herpes attacks

[Bennijax]

I am sorry to bring this topic into the discussion as many feel unwilling to talk about it. As very much part of the liberated 1960's generation, those who came of age in the 1960s and had a lot of liberated fun at the time, I found I had contracted genital herpes. Once you have it it cannot be cured, it sleeps hidden in nerves at the base of the spine and when there is physical or emotional stress, attacks. I had attacks every couple of years or more. I wasn't really bothered by it.

After 3 weeks of breast cancer radiotherapy in 2017 it started to appear every year about the same month, August.

After starting preds in 2020 I've suffered an attack about twice a year, and since Novermber 2021 three times. This past attack was the worse ever. I went to see a gynocologist who told me that taking preds impacts the immune system and this is why I am getting more and more severe attacks and advises me to take aciclovir every day, several times a day, permanently. Please PM me if you've experienced more frequent attacks after staring Prednisolone.

Thank you.

[PMRpro Ambassador]

I realise this is something many will want to not post on open forum - but could you give an outline here of what you find out? It may be of more general interest bth now and at some later point.

Did they say why it should be so pronounced with pred - as opposed to any other immunosuppressant?

[Bennijax in reply to PMRpro]

On our forum post from 3 years ago appeared with this topic, at the time an 80 year old woman with same problem as me.

[Bennijax in reply to PMRpro]

she said the preds lower our natural immunity, making it more likely to have an attack. To have to take aciclovir every day forever on top of the growing list of medications is hard to swollow, especially as aciclovir gives me sharp headaches.

[2013mayo]

Oh poor you,

I’ve had eye shingles 3 times, I believe it’s the same family, if I feel an attack coming on, tingling on my eyebrow, I take 800mg aciclover tab, I feel it stops it in its tracks. Maybe you could ask your doctor for a supply just in case. I actually bought them in Spain when I thought the shingles was rearing it’s head.

Good luck

🍀🍀🍀

[Bennijax in reply to 2013mayo]

Is that a single 800mg Aciclovir capsule? Do you get side effects from that? I’ve not know any one with eye herpes - so sorry to hear you are subject to that.

[2013mayo in reply to Bennijax]

Hi, Yes 800mg, you might have a fight with your doc over it but you can get a cheap flight to Spain and any chemist will sell it you, or even ask someone to get it for you, you will need a course to buy, they won’t sell you just one, it’s about 30-40 pounds.

Yes I’ve had eye shingles, once in my eye, VERY painful, other times over the eye forehead scalp and nose 😢😡

Good luck

🍀🍀🍀

Ps, no side effects, maybe feel a bit more tired but nothing you can’t handle.

[PMRpro Ambassador in reply to Bennijax]

Shingles is due to herpes zoster, different virus to the one that causes genital herpes.

my.clevelandclinic.org/heal...

[magmapearl3]

Although it's difficult to post on an open forum I think we have to bite the bullet as many of us may have become the victim of the genital herpes virus due to a previous partner's infidelity. Unfortunately I am one such victim and while on Pred I have had frequent flares which surprised me as I thought the Pred would reduce symptoms. This forum has been a wonderful source of support and information for me while experiencing PMR ( now in remission) so I am hopeful it will continue to do so. I have been off Pred for a year now but continue to experience flares of the herpes virus so I'm interested in the opinions and experiences of others on the site.

[Bennijax]

Thank you. It is all knowledge we share on our forum, to help us understand, and not feel alone. The gyno I went to see was confident it is the Preds because they lower our own body’s natural immune defenses. I have a close friend who never spoke of her life with Herpes and she is not on preds, with no major health issues, otherwise like me in her 70s. She finally revealed to me that she gets herpes ulcers up to twice a month on her lower back. She has been self-treating these with Zovirax cream rather than oral Aciclovir to avoid headaches. I pointed out that the cream is not as powerful as the capsules and that may be why she gets the outbreaks so often. She said she prefers the cream nevertheless and considers Herpes a part of her. She calls it Gollum like the creature in Lord of the Rings who lives under the earth and only surfaces when upset. Her other advice is 1000mg Lysine, avoid certain foods, and mega doses of Vit C. Yet still she gets these outbreaks.

[Rugger]

Thank you for raising this. The leaflet in the package of prednisolone states that "previous infections may reoccur more easily". If you are uncomfortable with taking Aciclovir tablets for life, then 'cold sore cream' containing 5% aciclovir applied as soon as a recurrence is suspected can be very effective. (Virasorb - 99p at Home Bargains - other brands are available!)

[Evercurious]

I suffered recurring outbreaks on my lower back, rarely a time without them. Constantly aware that I had herpes ( parting gift from ex ), which somehow made me feel bad about myself. I take valacyclovir daily. No side effects now. No outbreaks now. No feeling less deserving of love.

[Bennijax in reply to Evercurious]

Thank you, veery helpful

[artfingers]

I, too, have genital herpes but have not had an outbreak for years, mainly because I take Acyclovir daily. I am prescribed twice a day (400 mg per pill) but I have found through experimentation that I only need to take it once a day to keep the herpes at bay. If I try not taking it at all, I will then usually get an outbreak a few days later so I just keep taking it. I don't get any headaches or side effects taking Acyclovir, thankfully. I see my gyno tomorrow so I plan to go over all my meds with him again.

[Bennijax in reply to artfingers]

Thank you so much - very helpful