Recurring Shingles

[Rudilynda]

I have had PMR for almost 3 years and I’m currently taking 8.5mg prednisone. Around 2 years ago I developed shingles for the first time. A few month later my second bout developed, then another. Looking back through my diary the shingles errupted a few weeks after having the flu vaccination or common infection such as UTI’s. I am currently experiencing my 5th bout within 2 years having had my recent flu vaccination. Has anyone else experienced this and if so is there anything which could prevent further shingles. Thank you

[Pome]

Just over my 5th lot of shingles in 3 years, was just about over the last one and bang, back again.

[Rudilynda in reply to Pome]

Thank you Pome sorry to hear that you too have this problem. It is awful as it makes me feel so ill for around 3 weeks

[SnazzyD]

I’ve had it twice since GCA in 3 yr 8m. Just wondering if a course of high dose Acyclovir would help, I have a dim memory of someone on here doing something like that with good effect. Perhaps someone else can remember.

[Rudilynda in reply to SnazzyD]

Thanks Snazzy each time I have it the Dr prescribes acyclovir. It seems every time my immune system has to work it lets the dormant virus (which causes the shingles ) loose. The acyclovir works to some extent it clears the rash up fairly quickly and prevents it being a severe attack. Think I must have a very weak immune system due to taking pred .

[DorsetLady PMRGCAuk volunteer in reply to Rudilynda]

Yes it is weakened.,

From NHS site -

Prednisolone is used to treat a wide range of health problems including allergies, blood disorders, skin diseases, infections, certain cancers and to prevent organ rejection after a transplant.

It helps by reducing inflammation. It also damps down your immune system, which can help in autoimmune illnesses, where your immune system mistakenly attacks its own tissues.

[Rudilynda in reply to DorsetLady]

Thank you

[SnazzyD in reply to Rudilynda]

Oh, that blows that one out of the water then. I don’t know what goes on. Before diagnosis I was getting continuous herpes virus eruptions, with facial neuralgia for months. It started with my usual lip cold sore place. Once I started on Pred and therefore suppressed immune system it stopped, so how does one figure that? However, I got a few of minor ones under 10mg while I was very below par struggling with poor adrenal function, but in theory less immune suppressed. 🤷🏻‍♀️

[PMRpro Ambassador]

One of the reasons for getting the shingles vaccine is to reduce the incidence of recurrent shingles - trouble is, the older Zostovax which is what you get on the NHS has PMR and shingles listed as adverse events! The new one is not yet available on the NHS, only privately.

Thought this was pretty good - but it was made before the new Shingrix vaccine was released.

hopkinsrheumatology.org/rhe...

I wonder if precautionary antiviral medication might work if you don't want to risk the old vaccine or afford the new one (IRO £450 for the 2 shots in the UK)? The doctor in the video mentions you may have the pain symptoms long before the rash appears - do you get any warning? Alternatively, if you know that it will appear after specific events, like a UTI or flu jab, maybe starting the antiviral then might stop it starting up at all.

[jinasc in reply to PMRpro]

1st Bout did not know what is was.............2nd one I knew with my warning signals - anti viral within 6 hours - stopped in its tracks. The shot has to be done within 24 hours of symptoms first appearing - my GP had warned me about that so I knew to move fast.

[Rudilynda in reply to PMRpro]

Thank you. The first sign I get is slight pain and dreadful itching the rash always appears in the same place. Previous bouts have occurred around 6 weeks after having the vaccination or infection, this time it was only 2 weeks. Fortunately I have always managed to get the antiviral within the 72hr timeframe. It plays havoc with my PMR and I always have to increase the steroid dose, for a week or so. It makes me feel generally unwell, headache, extreme tiredness which lasts for around 3 weeks. I think I would be very wary of the current shingles vaccine available on the NHS as from my understanding it’s a live vaccine. Maybe taking a very small regular dose of acyclovir might be beneficial as a preventative measure. I will ask the GP if this could be an option. Thanks again

[234me in reply to Rudilynda]

My hematologist just put me on acyclovir -Dec 2020-to prevent a 2nd bout of shingles as 1st one was Feb. 2020.Have severe post herpetic neuralgia 10 months later and so hopefully!

Can't do another bout as post pain is severe as is.

However, seems since on acyclovir the post herpetic neuralgia is worse.

Anyone else experience this?

[PMRpro Ambassador in reply to 234me]

You'd be better posting a new thread - very few others will see this question.

[Pome in reply to PMRpro]

After the first couple of bouts I can tell it's coming before rash appears so can get on the Anti viral's quickly, first couple of attacks were bad the others not so much and were localised. Just made some inquiries and I can get Shingrix here in NZ, $120 for me or free for over 65.

[PMRpro Ambassador in reply to Pome]

Brilliant - that's not too bad. As I said, they were asking well over £400 for it to be done privately in the UK. Hope it works well for you if you decide to try it.

[Lafontainepam1 in reply to PMRpro]

I just got my shingles 1st dose vaccine a few days ago. It is none active in the US. It is the Shingrix vaccine. I will get my second dose in 2-6 months. A sore arm, headache, and unwell feeling the day after.

[Jan_Noack in reply to Lafontainepam1]

how did everyone go who had the shingrix vaccine? Did it stop getting further shingles breakouts? and how did it affect your PMR?

[Lafontainepam1 in reply to Jan_Noack]

It did not effect my PMR. In fact I received 2 Covid vaccines shortly after my 2 shingles vaccines.

[S4ndy]

I've had shingles twice whilst on prednisolone. Once on my body and once in my eye! Luckily I was able to get antivirals quickly and both times it has cleared up quickly. I still have a little hazing on my eye which my consultant said was scarring from the shingles. I don't have any long term nerve pain from it thankfully. I guess it's something we have to be aware of with our dodgy immune systems x

[Alchemy8]

Thank you. Something else to be on the qui vive about!

[MLeigh]

Hello I had shingles twice in three years. Have you been checked for vitamin deficiencies? I was very deficient in B12 and D3. I also went to an acupuncturist who told me to take doses of L-Lysine and L-Tyrosine. When I went to a new GP he also confirmed that L-Tyrosine especially is a natural way to keep shingles at bay. In fact when I got lazy with my supplement regime is when I got shingles the second time! Also, take a good Probiotic! Is there anyway you can get off of the steroids?

[PMRpro Ambassador in reply to MLeigh]

Interesting - there is no evidence it works. But if it works for you and you can afford it - and you have no contraindications in terms of other drugs fair enough.

healthline.com/health/lysin...

[MLeigh in reply to PMRpro]

The report you linked is from a study from 1984 in which L-Lysine was mainly looked at to see if it had an effect in treating a current outbreak of shingles. The other study was from 2004 and was concerning cold sores. I am talking about taking supplements on a daily basis to PREVENT an outbreak. Many health issues can be both prevented and treated by diet and proper supplementation. Of course there are not many “studies” done on an easy preventative measure. Do you know how much money Big Pharma makes off of the Shingles vaccines and the antivirals given to “treat” them. Which by the way, the antivirals just suppress the shingles back into your spinal cord. Which is why when someone has an outbreak they are likely to have a reoccurrence, if no lifestyle changes are made.

I am not going to continue to live my life strictly based off of “studies” that are usually conducted with a very small number of people, and in this case done decades ago. We also don’t know what other factors, such as diet and what pre existing health issues each participant had.

L-Lysine is not expensive. You can get a 100 day supply for $6.99 on Amazon. Which is less that what most would pay for a 7 day supply of antivirals, which are not beneficial for anyone’s immune system.

amazon.com/Supplements-L-Ly...