Is our 'dodgy' immune system strong? - PBC Foundation

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Is our 'dodgy' immune system strong?

cazz22 profile image
25 Replies

Just curiosity really but wondered as our immune systems seem to be in overdrive and attacking our bile ducts has anyone noticed that they seem to shake off colds etc easily or do you find it's worse?

For myself for years since being a teenager until this christmas I've sailed through life with only the odd head cold even when family members/people at work have had some contagious things.however since December I think I've had everything going which is so odd even work colleagues have remarked on it.any thoughts ?

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cazz22 profile image
cazz22
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25 Replies

Hello cazz22.

I think that we all have what I call 'weak areas' in our bodies. For me I've never been prone to colds and 'flu like viruses over the years and still don't succumb (one reason I have declined the 'flu jab since being diagnosed with PBC 4yrs ago, don't want to rock the boat so-to-speak and maybe start something rolling there).

My son and brother seem to have eternal colds between them but I never seem to come down with any.

Recently my 5yr old grandchild came down with some sickness bug and then my daughter started. I did have contact with my daughter but I have to say that it bypassed me along with my husband.

I often think that viruses can make us succumb when we are feeling down, overly stressed and certainlyduring the colder months in the UK they seem more rife as I think everyone seems depressed and it is a lot of the time down to the weather being accountable.

According to the doctors when we have PBC we are more prone to certain things and that is why they recommend the 'flu jab for instance. Myself I tend to hold my own opinions and decide as and when.

mayday-Yeah profile image
mayday-Yeah

Funnily enough until recently (when new dna study into Pbcs initial findings are that there is a specific gene all those with PBC seem to have) I blamed 2 back to back bouts of tonsillitis on my developing Pbc. However apart from this particular virus I sailed through life rarely taking any colds r flu's but in recent yrs since my liver started to dip have taken some urine and chest infections.

in reply to mayday-Yeah

Has a dna study found a genetic link do you now what study it was, woul be interested to read about it.

mayday-Yeah profile image
mayday-Yeah in reply to

Yes study still ongoing if memory serves me right ask the Pbc foundation link at top of page they can tell u all about it was published in their magazine The bear facts

donna01 profile image
donna01 in reply to mayday-Yeah

Are you referring to the betaretrovirus?

mayday-Yeah profile image
mayday-Yeah in reply to donna01

I don't know what particular virus I had as was just prescribed antibiotics when second bout hit me so could well have been the virus t mention which I know p read somewhere has been linked to Pbc also.

Puddles profile image
Puddles

Hi Cazz,

I too find that when other members of the family have colds etc going around them all, the vast majority of times I don't get them (probably just jinxed myself saying that LOL) I do joke to my husband as he sniffles away that it must be because of my super crazy immune system. Sometimes I get a slight sore throat for a day or so which turns into nothing, whereas for other family members it becomes a full blown head cold. Unsure whether there is any scientific basis to it - would be very interested to know....

Junolee profile image
Junolee

Yep, exactly the same. Was never sick! Tonsils removed as a kid and usual childhood illnesses but that was it. Never out sick from work.

Wendy29 profile image
Wendy29

I think you have a point - I used to heal pretty quick - however that was before steroids and immuno suppressants - now a very slow healer and pick up everything going and takes an age to shake off!

cazer profile image
cazer

I was told by a consultant in Somerset when I was first diag in1999 that I didn't make enough of the antibodies that protect the throat gullet etc.....but most other stuff I think I ve dodge fairly well.at Christmas my family got flu I didn't! !!! But then in jan I got a different strain which was more of a gastric flu...so it does tie in with what t consultant said.o think we all probably have slightly different versions but I reckon you might b right. Don't know if there s ever been research done ?but it is interesting isn't it. A fellow wonderer.!

cazer profile image
cazer

I also had loads of tonsillitis as a child /teenager lots of antibiotics! .....I definitely needed them though then tonsils out at 21.i think o can pinpoint the time my pbc kicked in. ..it was whilst on holiday in a spanish island I had a dodgy tummy for a few days ...nothing terrible but when I got back to England we went out with friends. ..I had 2 glasses of wine not large just what used to a normal measure and I was very sick as if ld had 2bottles...felt really awful. ..tired etc for a few days.from then on I had what they said was irritable bowel couldn't tolerate coffee or fatty food and didn't bother with any alcohol.as it made me feel so ill.i think this was start of pbc just very mildly. Then 13/14 yrs later whilst pregnant and had got glandular fever I was really ill...severe itch sickness etc not long after I got pbc diagnosis .I improve a bit since my son was born but was never able to work again and now just struggle with getting dressed etc.but muddle on.still think beginning was spain I suppose I will never now!!!!!

in reply to cazer

Yes it would be interesting to know just how we all came about with this PBC.

I am somehow convinced myself that mine started up due to having the hepatitis injections when I started working in a medical environment. It does correspond with when I started to itch and the timescale of when I had the course of injections over 6 months I think it was.

I can't help wonder that somehow my system started over-producing antibodies for that particular area of the body and that is how PBC for me came about.

