The Lupus Forum banner
1 - 20 of 22 Posts

·
Moderator
Joined
·
4,438 Posts
My godmother of 90 had hers on Friday... I asked if I could possibly have at the same time as CEV and a carer.... but the GPs computer couldn't cope with that, so hoping it will be soon. Not sure how effective they will be with a suppressed immune system and I doubt anybody will be able to give me that information prior to the vaccination....guess any cover is better than none.

My dad, who is 83 gets his on Tuesday.
 

·
Administrator
Joined
·
10,196 Posts
Discussion Starter · #3 ·
Hi Claire,

Age plays a role in effectiveness also, just like with the flu shot. Glad to hear your godmother and dad were both willing to get the shot. It must be a relief for you to know they will have some protection against this virus.

Rheumy said it will be less effective for us but if you do get a case of Covid it shouldn't be as serious. Timing is key with medications that deplete your B cells such as Rituxan. You want to have it done when you have your peak antibodies. Keep in mind it is 2 doses and it doesn't kick in for about 2 weeks. My window is too tight so my infusion will need to be delayed a week or two.

Take care,
Lazylegs
 

·
Registered
Joined
·
1 Posts
Hi,

Im scared to get the vaccine (I will though). I have sle and I am unusually sensitive to everything. Are there any true studies on lupus and vaccines? Any one better than the other?

I’m concerned about lupus and asthma. What if you have a reaction? Then you need the hospital full of the virus.
 

·
Administrator
Joined
·
10,196 Posts
Discussion Starter · #5 ·
There have been no true studies. They are however examining cases to see how Lupus patients have faired. It will take some time since we are all on different medications and we don't all experience Lupus in the same way. In the US the recommendation is due to be released in March.

Neither the Pfizer or the Moderna are live viruses so doctors feel they should be safe. The live attenuated viruses need to be looked at more closely. In my area you get whatever the government sent at the time. Maybe later when the vaccines are more plentiful you will.

My daughter has terrible allergies and asthma and had the Moderna one. The site had all the possible precautions on hand. Later at home she had her Epi pens handy just in case but didn't need to use them. She is having a robust response with the second dose but no asthma.

Take care,
Lazylegs
 

·
Old Timer
Joined
·
1,602 Posts
Guess I’ll be first. lol

My wife and I received our 1st dose of Pfizer on March 4th. I had mixed feelings about side effects but having a good chance of death if I contracted Covid gave me no option. I have no doubt results will vary but here is my experience so far.

8:15 am - getting the injection was painless (I hope she gives me the 2nd dose too!) No issues all day.

Days 2-4 -every side effect listed except headache but felt like a bad flare, not sure which happened really. In bed for 3 days running a 101.5 temp and chills, very weak exhausted. I slept most of the 3 days.

I felt a little better every day after and almost normal a week later. My 2nd dose is on the 26th so I’m hoping I don’t have the same or worse experience after that one, but it is what it is and I’ll have a big weight off my shoulders when I can leave my house again to do something other than get food, prescription, and required in person doctors visits. I will post my results around 2 weeks after my 2nd shot to give you the full story.

FYI - my wife didn’t have ANY side effects but is worried she may on the 2nd shot. She doesn’t have Lupus, she just has me! lol
 

·
Administrator
Joined
·
10,196 Posts
Discussion Starter · #7 ·
Thank you for sharing your experience Tom. Maybe since you reacted with your first shot you won't with the second. I've only heard of a few people with Lupus getting the shot and so far most have had few side effects, but any that have sound similar to a flare to me.

Take care,
Lazylegs
 

·
Registered
Joined
·
423 Posts
Hi
I’m afraid of having the vaccine because I can’t take any meds for Lupus/RA and the rest. All I get is a steroid injection now and again and that gives me hip too. Don’t know what to do
Keep safe
Wolf1
 

·
Administrator
Joined
·
10,196 Posts
Discussion Starter · #9 ·
You are not alone in being on the fence with what to do. Cancer patients, transplant patients, MS patients, and the list goes on are all wrangling with the same decision. Personally I am more afraid of Covid 19 since I am on B cell depletion therapy. I am willing to take the risk but my decision only came after consulting with my doctors, family and doing as much research as I could find.

Good luck making your decision.

Lazylegs
 

·
Old Timer
Joined
·
1,602 Posts
I wasn’t told by my doctor to go off any of my medications and I don’t know anyone who has.

I’m now fully vaccinated and only dealing with joint and muscle pain (more than my usual). I’m very relieved to feel safe again, to be able to go outside and not have to worry. The pros certainly beat the cons for me in my decision to get the vaccine.

I did have something very unexpected happen for me after the first dose. Now one thing I was curious about after reading how the vaccine worked was could it help with autoimmune issues in the process. For a few months before getting the vaccine I was having serious breathing issues (shortness of breath sometimes close to losing consciousness kind of issues) which completely disappeared the next day! I don’t know if it will be permanent, (I’m having tests done to check for any issues) but it’s a huge thing for me and getting the vaccine was the only difference. The pros have definitely been worth it.

Lazylegs, did your daughter have any change in her asthma and/or allergies after being vaccinated?

