Told by consultant that joint pain is nothing to do with pbc !!!!

[meandmypbc]

I am sure this is is not true and I am changing hospitals and consultants after a very dismissive consultatation..this did not help with the depression i am slowly sinking into...Does anyone have a view on this?

[Hidden]

I get the same, the pains are not connected, The itching and dry skin is not connected and Urso dissolves bile, I gave up hoping for any help from them about 12 to 18 months ago

[meandmypbc in reply to Hidden]

Really fed up with the nhs and I work for them !! It seems that you have to fight for anthing on this rollercoaster ride !!! Stop the bus I want to get off !!!!

[milllerlm in reply to Hidden]

Itching and dry skin do go with symptoms of having Pbc I have been dealing with it for over 16 yrs. My liver specialist has told me this. Also he said to use hydrocortisone cream and if that doesn't help there is medicine that you can take.

[Anne123_45]

Of course they're connected.. Think about it reasonably doctors.. Liver not functioning properly the right nutrients are not being processed to help the body carryout it's normal function... Otherwise why are the majority of us suffering joint pain.. Coincidence I think not..

[Anne123_45 in reply to Anne123_45]

P. S virtual hug hope you're OK

[meandmypbc in reply to Anne123_45]

I know that joint pain is connected, just fed up with it all, thanks For the hug though, feel like I need it at mo. X

[Hidden in reply to Anne123_45]

I know that and you know it , unfortunately they don't, and don't seem to want or have the time to find out

[hsager in reply to Anne123_45]

I thought I was losing my mind. I just turned 54 and was diagnosed April 2013; my liver numbers have been going up steady since 2011. I am A symptomatic as I do not have itching or "florid 1st stage" after my liver biopsy in May 2013. All of this was a result of my blood tests from at my annual exam. For over a year I have had horrible joint pain. I was tested for gout, lupus ( which my mother suffered from for 48 years), Lyme, Rheumatoid Arthritis- all coming back negative. There must be some connection to PBC! In addition, because of the joint pain there is limited exercise and weight gain ( enter depression). Both of my daughters were married within 6 months this past year, and I guess I was so busy I didn't focus on what was actually happening with me- Joyous beyond belief, but my joint pain and fatigue definetly played a part. Now a year later, I have my 6 month follow with my doctor tomorrow and boy do I intend to bring up the "joint pain". I am glad I googled and found this website, because I was ruling out the joint pain conncection but it is definetly present.

[Hidden]

Itching is definitely part of PBC but dry skin can occur under any circumstances but it does seem to make sense if one is itching quite persistently at certain times then the area can become dry. (For dry skin I find it best to avoid certain bath additives, I always have. I used to suffer in the cold winter months and the back of my hands and fingers used to crack slightly during this period of the year. I haven't actually suffered with this for several years now. I find limiting the amount of time hands are in water during the cold months and I have always bought washing-up liquid that I know is good even if means spending that bit more. Ecover is a pretty good washing-up liquid and I did read some place at some point that if you add some essential oil like lavender for instance to Ecover you can actually use it as a decent handwash!

It is true in PBC that nutrients can be that bit more difficult to process especially the fat soluble ones like Vit D and K for eg. Vit D is needed for bone health so again that makes sense if someone is lacking in Vit D the bones can suffer. I think that it's a bit of a grey area here with regards to having PBC and bone problems. Don't think the problem is actually caused by PBC but it is as meandmypbc states as 'connected' as due to PBC it has that knock-on effect in certain other areas of the body.

I think the medical profession tend to go overboard with certain conditions because that isn't their area of expertise. I also find that since I was undergoing tests and then diagnose up until May this yr on one occasion I have seen all male doctors with the PBC. Not being sexist or anything but I have found a lot of male doctors simply ask your age and then connect everything to the approaching menopause (or menopause). Easy to blame that instead I think.

I can't help thinking most of the time a doctor sort of tries to pass the book and once you have been looked at and out the door they are sort of off the hook. I think that is why a lot of GPs prefer sending someone to hospital as that is a far bigger organisation and there are more 'in it' together so-to-speak.

From another angle as a lot of bone problems do tend to be female related because of our hormones usually (the lack of them after menopause is common), suppose far easier for a doctor to not take that much notice because he/she will see other patients with no PBC who also suffer bone and joint problems.

[mumofthree]

I have had the same response from my consultant and GP's. I am sure views would change if one of these so called specialists had PBC themselves!!!

[Camsarmshurt in reply to mumofthree]

If my doctor could feel my pain I’m sure she would just walk into traffic

[Hidden]

My journey so far has been quite positive with my Consultant and Doctors in my area. I was referred by my consultant to his rheumatology colleague to investigate my joint pain. He told me my joint pain, dry eyes, nose and mouth are all caused by Sjogren's disease which is another autoimmune condition that can go with PBC but is not exclusively to do with PBC. I have lotions and potions for dry eyes, skin and nose but unfortunately the best treatment for the joint pain is Methotrexate, which he said he would not prescribe as it can damage your liver also. He suggested that GP give me short course of steroids when required, which is what happens and I am able to manage this. Hope this helps.