I did mention to the hospital doctor but he never asked more but I expect a doctor wouldn't as it is probably at present going into the unknown.

I haven't a clue when actually my PBC did start as the hosptial doctor said I more than likely started with it a 'few years' before I started to itch (2010). I know I never felt any different prior to the itch.

cazz22 profile image
cazz22

These are interesting comments.h.r.at work know I have pbc and have allowed me a couple of extra days before I need the dreaded interview as to why I've been ill!!theyve said its because of my 'compromised'immune system.ive joined in with all the recent pbc questionnaires (hereditary ect which I don't believe)but sincerely hope that some of those docs read the postings on here.thanks again to everyone for answering😊

PCBnPBC profile image
PCBnPBC

My GP asked me : Charlie! why have you been to see me 7 times this year already (about March / April) when you havnt been to this surgery more than 5 times in 10 years. I answered because I have a screwed liver, H.E. Finger nails that look like something out of a horror film, short of breath, weak, tired, have varicees and odema and (forgotten the name) other swelling, lack of balance, I am told I need a liver transplant, and I feel fcukng ILL !

In short I was in rude health before PBC started to drag me down like a lead baloon!

Now 6 months with new liver, HE still there a touch, but avoid my GP as much as I can (2 visits since November transplant!! ) I do attend Newcastle Freeman for Liver clinic.

normadawnreid profile image
normadawnreid

I too hardly got colds most of my life, I feel a sore throat come and it goes away quickly. I always could always feel my overactive immune system working, it didn't seem normal to me before I was diagnosed. I never had a sick day.

This is helpful to see how others feel.

Wispa123 profile image
Wispa123

Am amazed to read all this. I too never succumbed to colds etc while my husband has reguarily had them.

I too have my suspicions that PBC stateed after having hepatitis B vaccination due to working in the health field , asked my consultant who said its possible as vaccinations by their nature are mucking about with the immune system ( I am still a believer in vccination , albeit I think harder about it) however as consultant said very hard to prove with a large specific study being done .

But interesting topic.

donna01 profile image
donna01

Interesting conversation here. I myself, had a lot of ear and throat infections as a child. Now as an adult, I rarely ever get sick. Maybe a head cold once a year (which I haven't had one in 2 years now) but that is it. No flu, no UTI'S, no other issues, thank God.

cazz22 profile image
cazz22

I used to be so confident of my ability to shake things off that if any children were ill at school(i work in a primary) I would be the one that volunteered to sit with them until someone could collect them-never got a thing.

Interesting that people with m.s.are trialling some new drug that reverses immune system with some good results-wonder if it's something for the future for us.fingers crossed.it seems our over zealous immune system has got bored with the common cold so decided to exercise it's self within our organs instead😳

mayday-Yeah profile image
mayday-Yeah

It is interesting to hear other people's views on how their Pbc started. Like few others here I did wonder if it was the0Hep B vaccine I had to get when I started working in the hospital in 1998 I remember havin to have quite a few booster doses before my immune system was at what they called a safe level for me to work in the hospital tied occ health nurse commenting that this was unusual people usually only needed maybe one booster however I did not take the symptoms of Pbc til 2001 which made me think I had the Pbc first Joe that's y took me longer to get immunity to the Hep B virus. One day hopefully we will know exactly what caused us to get Pbc meantime keep on living!

Alley27 profile image
Alley27 in reply to mayday-Yeah

Never worked in a hospital environment, but had Hepatitis vaccinations before travelling to Hong Kong......also had glandular fever in the November before diagnosis of AIH/PBC, and had swine flue for which I took the antiviral tamiflu.

cazer profile image
cazer

Think we might struck on something here.we probably all have genetic predisposition to autoimmune disorders then something comes along to trigger it.e.g.vaccinations or viruses our immune systems get confused make slightly incorrect antibodies which attack our bile ducts and thats it the start of pbc!!!thats always been my theory anyway. Perhaps we should write our own survey as the one I did a while ago was on about Nail varnish hair dye neither of which applied to me.oh another thought are many of you cat lovers?

cazz22 profile image
cazz22

Like all animals but not an owner of cats.im an ardent dog lover/owner.thats where I think my pbc came from.derelict pit site where council ' buried' something but they won't say.ive walked on it for nearly thirty years twice a day exercising my dogs

nancystreit profile image
nancystreit

For a few years before my diagnosis, I have been sick with colds much more frequently and remain sick and in bed for a long time, more so than anyone I know. After my diagnosis of pbc,mi was told it made sense because of my weakened immune system.

Debbiem40 profile image
Debbiem40

I was diagnosed in 2003 and always think its strange that I never seem to get colds! I sometimes get the odd tingle of a sore throat but wake up next morning and it's gone. So no, our immune systems surely can't be that compromised.

Michi1 profile image
Michi1

I rarely got sick before PBC and when I did I fought it off easily. Now, Almost every time I fly I catch an ugly cold. The last few times I flew I took 1000 mg of vitamin C a couple of days before snd after and I didn’t get sick.

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