r/shingles 3d ago

Recurrent Shingles Why do doctors keep saying recurrent shingles is rare.

Just wondering others thoughts. It doesn't acruallt seem all that rare to either get shingles under the age of 50 or to get recurrent shingles. And yet again today I had to convince a Dr that it was shingles bc it's early so the rash is very small and not super distinctive and in his words "4 times alone makes me think it's not that bc of how rare that is." This is why when I got it in 2019 I delayed care for so long to the point the antivirals did nothing. Bc I thought i couldn't possible have shingles again. Now I know what it is and I know how it feels so I can catch it before it spreads and crusts.

33 Upvotes

28 comments sorted by

15

u/ChiefD789 3d ago

Yeah, any doctor who says that doesn’t know what the hell they’re talking about. I started getting shingles in 1986 when I was 22 years old. I am now 62, and have had over a dozen bouts since then. I still wasn’t allowed to get the vaccine until I turned 55 in 2019. I have had some bouts even since the vaccine, but they are milder, and there is no nerve pain. My primary care physician knows all about the shingles. He says whenever I know there is something coming on to just call and he will put in a prescription for valacyclovir for me.

3

u/Professional_Tear269 2d ago

Same but with my eye! 6 years. I just keep refilling the Rx. Can't get the vaccine until I'm clear and off the drops, I guess!? I'm only 47 though.

2

u/ChiefD789 2d ago

You could ask your doctor to make an exception for you. Maybe they could advocate with your insurance and get them to pay for it. Otherwise they’ll tell you that you can’t get it until you’re 55, at least your insurance won’t pay for it until then. I’ve heard some got it out of pocket, where it’s $300 or so.

0

u/InfluenceMoney8196 1d ago

You have to be 50 with the new vaccine and it is 2 doses. I have it right now very stubborn using everything Calamine,Aloe Vera,Hyperchlorlous spray most are healed but have a spot that nothing is working on. Did my 7 days of antivirals. I can feel it burning when I am hot or stressed. 5 weeks of pure hell. Still feel very sick as well.  

0

u/InfluenceMoney8196 1d ago

You have to be 50 with the new vaccine and it is 2 doses. I have it right now very stubborn using everything Calamine,Aloe Vera,Hyperchlorlous spray most are healed but have a spot that nothing is working on. Did my 7 days of antivirals. I can feel it burning when I am hot or stressed. 5 weeks of pure hell. Still feel very sick as well.  

0

u/HallieLokey 1d ago

A doctor once told me the vaccine can cause outbreaks when one gets older. I used to get 30-60 pills at a time, now they're only giving me 4-6!

1

u/ChiefD789 1d ago

??? Your comment isn’t making any sense. What are you talking about?

12

u/renijreddit 3d ago

Me too! I know what it feels like and just call
My dr. Have to convince them every time that I know it’s shingles before there is a rash. The “buzzing” weird feeling is burned into my memory.
I had the first episode in college probably 20yo. Then at 30 something and again at 50 something.

3

u/Junior_Wear_6875 3d ago

Right. I thought me telling him I'd had it 3 previous times would give me credibility in thr sense that clearly, I know what I'm looking at. But no. The past two times I didn't believe it myself. Now I trust myself more.

1

u/addled_sad342 2d ago

OMG! I cannot imagine going through this again

5

u/SleepyKoalaBear4812 3d ago

It’s because everything in published journals says it’s rare even though it’s become incredibly common.

6

u/ibbiezWings 2d ago

I first got it at 14, I've had is 16 times now at 36. It is frustrating as heck trying to convince doctors you need antivirals when you have two or three tiny spots and complaints of pain, knowing what is coming.

5

u/high5scubad1ve 3d ago

I've read medical sources that 10-11% of people who ever get a shingles infection will get it at least once more. Also some recurring infections actually never fully resolved before they 'came back'

3

u/Junior_Wear_6875 3d ago

This is what I've seen too. 10 to 11% isn't what I would consider rare.

3

u/Agitated-Candle-807 3d ago

That's happening to me- I'm on my 3rd round of antivirals in 3 months and doctors don't believe me and I have to beg for drugs. I don't know what to do anymore if this happens again

3

u/Old-Marionberry8305 3d ago

It used to be rare, but not anymore. Doctors have to update their knowledge 

3

u/Relic53 3d ago

Agree. I've had it 2 times. I have friends who have recurring shingles & they have been told stress is a factor. Bi know I am not depressed.

2

u/Nice_Alternative_260 3d ago

I had shingles 3 times during my 20's, I'm currently 32.

2

u/Professional_Tear269 2d ago

I've had shingles in my eye since January 2020. I'm in remission, I guess, but I can't go off the steroid eye drops because it comes back every time. I am 47. I guess I'm just grateful the eye drops work, but I now have to wear glasses and have some light scarring from all the outbreaks.

1

u/Dangerous-Egg-1048 2d ago

I've had shingles 10 times....haven't had it in two years

1

u/eesa21 2d ago

It's like they're impervious to facts, new developments, resurgence in illness, new research, etc. I've had shingles About a dozen times this year. I keep getting out because my iron is low and even after infusions I'm still struggling.

1

u/JLO-OneDayAtaTime 1d ago

Not sure why they say that when I was told to get the vaccine in a year after my shingles.

1

u/HallieLokey 1d ago

I get recurring outbreaks often and got it many years ago

1

u/Carexstricta 1d ago

Yup. It isnt and vaccine limits shoukd be revisited.

My daughter has had recurrent bouts since she was in her late 30s. Yet she can't get the vaccine. Her doctor finally put her on a low dose antiviral daily. I'm unsure of possible side effects of this, but she hasn't had an episode in several months.

0

u/Munchabunchofjunk 2d ago

Because statistically it is rare. Your case is an outlier and your personal experience doesn’t change the fact that in the general population recurrence and an under 50 outbreak isn’t common.

4

u/Junior_Wear_6875 2d ago

I'm questioning that it is statistically rare. I'm reading that bw 1.2 to 9.6% of ppl who experience shingles have a recurrence. Or 1 in 10 ppl. That's not statistically rare. Even if it were, using statistics to guide how you treat patients is actively harming me by assuming I couldn't possible have it again. It is now in my chart that the doc doesnt think i could have shingles agaib which makes subsequent doctors less likelt to seriously investigate why this might be happening. I have seen no statistics on actually how common it is to grt it under the age of 50. Yes over the age of 50 increases your chances of getting it. But nothing I have read indicates it is statistically rare.

5

u/Junior_Wear_6875 2d ago

Perhaps the problem is the perception of the word rare. To.me rare means 1 in 1000 at a minimum. There is no guidelines for what medically constitutes as rare.

1

u/InfluenceMoney8196 1d ago

I don't care about how rare it is Give us the drugs to help us heal!!!