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Covid/Omicron Infection with MDS

Home Demo forums Patient Message Board Covid/Omicron Infection with MDS

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    Will Bennet

    Hi all,
    I’m quite concerned that all of the talk of Omicron being less virulent can only go so far with MDS patients. With that said, it’s spreading so fast that I assume a lot of MDS patients here and in general are finding themselves infected.

    Both anecdotally as well as with current data, do you have any sense just how terrified an MDS patient should be of getting infected with Omicron? If you haven’t had it yourself, have you read any studies or talked to your doctors about their experience with other patients getting infected?

    With it being so incredibly contagious, it feels like an MDS patient has little choice but to be stuck indefinitely in a cave again hoping for the wave to recede unless some good information can show that it isn’t THAT dangerous, even for those with MDS. Living in a cave in unsustainable for most so the more information the better to make informed decisions.

    Jack Rynecki

    Hi quite concerned,
    i too, as an MDS patient, am concerned. I think the the degree of worry is of course relative.
    I’m on “wait and see” and presently have mild neutropenia. I asked my Dr about travel to FL from NY an he was OK since i have the 3 shots. He recommended staying well masked (which i do with N95 plus a regular blue surgical as added protection).

    Will Bennet

    Hi Jack,
    Thanks for your reply. Has your doctor had much experience with other patients catching covid? There are now plenty of ‘experts’ on all sides that say that virtually everyone is going to meet this virus at some point. Maybe they are excluding those that are going to isolate every time there is an uptick in cases but even that is an imperfect approach.

    Of course, there is the other side of the coin that many people are going to want to take on more risk if the alternative is indefinite amounts of total or partial isolation. The problem I find is how hard it is to really get a grasp on how great the risk is for a vaccinated MDS patient at present. It would be hard to imagine a doctor not advising patients to be careful, but at the same time, the doctor is not there to give you advice on a balanced and happy life. It is critical to know if MDS patients are having dramatically worse outcomes with omicron cases than other older groups so it’d be great to hear others experience.

    If no one here has actually had MDS and covid, it would be great to press your doctors for any experience they have. Especially recent experience in the omicron wave. It may be anectodal, but it might also be all we’ve got.

    Peggy Grubbs

    I am 70 yrs old and have MDS, and am blood transfusion dependent. I have stopped all other treatments for the disease. I also have Vasculitis, an autoimmune disease. I had three doses of the Moderna vaccine because I’m immune compromised. I got COVID, most likely Delta, right before Thanksgiving. I went to a family funeral where there was little masking and no social distancing. My first symptom was a fever of 103.5 which took me to the ER. They gave me fluids and tested me for COVID. I received micro-clonal antibodies two days later and was just tired. We have to live our lives, but be careful. I’m thankful I was vaccinated to help mitigate the disease. I am also grateful that I was able to get the antibodies which I credit for keeping me out of the hospital.

    • This reply was modified 3 months, 3 weeks ago by Peggy Grubbs.

    I am 69 and diagnosed with MDS in June 2016. I’ve been on watch and wait since outset. My lone cytopenia is neutropenia. I run from severe to moderate neutropenia in monthly blood work. I’m vaxxed and boosted but still mask up in gatherings outside of my family or group of close personal friends. Before the omicron uptick I was living my life very close to my post MDS normal. The only real difference is masking up. As my expert MDS doctor recommended “trust the vaccine”.

    I’ve not tested positive for Covid. I am currently in Florida for two months escaping the upstate NY winter.

    Best wishes.


    Just another opinion for you. I am aged 51, have had 5q- for almost 20 years, I decided to not get any Covid shots, nor did I get Covid at all. My oncologist never advised or encouraged me to get the shots. I also have never had the annual flu shots, and I don’t remember having had the flu since the stomach flu roughly 8 years ago. I am a bit of a homebody in wintertime, have always used hand sanitizer faithfully after leaving a store and then washed my hands as soon as I got home; this was my typical practice LONG before Covid. Since Covid started, I have traveled out of state a couple times, have stayed at a hotel, a condo, rode elevators with strangers, swam in pools and lakes, been at a busy rest stop, been to the movies once, and went out to eat at restaurants maybe 10 times. No one in my family has had Covid, and I haven’t even had a cold since before Covid hit in 2020. I also know of several families where a few members of the family had Covid and the other family members in the same household never even got Covid. Since getting MDS, my general rule of thumb is to be more of a homebody in winter, with online shopping instead of crowded stores, keeping to immediate or smaller family gatherings on holidays. Then I try to take advantage as much as possible to get the fresh air and vitamin D sunshine boost in spring and summer; it is good for the immune system. I tend to spend more time seeing extended relatives in those late spring, summer, and early fall months when there are less germs and double check no one is unwell before visiting. So far, this has worked out for me. Good luck.

    Will Bennet

    Thank you for sharing your experiences. It would be quite informative to hear more about MDS patients contracting omicron. It seems impossible to find from googling and many doctors know so few MDS patients that it’s hard to say. Given that covid may never go away and that nearly everyone could end up contracting it, I’m struggling to understand how logical it is to alter life in a serious way in a futile attempt to avoid it given that those alterations can involve taking a lot of the joy out of peoples lives.

    Of course, if people came on here saying that their doc has 10 MDS patient, they all caught omicron, and 9 died, that would be extremely useful (albeit terrible) information. Given omicron’s supposedly reduced severity, however, it also seems possible that many MDS patients will pass it like a cold. It’s just so hard to know given how little specific information I can find.

    All personal experiences as well as recent conversations with your doctors would be greatly appreciated.

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