[Member Discussions and Questions] Should I get a Shingles Vaccine with Rheumatoid Arthritis?

January 5, 2013

From a Chick:

Help! I’ve got shingles for the third time in 8 months. It’s more painful than the RA. Has anybody had the same problem? Or if anyone has had the vaccination? My rheumy said I can’t get the vaccine…

Can you help her out? Advice, input and experiences are greatly appreciated. (((pain-free internet hugs)))

What our members have said so far:

Nan – I’ve had shingles and know how very painful they are and I hope I never get them again so I certainly wish you the best. I had them in an arc on one side of my face. My doctor asked me what had me so stressed out as he said they usually appear there due to extreme stress. I was very stressed out as my oldest daughter was diagnosed with MS about two weeks prior to that. I can’t get the vaccine as it is very expensive and my insurance doesn’t cover it but I don’t understand why your rheumy said you can’t get it… ??

Tracy – Just got them on my head & face caught before the rash but awful & afraid it will come back?!

Elizabeth – Hugs to you first off!! I’ve not had shingles but last year when it became available to me at an available cost I asked my rheumy…he said I could since I wasn’t at yet on infusions or shots. So far I take Methotrexate. So if yours says no…not sure if you’re on these things or not. Hope this helps!!!

Nancy – once you get active shingles the vaccination won’t work. i get them all the time for the last 13 years and the only thing that works are antivirals. best of luck.

Jan – After researching the vaccine, I found out that I can’t get it due to weakened immune system from the meds. Thankfully I haven’t had shingles…was just going to do it as a preventative measure.

Mary – You can’t get the vaccine because it’s a live virus, and with your suppressed immune system, you can get shingles (again) from the vaccine. Have you seen an infectious disease specialist yet? They handle viral, bacterial, fungal and other types of infections (yucky stuff like parasites and tapeworms) that have not responded to treatment by your regular doctor. An infectious disease specialist will also work with your other doctors to find a treatment that works with your current medications and therapies. Good luck – my dad thought the shingles were more painful than recovering from quadruple bypass surgery.

Marnie – I have had chronic shingles for 26 years. Since I stopped eating wheat and dairy over a year ago I have not had an outbreak. I also started taking all kinds of supplements at that time so I am not sure what exactly helped. But I have a prescription for acyclovir and it is taken as needed during an outbreak and it works great. No side effects….very affordable. know I have said it many times but the paleo diet changed my life… No more shingles no more migraines. Much lower levels of inflammation.

Sharon – I WAS TOLD I CAN’T TAKE THE VACCINE EITHER. I HAVE HAD 2 OUTBREAKS.

Sondra – I had shingles twice in one year but caught it early both times and used the the acyclovir which dramatically reduced the breakout but there was a lingering pain for several weeks. I’d hate to see what it would have been like with out the antiviral! And yes, there were several stresses for me that particular year so I totally agree about that being one of the main triggers.

Lori – I’ve had shingles twice during the past 2 yrs, both times running from my back along my 7-8th ribs to around under my left breast. I also have had 2 spontaneous rib fractures to the same area from mega doses of prednisone. Shingles and the rib fractures have left me with intercostal neuropathy which kept me in constant pain until I received some nerve blocks to the area. I’m finally able to wear a bra again for the first time in 2 yrs . Good luck to you…..shingles SUCK!!

Barbara – I got the shingles for my second time back in October. First time I had them about six years ago they didn’t come out. This time when I checked with the rheumatologist he said stop the methotrexate so it wouldn’t interfere with any possible healing. I was in my family doctor’s office for a blood pressure check up and a flu shot when I started to break out. In the waiting room all of a sudden I thought I was bitten just beneath the bra band on ynmy belly. When I got into the exam room, spoke with the nurse then the doctor she saw no flu shot and to check back when I knew more about what my “bug” bite. They did mention a possible shingles break out;(. Next morning I knew something was happening on the back and more going on in the front. Went back to the doctor was immediately put on an anti-viral medicine and the fact I was already on prednisone even though it was only 5 mg. daily she said it could only help the cause. Three nights no sleep sitting in the recliner was better than laying down though. Called out of exhaustion and got a few Vicodin to get me through the nights. Only took after dinner and before bed for maybe 4 nights then able to manage without. At some degree of pain for about two weeks but it lessened as the time went on. Took about two months for the rash to completely disappear.

Cyndi – I had it during the summer and my rheumy told me I couldn’t get it either. If is a live vaccine and would be worse. Cold clothes help.

Pam – Have had shingles three times in the past three years. I can’t get the vaccine because I take Enbrel for my RA, and the shot contains a live virus, as has been mentioned previously. Acyclovir and gabapentin ( for nerve pain ) worked wonders for me if I took them at the first sign of an outbreak. Good luck to you!