I’m stumped on hearing about pausing medications as I’m on around 8 a day and after checking with 4 doctors, none paused me on any of my meds ...

Good luck everyone, I’m happy with my decision.
 

·
Administrator
Joined
·
10,196 Posts
Discussion Starter · #11 ·
Tom initially the thinking was to remove the B cell depletion drugs or at a minimum to delay them. The snag was you weren't on them unless other medications hadn't already been found ineffective for you and if delayed you might flare so doctors were left to make their suggestions on a case to case basis. Instead they came out with a schedule for timing the drugs so you take them when your B cells would be at their highest point before depleting them once again. A trial is being done now to see if the vaccines will be effective or not for these patients.

My daughter did well with her asthma and didn't have an allergic reaction. She did however have a strong reaction to her second dose. The doctor actually ran a covid test because it went on so long.

Take care,
Lazylegs
 

·
Junior Member
Joined
·
91 Posts
Hi everyone!

I have had both of my vaccines. I never had any reactions to either vaccine. I hope everyone is doing very well and enjoying spring's beginnings.

All The Best,
Sage Hen:)
 

·
Moderator
Joined
·
4,438 Posts
Hi, just wanted to pop in to say that I was asked to do a random antibody test via a research hospital here ref Covid.
I have had both doses of vaccine and wondered if I would generate any antibodies given being on mycophenelate and low dose steroids, plus an array of other meds. I was pleasantly surprised that the result showed I had made antibodies and the result came up quite quickly, which is encouraging. The test doesn't tell you how high the antibody cover is, so it is prudent to still be careful.... but it was nice not to see a blank space where the line showing positive should be. I also had a very faint half a line in the place where exposure for covid 19 is measured via different antibodies, I think that was not a valid line as it didn't go totally across the stick. Anyway just thought I would share..... keep well everybody.
 

·
Administrator
Joined
·
10,196 Posts
Discussion Starter · #14 ·
Congrats Claire. This calls for an antibody party.

I had my first shot this week. The second is scheduled for 3 weeks from now. Three weeks later I begin my B cell depletion treatments giving my B cells 3 weeks to communicate with the T cells to do their thing. Like yourself I am interested to see if I will be able to make antibodies or not. The testing is being discouraged here but it doesn't hurt to ask anyway.

Crazy to say but getting the shot was exciting. It was the first time in over a year I saw the inside of a store. I remember when it was a drag to have to go to the pharmacy once again.

Take care,
Lazylegs
 

·
Registered
Joined
·
423 Posts
You are not alone in being on the fence with what to do. Cancer patients, transplant patients, MS patients, and the list goes on are all wrangling with the same decision. Personally I am more afraid of Covid 19 since I am on B cell depletion therapy. I am willing to take the risk but my decision only came after consulting with my doctors, family and doing as much research as I could find.

Good luck making your decision.

Lazylegs
Thanku Lazy legs. Still afraid to have it. Waiting for my specialist to phone me and have a chat about things
Keep safe
Wolf1
 

·
Junior Member
Joined
·
91 Posts
Hi friends, My Rheumy wants me to take a third Covid shot. Has anybody else taken theirs? I didn't have bad effects from my first two Phizer vaccines, but am somewhat hesitant to take yet another. Any feelings here on this matter?
Thank you,
Sandra
 

·
Administrator
Joined
·
10,196 Posts
Discussion Starter · #17 ·
Hi Sandra,

I understand your concern especially since this is a new vaccine. The trials however have shown positive results so far. I haven't had it done in the past but some people routinely get a booster for other vaccines to help make them more effective. I plan on getting mine next month. It has to be timed with my next infusion otherwise I would have already been trying to schedule mine. I figure even if it doesn't work for me due to my having B cell depletion therapy I would have tried to stay as safe as I could.

My daughter had hers on Monday and is doing well. The side effects are similar to the first shot so far. The most difficult part has been having to stop one of her medications prior to the shot and she needs to stay off for the week after. No flare so far just a slight increase in fatigue.

Take care,
Lazylegs
 

·
Junior Member
Joined
·
91 Posts
Hi friends, My Rheumy wants me to take a third Covid shot. Has anybody else taken theirs? I didn't have bad effects from my first two Phizer vaccines, but am somewhat hesitant to take yet another. Any feelings here on this matter?
Thank you,
Sandra
Hi Lazy Legs,
Thank you, for taking time to reply to my question. I am glad to know you had no bad side effects from your first vaccine. Glad to hear your daughter is doing well also. I had a lot of arm soreness this time, with fatigue and bowel issues. I still consider myself lucky not to have had worse symptoms. I consider the small amount of discomfort a bonus, not to get the virus itself.
 

·
Junior Member
Joined
·
91 Posts
I received my 3rd shot on the 17th and have had no side effects this time (other than a sore arm). I haven’t read or heard an efficacy percentage after 3 shots yet but I’ll continue to follow the recommendations. So far so good I guess. lol
Hi Tom, so glad to read that you are doing fine and had no side effects from your third vaccination.
 
1 - 20 of 22 Posts
Top