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    • #17549
      Ashley Gregory
      Moderator

      Good morning all!

      As you know, Price and I have both elected to receive the Covid vaccine. I have received both doses of the Pfizer one and Price has received his first dose of the Moderna one.

      Have any of you also received your Covid vaccine yet? If not, have you been contacted about making an appointment to receive one?

      Price and I have previously shared reviews of our experience with the vaccine, but would like to hear from any of you who have received it as well!

    • #17557
      Karen Foshee
      Participant

      Hello Ashley, Price and LEMS friends,

      My first dose is scheduled later today through the hospital system that includes the majority of my doctors. I’ve been told that the dose could be Pfizer or Moderna, but I’ll make a point to ask. I have apprehension, but reading your reviews has helped! I feel fortunate that the vaccine was offered to me. I’ll let everyone know how it goes! – Karen

      • #17558
        Price Wooldridge
        Moderator

        Yes, I’m interested to see how it goes for you. Ashley had Pfizer and I had Moderna.

    • #17567
      Kevin Deihl
      Participant

      Good Morning All! Well, I got my first dose of the Pfizer vaccine on Wednesday and I reported all went well. Saturday,I woke up feeling ill and feverish. I left it run it’s course until the fever reached 101.9. I took 2 Tylenol and it helped. It’s Sunday now and no fever but still feel ill. We’ll see what develops today.

      • #17569
        Price Wooldridge
        Moderator

        Kevin, thanks for your report. Sorry it’s been a bit rugged on the first shot, but good to hear you were proactive with the Tylenol. I guess because that’s a pre-med I take before IVIG every 4 weeks, I’m pretty attuned to its benefits. Glad you’re on the mend and got the shot!

    • #17568
      Karen Foshee
      Participant

      Thanks for sharing your experience, Kevin. I had the Phizer vaccine Friday. All went well yesterday. Woke this morning, Sunday, with unusual fatigue, feeling ill,  along with LEMS weakness. Returned to bed; sleeping off and on. No fever.

      Hope others will join our vaccine updates! -Karen

    • #17574
      Ashley Gregory
      Moderator

      @galvezgal

      Thanks for sharing your experience with us! My second vaccination was similar to yours although I didn’t have any noticeable effects from the first one. Hopefully, your second one will be smooth! Personally, I’m happy to have experienced the side effects because it means my body is mounting an immune response to create antibodies to protect me later. Let us know about your experience with the second shot!

       

      @specialk70

      Hoping you are feeling better now! I took two Tylenol prior to my vaccine and that seemed to help! I felt much better 48 hours after my vaccine and am hoping you have a similar experience. Let us know how you’re feeling now and please update us on your second vaccine!

    • #17621
      Kevin Deihl
      Participant

      I must update my earlier post on the vaccine shot. After experiencing fevers and cough for the Sat. and Sunday, my wife woke up Monday feeling ill like me. Her symptoms continued thru Tuesday and she convinced me we should get COVID tested. On Thursday, Feb. 11, we received the positive results.  I received the monoclonal antibody treatment from Mayo on Friday the 12th. That night I ran a 103.t fever and was short of breath. With help from my wife and some Tylenol, was able to avoid going to the hospital. Once the fever broke, I’ve been fine ever since. However having received the monoclonal treatment, we can’t receive the 2nd vaccine shot 90 days post treatment. All in all having COVID hasn’t been that bad.

      • #17622
        Price Wooldridge
        Moderator

        Yikes, getting Covid around the same time as the vaccine. I’m glad your wife had the idea to get you guys tested. I’m glad to hear you have pushed through it and are getting better. I guess the upside is you now have natural immunity in your system.

    • #17626
      Dorothy Dempsey
      Participant

      I had my first dose of Moderna on Feb 10th with expected mild side effects. Yesterday, 11 days later, my arm at injection site started to itch and turned into a rash and swollen.  A fiery itch it is, had a bad night also with HA and nausea.  My primary care physician wants me in his office this afternoon for eval and to rule out shingles or anything else.  I have read there have been others with that week’s delayed reaction to the moderna vaccine.  Has anyone else experienced this weird phenomanen?

      • #17628
        Price Wooldridge
        Moderator

        Well, this does seem unusual, but I’m aware that these vaccines, though approved, are still under study for post injection adverse reactions. I hope there isn’t a connection, but perhaps we can all learn as you are evaluated. I believe there may be a CDC reporting system for reactions, but don’t know the mechanism.
        I only had the more frequent sore shoulder a day after.

    • #17633
      Ashley Gregory
      Moderator

      @dordem

      I’m sorry to hear that. I have heard of others getting the same rash on their arm with the Moderna shot, but it usually fades quickly. Hopefully that’s the case for you too! I did not experience that side effect, but I was given the Pfizer vaccine. Please update us on how you are doing!

      • #17634
        Dorothy Dempsey
        Participant

        My arm rash is getting better, headache pretty much gone, still bouts of nausea and the chills but better.  However my doctor is very concerned about the second dose, if I should just cancel my appt. for that or not.

