As a modest Boomer, living life within a culture of sexual freedom, I managed to pick up Herpes 2 virus at some point. It wasn't a bother as it might happen every few years and not last long. It remained that way - maybe once a year? probably until the fulsome implications of taking preds and aging led to more frequent incidence, suffering several outbreaks a year. Far worse, since I started to take the various antiviral vaccinations - boosters - and this may be a co-incidence - my body has reacted by giving me outbreaks - currently - every three weeks. And the severity of these outbreaks has greatly worsened. I am very sick with this.
This post is asking if the lowering of the immune response of the body is affected by taking preds, by having these boosters, by just aging or all of this?
Three weeks out of ten weeks is now spent taking high dose aciclovir and in horrid pain and agony. I don't know who to see, what more to do other than take aciclovir forever, and how to manage life on my own with this progression. I can find no doctor who would spend the time to look into my situation and give me a practical plan. I'm in a pmr flare, aching, and stuck now at 12mg.
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Bennijax
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Pred certainly suppresses your immunity-that’s why you need to take them in the first place -to control the inflammation caused by your PMR and/or GCA.
Unfortunately because it dampens down your immune system so much, it means that your body cannot fight any virus in the way it would if you weren’t using the Pred . So you are in a bit of a Catch 22 situation.
Age probably doesn’t help either -nothing works as well it did… and done are more affected by boosters than others.
Any chance of getting a referral to a specialist re Herpes.
Hi Bennijax, I'm sorry to hear about your recurring pain and suffering. I recently had a batch of cold sores, the first in quite a few years. I put it down to feeling very low and run down at the time. Luckily for me, it doesn't seem to be a recurring theme - it was in my teens and twenties!
Have you seen the herpes.org.uk website? Here is a link to a question about treatment on their FAQs page. If you scroll down you will see information about a daily treatment used to suppress the virus. Perhaps you could speak to your doctor about trying it? Lots of other information too, such as a link to self help tips to try.
"This post is asking if the lowering of the immune response of the body is affected by taking preds, by having these boosters, by just aging or all of this?"
It has been known for some time that pred tends to make herpes worse
While aging is accompanied by an increase in incidence of herpes 2 (increased opportunity for exposure), it it is said it doesn't necessarily result in increased episodes. However, aging does have an effect on the immune system and herpes zoster as shingles increases with age.
Given the millions of Covid jabs administered, there don't seem to be that many reported linked cases of herpes 2 but this paper
concludes "Recent reports indicate that in addition to the SARS-CoV-2 virus, all COVID-19 vaccines approved to date in Europe are capable of inducing herpesvirus reactivation.
Do you remember asking a similar question a couple of years ago? At the time you commented you were loath to take acyclovir daily as a prophylactic but as far as I can see, that is your only real option.
Thank you PMRPro. Taking Aciclovir every day is the only available course to take. The drug itself causes unwellness, and I will have to take 200mg four times a day for the foreseeable future. In bad cases up to 800mg was mentioned. I am starting Denusamab injections in December and I am frightened at all these things going into my body and the side effects. I rue my happy young carefree years, had I known they could bring such misery to me I may have kept my virginity!
I rue my happy young carefree years, had I known they could bring such misery to me I may have kept my virginity!
No point in doing that.. life is for living/enjoying when you’re young..
We all think we are invincible at a young age, it’s only as it catches up with us as we age do we realise we aren’t.
But bearing in mind what the month of November symbolises for many, just be thankful you are still around.. if not as carefree/painfree as you’d like. 😌
I have to admit, I would ask for your doctors to talk to one another if they want you to have denosumab and pred at the same time when you have a history of this. The combination of the two is said to make chronic infections worse so really worth consideration.
There are several anecdotal reports that hydroxychloroquine has worked well for some patients in PMR to reduce their pred dose. It isn't classed as an immunosuppressant although it, like the others, can lead to increased infections but it is "less worse" so to speak. It might be worth a try.
You are brilliant in your research for links. I am blown away. I will now ask to see the consultant in charge of the Prolia injection, discuss this with him.
Hi Pro, this link refers to Prolia. Is that a version of hydroxychloroquine? I ask because my rheumy asked me to try a low dose of hydrox for 6 months to see if it helps allow me to reduce pred below my persistent barrier of 5mg.
Thanks for clarifying. I assumed the link you added might speak to hydrox, but you do say evidence of it possibly reducing pred as anecdotal. Please let me know if anything positive ever surfaces, as I’d like to know if my rheumy has me on a justifiable course of treatment. Thanks again
There has only been one rather strange study that claims a magical result in all patients. But other patients on this forum have been put on it and it worked well for them. Most of the secondary medications used haven't been trialled in a clinical study - the funding isn't available. Leflunomide and methotrexate have been used in studies. HCQ is a fairly benign DMARD relatively speaking. There are reports it works - it is worth a trial, But I think the doctors should explain that.
I don't think there is a "cut off". I don't think my immune system has been particularly suppressed by pred, I rarely get infections, little different to pre-pred. Others say much the same.
Yes I remember the flare up of the shingles virus when I started on prednisolone and being isolated when I was in hospital at that time.I felt awful.Like you.Got it years ago and it only blew up once in a while.I won't be taking their vaccination stuff to create more for me.I was given a course of something..a blue tablet.I know that but I don't think they can clear it out of us.It goes dormant.The guy who wrote the Medical Medium book explains it quite well.I have had so many flare-ups of different things since being on Prednisolone It certainly weakens our immune system .unfortunately a lot of the medical profession will not be honest about it all.
They are not being honest. There is the sense they must chase the next drug, the holy grail. The innate immune system nature gives to most of us at birth is precious and all efforts need to go into nurturing and preserving it.
Yes .Its pretty awful.I felt terrible when the shingles virus flared up when I started prednisolone.And then isolating me too.I guess they have to do that.But honestly they never admit anything.All I can say is that my life has been a bit of a medical horror story since being on the drug but I am still here and try to make the most of each day.
I'm sure it's not the only drug that has terrible side effects .If only we didn't get these autoimmune problems.
I don’t have any answers for you other than to say, which I’m sure you know, high stress can awaken this. I’m sorry you’re having to deal with this now. Life is supposed to easier 🙄🤷♀️🤔. Take care.
Thanks Bramble2000. It is becoming unmanageble for me, too many moving parts and consultants and doctors not spending enough time to really look into my or our particular situation (s) .
It is necessary for them to have offer a one size fits all regime.
I have eczema, and my skin is very susceptible to reactivations of herpes simplex (cold sores) on my face, ears and balding scalp. Good skin care minimises the number, scale and duration of outbreaks, because the virus hijacks our bodies' repair mechanisms: the less the skin is damaged, the fewer opportunities for HSV to re-emerge. UV damage from the sun should be avoided, and moisturising creams and gels used, never soap or bubble-bath. Showers are better than baths.
I know I'm not alone in finding I have fewer recurrences when I'm taking an anti-histamine every day. Taking it at bedtime can help you sleep, rather than cause daytime drowsiness.
You may find that, if you start taking acyclovir every day as a prophylaxis, you can try backing-off the number of doses. Experiment and see what works for you. Prevention is better than cure.
Above all, try to avoid overdoing things, even 'healthy' exercise, because viruses love stress.
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