too...
I really do hope that they are 'Negative' of course, and it would be really interesting to learn if you have developed many antigens through your ordeal etc?
Sounds quite a frightening experience that you have been through, and I do hope that you have some great resources, and people around you, especially knowing that you come from a health working background etc.
Unfortunately, and as most of know, it is of course not unusual for MPN patients to have been dismissed by their doctors, and I really hope that you have managed to find a more competent GP to help you on your CV-19 journey too ...
Please do keep us all in the 'Loop' as to what transpires Ina27...
Please don't apologise, I wasn't expecting a reply. I am sharing my experience hoping that it would ease somebody else's journey who might be going through similar things. I found comfort in the information shared on this site when I was poorly and I just want to give something back if I can.
Because of my medical background I actually understood the doctors when they couldn't make sense of my symptoms. I was surprised myself to see how poorly I felt but everything seemed to be alright on the paper. So I started a detective approach and eliminated one by one the potential causes. The fact that the symptoms kept changing from one to the other with the only constant being my struggle to breathe made it even more difficult to understand.
This is how I approached my problem- the difficulties breathing could have been caused by:
- chest infection (so I was treated twice with antibiotics which helped a little bit but was only temporary relief)
- Covid19. We still don't know enough about this so it's mainly suppositions
- ET (the hematologist dismissed this but even if it was because of my ET she wasn't planning to give me any other treatment apart from Aspirin so at some point I thought that maybe I had to live like this but I fully understood her decision)
- lung damage due to infection or maybe a tumour (I had 2 chest xrays and also a mammography to check for breast cancer, everything clear)
- pulmonary embolism (I had a CTPA which was also clear)
- asthma (but I wasn't wheezing, the oxygen levels weren't dropping, the Peakflow readings were constant and the respiratory tests within normal limits). First lot of inhalers didn't help but later I realised (and was told) that with asthma is trial and error, one really needs to persevere, and a course of steroids usually makes a huge difference as it opens up the airways allowing the inhaler to penetrate and start working. Also asthma is usually worse at night time, my breathing was actually better when lying down
- GERD. I had a history of acid reflux but I didn't make the connection until very late, when I realised that my breathing was worse after a meal, when driving and when sitting in a certain position. This was towards the end though when my symptoms changed further and became clearer
- hepatomegaly and splenomegaly (had an ultrasound scan and that was normal too)
- heart condition (heart scan normal, ECG normal). With a heart condition the breathing is worse with effort. After the first couple of months my breathing was actually improving after 15-20 min of mild to moderate effort if I could get through the first few minutes
- anxiety. I was given Sertraline to try and after one tablet only I thought that I was having a stroke. I woke up in the middle of the night all sweaty and shaking, agitated, panicky, with burning scalp. I lost my appetite and had diarrhea for 3 days. I never touched those tablets again and that was the Eureka moment for me when I decided not to experiment with more tablets
I've learned from here about the inflammation associated with ET (still learning though lol). Asthma, GERD, ET are all inflammatory processes and like hunter5582 mentioned in a few posts everything is connected in the body so it is almost impossible to separate one condition and only treat that. Maybe what I initially had was Covid and it all went downhill from there, maybe it wasn't... I will never know for sure. I will update here when I get the antibody result.
I am usually a workaholic so the lockdown helped with my recovery in a way. I learned how to slow down, listen to my body, rest, relax. I had a healthy diet before anyway but now I've become even more strict, eating more often, smaller quantities, drinking more water, going for a long walk 4-5 times/week. Eventually I managed to build up strength and ride my bike on short distances too. I worked on building up my confidence because my house became my safe haven and I was worried about driving outside of the area. I am back working part time now and I feel 95% like my old self. I am waiting to see if or how my ET progresses but I am clearly more confident now than how I was a few months ago.
Sorry, another long post, I need to stop before I am boring everyone 😉
Great that you have the medical background that you do so that you were able to approach everything as logically and rationally as possible... Well done by the way...
Yes, please do let us know your results when available...
And keep riding that bike and taking care of your diet...
By the way, not everyone's ET has to progress... Many just live to a normal longevity w/ the ET as an extra passenger etc...
Hi, I've had the Covid19 antibody result back and it is NEGATIVE 😲
Just a short summary for people who didn't follow previous posts:
- I had most of the Covid19 symptoms between January-March 2020 but I wasn't tested for it. At that time not much was known about it and it wasn't routinely tested in the UK (where I live)
- A routine antigen test found me positive for Covid19 at the beginning of July 2020 despite not having symptoms
- An antibody test done this week has just returned negative
I can only think of 2 logical options: I either never had it or the tests are not reliable.
Well firstly, I am very glad that you appear to be CV–19 Negative, congrat's.
In answer to your question, it is really hard to know anything w/ complete certitude...
And especially so given that the symptom burden that is reported for CV–19, has so much in common w/ MPNs that at times it would be difficult to separate them w/out some medical intervention, in my view...
Fingers crossed...
However, there is little doubt Ina that people working in your capacity, (health worker / nursing etc), are at the greatest risk of contracting CV–19, and as there is no vaccine as yet, none of us are quite 'out of the woods' ...
Hence, please remain ultra cautious while your are out riding your bike, and going about your daily chores etc.
Remember Ina, there is a 'New Normal' today, and all of us are only just beginning to realise how and what those ramifications might mean...
Your post is not boring at all! I wish some of the more dismissive and ignorant members of the medical profession would spend a little time reading what MPN patients have to say on this forum - they would learn much. The stories told by real patients are a vital resource in relation to rare illnesses, where doctors may genuinely lack relevant experience.
I agree with you that inflammation is key. I am not a (medical) doctor but I would guess from what you say that the infection you suffered early in 2020 (whether CoViD19 or not - though it sounds very like CoViD19) may have triggered a "cytokine storm", leading to a cascade of inflammatory processes and corresponding symptoms; this situation would have been complicated by the fact that you have ET.
Naturally, I'll be interested to learn the outcome of your CoViD19 antibody test ...
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