COVID 19 VAX with BILATERAL LYMPHEDMA

purple32

Hi all

I got the Moderma vax. PLEASE google : COVID ARM" Go for the PFIZER if you can. I have BILAT LE and got the shot in my leg. Swelling etc .. 8 days out. Sure wish I had known about ' covid arm" ... ALSO, pls chk this out :

https://www.fox2detroit.com/news/heres-why-women-m...

beach2beach

I had my second dose of the Pfizer vaccine two weeks ago today. I was fine after first shot. This second one I felt the lymph node discomfort after a few days. Achy. I'm two weeks out now and it's gotten better. I have a co-worker who got the Moderna and had the lymph node issue already with her first shot, that was before they acknowledged it could be a side effect. She had it again after the second.

Covid keeps on giving..

purple32

UGH!
Thanks- My DR is advising me to get it in the same leg because I have knee issues i the other leg . I hope that wont be a mistake,

PLS spread the word that Moderna does not seem to be best for us. Go with PFIZER if you have a choice. (Google COVID ARM and Moderna and LYMPH NODES)

JMO

MinusTwo

Thanks for spreading the word ladies. Fortulately I had one Pfizer shot & supposed to have the 2nd one tomorrow.

purple32

beach2beach

Do you know if her swelling resolved now ?

Received MODERNA on FEB 3 in Right thigh. On DAY 8 I go what my DRS call ' covid arm ' typically appears Day 8 ( on thigh) transient in those who have no LE issues, Swelling at the injection site has finally resolved, BUT pocket of swelling BEHIND thigh. I finally measured and R thigh one inch bigger than left thigh , but never PRE measured so who knows ?

Docs say give over Right (same) thigh again March 3rd , BECAUSE left leg is impaired ( Bad hip, bad knee and bad ankle) - UGH_
What to do what to do.

MODERNA impacts the nodes! Who knew?
I DON' T THINK Pfizer does ( sigh)

purple32

Daily one hour free webinars! I received notice today of these webinars and wanted to share in case you may be interested. I'm definitely planning to listen to a few. The National Lymphedema Network www.lymphnet.org

March is Lymphedema Awareness Month. To celebrate and work towards our mission of increasing of awareness, we have planned an entire month of educational sessions intended for the patient

community. We want to let you know that we are here to work for you and to empower you with knowledge. This webinar series is complimentary and is our service to the community. Start at 5:00pm ET end 6:00pm ET. Each day will be a combination educational content on the topic listed, sponsored content, and time spent on updates on other lymphedema related topics, services, and/or organizations. Go to NLN website to register.

Irishlove

Just received Moderna vaccine today. No options available for Pfizer or J and J vaccine. It took 2 months to get an appt., so of course I accepted it.

Now for the upsetting part. I requested a shot in the thigh Not only would they NOT agree to do it, the head RN said I could not have a vaccine without a Dr. approval. All because I asked,,,sigh. Finally got my G.P. on the phone who authorized the least affected arm. I also have MS for 20 years and deal with upper body weakness, circulatory problems in my arms. I called Moderna when I got home. After being on the phone with that horrible screaming noise they call instrumental music (think techno night club blasting music) I was transferred from one person to another, who supposedly could help me. I asked her for a form that she could send me authorizing thigh vaccine and after receiving a litany of legalese mumbo jumbo, I got a "We have no information on allowing that". Say What??? Mass. General Hospital says Moderna can be given in the thigh. Where did they receive that info from? I asked the rep that question along with a snarky "Well what do double amputees do"? The answer was a repeat of legal disclaimers. In plain words I'm out of luck. The G.P. has no input since he hasn't bumped into this problem. So now what?? My arm is really sore and it's only been 8 hours. Minor increase of swelling, so far anway.

MinusTwo

Oh IrishLove I'm so sorry. It has taken me a long time to cultivate people who will do shots in my thigh. And getting blood drawn from my ankle is even harder.

Was this at a hospital? For my Covid, I had absolutely no problem. I just said "post mastectomy lymphadema precations". I had actually researched thigh shots on Dr. Google and printed out pictures & directions of where & how they were given, and why the thigh was often preferable. Of course they wouldn't do your thigh at a drug store or a drive through location. I'd suggest getting with your MO or BS so you have the directions in writing before you get the 2nd shot.

