[susantrParticipant]

Hi
I was just wondering how many of us myeloma people have had Covid and how did you fare? Which variant did you have and how much medical support was given or needed. With all the restrictions being stopped on Thursday, I myself, am extremely anxious about catching Covid. I heard a presentation by a very well respected medical professional (not in the myeloma field), who said that with the Omicron variant almost everyone will be exposed to it and that it would be better to get Covid if you were within 3 months of being vaccinated, as you will have some immunity and have fewer symptoms, whereas if you contracted Covid 5-6 months after vaccination, when the immunity has waned you would be much more likely to be more symptomatic and unwell. Any thoughts on this at all?
Susan

[kh0305Moderator]

Hi Susan,
I’m a volunteer on the Myeloma UK discussion forum and just saw your post. I myself am a carer so can’t comment on a myeloma sufferer’s experience of having Covid, but I did get Covid in March 2020 (pre-vaccination era) and unfortunately did expose my dad (at the time in remission from myeloma) to it without realising what it was. He didn’t get it at all, despite being in close proximity to me for 3 days, which was great news. I know this won’t be the case for everybody but hopefully now with vaccinations available and the next booster on the horizon to help with immunity it may give you some reassurance. Hope you continue to stay well.

[pottersgirlParticipant]

Hi Susan
I have Covid now. I did a PCR last Monday and my hospital rang me on Wednesday to tell me I had tested positive for Covid. I then rang 111 and after answering a long list of questions and speaking to 3 medics, I was given an appointment at a local hospital to get a monoclonal infusion. Had the infusion the next day. I was in and out in about 1 1/2 hours. No side effects and I feel fine now. My 4th Covid vaccination was on 29th December 2021. I did have a sore throat and a headache but am ok now. Still testing positive but will go out when I’m clear

[richfsModerator]

Hi Susan, like kh0305 I am one of the peer-volunteers that Myeloma UK have recently trained some to assist on this forum. I was treated for myeloma in 2019 with VTD and a stem cell transplant.

Pottersgirl, sorry to hear about your positive test, it’s great to hear that you got a monoclonal infusion so quickly. I hope that you shake off Covid quickly – how are you feeling?

It’s a very good question you ask, Susan, especially since myeloma patients were immediately put in the ‘shielding’ category. Myeloma UK have a Covid-19 information hub which is very informative. A Google search shows up a very detailed paper looking at real-world data to see if myeloma patients are indeed more at risk from Covid – https://www.nature.com/articles/s41408-021-00588-z – My very short version of their conclusion seems to be that around 5 – 10% more myeloma patients have died in the era of the pandemic than would have been expected without Covid being around. This study would largely cover the period prior to vaccinations being available. So, I think it’s certainly still best to be cautious about catching Covid, but not excessively anxious.

Do you know about the RUDY study? They sent me a blood test kit to check my Covid antibody levels (not that I ever heard the results!) I believe that Boots and other outlets can do a private Covid antibody test for under £100 which might give you some insight as to your current immunity.

Best wishes,
Rich 👍

[tw744Participant]

Hi All, yet another Peer Volunteer here!
Just thought I’d add my experience, having gone down with Covid last Tuesday: I did a routine lateral flow test that morning prior to heading up to London for my myeloma treatment. When it came up positive I called the hospital, who obviously said ‘don’t come’ and registered the LFT result online, before posting off the PCR test that they sent us.
That evening I got an email from the NHS telling me to expect a call within 24hrs to be triaged for Covid treatment – this must have been triggered by my registering the lateral flow result as my PCR was still on its way to the lab. Got the call the following morning and after a few questions the nurse(?) confirmed that I would be referred for assessment by a doctor. That same evening (Wednesday) a consultant from my local hospital called and went through my history and current meds after which he arranged for me to have the antibody treatment sotrovimab over at the other hospital in our Trust. I didn’t hear anything until yesterday morning when the unit called and I had the infusion in the afternoon. Waiting on the doormat when I got home was a replacement PCR kit. So the system works!

• This reply was modified 2 years, 1 month ago by  tw744.

[richfsModerator]

Thanks for your message Tim, and I’m glad to hear that this aspect of the NHS is working so efficiently!

Sorry to hear that you’ve gone down with Covid, but glad you got the anti-viral infusion so quickly.

How have you been with it? Have you had any symptoms?

My wife and I saw a friend last Monday for 20 minutes who then tested positive on Tuesday. We had a bit of a stressful week, thinking that any soreness in the throat or tiredness of the limbs was the onset of Covid, but we’ve got this far without any real symptoms. We’ve only tested once (yesterday) which was negative, but I wonder if I have had a mild case of Covid as I’ve had,
a) mild sore through,
b) mild congestion and runny nose,
c) mild upset stomach,
d) tiredness,
e) mild headache and
f) about an hour overnight when I could smell smoke, even though there was no smoke in the house (I’ve since read of of this as a post Covid symptom).

Now I’m sounding like a hypochondriac, which is very far from the truth!

I’m interested to hear of other myeloma patient’s experiences of having Covid.

Hopefully we’ll all qualify for the 4th jab in April 👍

Speak to you soon,
Rich.

[tw744Participant]

Hi Rich
When I said ‘the system works’, maybe I should have just said it worked for me but hopefully others will have a similar experience in terms of speedy response, though what if any treatment follows will be an individual thing.
My symptoms were very similar to what you describe but if they’ve gone now that’s good, and as it’s a week since the brief contact you describe I’d have thought you’re in the clear. One more LFT?
After the antibody treatment on Friday afternoon (I didn’t get any of the antivirals) I had a bit of a temperature and chills that evening, but that and the other symptoms settled down overnight and I’ve not felt too bad since apart from feeling monumentally tired. In addition my ‘T line’ on the lateral flow took longer to appear today (yesterday it was solid vibrant red before the liquid had got to the end of the window!) so things look like they are going in the right direction though it may be a few days yet before I post consecutive negatives and can resume the myeloma treatment.
All best, Tim

[pottersgirlParticipant]

Do you have to have a 6 month gap before having the new vaccination. I have had 4 jabs, the last one in December 21. I believe that there will be from early April, a Covid Spring booster. This means that I will be eligible in June.