Denise – Do not get the shot!!! The side effects are not worth it. If you catch them early, although painful i know and I’m sorry, treatment is very simple with night dose B 12 shots and and anti virals . Good luck to you.

Liz – I also, had 2 outbreaks of shingles last year and was treated with acyclovir both times. My rheumy was very concerned about the virus becoming systemic, so he treated it aggressively…thank goodness! I have been told that if you remain outbreak free for one year, you can have the vaccine. PFI hugs & good thoughts to all.

Barbara – Just read an article from another link about Carrie Ann from DWTS had an operation to help her with spinal stenosis. Many of the symptoms were the same thing I had before RA treatment. Going to talk to the rheumatologist next visit because I had some cervical spine tests that showed cervical stenosis back in 2007. I wonder if the lumbar area also if tested would show the same. I think I would much better have an operation for a condition then Remicade and other nasty drugs pumped into my body with all their possible side affects the rest of my life. The doctor took six months of testing for all different things before coming up with RA but maybe it would lessen enough with correcting the stenosis I could let up with the drugs.

Emily – Oh, u poor thing. I hope u r taking Valcyclovir. I had it so bad I developed viral meningitis. I have been on low dose viral med for the last year.

Debbie – I had shingles last year …awful…diagnosed by my primary care dr. after healing taking valtrex and healing..several months…she gave me the vaccine..I was on enbrel and metho at the time and I was fine! .no more shingles in 2 yrs…but when I told my rheumatologis she gave me thevaccine…my Rheumy was not happy..said it was dangerous.. but PTL.. It worked for me… good luck

Mary – I’ve had it 3 times in 4 years on my left side.

Catherine – My daughter got shingles during her year long stay at the hospital. The nurse said the pain is on a similar level as childbirth. After acyclovir, ice and lidocaine patches…it took a long time for the pain to subside. Obviously, it was due to her immunosuppression. Her systemic JIA has had so many secondaries. I don’t wish shingles on anyone. Her screams broke my heart.

Terry – Wow,scary stuff,I had shingles 1 time and my mom has also.We both have RA….sure don’t want them again.I think they both hurt the same when RA is throbbing bad.

Karen – For me mtx made them do that.been off it for 7 months. Not one time in that time. Shot is very very dangerous for u. It is live.no live shots.ever

Debi – My RA doc said I couldn’t have the shot either. I know someone that got acupuncture to help with it and it was the only thing that helped.

Karen – My rheumy told me that whenever you get a cold, flu, etc. that you should immediately stop the mtx. That will help with healing process. I have never had shingles and hope I never do and with the reading I have done, I don’t believe you can get the shingles shot, but I am going to my rheumy on Tuesday and will definitely check that out.

Brendy – The shingles shot is a live virus, that is why you can’t take the shingles shot, my understanding is only when you take biologic meds. Ask your rheumy.

Karen – I have had Shingles 5 times over the years. My PCP said the same..once you’ve had em..the vaccine wont be effective. Also the prescription cream helps out!

Jeanne – Perhaps a continuous dose of valtrex would keep the singles at bay?

Angela – I actually just got over shingles on my face. They prescribed me an anti-viral which helped substantially. In regards to pain, the shingle pain was less than my daily RA so I didn’t actually notice a difference, other than the sores on my face. I believe it was brought on by a substantial amount of stress that was going on at that time. Best to you, hope it clears up quickly. X

Donna – Wow, didn’t realize this goes along with the RA. Have had them three times in the last five years. The last time two months ago, the most painful this time than the last two. Shingles is what sets me back from taking the RA meds. Good luck to you all!

Jeannie – Prayers sent

Kelly – My rheumatologist had me get the vaccine. No problems with vaccine or getting Shingles either.

Jean – I also had shingles a few months ago , very painful episode , my Dr. also said not to bother with the vaccine

Linda – I also, have had shingles and they have re-occurred several times. The vaccine is a live virus, and if you are taking any of the biological drugs such as, humira then you can’t take because the Humira depresses your immune system and it could be much worse, because you can’t fight it off. Have you tried neurontin, it helps sometimes.

Pamela – I have not had shingles but had the chickenpox twice as a child so I do worry about it – the worse case was as a teenager I got it so bad. I was reading all the comments above and I have RA, Lupus, Sjorgrens, Celiac Disease, Fibromyalgia, Asthma and tons of allergies- recently now nerve involvement. Changing my diet when they found the Celiac disease lowered my inflammation with RA – still have the pain and outbreaks but not as much inflammation. I am on Lyrica for the nerve involvement – its helping a lot for pain – I read its also good for shingles – maybe an option. That nerve pain was the worst thing even worse than all my joints inflamed and that’s bad!

