Pbc progressing ?

[tessiecat]

Hi everyone hope your all well. I was diagnosed with pbc two and half years ago after a period of severe fatigue . After initial shock I started on urso responded well . Stopped smoking ate a healthy diet etc I lost weight and continued working 40+ hours a week and quite honestly felt quite well apart from arthritis and fatigue but over last few months I've gained weight around my middle developed itching (I've never had before) joint pain worsening and feel generally low and unwell .... are these signs pbc is progressing and not so respondent to urso ??

[Hidden]

Hello tessiecat.

Itching (or pruritis) can develop in PBC apparently at any stage. I started off itching intensely early 2010, diagnosed December 2010 and started taking urso.

It could be due to taking urso. I know when I've taken the whole lot of mine as experimental as there's no hard fast rule when to actually take it (and I did read in Bear Facts newsletter once you can take all at once), I did this with breakfast and found myself itching rather badly a few hours later. Something that does not normally happen these days. My itching did change after awhile on the urso. I now itch around 11p.m. every night and it vanishes by 6a.m.

Itching is said to be of no guidance as to how we actually are with PBC and the same apparently goes with the fatigue. (I did have fatigue in 2010 but at some point vanished during 2011. Get tired some days due to broken sleep at night if itching a bit more as mine can be mild some nights, worse others.)

You didn't state your age. I have probably completed menopause now as had no signs since September and been lucky as not really any symptons other than a few of the hot flushes since last September. I ws 53 a couple days ago. My joints creak more than they used to do and I have a bit of a stiff thumb base of my left hand (I am right handed). I don't really think about it as I've done manual work over the years, not much of a lightweight when it comes to doing things (though these days I am not too much over 8 stone - I did lose a bit from 2010 but nothing major - but look OK as I'm only 5 feet 2 inches tall).

Some apparently do gain weight withthe urso, others can lose. More than likely here and this is my theory, due to a better biliary system due to taking urso, digestion is probably not as compromised so perhaps this is why. Also if someonen is fatigued and spends more time resting with PBC expect weight might just be a slight gain. I am on the go all the time due to prickling if I am rest even during the dsy. I find it holds off when I am moving about so I expecdt I'll not gain much weight tho' these days I do have a little rounded bump of a tummy area but I don't take much notice due to middle area in females being one prone to weight gain after menopause and mine doesn't seem untoward as it can be a little bloated end of day, flat morning after.

[tessiecat in reply to Hidden]

Thanks peridot yes I was 52 yesterday and am going through the menopause which i have been putting these changes down to . But my weight gain is about 2 stone in last year my job is very active I also am on the go 12 hours a day constantly on the move . I take my urso with my evening meal and itching gets worse just after . My skin is very dry at the moment I guess I just feel toxic lol and I have arthritis and vit d deficiency but my mobility getting worse and my memory and recall is chronic sooo menopause or liver ? I go annually to liver specislist when I last went 10 months ago my bloods were great so they changed me from 6 monthly to yearly I had a fibrescan last yr also good . Also been signed off this year from gynaecologist and ortho consultant as on meds for both and was stable what I don't do I suppose is go to gp with symptons or to collate consultants I can't get appointments for weeks and don't feel they have time. I think I am just tired and need a detox I worry in case I miss something important

[Sallam in reply to Hidden]

Hello Peridot,

I hope that life is treating you well? I do not post very often but I do read a lot of the posts and try to pick up new ideas to help me cope with the symptoms of this confusing disease. It has come to my attention that you appear to have a lot of experience/knowledge and I would like to pick your brains if you don't mind?

I have been diagnosed since August 2015. I have suffered with fatigue, aching joints, forgetfulness & confusion and just recently the dreaded itch. I have seen my specialist about 10 times I suppose but he has never offered me the results from my blood tests as I read here, that people seem to have and understand , for example, ALP, ALT, BILE,AMA,GGT,ANA,AST? I have little idea about what these things mean and I was wondering how everyone else seems to get regular access to these and what they mean?

On my last visit I actually asked my specialist about these things and he gave me my ALP as 379 expressing that the normal is 130. My ALT was 37 ( the norm being 35, apparently), My bilary count was 5 ( apparently anything under 20 is okay). I am a bit concerned about the ALP level could you advice as to what are the most important things for me to request from my specialist when I visit him and what are the things I need to really watch and monitor and act upon. I do try to keep a healthy diet.

Do you have any suggestions from your experience on how I could get my ALP level or count down? Sorry to burden you, I know that you are not a doctor but I value your opinion because from what I have read from your posts you have experience about PBC and I feel that you you are a wise person. May god protect you and help us all.

