COVID 19 VAX with BILATERAL LYMPHEDMA

purple32

Beaverntx

but 'COVID ARM' ( google images) is unique ONLY to MODERNA and did not go away in my case. I THINK and DRS think I may now ALSO have LE in legs. I am sounding a trumpet for ppl to get PFIZER if at all possible. HTH

LeapFrog39

I got mine in the thigh. recieved the second shot yesterday. The nurse told me they wouldn't give them in the hip because of issues with it aggravating the sciatic nerve.

BlueGirlRedState

purple - sorry to hear about lymphedema in leg attributed to vaccine. Lymphedema really sucks. One person posted about a terrible reaction she had to the JJ, reaction attibuted to existing MS. It is so discouraging that so little progess has been made for really treating and even curing lymphedema. Some able to manage/control it, others not. Hope things get better for you.

buttonsmachine

I have not been vaccinated yet. I have not had the option until recently because I am young-ish and despite having MBC I was not in the priority groups. However, now I am hesitant because I'd like to find someone who can vaccinate my lower extremities instead.

I was fortunate enough to be warned about lymphadenopathy by my lymphedema therapist. She advised that I should be vaccinated, but that I should be vaccinated in the thigh or hip area because BOTH my upper extremities are so compromised at this point due ongoing LE issues aggravated by MBC.

By the way, BOTH the Pfizer and Moderna vaccines can cause lymphadenopathy, which is the medical term for the condition that is of concern to us with our impaired lymphatic systems. (I think J&J can too, although I personally have not looked into it as much because my MO told me to avoid that one.)

Thanks for starting this thread and I'm sorry for those of you who are suffering with the effects of the Covid vaccine on our already compromised lymphatic systems.

purple32

buttonsmachine

Thanks for your reply: RE: " By the way, BOTH the Pfizer and Moderna vaccines can cause lymphadenopathy.." YES, but ONLY MODERNA is known for the " covid arm' which is when the swelling came.

I am only trying to sound a bell - IF I could choose I PERSONALLY would go with Pfizer. JMO.

Good luck and Best Wishes to all!

Laurie

PS in my own case, I am not talking about lymphadenopathy, I believe I now have bonafide lymphedema in both legs (and arms) . Not sure whoch linb to give for the booosters!

BlueGirlRedState

buttons - check with a "doc in the box" clinic or hospital clinic for getting vaccine in lower extremity. None of the pharmacies where I am were willing to. One "doc in the box" clinic was willing to, but I would have had to wait another month or two. I even had notes from 2 doctors requesting lower extremity because of lymphedema. Through casual conversation, it seems like people have had less reaction to Pfeizer than Moderna. Don't know about JJ.

Anonymous

I had the second dose of Pfizer on May 11th, three weeks after the first. Two days ago, I noticed my feet and anklesswelling with a red mottled look on the skin. The left side is worse than the right, but both sides are definitely swollen. It looks a little better today, less red, but both feet are noticeably puffy. I have stayed off my feet so far today, it does get worse when I stand for a period of time. I believe lymphatic blockage can be a cause ofswelling like this.

If it was only my left side I'd be worried about heart failure, unrelated to the vax, but the swelling is definitely on both sides. In addition, I just had an echocardiogram at the end of April which showed no issues

I do not have lymphedema, I have not had breast surgery because I am Stage IV deNovo. But I saw this topic and thought I would share this experience.

I see that Eric Clapton had some sort of reaction in his hands and feet as well, after receiving the Astra Zeneca shot. He said it began to subside after about ten days.

Take care and be safe.

buttonsmachine

Olma, thanks for sharing your experience. I hope you feel better soon and that whatever it is resolves soon.

If the red and mottledness continues or worsens you might want to get your platelets checked - some people were having that very rare side effect of low platelets. But as you said it could be lymphatic system related too.

I'm still a bit nervous about getting the vaccine, I have to admit. It's just one more medical procedure to go through, with unknown consequences, and I think I'm just worn out these days. I'm so drained from six months of chemo and four hospitalizations this year. I'm afraid of anything else unexpected happening to me, but I know it's not rational. Just my rant, thanks for listening.

Anonymous

Thanks for the suggestion, buttonsmachine.

Happy to report, the swelling was down a lot as of yesterday. Still some puffiness and redness but greatly reduced. I’m also feeling pins and needles in my feet. Debating if I should go to urgent care or my primary, just to have it looked at and get an opinion. I do have a recent platelet count in my chart, which looks fine.

I don’t think you are irrational to be a little concerned or reluctant about the vaccine. When we are on these strong medications and have other health factors as a result of cancer treatment, let’s face it, the possible interactions have yet to be discovered. The last thing we need is another side effect or loss of function to deal with.

Take care and be safe.