Can someone with PMR get a flu vaccine?
Posted , 14 users are following.
I was diagnosed PMR in Nov. 2016, and was put on 20mg, Prednisone which relieved my symptoms within a day. Since then I reduced to 15mg, then 10mg, (and a short stint of 7.5mg which left me in pain - Rheumy's suggestion to get off the Pred more quickly... duh, nope), so I informed my GP and went back up to 10mg in Feb, '17, where I have been since. I'm still achy all the time, with bouts of random pain, roaming from shoulder to shoulder, upper arm muscles, occasionally hands, but rarely.
Just prior to the diagnosis, in early Oct, I had my annual physical, flu shot, EKG, blood work... By the third week of the month, I was feeling achy. Flu shots always bring on a response with me, sometimes I even have a low-grade fever. But now that I'm 65, my Dr. suggests I get the current vaccine (killed virus strains). Some years I took the shot, some years not.
So I didn't really think much of being achy. Except the ache didn't go away. My shoulders and arms, upper chest, ribs, were all getting more and more painful, to the point I was trying to stretch out my arms in the doorway, spreading them out in the doorway and leaning into the stretch... I had to stop that! So incredibly painful...
Next stop was my GP. We discussed what could be causing the painful muscles, and by this time, tendons and joints, too. She gave me some low dose hydrocodone (acetaminophen with codeine) and had me come back in a few days. The HC helped a little but pain was getting worse. By time I saw her again, I had read every article I could find on shoulder pain, coming up with PMR. So I suggested this... she was so enthused that I would take it upon myself to advocate for myself, and do some research!!! She said she'd check it out. She had me stay for another round of blood tests. When she came back she fully agreed on my research, saying she thought I was correct! (Yay!) Adding to the blood tests was the SED rate. Here's were it gets weird.
My SED rate was 2.0. In the normal range for this test (< or = 30 mm/h). So I was sent to a Rheumy in Feb '17. This Dr. said I fall into a more rare category, called Atypical PMR. SED rates are, for me, not indicative of the usual PMR test results... but I exhibit all the symptoms.
I just would like an opinion, as to whether I should get the flu shot this year or not. With an auto-immune disease, I wasn't sure. My Dr. decided to hold off. I'll also be inquiring of my Rheumy in Dec. I guess this begs a question, too, where my symptoms flared about a week to 10 days after last year's flu shot... could the vaccine be responsible for my PMR?
Does anyone have experience with this? Thank you in advance!
Marla
1 like, 28 replies
marla.090252
Posted
Thank you everyone for your valuable opinions and experiences! I'm much more comfortable in getting the flu shot now than I was before! I have an appt with my Rheumy my in Dec, and my regular Dr. end of January.I can put up with the low grade fever I usually have in response to past year's flu shots. Certainly no worse than the "sweats" from the prednisone! Sore arm? Again probably no buggy, arms are tender almost all the time!
Guess I'll brave the poke... everyone is right! Better to get the shot than risk the flu!
Thank you all! Marla
patricia38799 marla.090252
Posted
Kendrick marla.090252
Posted
Hi Marla. I got PMR after a flu jab about 7 years ago. I was in great pain but like you, it was relieved with prednisolone. I had to take them for over two years gradually reducing the dose. My rheumatologist wouldn't confirm this even though a blood test was positive! My symptoms were exactly the same so I know it was PMR! I have auto immune problems including Sjogrens Syndrome and am Coeliac so my doctor is trying to get me to have jabs for all sorts of illnesses including flu but I am terrified of getting PMR again and going through another two years of hell. I don't know anyone in medicine who knows of this bad reaction. I don't know why this is the case. I really think research should be in place because this is obviously a problem for people with auto immune problems like you and I. I am scared of getting flu because it could be a lot worse for me and could cause other very serious illnesses like pneumonia etc. So I don't know the answer. If anyone knows of any research that is going on I would love to hear about it I am now 65 years of age so that is another factor to take into consideration. I have heard that the flu jabs in Britain are banned in America because of the preservatives in them. I wonder if this is what causes PMR? Could do with someone finding out for us. Lorraine
Anhaga Kendrick
Posted
Kendrick, if your concern is with the preservative thimerosal or thiomersal (mercury) I think this has been removed from current flu vaccines. I never got the flu vaccine because I was more afraid of the additives than anything, thinking it not a good idea to inject an aging body with a fresh supply of toxin, however small, on an annual basis. I did have the flu shot this year, and so far I have had two colds, one of them being very longlasting and involving an annoying cough. Probably no connection, but it's already been my worst winter for colds that I can remember since I had young children (aka germ factories) in the house! I don't think it had any effect on my PMR, although I have been dealing with a flare since early summer and therefore on a slightly higher dose of pred than I'd needed for some time anyway.