Just one other thing, have you heard of the drug Bezafibate? My specialist prescribed this drug for me last Thursday. I am reluctant to take any more drugs to be honest but maybe if I read good reviews about it I might be convinced it's worth while trying. Have you had any experience with it or know anyone who has?

I have been taking Ursodeoxycholic since diagnosis but not really helping with my LFTs.

Kind regards,

Sallam.

[Hidden in reply to Sallam]

Hello Sallam.

You don't state where you are so I can only try to ascertain from your posting. You mentioned specialist so you could well be in the UK? If so, anyone is entitled to request a print-out of their test results and it seems the norm from what I understood in the early days of PBC for patients of this to look at their results and if needs be, ask a GP/consultant what they mean figureswise.

I've never got hung up about mine, get deflated sometimes, inflate others if they are better than the last but I do like to know. I first asked for my results on diagnosis as the hospital consultant I saw who gave this diagnosis December 2010 wrote in his letter to me that my Vitamin D was 'a bit low' but at the time he was not recommending any supplements. I rang his secretary to ask what it meant as in a normal range figure and what mine was. She sent me all the blood results from that year (I started having blood checks early 2010 due to going to see GP with intense itching) and I saw that the Vitamin D in question was on the line. I also deduced from the results the last bloods in the LFTs (liver function test) that my GP took August 2010 were higher than the start of November when I saw the hospital consultant for the first time and he took LFTs that day (as well as full blood count and also one known as GGT (for liver inflammation. It's stands for Gamma something...), they were lower. After diagnosis this gave me hope that the LFTs could drop of their own accord naturally as mine did (not much but there was a definite drop in them).

Of course now if you live in England if you are registered for online appointments, repeat prescriptions, etc at your GP surgery then you can ask for your medical records to be included (mine appeared January) and the test results are put on there. I didn't need to get a print out for the first time January when I had my blood taken as I could print them out myself if needs be. All my blood results from 2010 are online. The results show what is considered normal range and what yours are so you can see at a glance. I don't take much notice these days as I have said.

I really go with how I feel day-to-day and get on with life. I think it is better that way in my mind as certain t hings about PBC might never occur and it would be needless worrying, meanwhile missing out on living life to its fullest. I know for me I have to say I think I went through some grieving period in the early days. I'd been a widowed mother for many years and then along comes my new life (I remarried in 2009) and before my 1st wedding anniversary I was itching and about to be informed I had PBC later that year.

Unfortunately I can't say how we could perhaps help some of our crucial blood levels we tend to have in PBC (ie ALP or GGT) to drop as I've not really found much that can help. I know changing your lifestyle can be of a bit of help. I just try to keep on eating a healthy diet, cut out unnecessary additives and try to cook more basic food that is low in fat.

I've only heard of Bezafibrate on this site. I only take urso, have since diagnosis and prior to 2010 I only ever had one doctor's prescription and that was back in 1999, a short course of antibiotics for tonsillitis. I try to avoid any further medications myself and hope to continue to do so. This also includes over-the-counter medications of which I've not had any, even paracetamol since pre-2009.

I've yet to fathom out how to actually get rid of the itch but been working on it since 2010! It's annoying, frustrating at times, makes me fidgety in the evening and causes broken sleep but since diagnosis and the urso for me it altered and I only tend to have it start around 11p.m. and it vanishes around 6a.m. I think for me if I continue to not eat anything following the evening meal then I reckon I could well just continue to have the itch later at night. Best I can do.

[Sallam in reply to Hidden]

Dear Peridot,

That was wonderful information. Thankyou so much for taking the time to reply to my message I actually agree with you about just taking each day as it comes and dealing with whatever it brings. I also am not keen on taking anymore medications ( would rather use herbal medicine). I actually believe that looking & checking all these ALP & ALT results etc. Is really the specialists job & we should have trust that they know what they are doing ( although as we all know PBC is not a straight forward disease and still not really understood by the medical professionals). I just felt that maybe I should be checking & understanding them as everyone else on this site seems to spend a lot of time mentioning these things.

I try to eat healthily, and exercise as I can, regulate my working days & hours around my fatigue issues and nap regularly. I like your attitude towards it and I agree that too much time spent trying to prepare for something that may not even happen is time wasted that is very precious and can be spent with loved ones. Isn't that what life is about

I Thankyou again and wish you the best in your quest for ridding of the dreaded itch. Do you get the itch in one location on your body? Or does it appear randomly anywhere on your body? I have tried sudo cream and it eased it for me, when I used to get the itch just under my tummy/belly Btw yes I am based in U.K.

Kind regards,

Sallam.

[Hidden in reply to Sallam]

Hello Sallam.

The itch of PBC can be any place on the body as others on this site who are also with the itch of PBC can also state.

