Dispondant!!!!!

[posh]

Hi guys, not been on in a while!!! Been on urso since June, seemed to work for a while. My liver results have since got higher again, up at 300.

I have also got TMJ in my jaw or so they think. Can't yawn, bite, chew. Losing weight dramatically. In agony all time, pain up in my ear and side of head. Got months to wait to see maxillofacial consultant. Was meant to see my consultant in dec for my liver but she cancelled so won't see till march!!!!!!! My legs and arms feel like lead weights all the time.

Feeling like my body giving up!!!!!! So fed up!!!!

[mumofthree]

Sorry to hear you are having such a rough time at the moment. Its really annoying when you have your appointments cancelled, I had repeated rheumatology cancellations and ended up waiting for 13 months for results that I should have had 6 weeks after having tests.

I know its a bit controvercial, you shouldn't really have to do it and it is not financially possible for everyone but have you considered going private for your first maxillofacial consultation... after that you can go back on NHS waiting lists for the treatment.....but at least you'll have some initial answers to the problem... Has your GP given you liquid food replacements? That is an option if you are loosing so much weight because of being unable to eat properly...you can't go on as you are!!

I have the ocassional what I call 'flare ups'....last summer I was not very well and ended up in hospital with upper right abdominal pain, aches and pains all over actually, couldn't even keep water down, and high temperature....Blood results showed my levels were raised when previously they had been dropping nicely....I was in hospital for 4 days and had intravenous antibiotics. They told me I had an infection (as I had temperature) but they weren't entirely sure where the infection was....I had an appointment with my gastro consultant 2 weeks later and told him what had happened over the previous weeks....he told me he did not think it was anything to do with the fact I had PBC but also admitted that he was unsure what could have caused my problems, so I am still none of the wiser what it was with me......BUT what he did say was that any infection - even something small such as a little boil can cause a peak in the bloods. Its only a thought ... but as you have been quite poorly of late with the problems with your jaw etc maybe this could be why your bloods have been raised and not that your liver problems are getting worse.

Its not easy when you are in pain all the time and feeling so rotten but try and stay positive.

Hope you feel better really soon, good luck and best wishes for the new year.

[Hidden]

Hello posh.

Well I was diagnosed with PBC Dec 2010 and started on urso, the norm.

I had my first blood checks in Feb 2011 and it showed improvement. Likewise with May 2011. Then from Oct 2011 my bloods started to go on the increase each time and last Feb (2011) they were not looking so good at all. Can't say for sure but I took milk thistle as well as urso for a mth prior to my next bloods in May 2011 and my results came back just as good and 2 slightly better than the original best results after starting urso (May 2011).

My results in Oct 2011 showed they had started to increase again but according to the GP who has some invisible chart plotter that I've yet to see they were panning out as normal with someone with PBC as we apparently have a different 'normal range'.

With having this PBC diagnosed for 2yrs now I can say to you that you will definitely need more time to see how they may go with urso. I'd not get too down about the results at present (I gave up bothering) as I now put it down to the season changes (are you in England?). I am somehow myself expecting my next set of bloods I'll go for in Feb to be a 'bit dodgy' given the time of yr., no sun, more time indoors when not working and shorter days with less daylight.

I did cease taking milk thistle for awhile after the May results as for some reason wasn't quite sure but not had any problems using it (just take one capsule at lunchtime, urso breakfast and evening meal) but have been back taking it in the last month so shall see if it was that last yr that was making some difference.

Also I have found that even when I thought I was feeling pretty great last yr., I got the notso good blood results back last Feb and then in May when I had the good ones, I hadn't thought I had felt as good so you never know really. Given that at certain times of the year, especially winter when it seems the norm that everyone is a bit more lethargic and the winter months seem so long, either too much rain like present or days and days of really frosty icy weather, it could be that we are feeling this as opposed to thinking it is all down to PBC.

Keep us posted.

[Hidden]

Oops, just to correct - due to the year change!!!

My quote of 'I had my first blood checks in Feb 2011 and it showed improvement. Likewise with May 2011. Then from Oct 2011 my bloods started to go on the increase each time and last Feb (2011) they were not looking so good at all. Can't say for sure but I took milk thistle as well as urso for a mth prior to my next bloods in May 2011 and my results came back just as good and 2 slightly better than the original best results after starting urso (May 2011)'.

I meant to state that I took milk thistle as well as urso in 2012 and the next bloods there were May 2012, only last year.

Sorry for the confusion, takes some time getting used to saying 'last year' when it was only a few days ago and remembering to add last year now as 2012! Sure we all do it????

[jaxxy]

HI poss, so sorry ro hear you so low. I had TMJ a while ago but turns out it was caused by an ear infection. Have you been checked for that? I know it sounds like a siple thing to check but i couldnt believe an ear infection could cause so much trouble!

Big hugs

jax

[posh]

Thanks for comments, unfortunately I go to hospital today, to see surgeon. I have had the pain for 6 months and docs given me diazapam etc which did nothing for pain, just made me spaced out. The problem is there are limited drugs we can take with PBC, so this causes prob for GP.

The pain is excruciating, can't open jaw to yawn, chew and constant sore heads......

does anyone else have problems with bones, muscles?