The covid vaccine

[UkrainianTracksuit]

Finally got my first appointment for the weekend. Yay! The hospital did all the booking for me!

They asked if I had any caregivers and if they lived in the same household. I said yes though I know he's basically done no caregiving for me  though he is my "caregiver."

Because of his caregiver status, he was eligible to be vaccinated the same day.

It's a Pfizer shot, so he's on board with that.

Well have a very interesting Easter on Sunday then! 

[MooseMom]

Oh, wow!  That's great news all around!  Be sure to let us know how you are feeling after you get your shot. 

[UkrainianTracksuit]

We both got our first shots of Pfizer yesterday.

Sore arms and headaches started last evening, but today we feel awful. My injection site is swollen up BIG. We both feel feverish (thus chills), muscle pain (I have bad, bad, bad bone pain, but that happened the last time I got bombarded with vaccines, so not a worry) and headachey. I have nausea, but nothing has come of it.

Ah, it's Easter, so we can lay in bed.

[MooseMom]

I'm sorry you are both feeling unwell, but this is a good reason to just flop around and do absolutely nothing!  Feel better soon!

[kristina]

We both got our first shots of Pfizer yesterday.

Sore arms and headaches started last evening, but today we feel awful. My injection site is swollen up BIG. We both feel feverish (thus chills), muscle pain (I have bad, bad, bad bone pain, but that happened the last time I got bombarded with vaccines, so not a worry) and headachey. I have nausea, but nothing has come of it.

Ah, it's Easter, so we can lay in bed.

Hello UkrainianTracksuit, I am very sorry about your Pfizer-reaction and "it" may continue another few days, as it did with my husband and me. We both also suffered from headaches and lethargy, muscle pain etc., but both our BP was alright, so we could only conclude, that the headaches were a result of the Pfizer-vaccination.
Best wishes, take great care and I also want to send you my Happy Easter-wishes from Kristina.

[UkrainianTracksuit]

Thanks MM and kristina.

I'm completely back to normal. My husband on the other hand...

He has developed some sort of a rash. It's itchy, red, and sore.

He's driving me to the hospital today because I have a small procedure booked and then he's going to swing by the walk-in clinic to see if he can at least get something to soothe it at all.

I'll try to post an update if I learn anything, but we'll see how I feel. The good news in all this is that (and this is generally known, so don't get angry for stating this  ) the antibiotics prescribed (for me) are completely okay after such a short time after the vaccine.

[Qswee]

I just had my first shot 2 weeks ago, I got moderna. Will just wait for the 2nd dose. No side effects at all

[MooseMom]

I just had my first shot 2 weeks ago, I got moderna. Will just wait for the 2nd dose. No side effects at all

Good to hear!

[UkrainianTracksuit]

Had tennis elbow surgery so excuse the one hand typing. Lots of antibiotics for such a small procedure. Did not expect this kind of pain.

Husband has shingles. It seems it is a thing that has happened with Pfizer but not related to the vaccine at all. It is question of causality and everyone says it is not cause/effect just coincidence. 

He is happy to have gotten vaccinated still but pissed off at the same time. Not about the vaccine, but the level of care. Doctor told him, "oh you were going to have shingles anyway and this came up now" to which he said bullsh--t! He is a relatively healthy man not close to senior citizen years so I understand him on that point. He has not started prednisone either (waiting for time after the vaccine). If they said it was inflammatory disease related - - - OK! - - but no.

Doctor said stress levels then could contribute to it. Husband said eff no (in those full words) cause he has had stress beyond this and his health never suffered. He is not stressed.

Doctor asked if he was vaccinated for shingles. He said how? He is not of age to have it.

The attending physician had to consult with the local infectious disease doctor. Said it was ok to take Valtrex as it had been a few days after the vaccine but it is not as if there are guidelines on this that he was aware. Still it is safe to give the vaccine after completion of antivirals but who knows if shortly after. He was prescribed gabapentin too.

Husband is staying away from me. I am vaccinated against shingles but not completely sure of efficacy. He is cordoned off in another room.

