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    • #16639
      Jodi Enders
      Keymaster

      I have been back and forth lately with myself on whether the risks I take going out in public crowds and spaces are worth it with MG. I am still on high doses of immunosuppressants. I hope to try to wean off of them over the next year. However, another year of quarantining seems draining in addition to how long I, and I assume many of you have since COVID-19 began.

      I am vaccinated, but certain studies suggest that the COVID-19 vaccine may not be fully or effective at all for people taking immunosuppressants and are immunocompromised. I have scheduled a few trips flying for the fall, planning to be as precautious as possible. I have stopped feeling like myself, maybe with my diagnosis coming in the middle of summer last year during the lockdown.

      It has been hard to forgive myself to take some risks if it means holding on to a bit of my identity to stay hopeful during these challenging times. I am also struggling to find remote jobs that fit what I need, but I know taking a job in person could jeopardize my health.

      Are any of you struggling with similar predicaments? What are your thoughts on rising COVID-19 numbers and going out into public spaces?

    • #16642
      Delores Gstling
      Participant

      I am very cautious about going out into public. I choose to select my places carefully before I go out.If the place is crowded I do not go inside and come on back home if it’s fairly decent I will go inside I will have on my mask and will observe how everything is going on within that store . If I noticed that children  might be running rampant or the people have the mask beneath their nose I tend to stop shopping and leave. If people are not distancing properly I tend to leave the store also.

      • #16723
        Jodi Enders
        Keymaster

        Its finding balance and giving myself grace for when I may have taken too big of a risk is something I currently struggle with. Hopefully, we don’t have to put up with these limitations much longer!

        • #16827
          RINA NEL
          Participant

          I live in terrible South Africa. I am 71 years old and I go anywhere. I sanitize before entering a shop and I keep my mask on all the time. Lucky for me I need to have my darkglasses on all the time as my eyes are so light sensitive.

          I have decided that I am nit going for the vaccine. Quite a few people around us died in the last couple if weeks after taking the 2nd shot. They were healthy people. We take Ivermectin every 2 weeks and I just feel that we need to calm down.

          Just saying.

          Rina Nel

    • #16731
      Scott McCormack
      Participant

      <p style=”text-align: left;”>I am in the ramp up process with Prednisone, currently at 60 mg/day.  Although I was fully vaccinated (Moderna) in March, I wear an N95 respirator mask anytime I go out.  I also limit my public forays to necessary trips.  The biggest challenge is my wife’s fear that, although also vaccinated, she could acquire the virus and pass it to me.  No easy answers but we try to strike a balance between safety and living a good life.</p>

    • #16732
      Joseph Kest, Jr.
      Participant

      I am taking CellCept and Prednisone and am very cautious in public places. I was fully vaccinated with the  Pfizer vaccine in January and February of this year. I understand the CDC is investigating the possibility of providing a booster shot to those with compromised immunity systems. In the meantime I were a mask in public places and try to maintain a social distance.

    • #16743
      Craig
      Participant

      Scott McCormack raises a great point, that is also my experience.  My wife is more afraid of catching covid (or the flu, or anything) and bringing it home than I am afraid it myself.   (I’m cautious but not afraid)

      “If you go out and catch something and die, it’s your fault – you didn’t wear your mask properly, didn’t wash your hands enough, didn’t social distance when you should have.  If I go out and catch something, bring it home and you die then I’ll have to live with that”.

      I think it’s an excuse to make me do all the grocery shopping but at least I get to select the junk food.  🙂

       

    • #16762
      Charles Karcher
      Participant

      I was very excited to be immunized in Feb and Mar to the point of buying tickets for an October indoor concert.  Now I am on the verge of canceling the hotel reservation and attempting to sell the ticket.  I wear a mask at all times.  I have not gone to restaurants or movie theaters and have no plans to do so in the foreseeable future.  I was having my groceries delivered and may go back to that procedure soon.

      • #16773
        Jodi Enders
        Keymaster

        I experience the same mental frustration of feeling lost in the memory of my old self and hobbies. Of course, right when we begin planning to get back to that, the world tries to knock us down some more!

    • #16782
      Ann Marie Hetrick
      Participant

      I do my grocery shopping at 6:30 am . I basically have the store to myself. It usually is just a few customers going to work and picking up donuts and coffee. I do not like going anywhere that is crowed and avoid it as much as possible. I do alot of my my shopping online for clothes and other things. I take cellcept and mestinon.

    • #16786
      Carrie McDade
      Participant

      I am able to limit my trips to stores, as my husband is willing and able to do the grocery shopping, etc. When I do go out, I wear an N 95 mask.  I recently had antibody tests done, the IgG and T cell tests, and they both came back negative. This means I have no immunity after two doses of the Pfizer vaccine. I was on 20 mg of prednisone when I had my two doses in the winter. I am on a slow taper, and I am now down to 5 mg of prednisone per day. I have an appointment to get a third Pfizer vaccine this afternoon, and I’m hoping I have a big reaction to it, meaning my immune system is revving up. Wish me luck!

      • This reply was modified 9 months ago by Carrie McDade. Reason: Spelling/grammar
    • #16806
      Linda A HEYS
      Participant

      My husband has MG and COPD and I am asthmatic. We visited our Pulmonologist last week and discussed our attending Sunday Mass at our catholic church. Church is full and few masks. He said it was very risky and suggested TV Mass. He explained because my  husband is on Cellcept  he is very compromised and that although I  am fully vaccinated, I may very well pick it up (in a very crowded situation as this)  and may not feel sick but bring it home to him.  He too is a Roman Catholic and he feels God  would understand.    We think we will attend a weekday Mass where there are far, far fewer people in attendance.  Any other folks struggling with this ??

