Anti viral medications

[Lochy]

I spend a lot of time trying to understand my PMR diagnosis mainly because I am frustrated being on steroids and I worry about the hidden effect they are having on me. I have learned so much from this forum and one of the main things is about being more accepting and patient!!

I have to accept the steroid treatment I am undergoing as it is not something I can stop suddenly and I know when the pain has broken through life becomes tough! What I am trying to establish is what has triggered my PMR. There is a lot of information about medications to control the condition but very little about what might have caused it in the first place.

There is a lot about viral triggers in auto immune conditions online and I wonder if any of you have any information about this or have tried any anti viral meds to control any underlying virus which might be running in the background? There is a lot written about the Epstein Barr and Herpes viruses and I do appreciate many of show positive for these, I know I do, but I wonder if they contribute to an auto immune condition.

I am seeing my Rheumatologist in a few weeks and these are some of the questions I will take to him. I suppose I am just hopeful if there is some virus running in the background they can treat, I maybe more able to taper the steroids and eventually get off them. Perhaps this is a fanciful notion but I still want to know what triggers this condition!

thanks for any help with this!

[PMRpro Ambassador]

There are many potential triggers of the underlying autoimmune cause of PMR - but no one single thing has been identified that is common to everyone. However, yes, they probably could contribute - anything that puts stress on the immune system could do so. Eventually one thing is the straw that breaks the camel's back and the immune system goes haywire and is unable to recognise your body as "self". But as in the hundreds of other autoimmune disorders they have not yet identified anything concrete.

That is why there are also no cures - to develop a cure, you have to know the mechanism of the cause. All that can be done is manage the symptoms to allow a better quality of life until it goes into remission. Which is, at least, the case for about 75% of patients with PMR. Type 1 diabetes is autoimmune - no cure there. Many a/i diseases can cause significant organ damage or even kill, such as lupus and other forms of vasculitis. And all of those can happen in young people, even children.

[DorsetLady PMRGCAuk volunteer]

Hi,

I think we'd all like to know the answer to that question. As PMRpro rightly says, many things we know about and certainly some we don't.

What does seem to be the straw that finally breaks the camel's back is prolonged stress in any form - whether infliction by ourselves unknowingly or caused by trauma of some kind.

I think we all have to accept it's just something we've got, through no fault of our own, and to get through it we have to take control of things, not let the illness control nor define us!

You are still you, just slightly more fragile.

[SheffieldJane]

As PMR and DorsetLady say eloquently as usual, a period of prolonged unbearable stress seems to precede a PMR/ GCA for a lot of us. I've been on this website for almost a year and have formed the impression that its members have been energetic doers, often in the service of others. Nothing would stop or fell them except a debilitating disease like this. There is pause for a lot of reflection now, I find, maybe this was absent before.

This is based on anecdotal evidence, invisible under the microscope, but still relevant.

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

Hi Jane,

Very true sentiments.

When we are very busy whether with stressful jobs or caring for others we don't have time to stop and stare! It's well known fact that carers are notoriously bad at caring for themselves.

If nothing else, these illnesses teach you, very often unwillingly, to look after No 1.

Hope you're keeping well at the moment.

[SheffieldJane]

Hi DorsetLady,

I was kind of formulating something equally unscientific in my mind when you asked. My daughter gave birth to a little baby boy at 34 weeks, after a fearful 8 days he is doing well. I cared for my 2 year old beloved Theo for 3 days and nights while his parents stood vigil round the incubator. Apart from stopping my reduction of Pred. basically I just coped. I have always found him to be a tonic and from somewhere deep inside I was able to be what he needed. I still feel well and rest a lot but do a lot, hospital and babysitting. Could this possibly be the beginning of the end of the underlying PMR?

Or does love just conquer all?

[PMRpro Ambassador in reply to SheffieldJane]

Suggests your adrenal glands are functioning at least!

Had she had problems? How big is he? Been there, done that - in your daughter's place, not yours though.

[SheffieldJane]

Astonishingly he was 6lbs, still terrifyingly little. He had to have help to breathe and be tube fed initially.

It's a heart stopping surreal time as you will know. I hope you had the happy ending we pray for.

[PMRpro Ambassador in reply to SheffieldJane]

Nat was 32+ weeks, 1300g (2lbs 13oz) and was on CPAP for several days and iv fed for longer. I didn't get to hold her until she was about 10 days old when I happened to be there when they were doing something. Esca was 35+ weeks and 1090g (2lbs 4oz) - and perfectly healthy, just small! But they both went home fully breast fed after about 6 weeks. One is now a nurse and the other a paramedic.

[SheffieldJane in reply to PMRpro]

Wow! What a story and what worthwhile human beings those little tinies turned out to be.

My daughter worries about the emotional effect on her son ( lack of early cuddles, tube fed ( with her milk) initially.

Her eldest is doing some emotionally healthy complaining though.

I crowed about being fine too soon, I have felt awful today. 😖

[PMRpro Ambassador in reply to SheffieldJane]

Tell her to stop worrying - there is a lot of guff preached about the emotional effect and she has plenty of time to catch up.

[HeronNS]

Interesting possibility, Lochy. However while we're talking about little critters running around in our bodies I'm more inclined to think it's a lack of the good microbes, leading to an imbalance, and that's what needs to be addressed, at least as important as zapping something which may or may not be a pathogen.

[Nap1]

It's good to hear stories with happy endings

[Patience47]

Lochs

I was diagnosed with ulcers and soon after PMR. I believe the ulcers triggered the PMR.