Like I said my husband is ok to have the vaccine and does not blame it. Who knows how immune systems will react. What he did not like was how the medics just seem to circle the wagons and passed him off as he would be getting shingles in the very near future and it must be stress. Probably has a red flag beside his name now as he dropped f bombs at the doctor. One English word he says great.

[MooseMom]

What exactly happens during tennis elbow surgery?  I've heard the term all my life but confess to not knowing what is entailed.  I hope you feel better soon and that the pain subsides quickly.

Shingles?  Boy, that's out of left field!  Is your husband badly affected, or is is a relatively mild case?  I don't know what triggers it in people, although I supposed as we age, our immune systems start to weaken, enabling a sleepy virus to rear its ugly head.  I've been vaccinated against shingles and assumed I'd be protected, but after this covid kerfuffle, I may not have any protection at all. 

I hope your husband feels better soon.  He's got a lot on his plate right now.

[UkrainianTracksuit]

With just local anesthetic the surgeon cut into the bony side (outer) of the elbow. Then once in there, he cut out the damaged chunk of tendon and then reattached the normal part back to the bone. I am told cause I am high risk for complications (immune status) and worried about blood flow, the doctor took off some chunk of bone too. It may be a short surgery but I was not advised that this would be painful so I did not think much of it. I am an idiot.

My friend even said my small procedures have to sound elite. "Tennis elbow" versus something like a Bible bump.

Thankfully it is just a mild case but it is painful enough. He thought it would be some generic rash and he would get a corticosteroid cream. Apparently he says the burning feeling is the worst. His immune system probably is just angry at him for all sorts of reasons lately.

Like you, I am vaccinated against shingles too, but also like you, with this whole covid thing, I am unsure how much I am protected. I am not taking the risk so he's on his own here. Obviously I leave him food and stuff, leave fresh linen and handle the dirty stuff gloved and masked.

[Riki]

When my mom called for her appointment, she asked if, since I am a dialysis patient, if I could get my shot at the same time.  After asking a few people, the answer came back as no.  I was eligible to call and make my own appointment a week later.  She got hers on May 4 and I got mine on May 12.  Why they couldn't have done us at the same time, I've no idea.  Now we are just waiting to hear about our second appointments.  We got different vaccines, so we can't have our second doses at the same time either.

[MooseMom]

When my mom called for her appointment, she asked if, since I am a dialysis patient, if I could get my shot at the same time.  After asking a few people, the answer came back as no.  I was eligible to call and make my own appointment a week later.  She got hers on May 4 and I got mine on May 12.  Why they couldn't have done us at the same time, I've no idea.  Now we are just waiting to hear about our second appointments.  We got different vaccines, so we can't have our second doses at the same time either.

Hiya, Riki!  It's great to "see" you!  I hope you and your mom get your second shots soon.

[frugallyzing]

Already got my first shot of Pfizer last week, so far so good didn't feel any side effects

[PrimeTimer]

Going for a 2nd attempt. As far as immunosuppressants go, I currently take Prednisone and Methotrexate for Sarcoidosis. My doctor wanted me to try to taper the Prednisone down from 20mg/day to 5mg/day and then maybe completely off. I tried tapering down to 10mg of the Pred for 2 weeks but began coughing/choking/sputtering so went back to my usual dose. I suspect the fact that it was allergy season for me is what made it harder. I am going to attempt to taper down again and then hopefully, go completely off the Prednisone. I probably will go back on the Methotrexate.

Since my husband has passed, I've got no choice but to move in with my brother and his wife and 2 teenagers. I will ask but at the moment I do not know if they've had their Covid vaccinations. In an email my brother asked if I had mine, I said no. I didn't hear anything back from him on this but I wonder if he wants me to be vaccinated before moving in. But I think I should get the vaccine. I have been planning on it anyway but having Sarcoidosis makes it difficult. My doctor said I would need to be off these meds 2 weeks prior to each dose. Since they advise that you wait 3 weeks in-between doses, that means 5 weeks of being off my meds. If I'm figuring that right.

Anyways, if not for myself I think it is the right thing to do. I want the vaccination to help protect my brother and his family. So I've begun the taper-down process...hope I succeed this time.