EileenH Kendrick
Posted
In the case of PMR it is probably the case that the flu jab was the final straw that triggered your immune system to go into overdrive. There is no single cause of most autoimmune disease, it is thought that over time various factors affect the immune system and eventually one thing is too much for it. It may be that was a vaccine - but it could equally well have been a stressful event or flu itself.
Many people who have PMR also have another a/i problem - and Sjogren's is not unusual, in fact, Sjogren's can cause similar symptoms as can coeliac disease. PMR is just a name for the symptoms and they can be caused by a range of underlying disorders. There are no blood tests to be positive - the ESR and CRP being raised only shows there is inflammation somewhere, not that it is definitely PMR as opposed to something else.
No-one is going to fund research as narrow as that - but every adverse reaction to a vaccine (or any other medication) is logged during clinical trials and there is also a post-registration notification system in place in the UK (the yellow card) and the USA (direct to the FDA) for any subsequent adverse events. What is more likely for us with an autoimmune disorder is that the full benefit won't be achieved in response to the vaccine - but every little helps.
Not all flu vaccines have thimerosal (mercury) in them. It is in multi-injection vials to prevent cross contamination but not in single shot prepared needles. You have only to ask. You need a mercury-free killed vaccine - that's all.
Kendrick EileenH
Posted
I will ask for a jab without mercury as you suggest and hope for the best. I will let you know how I get on . Lorraine
marilyn80867 marla.090252
Posted
Hi Marla it's nice to follow this thread and find other people who have PMR start after a flu Jab. My doctor says it can't happen but I know that's when it started. Had a really high temp about three days after the flu jab and was really shaking. I couldn't warm up for quite a while and then the pain in my pelvic area and my shoulders and the top of my arms started. I could hardly get out of bed and was in constant pain. A nurse friend told me to get checked out and I was diagnosed but my doctor still insisted it couldn't happen like that. I have done some research (you have to do it yourself these days) and found as some others have suggested that they put aluminium or mercury in the vaccine to make your imune system to react to the dead flu vaccine. I'm getting down to 3mg prednisone now thank goodness but have been too afraid to have any further flu vaccines. Noone seems to be able to answer that one for me. Don't want to start this horrible cycle again.
EileenH marilyn80867
Posted
"My doctor says it can't happen"
I do wish that doctors would put their brains in gear before making such pronouncements! It isn't uncommon for patients to develop PMR soon after a flu shot - and even more likely with the shingles shot. However - he is right in that it on its own probably doesn't cause PMR. Many different things put stress on the immune system and eventually one is the final straw that tips it over the edge. It can be emotional stress, physical stress, infection or injury - all sorts of things.
Many people develop PMR having never had a flu shot - I did - many millions of others have the flu jab and never have a problem and many PMR patients have the flu shot without problems with their PMR (I never have since I started having it). I have problems with PMR if I catch the flu though!
Anhaga EileenH
Posted
My husband came home from a doctor appointment today with a prescription for Shingrix for him - and one for me. I guess he didn't think to tell her I've never had chicken pox. I guess Shingrix will be okay for him to get. I wouldn't let him have Zostavax shot, for my sake.
BJeanJellyBean marla.090252
Posted
I just read an article (I think if was from the Mayo Clinic) that suggested that PMR patients should receive flu shots.
Just a personal note. I was diagnosed with PMR, the first time. 8 yrs before I had my 1st ever flu shot. While I just relapsed over the last couple of months I don't see a connection with flu vaccines. My last flu shot was in Oct.