      • #16807
        Craig
        Participant

        Linda, that’s certainly something that has been an issue for many folks. I find that watching on TV “checks the box” but missing out on the community experience is a big loss.  Attending weekday services is a terrific alternative. One of the churches near me set up a weather-permitting outdoor Mass each week, another has introduced a specific “for those at risk” service where they enforce every-other-row and family-based social distancing and ask for mask wearing.  That’s working for now because the weather has cooperated and people are cooperating, respectively.  If you’re missing the community aspect of attending services, maybe talk to your priest to see if they know of anything like that at a surrounding parish as well, but I think you’re on the right track with the weekday services.

        • #16808
          Linda A HEYS
          Participant

          thank you, I appreciate your comments . I think we probably will stick to a weekday Mass with maybe 50 people well spread  out as opposed to a Sunday Mass with 300  packed in. God Bless

    • #16812
      Deborah A Dortzbach
      Participant

      This continues to be an ongoing challenge. Today I received my 3rd dose of Pfizer vaccine (at the recommendation of my neurologist). I am very grateful for this “boost” and at the same time aware it is not complete protection since I also take cellcept, prednisone, and a biologic for another systemic arthritis in addition to MG. But I am determined to be vigilant, do all that I can, and encourage others to also protect themselves and others (get vaccinated) and be aware of my environment (what are the vaccination rates, the infection rates and trends in my city) and even take risks.  For a time I returned to swimming in a warm indoor pool (it was heavenly and greatly helped my arthritis and sense of well-being.). The environment was controlled–not too many people.  But now I have stopped, because the Delta variant rates are driving up the rates in my city and the pool is indoors increasing the risk.  I think we need to advocate that more places require vaccinated-only admissions, allowing people like ourselves to participate without high risk of infection.  It is very important that we do get out in public–safely. It really helps our sense of belonging and perspective, community, and well-being. I try to think about the fact that risk is cumulative and consider the amount of time, numbers of exposures (people), distance, time of day I visit a store, COVID rates and trends in my area as well as behaviors (people wearing masks?). I now double mask when going out because of the Delta variant. I also visit parks, arrange for picnics with friends, take short walks with friends (often they have to stop and rest with me!).

    • #16816
      Charles Karcher
      Participant

      Received my third shot today.  My county is in the red zone.  I am not going anywhere.  I am contemplating returning to grocery delivery.  I am also canceling a trip for an indoor concert.  I was very excited to book the trip after being vaccinated but now consider the trip too dangerous.

    • #16819
      William Scruggs
      Participant

      I have had three infusions of Rituximab and am still receiving IVIG every six weeks. I have had two doses of the Phizer vaccine. I recently had a SARS COVID-19 antibody test with a positive result of 3.94 U/ml. The problem is nobody can tell me what this means except less that 1.8 U/ml is negative. I plan to get a booster 3rd shot. Does anyone else had such a test?

      • #16839
        BBernadette
        Participant

        I’ve had several antibody tests. My 1st one was 1 month after my J&J vaccine and it was 25 U/ML. The second was 3 months after my vaccine and it was 250. I’m not sure if this was the same type of tests as yours. It said anything above 0.8  U/ml was positive.

    • #16848
      Kelly Criezis
      Participant

      I don’t want to sound naïve but my husband is anxiously waiting the start of prednisone but first his neurologist wants to make sure that all of his scans are clear. They saw some potential cysts on his kidneys So he is now on his fourth scan in past 2 weeks being diagnosed with only ocular MG. His neurologist wanted to do a baseline Brain scan, CT of the chest and then once they saw some shadows he had to do an ultrasound of the chest. Now they didn’t show  anything so he has to do a CT scan with and without contrast on his abdomen. He is getting very frustrated because he wants to start the prednisone which we are hoping will correct the drooping eyelid and double vision and hopefully, as some studies have shown, prevent potential onset of generalized MG. Again we are really looking forward to starting the prednisone and know it is a miracle drug though is not 100%. However I’m starting to get worried about these comments about being more cautious about going out. The doctor did recommend he get a booster after having had both Moderna shots but we both really think it is too soon as I’m not convinced the initial booster didn’t trigger something in his system to bring this on (Though very well aware that I could be wrong). Regardless, we do not regret him getting the first set of vaccines. However we have a daughter going to college and son very active in an intense soccer league and lots of traveling  and now I’m starting to be concerned that my husband should be more sheltering in place once he starts the prednisone. I feel like if he’s careful and masks up and washes his hands we should be all right but maybe you can share if any of you have gotten sick from going out while you are on prednisone or what the risks are. Of course we will reconfirm all our concerns with our physician. Thanks so much this is all just so new to us (Sorry for the long post)

      • #16854
        Craig
        Participant

        Hi Kelly, that’s the question we’re all struggling with I think – what feels safe for us at any time.  When I read your note, I think it’s probably good news that your husband has had both of the initial vaccine doses before he started the prednisone.  I think that would mean he is more likely to have developed antibodies than those of us who were on immunosuppressants when we got our vaccines.  Once he does start the prednisone he should probably be more careful than he is now.  Many of us have been told to act like we’re not vaccinated in terms of masking, distancing, hand washing, etc.      Depending on the timing of his tests, he may be able to get that 3rd shot before starting the prednisone, which in theory will give him better protection than if he he gets if afterwards.

         

        best of luck getting him through the testing and into treatments.  I’m sure it’s frustrating but even prednisone has a laundry list of side effects and it’s important they check those things out.

         

         

         

    • #16855
      Kelly Criezis
      Participant

      Hi Craig thank you so much for your comments they are very helpful!  Best to you as well!

      kelly

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