[UkrainianTracksuit]

Oh Pea Tea, I really hope it works this time and you can get vaccinated! Fingers crossed for you! 

I received my second shot of Pfizer exactly 28 days after the first. Once again, I will called by the powers that be and they arranged it for the next day. Pretty rad.

[PrimeTimer]

I am on Day 3 of my attempt to taper down on the Prednisone. I will skip the Methotrexate this week. Kind of wheezy today but don't necessarily think it's because of the taper down. We'll see. Meanwhile, I made my two appointments for the vaccine. My sis in-law said they've all been vaccinated except for my autistic nephew -he refuses. But they said they would get him vaccinated if I want. I'd hate for him to go thru any trauma. Being autistic he is very sensitive about things. He's a great kid and I love him and would absolutely hate to put him thru this. I do think he should be vaccinated, just for his own safety but I do not want it to be because of me. I don't want that hanging over my head. Hope this isn't too selfish of me.  Anyways, he doesn't go out much so he is low risk. I think it's better if I can be vaccinated. Just hope I can do it before I move.   

[kristina]

I am on Day 3 of my attempt to taper down on the Prednisone. I will skip the Methotrexate this week. Kind of wheezy today but don't necessarily think it's because of the taper down. We'll see. Meanwhile, I made my two appointments for the vaccine. My sis in-law said they've all been vaccinated except for my autistic nephew -he refuses. But they said they would get him vaccinated if I want. I'd hate for him to go thru any trauma. Being autistic he is very sensitive about things. He's a great kid and I love him and would absolutely hate to put him thru this. I do think he should be vaccinated, just for his own safety but I do not want it to be because of me. I don't want that hanging over my head. Hope this isn't too selfish of me.  Anyways, he doesn't go out much so he is low risk. I think it's better if I can be vaccinated. Just hope I can do it before I move.   

Hello PrimeTimer,
I am really glad to "see" you and very much congratulate you on how you approach your future in this difficult and very sad situation ...  you are very much admired for this and I can well imagine how hard it is for you right now ... and ... I was just wondering if it would be a good idea to make an appointment for your nephew to see his GP/doctor, who could check-up on his health etc. in this difficult time and perhaps the GP/doctor could also explain to him the importance to get this vaccination in order to protect his life as much as is possible? This action could first of all take away the attention from you as a vulnerable person in a fragile health-situation, but it could also point out to your nephew, that everyone's life is at risk and therefore this vaccination is -  as far as we know -  the only positive way forward?
I wish you all the best and send you my kind regards from Kristina.

[PrimeTimer]

Anyone have an opinion or experience with the Johnson & Johnson vaccine? Apparently it is a one-time jab. I have attempted twice now to taper down/wean off my meds as my doctor instructed me before being vaccinated but, it ends in disaster and I have to go right back to my usual dosing.

Since my husband has passed away I am having to move in with my brother and his family in another state. They have since all been vaccinated. Every time I taper down tho, I start coughing and choking and my O2 level drops like a rock. I am alone right now and having to exert myself with sorting thru stuff and clean and pack. Cannot do it if I can't breath. So now I am thinking of getting vaccinated after I move, when I can mostly rest and not be exerting myself (thus hoping to avoid the breathing problems and O2 drops). But my SIL would like me to look into getting the one-time jab offered by J&J. However, I am a bit concerned about that because they say some people have ended up with Guillain-Barre' Syndrome from the J&J vaccine. I've enough problems as it is. I do not need anymore. So, I am just wondering if I am doing the right thing by passing on the J & J vaccine. I am not opposed to getting vaccinated, just not really wanting the J & J and as for the others (Pfizer or Moderna) I do think I need to wait until I know that I won't be exerting myself.     

[iolaire]

PT on a webinar right now a doctor described the side effects as the type of things that only come out after you have vaccinated hundreds of millions of people.

That is along the lines of what I feel - there are risks that exist - but those risks are very low and compared to other random household risks end up being lower.  My personal feeling is that everyone should be vaccinated.  And I support the CDC type view of the best vaccine is the one you get. 

As a side question does your doctor feel its critical you taper your meds for vaccination?  So far in the transplant community they are not recommending med changes in anticipation of vaccination.

