PBC

[Dese]

Hi everyone I'm just asking a couple of questions if anyone can answer me I have had coughs and colds more times in the last few months and was wondering if it's because of this illness, and I also feel so down I'm crying, my bones are aching this week has been one of my worse weeks. Feeling sad. Sorry to burden you all I know you all have your problems but if anyone can help I would be grateful much love to you all xx

[Shine1]

Hello,

Sorry to hear that, it can be hard sometimes cant it.

I also get very achy and more prone to colds and feeling run down.

I guess what Im offering here is empathy- do understand how youre feeling.

If anything significantly worsens or changes be worth talking to and checking with your GP?

And if youve anyone you feel you can talk to think that will help, a good listening ear!

Take care x

[Dese in reply to Shine1]

Thanks for the reply I get itching as well i will start talking to my family instead of trying to do it by myself xx

[Hidden]

Hello Dese.

Not sure if it is due to having PBC. I was never prone to colds, coughs or chesty 'things' pre-diagnosis and haven't had any since (diagnosed 2010).

Could be you have some sort of lingering virus or that by feeling down you are more open to acquiring them.

If you are in the UK - I am - it is understandable this time of year with all the rain we have had in recent months. I know in the UK a lot of people feel at their most depressed at this time. I tend to find I feel more sluggish during the colder months and can never wait for the lighter nights with better temperatures to return so I can get out of winter clothing.

Don't know if it will help you but I did lose a bit of weight during 2010 when I was diagnosed December that year and since starting the urso and having this itch that causes me to spend a lot of the day on the go, I want to maintain my current weight. I did at one time buy the Complan drink and have one of those in the daytime but last year I found that there is a toddler milk ready-prepared in cartons that taste nicer that I started picking up from the supermarket as a sort of snack. I have since bought the actual tin of powder and I often add some cocoa powder to make my own hot chocolate drink. I try to keep myself as healthy as possible so as to hopefully ward of anything else. But yes there are times I do feel like screaming if I am having a bad day due to a broken night sleep with itching the previous night.

I think knowing we have something that is not going to go away it starts getting tedious. I refer to myself to my husband these days as my 'Jekyll & Hyde' simply because I am quite fine during the day but come evening time I seem to morph into something different due to the itch resurfacing.

[Dese]

Hi thanks for the reply I do live in the UK and I was given the flu jab a few months ago. I have just had I bad week I think Probably a few more to come. I get the itching as well everywhere. Take care xx

[boneytoys]

Hi

Everyone and every body experience PBC personally and individually and all I can say is keep calm and gradually you will even out in your reactions. I love that people care on this site and thats great because you are not alone which means Im not alone either. Ive had the worst cold (mid summer here in NZ) and it never occured to put in at PBC's door and Ive had the flu jab last winter. Good to have something to blame... I have a great specialist and Im seeing him next month but he's getting on in years and thats my worry at the moment....see what I mean now..Im worrying he'll retire and then who will look after me ? Ridiculous but I also know that there are lots of people worse off than me and thats a great leveler too. Take care.

[Hidden]

Everyone with PBC is different, it sounds like your emotions are all over the place at the moment and reassurance from your doctor may help I would also get your vitD and your VItB12 checked.

I would not under estimate the symptoms that can be caused by a deficiency in these. I never suffer with colds these days, but aching bones and low mood were all part of my deficiency symptoms so its worth checking if you haven't had them checked.

[liver-bird]

Dear Dese - they found my PBC whilst investigating why I had so many chest infections that would last for months. Since being on Urso, my colds and coughs are more normal and like everyone else. This may be coincidental or perhaps because my liver was struggling.

Receiving a PBC diagnosis I found to be very stressful and isolating and this stress may cause its own symptoms.

Thank goodness for this community which is so understanding, helpful and supportive.

You are not alone Dese. Keep in touch and I hope that you will soon feel much better.

Big hugs. Diane

[Calogia]

Hi Dese - sorry to hear all that you're going through. Although it's different for everyone I hadn't had a cold in about 10 yrs. In the past year I've had 3 and they were awful. It may be because are immune system is compromised or it may be coincidental. At any rate even a simple cold can knock you down. Sometimes depression sets in and then I notice my muscles ache and I feel crappy.

Just know we all care and hang in there! There are more good days than bad.

Calogia

[NotorDJP]

Hello Dese! Before diagnosis I felt like I was getting sick all the time. Mostly I just felt bad and stuff that normally I would have shaken off as no biggie (seasonal sinus issues etc) turned into major things for me because I felt horrible all the time. Since going on URSO I really have found that I don't get sick hardly at all anymore, in the conventional sense that is. I did find out when I was diagnosed with thyroid cancer that I had hashimotos thyroiditis and one the major side effects of that is sinus issues. As far as cough goes I don't really get a cough easily. Have you ever had pneumonia? I know once someone has that bad, coughs are easier to come on. Chin up. When I was diagnosed I was almost relieved because I thought I was going nuts. Once that wore off I went through a bad patch of why me and just being upset all the time.

I still have bad days, but now that my LFT's are lower and I also am on some good thyroid meds, they are fewer and far between.

This place is great. We all get it here. People don't understand our disease, or any "silent" disease at all. People with Fibromyalgia, etc and other autoimmune diseases like this one have a rough road, but we get by!

[Dese]

Thanks that's a lovely reply I will keep my chin up

[NotorDJP in reply to Dese]

Welcome

[Jowen]

Hi Dese, I know how you feel. Before I started urso I was sick all the time, terrible colds, flus and infections that kept coming back. I broke my arm twice! I also had the muscle ache, the swollen abdomen and itch and those I'm still dealing with. Furthermore I suffer from recurring anemia BUT I am so much better than when I was diagnosed. So hang in there. Try to build yourself up, eat, sleep, go for short walks, tell people how you feel, and know it is most probable you will feel stronger and more like your old self again.

My first 6 months after diagnosis I watched youtube clips of doctors presenting cases and treatments results and it was so comforting to hear that so many were so much better 2 years after diagnosis. It might take a while but hopefully you'll also look back and think "I am so much better now!".

I know it is a struggle but there will be better days for sure!

Good luck,

J

[Debbiem40]

HI Dese. I was diagnosed 13 years ago. I am virtually symptom free and always was. My PBC was picked up in a random blood test by my GP after I had my son. I am only aware I have it when I take my Urso before I go to bed. I have not had a proper cold for over 6 years so I wouldn't say having a cold is a consequence of PBC necessarily.

Try not to worry about it too much, just live your life!

Good luck

D xx