I feel prickles (like being invaded by wasps is how I describe it or rubbing on nettles) during the day if I bend at the knees or arms for eg. Certain items of clothing can cause me to feel uncomfortable too.

At night the itch tends to be more waist down. Once I go to bed, not long after lying down, I can feel the prickles on my feet and toes. Resting on an arm in bed causes the itching to be felt and there is nothing one can really do about this itching at random. In my case I end up fidgeting, if not sleeping I get up, usually go to the bathroom and then return to bed where the itch has stopped but if I do not go to sleep then in a short period of time it is back again.

The itch is thought to be due to used bile in our system that can no longer be dealt with in the same way as we used to pre-PBC. Due to it flowing in the bloodstream this is more than likely why we can feel the itching on any part of our body. Makes sense that if we are sat down and we have pressure on certain bodily parts then blood flow is a bit restricted so I think that is why when I am sat down of an evening, I can feel prickles in my thighs when I am still awhile (usually watching tv for a short spell prior to retiring to bed). My theory is that the itch comes from used bile reacting with all our tiny nerve endings that are throughout our body.

I find during the day I don't really tend to itch, I do have the odd prickle but I think due to being on the go all the time then that is more than likely why the itch isn't as prevalent. I know during the cold winter months when out and about, if I was warm on going indoors anywhere I would ultimately start to feel my arms prickling and then I'd be itching due to the heat. I find with myself I feel best and seemingly itch-free when I am cold but it's not practical being cold constantly as we know so in a way a catch 22 situation.

[Sallam in reply to Hidden]

Hi Peridot,

I was told by my specialist when I was getting 'an itch' under my belly that it could not be 'the itch' because the itch is all over the body not in one location I didn't really agree with that but now I get small irritating, jiggly itches scattered around and an itch that is generally ready and waiting anytime of day in one location. Anyway, there are a lot of people worse off than I and I pray that we can all cope with our symptoms without it interfering too much with our lives. Thankyou for sharing Peridot and I hope,you are in a nice peaceful sleep atm

Goodnight,

Sallam

[Pollybob]

Good morning, I am going through an extremely itchy time at the moment too. Save worrying why not book in for a blood test, I have mine checked every few months,I am also on steroids to, are you?

Take care

Pollybob

[butterflyEi]

Hi tessiecat

I was diagnosed in 2006 but started itching in 2014. My blood test results are very good but I do get low especially when the joint pain is worse - normally when I have over done it. I lost a good stone last year but am struggling to lose more, I am 66 this year but still very active well on the good days

For me personally I do not think it is a sign that the PBC is progressing and I am still responding to URSO. I am now prescribed Rifampicin for the itch and use a 2% menthol cream which seems to confuse the itch somehow and like Hidden I keep as busy as I can to ignore the prickles for as long as I can.

As Pollybob has suggested a quick blood test may alleviate your worries.

best wishes

[cazer]

pbc cancause itch but general unwellness and joint pain could pbcor arthritis or a combination of 2

lve had itch for 18yrs varies a lot for me if ive done more the itch is worse.

best ask consult about worsening symptoms but they can be worse without liver being any worse. best wishes cazer.

[tessiecat]

Thanks for your replies and reassurances I've had annual leave this week but before that my work was very busy and stressful and I also care for my mother with Parkinson's and dementia so maybe my body is reacting to me resting a blood test may be a good idea to reassure and when I go back to work going to get back on track with diet and exercise ... be pro active 😁 I do sometimes feel I'm at war with my health I will recharge and prep for next battle

[nan1012]

I just want to say you're not alone in your experience. I first went to a doctor in 2010 with abnormal GGT and ALP levels, tested positive AMA but was not diagnosed until 2012 after having pretty severe pain in right side. Also have nighttime itching, fatigue, some joint pain in right hip and shoulder, tingly burning of lips and tongue, heavy legs late in the day. But about 18 months ago I rapidly gained about 12 pounds around my middle without a change in my eating or activity level. Also noticed more pain and an itchy rash on face and neck when extremely tired. Also ALP levels began to rise some. I take 2 300mg Urso twice a day, vitamins, rifampin, fiber, fish oil, vitamin d, CoQ10. I'm going to an endocrinologist in May to see if there's a thyroid issue.

I work 2 days a week as an accountant (used to work 3-4), partner with my husband in our farming business and stay busy with our children and grandchildren. I'm 62 and want to make the most of my time and energy- really grateful for the energy I have and wonderful family and friends. Best wishes and God bless.

[tessiecat]

Thanks Nan I take 500mg urso twice a day and 2xs 300mg of gabapentin as well as 120 mg coq10 vit d thinking about it also I have taken transamyic acid for the first 3 days of periods for last 8 months this coincides with weight gain and joint pain increase does anyone else take this ?