[tw744Participant]

Hi Pottersgirl
I believe the guidance is that those of us who have had three primary doses plus a booster (4th dose) should be eligible for the spring booster provided at least three months have elapsed since that last dose. I had my 4th dose in February so will have to wait until May.

[toffee66Participant]

I tested positive just over two weeks ago, roughly two months after my last jab. I had flu-like symptoms for 3-4 days and tested negative roughly a week ago. I am 7 months post transplant so I am having to get fully revaccinated. Fortunately I had my first two jabs before catching it (probably at my monthly treatment given timing!) and I am due my third in a few weeks.

UCLH Macmillan did a great job getting anti-virals (Paxlovid) to me same day (by courier) and I am doing fine. A few residual sniffles and very slight breathlessness on activity but nothing dramatic.

It is getting even harder to avoid it given policy and public behaviour so vaccination and access to anti-virals are really important lines of defence for us.

[richfsModerator]

Hi,

toffee66 – it’s good to hear that you, like others, have had a quick response for the supply of anti-virals after a positive Covid test. I hope that you’re completely over Covid, I do hear of lots of people being fatigued on and off for some time after even a mild infection. You’re certainly right that it’s going to be nigh on impossible to avoid Covid infections in the coming months and years, but with weaker strains, vaccination, general immunity and more treatments available, it is becoming something that we can live with. Quite an extra burden, though, to those of us (and our families) with myeloma or other conditions affecting our immune response.

Back on 21st March I commented above that I thought I may have had Covid. I saw this as reason to relax a little more and spend some time with friends, even thinking about going to the local swimming pool or into a restaurant. My wife, understandably, was concerned – why throw caution to the wind after being so careful for the past 2 years if we didn’t know if we’d actually had Covid or not?

We found that the local Bupa clinic offer a simple Covid antibody test, the Anti­SARS­CoV­2 IgG Method using a SureScreen Lateral Flow Test Cassette. Don’t mistake that generic use of ‘Lateral Flow’ with the ubiquitous throat and nasal swab test, this one is done with a drop of blood from your finger. Also, do note the reference to ‘IgG’ here outside of the context of myeloma (it is part of the immune system, after all).

So, a little finger-prick and 15 minutes later, it turned out that both my wife and I had indeed had a live Covid infection in March, albeit with mild symptoms and no positive LFD test.

I’m 2½ years post SCT and generally have a neutrophil level around 1.0 x10*9/L (so, a bit low) but don’t tend to get many infections. I was pleased, with the aid of 3 vaccinations, to have fought off Omicron without too much trouble. Not having had a positive PCR or LFD test, I didn’t ask for or receive the anti-viral treatment. After the week of feeling ropey, I had 2 very normal and active weeks, but have since been more prone to fatigue than normal, and am more aware of some aches in my back, but this may not be related. My neutrophil level dropped from 1.4 to 0.8 in blood tests a few weeks each side of the Covid infection, so I assume that it did take it out of my immune system.

You have to wait around 3 weeks since infection to have the SureScreen test, but importantly it does register a result ONLY from live viral infection, not from an immune response to the vaccination.

I’d be very interested to hear of other myeloma patient’s experience with Covid.

Rich 👍

[sparklesParticipant]

My Mum was due to get a bone anrrow bio set ahead of her myeloma trial. The pre-procedure test came back positive Covid. They told her to stay away for the bone marrow biopsy. This delayed her treatment and she then broke her hip. There was no special treatment because she had Covid. She just got delays. Luckily she was symptom free with Covid.

[maidmarionParticipant]

Hi everyone! My husband, who has MM, went down with the Delta version of COVID whilst in hospital and it affected him badly – he’s still struggling with his breathing 15 months later. Personally, I believe catching any virus and the recovery would depend on where you are in your treatment and the levels of your immune system (as suggested above). We feel more confident now that he would be able to fight off infections easier than when he caught Covid, having had chemo and an SCT, plus full vaccinations. Optimism! It’s encouraging to hear that some of you have contracted the virus and not suffered too badly, makes the whole thing seem less scary!

We’re being cautious as he’s on maintenance and so his immune system is affected, but not as bad as before. We always wear masks still when out and about amongst people, but we are determined to enjoy life as much as we can and not have that awful paranoia feeling around us all the time.

[myelomahelpParticipant]

Hi All, I came down with COVID on 11th June. I registered my LFT result on NHS Covid app and I received a phone call later that day, from NHS, asking about my symptoms and how I was feeling. Fortunately I feel,like I have a head cold and cough and am not too poorly. I was given a phone number to ring if my symptoms got worse to see if I was eligible for antivirals. As I am feeling much the same, as on Saturday, I have not felt I need to ring the number. Over the last 2years I have been extremely cautious about going out, and still wear a mask today, I caught covid from my husband at home! Having had 4 covid injections I think I can say they have been effective for me.

[mriampositiveParticipant]

It was having Covid that led to my diagnosis of MM. Covid nearly got me as all my organs were packing up but thankfully got to hospital in time. At the hospital they took bloods which led to them suspecting MM. After having a scan it was confirmed and I start my treatment tomorrow morning. I am a little anxious but glad that the treatment is starting so quickly. The doctor advised me that my Covid was probably so severe due to the MM that nobody knew that I had.

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