She also just mentioned that Guillain-Barre' Syndrome is a side effect of many vaccines, including the flu shot.

[PrimeTimer]

Thanks for responding, iolaire.  I definitely want to get vaccinated. When I first read up on Sarcoidosis, it has a person thinking it is no big deal and that only a very small percentage of patients end up with the more severe, chronic form. Well, that is what I have. Stage Four. So when I think of Guillain-Barre' Syndrome as being a "low risk" of the Johnson & Johnson vaccine, I don't know that people like me, who already have a severe health problem, should get that particular one-jab vaccine. True, any vaccination comes with risks but this whole Covid vaccination issue is still relatively new to the world. It is scary.

As for tapering down on my meds, yes, my doctor definitely wants me to do that. He said enough of my immune system needs to come back so it will create anti-bodies from the vaccine. Maybe he says that because Covid attacks/destroys the lungs and the Sarcoidosis has already caused permanent scarring in mine. I am breathing on just 49% lung capacity as it is. You get down to 30% or less and your life expectancy is less than one year.   

[UkrainianTracksuit]

I agree - the best vaccine is one you can get.

The thing with the J&J vaccine that gives me pause is that it has a 67% efficacy. So, still good enough, and it will provide some protection, most importantly in the case that *knock wood* you ever get ill.

Is your doctor helping you with a taper down at all? It seems like with your serious condition and playing around with important medications, you kind of need "a hand to hold" or more of a strategy. Are there any suggestions that they could give? They must know your O2 would drop like heck without your pred.

The whole discussion over Guillain-Barre arises at flu shot time every year and yes, it does happen to people. I got a big warning about it when I had to get vaccinated for HPV. Do you know if any family members have had that reaction? Apparently, that is a good indicator of your risks. The doctor at the webinar today said that Guillain-Barre hasn't shown up post-mRNA vaccinations. You're just in such a difficult spot.

Are you trying to taper down to below 20 mg? It is my understanding (side knowledge) that doses below the 20 mg don't particularly affect immunity. Does your doctor have an ideal dose for you to safely get vaccinated and breathe?

Since the efficacy may be in question (again, who knows, you'll be like us), you'll want to practice social distancing, mask wearing, etc, still. The vaccine may trigger other types of protection (it's more than antibodies). Just continue to be as safe as possible.

[PrimeTimer]

Are you trying to taper down to below 20 mg? It is my understanding (side knowledge) that doses below the 20 mg don't particularly affect immunity. Does your doctor have an ideal dose for you to safely get vaccinated and breathe? -Ukrainian Tracksuit


Yes UT, I am trying to get down to at least 5mg. My doctor said if I started having difficulty then to go back to my usual 20mg. Right about 14 days into being down to 10mg is when I have problems. I am thinking tho that after I move and spend time just sitting/resting and not needing to exert myself, that I could maybe try it again. But I'm having (well, trying) to do all kinds of physical things right now to get ready for my move. Not easy, not even at 20mg. At least I am not around anyone. I have food and meds delivered and they leave it at my door and step away. And when I move it will be about a 2 day drive but we don't have to stop and eat indoors anywhere. And where I will be living is far out in the country outside a tiny town -no people or crowds there. I am thinking this will afford me time to try the taper down again without too much risk of contracting Covid. And if I do ever get Covid, I am going to sign a DNR. 

[Simon Dog]

My MD had an interesting experience as a renal fellow.   His attending had a patient on 5mg prednisone only, doing well with the transplant, no rejection.

So, they decided he could probably get rid of that "insignificant" 5mg dose.   They did and the patient lost the kidney.

[UkrainianTracksuit]

My MD had an interesting experience as a renal fellow.   His attending had a patient on 5mg prednisone only, doing well with the transplant, no rejection.

So, they decided he could probably get rid of that "insignificant" 5mg dose.   They did and the patient lost the kidney.

And then there are us patients on a prednisone free protocol. I was weaned off the 5 mg maintenance prednisone 6 months (or around there) post-tx and my function has never dipped below 90 eGFR. Not one size fits all.