Shingles Vaccine

[SueAB]

My PCP suggested I get my shingles vaccine, but a friend with MS was told by her neurologist not to get a shingles vaccine. Have any of you received this vaccine?

[WAshingtongirl]

My PCP said I shouldn't get it or any live virus because of MS. Haven't asked my neuro. I had a relapse following a non-live booster/immunization a couple of years ago, so I tend to stay away from them. But that's just me and my experience. Interested in hearing what others have to say about the shingles shot.

[Fancy1959]

SueAB, hello, I'm Fancy1959. I haven't spoken to you before so I wanted to welcome you to this wonderful chat room! We've become more of a large extended family then a chat room! Moving on to your question, generally speaking it is always best to follow your neurologist directives. If you had reasons to have a strong opinions that directly disagreed with that opinion, you could ask him/her to explain their opinion to you. And you could always seek a second opinion from your family doctor.

To be honest with you, I've had the shingles vaccine. I didn't even think to ask my neurologist, but let me stress to you that doesn't make it right or safe. The shingles vaccine was offered to me free by my place of employment so I took it. Perhaps I just got lucky as I had it several years ago and I had no negative side effects from it. Why I took it was because my mother got the shingles when she was about 90. I've never seen such a strong woman brought to her knees before. She never really recovered from the shingles as she had open sores for at least 6 to 7 months and was in extreme pain the entire time. She couldn't get comfortable no matter how she sat or layed down. Then the nerve pain never left her. She died about four months short of 93 scared up and still in pain from the shingles. The shingle virus to her was devastating so when it was offered to me I jumped at it. I had chicken pox as a child. If you have more questions I could possibly ask just reply back to me. I don't know if I helped her and confusion to your question but what I told you was what I did. That doesn't make it right or even safe, it just is the truth of what occurred with me.

[jimeka in reply to Fancy1959]

Oh your poor mum, my mum got it just on her face on one side. It affected her vision and she was quite poorly with it. I can never remember which way round it goes about chicken pox and shingles, I know you can catch one from one or the other from one or the other. There was a discussion on here about ms and live vaccines about a month ago when people were asking about the flu shot. Maybe ask MSAA and see what they have to say. Anyway Sue hopefully you can share with us what you find out. Thank you Jimeka

[WAshingtongirl in reply to jimeka]

Your mum got it too? Wow. I'm sorry Jimeka. My understanding is that you can get shingles if you had chicken pox. I'm not sure what brings it out, but my father-in-law and sister-in-law said it surfaced for them after extremely stressful times. I had chicken pox as a kid and sure hope I don't get shingles. It sounds so painful.

[Hidden in reply to WAshingtongirl]

The shingles virus stays dormant in your body, if you have had chicken pox you have this virus in your body (I think our nervous tissue if I remember correct).

Just because you had chicken pox doesn't mean you will get shingles. Shingles is very painful, similar poc marks, and cause loss of function in certain parts of the body. The reasons the believe the virus becomes active is often due to stress, & is more common as we age.

I would check with you MS neurologist.

Personally I am declining any further vaccines, because no matter the way the virus is in the vaccine (live mutant, protein coat only, or dead) the point is for your body to exhibit an immune reaction so if you get this virus on the future your body will recognize it and fish that infection.

Because it promotes the immune response, I worry this is another way MS could take advantage and more immune system and cells will be active and could attack my healthy cells and not just recognize and kill the virus.

I'm waiting to check with my new neurologist, but won't see her until Dec 2.

All the best!

[WAshingtongirl in reply to Fancy1959]

How sad, Fancy1959. I'm sorry about your mom. My husband's father and sister have suffered with it. I've heard it is extremely painful.

[CalfeeChick CommunityAmbassador]

I got the shingles vaccine many years ago, long before my DX. A nurse friend of mine asked me about the vaccine when I told her about the ms. She was immediately suspicious of vaccines. Evidently, we should all check with our Neuro docs before getting any vaccine.

[agate]

I've had the shingles vaccine--several years ago. I had no problem with it.

[purpletustin in reply to agate]

I had shingles in my 30's and ended up in hospital. I'm 71 now and remember it well. At same time developed pleurisy.

When shot was approved I immediately got it.

Dear, active 93 year old friend battling it last 2 years.

