lymphedema and COVID vaccine?: Hi everyone just an... - LSN

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lymphedema and COVID vaccine?

Paw1955
Paw1955

Hi everyone just an enquiry to see if anyone has experienced any side effects after having the astrazeneca vaccine? The reason I ask is I have lymphodemia in both my legs, but for the last few years I have managed to keep them under control wearing Farrow wraps. I had my first astrazeneca jab two weeks ago and felt really rough for a week, but what I have notice particularly in my right leg is that it’s started to swell and become painful at times? So just enquiring if anyone else has a similar issue. Keep well and safe👍

17 Replies

Please make use of reporting after effects to the uk online Yellow Card system.

coronavirus-yellowcard.mhra...

In usa, the equivalent is the online VAERS.

CCT67
CCT67 in reply to Londinium

👍 Unfortunately not enough people know about Yellow Card reporting so spreading the word is essential!

Londinium
Londinium in reply to CCT67

But it's the medical teams/centres that should be informing the patients. They know that the patients aren't aware of Yellow Card and VAERS.

CCT67
CCT67 in reply to Londinium

The problem arises when patients don’t contact their GP or clinic to report issues. Many patients report their negative experiences in social media groups. After advising them to report to their medical team they don’t; or often they try and struggle to get an appointment; or, as recently occurred they're told their reaction of several weeks unresolved swelling is ‘normal’ and to wait it out. This has occurred even though there is no ‘normal’ where Lymphie patients are concerned as there’s been no research into it. Some medics don’t want to know as they're so snowed under with ‘more important concerns’ than a patient with unresolved swelling or other symptoms following a Covid jab.

Lavender60
Lavender60 in reply to Londinium

Each person who is vaccinated should e given a leaflet about possible side effects and how to report. This mentions and explains the yellow card system.

Londinium
Londinium in reply to Lavender60

According to some people, they were not given that info on a leaflet, or even verbally.

Lavender60
Lavender60 in reply to Londinium

Really? I do find that surprising, and a shame if it is the case. As we are handing out the information many people tell us they `don't read leaflets' , so we explain why they should... ultimately it's also up to us to be informed and the info is on line too on the gov.uk and nhs.uk or via GP surgeries, pharmacists etc

nhs.uk/conditions/coronavir... .This excellent source of correct information explains all about the yellow card system.

It’s a mixed picture. There are hundreds of primary and secondary lymphies reporting their covid jab experience re swelling & other side effects. in a dozen on line Lymphie groups. many lymphies report having post-jab severe to mild additional swelling. Some have none. Some with swelling say it’s lasted a few days and others a few weeks. And some are 8–10 weeks on and swelling, itching and more pain than pre-jab has not settled. You’re not alone in your experience of swelling not settling.

Try doing a lot of SLD, lymphatic breathing, lymph moving exercises, and get out a move ie if you can go walking daily. Getting MLD treatment would also greatly help reduce the additional swelling you’re experiencing

The official word from lymphoedema experts is that the vaccine should not cause lasting effects. However the reality is that No research has been undertaken looking into this topic (and no one in the trials declared having lymphoedema) so it’s only ‘in theory’ the jab won’t cause lasting effects. Anecdotally this is true for many Lymphie but certainly not all of them

Paw1955
Paw1955 in reply to CCT67

Thanks for the info, I appreciate the feedback 👍

L.S.N has produced the following advice and explanation about the vaccine for people with lymphoedema.lymphoedema.org/wp-content/...

It is of course possible that what you have experienced is unrelated to your vaccination. In most people your immune response is not impaired , except in the quadrant affected by lymphoedema. Covid 19 is a respiratory infection and as such should not affect your leg lymphoedema. However it is also wise to report via the yellow card system which would have been listed on the leaflet you received about your vaccination. And if still concerned, talk with your Lymphoedema service. Wishing you well.

I had my first jab nearly a month ago. I also have lymphedema in both legs and on top of that I have M.S to deal with. I must admit a few days after I felt absolutely dreadful a really bad headache for days and my body literally felt like a steamroller had gone backwards and forwards time and time again I was in bed for 3 days and it took longer to just feel kinda back to normal but this could have been due to the fact I have M S. I measured my legs and one has got bigger but I cant say that I know its since my covid injection. If you are concerned I would see if you can get an appointment at your lymphedema clinic. I wish you all the best it would be nice to know how you get on.

Paw1955
Paw1955 in reply to Panda57

That’s how I felt after my jab, I could hardly move for a few day, it seemed to highlight all the aches and pains I usually have. I tend to manage my lymphedema myself with the help of my wife and farrow wraps. I was badly let down by our local lymphoedema clinic, but my doctor is helpful if I need it. Though these days it’s extremely difficult to get appointments or speak to someone. You stay safe and keep well, and thank you for your info.👍

I've been working in a vaccination centre since January. We see an average of 1200 patients a day and no patient is co-erced and certainly not forced to be vaccinated. Information about the vaccine is available before and also after the vaccine is given. Patients are asked a series of questions prior to consenting and have ample opportunity to discuss the vaccine prior to being vaccinated and after. Doctors are available at our centre all day. This will e the case at all major vaccination centres and no one is forced to have it.

Londinium
Londinium in reply to Lavender60

I've been harrased by letters and calls, even on a Sunday by a total stranger from some vax centre, resembling a secondhand car dealer - couldn't get her off the phone! She demanded reasons for "refusing!" None of her damn business.

Ps. These are experimental injections. Know or learn the difference.

LymphSuppNetwork
LymphSuppNetworkAdministrator

The lsn has issued consensus guidance which can be viewed on our website. Any adverse effects should be reported using the written information provided to you at the vaccination Centre you attend. We have removed some comments from this thread which do not provide helpful balanced information and views.

I am in the US. I had the first Moderna shot on March 2nd. The headache and muscle aches, arm pain all lasted 5 days for me but the lymph node swelling is still going on as well as extra swelling around my lymphedema area. My lymph nodes under my arms are painful and swollen, same with neck ones and behind the knee.

I reported the side effects on the CDC reporting system but no one has reached out me. I’m terrified to get the second dose. I am so swollen and I feel awful. It’s been 4 weeks of this. I have no idea what to do or what’s normal and what’s not. And the doctor has no idea either.

The CDC keeps sending me text messages telling me I should get the second shot, but why would I do that the lymph swelling is so bad? Won’t it just get worse??

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