[meandmypbc in reply to Hidden]

Thanks for that crich, it seems that you have had a better journey withyour doctors . Perhaps when I change I may have a better response..thoughi am going to the rheumatology consultant on thursday for my hand.this was organised by my gp before diagnosis of pbc, I will seewhat they have to say.

[Val02 in reply to Hidden]

I was told the same as you about Methotrexate so was given steroid injections. I changed rheumatologists and the new one put me on Hydroxychloroquine - he did believe in PBC Arthritis and it has worked really well on the joint pain - to the point that I don't need daily painkillers. Could be worth exploring?

[LouWooda in reply to Hidden]

I am on Methotrexate for arthritis and also have PBC. Liver Unit at QE Birmingham under Prof Neuberger and Prof Adams. They recommend methotrexate or sulfasalazine as safe to use re PBC

[Keren]

I have positive AMA and symmetrical small joint arthritis, which my (world leading) consultant tells me is a very strong indicator I will go on to develop PBC. My small joint arthritis is symmetrical, painful, and in all of my fingers, toes, and wrists. However I am RA negative, and don't get swelling or heat in any of those joints, which he says is very typical of PBC arthritis.

Show your consultant this link: books.google.co.uk/books?id...

[Keren in reply to Keren]

I think the problem is that because PBC is a life threatening disease, any studies are concentrating on trying to find out what's causing it in the hope of finding a cure, rather than studying symptoms, which is fair enough! However it really would be helpful in its own right from a PBC patient perspective - it reassures us we're not crazy.

[ozzysue]

I suffer with terrible joint pain and weakness, before being told I had pbc I was sent to see an arthritis specialist and it was he who said I had pbc. u will be told by various health prof it is not linked I was 2 weeks ago by a physio, u r not mad if that were the case we r all gaga, big hugs and kisses, chin up, remember u r not alone x sue

[meandmypbc]

I know that this disease is not well known ...and I don't expect G.Ps to know all about it..but it would be nice if the Consultants were all singing from the same hymn sheet !!!!

Just found out from dexa scan I now have osteoporosis !!! good one ... that's all I need !!! Oh and also folund out that I have a pollup on my Gall Bladder ... registrar told me that they could take this out no problem !!! Ha Ha ..

Same dismissive person that told me that pbc had nothing to do with joint pain in the first place !!!

Bring it on ... I mean... bring on the antidepressants !!! and the Urso and the alendronic acid and calcium & vit D I now have to take .

Just thinking ...6 months ago I didn't like taking Paracetamol !!!!

Still paying for scripts so just applied for a prepayment... monthly a tenner !!! Got to be some good to come out of this !!!

Maybe I will get back to work one day !!!

and Ozzysue ....feel pretty ga ga at the moment !!!

[ozzysue in reply to meandmypbc]

u r not gaga, all what u r going through, it's a lot to take in and adjust to, and very often health prof give u conflicting advice, listen to your body u know it best, this site has also been fab, when u see other people with the same symptoms u know it is not just an active imagination , chin up, big hugs sue

[witchiegirl]

Ach, I've stopped discussing stuff like this with drs. Years ago I tried to get my joint pain helped by starting treatment for underactive thyroid. Eventually, when I moved home and had new GP, I got thyroxine (same blood result as as before), and, guess what, pains largely went. Pains back now - now and then, worse today, grr! - but my liver disease is worse. I think joint pain can be a feature of many AI conditions - I discuss this with two friends who have lupus and a AI lung disease, respectively - we all have joint pain. The ignorance in the medical profession is so frustrating.

[Chippy45]

I have come to the conclusion that we as patients DO know what our bodies are going through...and I agree that if someone famous or a MD had auto immune with all that goes with it....we would see a lot more information out there and empathy to understand the beast within us.

[judyt]

Contrary to everything else everybody says, I have no pain!!!!!!!!!!!!!!!!! Seems incredible to me but I am not complaining. I have Systemic Sclerosis, Sojgren's, PBC and Rheumatic Heart Disease, Osteoporosis and Osteoarthritis in one knee.

Why don't I have any pain???? The Osteoarthritis in my knee troubles me if I stop taking Glucosamine and Chondroitin capsules for more than a day or so and if I stop the Enteric aspirin I get a constant headache but apart from that NO PAIN.

I think I am the peculiar one not the rest of you who live with pain. I am weak, overwhelmingly fatigued and get fed up like all of you, but I do count my blessings.

Don't let Docs. tell you what you should be feeling, you know how you feel better than them.