As always, ck with doc

[erash]

NMSA does not recommend live vaccines. Zostavax (shingles) is an exception because of people having pre-existing chicken pox. BUT if you are on a med that suppresses you immune system: steroids, Gileyna and several others, you should not have Zostavax

[jimeka in reply to erash]

Hi Erash, what time is it where you live? Shouldn't you be asleep. It's 9.20 am here, abit tired from last nights activities. We were supposed to have 30 family members for tea last night but only 20 of them showed, so we had lots of left overs. My daughter makes the most amazing brownies and Oreo balls, of course they are anti inflammatory!!! Lol. The fireworks were a success and everyone was able to get rid of all of their rubbish on the fire. I have made 35 cushions in the past 2 years, but I am slowing down now. Get those paint brushes out before it is too late. Don't forget to share so we can all see your hidden talent. Were you a nurse of some description because you seem very knowledgeable. Have a good day, here we have rain, wind and it's only 2* cheers Jimeka

[erash in reply to jimeka]

I don't sleep enough. Despite sleep drugs. Another MS symptom: insomnia? It was probably 430am when I wrote that.

Are you sharing your daughter's "anti-inflammatory" Oreo Ball recipe? Yummy 😛

I am/was a Family Nurse Practitioner and university professor...and a few brain cells still light up occasionally 🙃

Keep working on those cushions! I'm getting the paint brushes out today! Have a wonderful rest of the day/evening 😊

[WAshingtongirl in reply to erash]

Did someone say Oreo Balls? 😋 And a bonfire is a great way to get rid of trash. Can't do that where I live. Our neighbors would probably stand armed with hoses, hoping we didn't burn their houses down along with our own. Living in the country or out on a farm allows you a few more freedoms we 'city folk' can't do. Yes, Erash, paint away! Sounds like a lovely way to spend a Saturday. I think I will be cleaning. 😜 And is it that cold in the U.K. Already, Jimeka? Brrr...Just ☔️ here today.

[WAshingtongirl in reply to erash]

One of my favorite PCPs was a nurse practitioner. Loved her! I'm sure your patients miss you as much as you miss them. A question: Did you tend to catch the numerous 'bugs' your patients came to see you for? And if so, did that affect your MS at all?

[erash in reply to WAshingtongirl]

No. I seemed to have built up a resistance. Knock on wood 🔨

[WAshingtongirl in reply to erash]

Thanks. I rarely caught anything either. Must be our exceptional immune systems. 😉

[jimeka in reply to WAshingtongirl]

I hope both you Tutu and Erash continue with your good immunity. I never had a cold until this time last year, long may it continue.

[erash in reply to WAshingtongirl]

Tutu, were you in healthcare too? Maybe I missed that in one of our conversations...

[WAshingtongirl in reply to erash]

No, not me. Someone else here is/was a nurse, I believe.

[greaterexp in reply to WAshingtongirl]

I was a nurse, but that was 150 years ago. When I went to nursing school, we still used glass thermometers in some facilities!

[erash in reply to greaterexp]

Greaterexp, I remember that 🤒

I started out 150 yrs ago as an Army medic. If you count the job I had in high school as a waitress in a hospital coffee shop, I've been in healthcare 200 yrs. 🚑🏥 😊

[greaterexp in reply to erash]

You're just getting broken in.

[WAshingtongirl in reply to greaterexp]

I used the 'ole glass thermometers on my kids when they were little. Guess I'm over 150 too. 👳‍♀️

[jimeka in reply to erash]

Erash, have you seen the latest art contest , the winner of November, what an inspiration. MSAA contest, have a look, I think it might inspire you. Let me know what you think.

[Eleyne92]

My neuro said not to get it. I don't remember her precise reason, but she's not comfortable with it for her MS patients.

My grandmother got shingles, back in the early 80's, before there were vaccines or treatments. I know she was miserable, and some of the pain never left her.

[Jesmcd2 CommunityAmbassador]

It's almost a catch 22. Don't take it the shot and get the shingles and live with more pain than we already have? Or take the shot, and what? What exactly is the down side here? LOL

[rogerwil]

My neurologist said that I should get the shingles vacine, I did and that was 1 year ago. NO problems with it.

[gradma289]

I received the shingles vaccine after watching my mother and grandmother experience shingles. I had no side effects after the inoculation. I have lived with MS for 52 years and love to travel, volunteer and shop! Gradma289

[DogMamma]

Thank you all for your input. ALL your responses have given me much to think about regarding shingles vaccine for me, as well as flu shot for husband this year. My Mother had shingles down her left arm during the 1970's. Horribly painful! Yes, left arm is unusual! I had chicken pox when I was 3 and I remember! So scared to death will get shingles! Thought seriously about shingles vaccine, but scared of that too and how body will react because of the Fibromyalgia. I have always had reactions to vaccines, even Flu shot. But I must have one every year due to Asthma. Now, very concerned about husband with MS receiving Flu shot this year. He has been having so many relapses. We keep postponing. As stated above, all your responses have given me much to consider. Thank you. MJ

[WAshingtongirl in reply to DogMamma]

Dogmamma, I am really sorry to hear about your husband's numerous relapses this year.