Theresa – Had shingles last year, I pretty much diagnosed myself…my rheumy Dr. Just kinda looked at it, thought I had a rash…I knew it was far worse than that…went to my primary Dr. Saw the nurse practitioner, again no clue! The third visit after I researched my symptoms, I suggested could it be shingles? Ummmm YES! My family Dr. This time put me on valtrex, an antibiotic, and some anti viral cream…this cleared me up in a few days… I’m paranoid like crazy they will come back…I keep extra valtrex on hand just in case! I used ice packs on the area…that helped a lot! My Dr. Said the shots aren’t approved for my age group?! I’m 38, good luck, they are terribly painful …just another day with RA ! : (

Kathleen – PI took prednisone, and my regular meds. Held methotrexate, got antiviral a 60 mg prednisone a day for a week 40 ,, then 20 ,10 each day . When they crusted I used lidocaine patches , sheets whatever 12 hours a day. Mostly I sat around and suffered.could not work as a RN, obviously until cleared by md. Then I got another nasty kidney infection. And have had one flare after another ever since. I dread another round with the shingles. Oh yeah and I gained weight too. can never get the vaccine, if you are on any biologics. Before I broke out I used ice packs to help with the pain, continuously…that did help.

Pam – I’ve had shingles once they just gave the acciclovia tablets and pain killers plenty of rest and fluids . As i am now on humira it worries me i may get it again very painful do not want it again . Many hugs x

Phyliss – I had it once many years ago when I was first getting sick

Vanessa – I had shingles twice, the outbreaks were triggered by extreme stress. After switching from humira to enbrel I can reach the same level of stress, but no longer get shingles. Your meds may need tweaking. I hope you’re been able to get onto antivirals quickly!

Rachel – I had it twice in 6 months, first was triggered after asteroid injection, second wasn’t as severe but linked to a lower immune system get well soon. x

Sonia – I don’t take meds for my RA! Do take pain meds. Had shingles yr ago this month in eye..!!! Ophthalmologists has me on anti-viral and nerve blockers still!!!

Betsy – I thought I had the shingles again a few years ago. PCP told me that you could only get them once. So, went to my skin Dr. and he said it was called foliculitis. Was on several types of creams, and finally got rid of it. They were not as painful as the shingles, but almost. Good luck!

Dyan -The shingles vaccine is a live vaccine–so it’s not safe for folks with RA or other compromising immune system diseases. I thought you could get shingles over and over–not sure…

Charlene – @Nan I to had the shingles on the left side of my face under my eye in July of 2012. My it looked like cold sores blisters, very red and swollen. Yes it was painful had to go to the emergency room because of my RA. I was on antibiotics for a total of 20 plus days. Had to stop all RA meds. I read that for people with an autoimmune disease it takes longer to heal plus you can get it again. I still have a line of small bumps there which from time to time the flare up esp. when I wear make up. So I try not to wear make up to often. I heard and read that we shouldn’t take the vaccine because of RA.

Donna – Talk to your Rheumy. Mine told me as long as I am taking Mtx and any Biologic, I can NOT get any live vaccine. The shingles vaccine is a live vaccine. You also can not get the nasal flu vaccine, that on is a live vaccine. The flu shot (injection) is not a live vaccine.

Jan – Yes, I had the shingles and yes, I have had the vaccine. I do not believe you can take it while you have the shingles but you should certainly talk to your doctor about taking it later. You can also ask the pharmacists at Walgreen’s or walgreens.com… they are highly educated about when you can take it. If you are being treated by a biological med such as Humira or Embrel, you have to stop taking that and then there is a window of time when you take the vaccine. No, I did not have any reactions to it… and I ALWAYS have a flu vaccine reaction (this year it was only itching all over for 6-8 weeks, lol)… Good luck with your shingles. A nice warm bath always helped mine.

Allison – When dealing with any ailments, I look for natural remedies. When I got shingles a few years ago, I tried to “oxygenate” it by dabbing hydrogen peroxide on the inflamed areas. Did that every day, couple times a day. It finally went away. Check with your doctor about including apple cider vinegar in your daily diet.

Cherie – I have RA and had a really, really bad case of shingles once, took forever to get over, had to have a spinal to help with the pain. And, yes, you could say it is worse than RA pain. My Doc also said I couldn’t have the shot. But, I’ve only had them once, thank heaven.

Tracey – Had them 4 times, anti-virals and acupressure helped.

Eva – I heard Lecithin can help the shingles. I got them months ago and still itch around my waist. I did take anti-virals and used calamine lotion.

Keeping it Together with an Autoimmune Disease – L-Lysine can help battle viral infections. Why exactly does your rheumy advise against a shingles vaccine? Antivirals can help, but they are metabolized by the liver as well, so monitoring labs are important.

Jessica – I had the shingles 2 times within a year..2nd time had severe shooting pains within my body for a whole year afterwards which I was told it was internal shingles..I decided that the meds weren’t worth it…rather deal with the rheumatoid arthritis..

Patty – I too got many issues from RA meds.. I take pain meds and ibuprofen

 

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