    • #17636
      Ashley Gregory
      Moderator

      @dordem

      Of course that choice is ultimately up to you! Personally, I would still get the second vaccine and have some Benadryl on hand.

    • #17702
      Mary Ann Camporeale
      Participant

      I received my second dose of Moderna in Saturday 2/27. My first dose I only experienced a sore arm for a few days. My second dose I had less pain at injection site, but on Monday I developed redness, pain and itchiness in my arm. I’m taking tylenol and putting a cool compress on my arm. I did not have any other symptoms with either dose.

    • #17704
      Ashley Gregory
      Moderator

      Hey

      @maclif

      I have heard of a few people who also said the Moderna vaccine gave them a rash on the arm but went away after a few days.

      If you want, you can check out this article about it.

      Thanks for sharing your experience with us, I’m glad you are protected now!

    • #17737
      Karen Foshee
      Participant

      Received 2nd dose of Pfizer vaccine on March 1st. Symptoms were the same as after 1st vaccine dose… second day following, I had fatigue and rested all day. No pain at injection site. Friends and family are mostly against the vaccine due to the internet ‘gossip.’  We each have to make our own truly educated/informed decision. My doctors have all been YES for taking the vaccine. That answered it for me.

    • #17738
      Ashley Gregory
      Moderator

      Hey @galvezgal

      Thanks for sharing with us! I’m so glad you’re protected now and that you didn’t have any issues with it! 🙂

    • #17834
      Dawn DeBois
      Participant

      FINALLY I received the Moderna COVID vaccine. Yeah!  I had the first dose yesterday and my arm isn’t even sore. I was a bit more nervous than I would be about potential side effects because some TBI patients in groups I belong to have reported an exasperation in TBI symptoms with the vaccine. So far, so good with no issues!  I’ll keep you posted on my second dose.

      ‘As far as my weekly subq, I held off last week and will infuse at the normal time this week. I’ll also hold off so that I’m 2 weeks out from subq for my second dose. Having 2 small breaks like this to give my antibodies a chance to be active will hopefully allow the vaccine to work.

      • #17836
        Price Wooldridge
        Moderator

        That’s great news @dawn-debois! We’ll be interested to hear about any reactions you have to the second Moderna. I hope it’s going to give you a good mood lift too as we get closer to herd immunity, and we can all feel better about life with Covid.

    • #18928
      Graham Head
      Participant

      I had the 2 A Z vaccines 1 12/02/21. 2. 01/05/21. With no problems. My constant problem is colds go straight to my chest which means come off Myoplenolate Morfet for 9 days whist the antibiotic Amoxicillin worth’s. I’m about to get booster jab sometime in the near future plus flu jab. Ok graham head.

      • #18929
        Price Wooldridge
        Moderator

        @ghead I understand you are immunosupressed which would make you more susceptible to upper respiratory problems. You and I are close in age, but my frequent upper respiratory infections, which became prevalent in my 40’s, have stopped for the most part. I hope you are under the care of a pulmonologist (or respirologist). I’m a Registered Respiratory Therapist in the US, though I don’t practice any longer. With my frequent, severe upper respiratory problems, I have kept a nebulizer at home, and my pulmonologist at the time, had a nice cocktail of drugs for use in it to help me get through them. I also at times had to resort to short runs of prednisone steroids to get me through as well. I hope this helps you.

    • #19228
      Mary Hudak-Collins
      Participant

      My entire family had Covid in Dec 2019/Jan 2020 back when it all started.  At that time, no  one quite knew what it was so our 8 weeks of misery was diagnosed as “Severe Bronchitis”.  When information began to come out, I did massive research regarding this virus.  I’m unable to take the flu shot so being offered another vaccine for a similar virus was not enticing to me or anyone in my family.  I have not had the flu since I was in my late teens, my husband and I have been married 29 years and I’ve never seen him have the flu, and my children, ages 24 and 25 yrs, have never had the flu.  We are all on a strict vitamin regimen, with special attention paid to vitamin D3 (since LEMS patients do show low Vit D levels and new research is showing that increased Vit D3 levels are related to decreased Covid symptoms).

      Once I was diagnosed with LEMS in March of 2021, I kept a close eye on the VAERS system for post-vaccine adverse affects.  Of course, I was more interested in the neuromuscular side effects having just been diagnosed with a neuromuscular syndrome.  I react negatively to most medicines/injections, so any side effect sent up red flags in my head.  I carefully listened to both sides of the arguments for getting the vaccine and opted out.

      Fast forward to August.  My son came home from SC and got sick the 2nd day of being home.  Yep!  He had Covid.  Then my husband got it, and then my daughter.  At the sign of the first symptom, we began home treatment.  My son’s lasted 2 weeks.  My husband (69 years old) lasted 1 week, and my daughter (numerous autoimmune diseases) lasted 5 days.  I do have an O2 sat meter and kept a close eye on their O2 levels which never went below 91%.  Surprisingly to me, I didn’t get sick this time around and was grateful.