[DogMamma in reply to WAshingtongirl]

Thank you, Tutu 😊 We see Neurologist week after next, maybe??? You know MS dances to its own tune.

[RhondaK8930]

Hello SueAB. I would definitely recommend following your neurologist suggestions about the Shingles vaccine. My neurologist would not allow me to get the vaccine, but others I have talked with did get the vaccine.

[WAshingtongirl]

Wow, all of these responses have gotten me thinking. Because my PCP said 'No,' I figured that was universal. I'll have to ask my neuro when I see her in January. Great question and responses. Thanks!

[Amore55]

SueAB, my neuro said no to the shingles vaccine. He was okay with other ones though. Kelly

[Dmjansen]

My neurologist and primary care Dr both said no to shingles vaccine.

[bavery207]

I got the shingles shot about 2 years before I was dx. I had no reactions but have been told many neuros. do not recommend the shot for MS patients.

[SueAB]

Even though I have lived with MS since 1988, I am a newbie to our chat room. Wow! I can't believe all the response! Thank you all and make it a great day! Sue

[WAshingtongirl in reply to SueAB]

So happy to meet you, Sue 😊

[Hidden]

I got the shingles shot, and so far no adverse reaction with my MS. I had chicken pox when I was young, and got shingles when I was in my late 20s. I NEVER want to go through that again! When I asked the dr if I could get it again, he said there is always the possibility. Once I heard that, it was a no brainer to me. btw.......I'm in my 60s now. I think everyone has to make their own decision with their dr, whether to get it or not. Everyone is different, like MS.

[JeenaRae]

Hi SueAB

Both my pcp and neuro recommend that I don't get the shingles's vaccine. I'm on Tysabri and because it suppresses my immune system and the vaccine is a live virus vaccination it is not recommended.

It is suggested that as ms patients we contact the CDC if we are considering getting vaccinated with any live viruses. They will tell us what is best.

I had a school trip to India that I wanted to take but I had to get the yellow fever vaccine. Since it is a live virus I would have had to come off my meds on the front end for 3 months before getting the vaccine then when I got back stay off it for another 6 weeks before resuming. Needless to say it wasn't worth the risk so I didn't go

Not sure what the shingles's vaccine will do or requirements are but it maybe worth checking depending what your on to be safe

[Nubianqueen3]

No, I have not received this vaccine as yet. I saw the ad on TV and was considering.

[Elle61]

I have not had the shingles vaccine , was thinking about it but I think I'll pass even though I have a lot of stress in my life right now. Thanks for asking about it SueAB

[Ms-Indestructible]

I was dx with MS in July 2007. I believe I've had MS as far back as my HS days. I also now believe when I was dx in 2007 I was in the SPMS stage and not RRMS as I had been prior to 2007 when I asked my neuro about this, I was told that if I was dx with SPMS they would not be able to do anything for me since there was no DMD's for SPMS, at least they could try to help if I was dx with RRMS. I'm a 59 year old male. I got my shingles vaccine a few years back but had to ask my primary care doctor for it. No problems at all and no longer have a fear of getting it. My mother just had it but it was very mild for her. Just two weeks ago I got the flu vaccine. This year they a 3 strain and a 4 strain vaccine. My neuro told me to get the 4 strain one. I've been on all the standard RRMS DMD's and did not work well for me. I just got a new neuro about a year ago [my 4th one now] I've been with Kaiser for the last 15 years. She started me on the rituxan therapy once every 6 months and it is working great for me. Rituxan is also subject to the PML virus but it is so minimal that I didn't even test for my susceptibility for it. I was told though not to take any vaccine that contains live viruses, not because of the MS but because of the rituxan therapy. The bottom line is this: doctors can only give an opinion, they are human and can be wrong, also neuros will often disagree with each other. YOU alone are responsible to yourself, no one else. You have to live with your choice. Would it be better to NOT get the shingles vaccine or to get it and hope for no side effects. Only you know how to answer that. I am convinced that no doctor, neuro or other doctors, family or friends really understand the "suffering" that we with MS go through. Though they try, how can any one? Only if you have MS can you understand. I strongly suggest you become your own best friend. Start to understand your own innate wisdom and follow it. I've not gone wrong by doing this for myself. Wish you the best.

[mdok]

I had chicken pox as a child My Mom got shingles in her 80's. on her face and near her eyes. I asked my Neuro about getting the vaccine and my chicken pox exposure, hey gave the go ahead. I got the vaccine 2-3 years ago, and had no problems. No fairs or other reactions to it.

[CalfeeChick CommunityAmbassador in reply to mdok]

I also had vaccine with doc' s blessings