Keep moving that arm. Hope the pain doesn't get worse.

purple32

I'm so sorry you went through this! Irish. You are correct in saying that the Mass general hospital website says right on there that it is on the bottom right of the moderna there is a an authorization saying that it can be given in the lateral thigh. It's right on the Mass general hospital website. This is so upsetting! So I went back to the hospital to get my second shot I've been doing a March 3rd. When I went in they said they had a pharmacist who could give it to me because all of the nurses were giving pfizer! I said no way. They said we are very sorry but you can't get a Pfizer after you have already had a Medina. I said I realized that but I am not getting my shot by a pharmacist. I'm sorry but I want a nurse and they kept arguing with me saying that all of the nurses were giving the pfizer. Can you imagine? I said all a nurse has to do is walk over to that table and ask the pharmacist for one of the majorness shots and they can give it to me in my thigh. They said no! I said please let me see the nursing supervisor. Three of them started chatting in the next thing you know a lovely young nurse came over and said she would help me. We went back and forth and it was finally agreed to give it to me in the opposite like in the hopes that it might not react again because she could still see them Of where it was insulted the first time so we gave it and what I call my bad leg. In other words the leg where I have a bad hip a previously broken knee that is bothering me in a previously broken ankle. I had it yesterday and so far I have had no real side effects but I just noticed a minute ago that it is starting to swell a bit at the injection site. I'm just praying to God that when I wake up in the morning it's not huge. the nurse did tell me that they've been seeing this a lot and people who have gotten it in their arms as well and that it does resolve. my issue took well over a week to resolve on my right leg but the mark from where I had the shot is still there. I wish you all the best. We have got to put a change to this. I was contacted as automated messages on my cell phone by something called vax finder. I repeatedly told them in the comment section that the Madonna has severe impact on people who have had cancer or have had lymph nodes removed. I'm strongly encouraging anybody who has any side effect to look at the vax finder and fill out the comment section. We may not be able to help ourselves but perhaps we can help some people in the near future. Wishing everybody all the best with these injections!

MinusTwo

Wow Purple - what a nightmare. Glad you're OK so far. Hope the SEs are minimal.

As an aside (non-covid shot related) I finally did find a wonderful pharmacist who gives me all required shots in my thigh. He used to do hip/butt for me, but he did a bunch of research a year ago and said the current protocol is thigh so it's not too close to the sciatic nerve. I couldn't be happier. He's more gentle then the nurse at the Endocrinologist's office who gave me my Prolia shot this week.

Irishlove

I made sure to file my "complaint" with Moderna. They took all the info, including lot number and medical history. It may not help me but as you folks said, maybe they will step up and help the next person. It was a drive in and after the first nurse said NO, I tried the next one down the line. She said she had a friend in the same boat as us and a note that allowed her to get her shot in the thigh. However, it wasn't at the drive thru and sure enough over comes the first nurse, obviously the head RN and boy did she let me have it for still trying. If we don't advocate for ourselves, we are lost..... Prayers for you Purple32 that you are ok. Darn why do they have to put obstacles in our way. It's not like shots haven't been given in the thigh repeatedly. I did it for MS,, rotating sites, arms, stomach, thighs, buttocks, for years, prior to breast cancer and lymphedema diagnosis.

purple32

Thanks Irishlove - so glad you reported. Lord knows how long we may have to take these shots.

In my area (MA) pharmacists at the drugstore are actually prohibited from giving shots anywhere but the deltoid as they have no other training to do elsewhere- this was why I did not want the pharm at the hospital ( not to mention the fact there were 25 nurses there!) I think I may have done something foolish. A nurse who I know advised that I ice my shot this time. All was aok this time, and then last night, I sat in my recliner and put a ( rather heavy) icepack on top of my velour pants.

Injection site is now swollen and ' pink' , now sore and wasn't before ( sigh) Just hoping it doesnt get worse.

HATE feeling like I doid this to myself.

MinusTwo need to PM you again!

MinusTwo

Purple - holding you in my thoughts!!!

BlueGirlRedState

I finally got signed up for dose 1. Hoping letter from DR will let me have it in thigh. That kind of information should have been made available to providers, hopefully I will not run into snags.