      I am happy to hear that those in this forum who have been vaccinated have not experienced any major issues but for me, I’m not willing to take a chance with a vaccine that I cannot be told what any long term effects it has.  I know we all have to make that choice for ourselves and I’m not one for condemning anyone for the choice they make.  I have seen so much division between families, friends, co-workers, etc. over this vaccine that it saddens my heart.  I have been called selfish, uneducated (have a BSN), white-privileged, and the list goes on and on to the point of not even wanting to be around people.

      I regress and apologize.  I just wanted to share the other side of the coin from someone who chose to forego the vaccine and share an article that I found to be a very interesting read.

      https://n.neurology.org/content/97/15/720

       

      • #19231
        Price Wooldridge
        Moderator

        @mhudakcollins We all must make our own decisions regarding vaccinations, given our personal risk assessment. That’s a great paper you linked and speaks directly to what those of us with neurological disorders must weigh. The conclusion was only about 2% of those studied had severe adverse reactions. That must be weighed with the perceived vulnerability a person feels they have to severe or life-threatening problems from the virus.
        You do not mention why you decline the flu vaccine. It’s not a live vaccine, and I’ve taken it for years. A few years back I did catch that year’s flu strain, but my symptoms were milder and cleared quicker, I believe, because I’d had the vaccine. Data is much more detailed with the flu stains.

    • #19232
      Mary Hudak-Collins
      Participant

      Price, back in 1986 when I first started working as a nurse in the hospital, flu vaccines were encouraged but not required.  Of course, when they asked us if we wanted to take it, I stood in line with my sleeve rolled up.  I mean, I had just completed the Hep A & B vaccines, so I thought “why not?’

      I received the vaccine at the end of my shift and drove home.  Working 11p-7a, I went to bed.  I woke up sick as a dog…and I mean sick…I was partially paralyzed and had much difficulty breathing.  I remember my head swirling round and round and I was so nauseated I just wanted to vomit but couldn’t.  I couldn’t even get out of the bed to call 911 so I just laid there and prayed.  I missed 3 weeks of work and they told me then to be very careful of any vaccines I take.

      That was one of the scariest times of my life…not knowing if someone was going to find me dead in my bed hours or days later.  I lived in GA at the time and had been there a very short time so I didn’t know anyone but co-workers.  All my family lived in OH.  Cell phones weren’t a thing back then so I was basically alone.

      So yes, since that time, I have been very leery of any medicine regardless if it is a pill or injection.  I have been healthy all of my life so the only medication that I have ever been prescribed was BCP and that was way back when 🙂  Six weeks before my LEMS symptoms came on, I was put on Lipitor for elevated cholesterol.  I argued with my doctor about it and suggested non-statin meds, but he told me that was like taking a knife to a gun fight.  He begged me to try it for 2 months.  Against my better judgment, I did.

      Now, they have said that the statin medication is very most likely to have triggered my autoimmune disease.  I wonder where I would be right now had I stuck to my guns.  I guess I’ll never know.  But, from now on….I will not take anything without doing significant research and weighing the results for my own personal history.

      • #19234
        Price Wooldridge
        Moderator

        @mhudakcollins I absolutely had weakness exacerbated by trying a low dose statin drug at the request of my diabetes clinic. I was suspicious of it due to previous issues, but relented. I immediately had big problems wheich led to my diagnosis of LEMS. ALL statin drugs are now on my banned list. Unfortunately, a bit too late. I made a mistake.

        • #19235
          Mary Hudak-Collins
          Participant

          Price, I am so sorry to hear that happened to you.  Mine also was a low dose.  I am thankful though…that all (and I say that very lightly) that happened was I got LEMS.  My best friend’s co-worker had been on Lipitor for about 3 weeks and came into work with slurred speech and difficulty working (they worked at a mental counseling clinic).  The employees thought she was drunk and she couldn’t speak well enough to tell them something was wrong.  Long story short, she ended up in the hospital and after 8 days she passed away.  The tested everything on her EXCEPT for LEMS.  They truly believed that she had a stroke.

          That is why I am so adamant about educated the healthcare field in this area about LEMS, with particular focus on symptoms.  At this point, I am the first one in this area with this diagnosis and they are all learning along the way, sometimes at my cost.  But hopefully in the future, if someone presents with similar symptoms, maybe LEMS will be in the forefront of their mind and they will pay more attention to it.  It all starts with the PCP.  If they don’t recognize it, then no referral to a neuro (that has worked with LEMS patients) will be made.  I believe that early diagnosis and treatment is imperative to getting the symptoms under control.

           

    • #19262
      Wanda Grischkowsky
      Participant

      I received both doses of Pfizer COVID vaccine and the booster. No issues with the first dose, but had some mild flu-like symptoms  with the second dose. I had mild symptoms with the booster that lasted a day.

      Concerning statins, I tried taking them years ago, but always suffered with muscle pain and weakness. Recently my endocrinologist recommended I take a low dose 3 days per week. It is very difficult when doctors do not understand LEMS.

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