Judyt

[doublewhammy]

It seems strange to me that so many people here with pbc (aih also in my case) seem to exhibit similar symtoms of joint discomfort/ muscle ache and yet it not be regarded as part of pbc. I get that little is really understood by the medical profession about these illnesses but you would think they would start collating information in order to better treat us. Luckily for me I havent had the itching but I guess as the disease progresses it will come :-(. The joint ache is bad enough although thankfully hasn't inhibited movement. Hopefully in time there will be a better understanding.

[Saundrella]

Yes, I definitely have a view. I feel about doctors the way you do. Mine have been good for nothing, pretty much, when it comes to helping with associated PBC problems. My conclusion: Joint pain is associated with PBC just as thyroid disease and awful skin condition is. But there are natural things we can do about it without having to resort to drugs. For joint pain, I've been using Glucosamine Sulfate for years. Recently, I found out it's not good for the liver so I stopped several months ago. It took a long time to work and a long time for the joint pain to set in again after stopping but mine is back to the point where I need to do something about it, again. My solution is to start having Wild Caught Salmon twice a week. I also make sure I get plenty of vitamin D and the associated minerals that are required along with it. But a natural food source is always better than an unnatural one.

I take 15,000 I.U. of micellized vitamin A for my skin. If I do not do this, my skin is deplorable. I grow some sort of white stuff between my eyes and brows and develop flakey skin and red splotches on my face. Nothing helps. I went to a dermatologist and she said I cannot resolve it but can only control it. She gave me a prescription for Kenocatozole (sp?) That stuff is used to treat athlete's foot and is very hard on the liver but I used it out of desperation when my facial skin gets very bad. My skin was so dry, I have tried everything to no avail. I knew anything with oil in it would make my skin turn all red and patchy but recently, in desperation, again, tried baby oil. It worked!! I now make sure I am getting my vitamin A regularly and use Johnson's baby oil for a moisturizer. I'm looking and feeling so much better, now.

Another problem associated with PBC. Insomnia. Okay, here's what I've figured out: It the anxiety of dealing with all the PBC problems which creates the anxiety, for me! I was given a prescription (once again) for Trazadol. It's good for nothing. My prescription, go to a painting class or learn something new to get your mind off your PBC problems. It worked wonders for me. And one other little secret: It's too easy, really, but it works for me. I would go three nights in a row without sleep; I hadn't dreamt in years so the level of sleep I was getting was not good. I joined the oil painting class and found some tea at Walmart of all places. It's "Good Night" organic tea with Camomile as it's largest ingredient. No junkie stuff and other herbal flowers, as well. I drink this tea with fresh gingeroot in it just before going to bed. A little honey and I'm off to sleep within a reasonable amount of time. AND I HAVE BEEN DREAMING EVERY NIGHT!! It's been about a week or more that I have been doing this and it's still working. So, a hex on the worry that I was getting encephalapathy with my days and nights all mixed up. I was just anxious about this or that and needed to get my mind on something else. Seems so simple, now, but it was a very serious problem for months and, yes, years on end.

Another thing: My head was all bonged up. It felt like there was something wrong with my head. I felt detached from the world, all alone in suffering with this. I've been off gluten, now, for a couple years. This is the only thing I can attribute my head going back to normal. I used to say on those rare days when I was feeling good, "I feel normal!" but those were fleeting times until I found myself back to not feeling good in my head anymore. Now, after being off gluten for so long, I feel normal every day. That feeling in my head does not exist anymore! Yes, it was associated with PBC but it's something one can work through before automatically assuming the doctor's must be right when they diagnose the problem and hand out another pharmaceutical treatment.

Another thing: I was constipated. Doctor prescribed Lactalose. I read about it and didn't want to disrupt the progress I was making in building up the good bugs in my gut. So I took Benefiber, instead. Works like a charm. I teaspoonful for each cup of water. And drink 6-8 cups of water a day.

Gas. Really embarrassing. No control over it. Had to do something. I chose to take a probiotic and take digestive enzymes. Two capsules of Pure Encapsulations Digestive Enzymes Plus with betaine HCI after every meal. Works like a charm! No more loose goose. :o)

Diabetes. Associated with PBC. I'm warding it off by being very careful with sugar intake/high glycemic foods. I try to eat nutrient rich foods.

Get the picture? All sorts of things are associated with PBC because our sick livers (I'm stage 4 cirrhosis) compromise our digestion and we don't get the proper nutrition we should. But we can go a long way to help make up for it. None of my doctors have communicated this to me; I figured it out myself, trial and error.

I'm hoping the Wild Caught salmon, twice a week, will help with my joints, plus D, etc, will do the trick. If anyone has anything else to add, please share because I don't want to get to a place (after stopping the glucosamine which worked GREAT) where my joints hurt too much to prevent me from getting on the treadmill for 45 minutes per day. The lack of exercise would start me spiraling downward.

All the problems are associated/connected to PBC in some way. We cannot compartmentalize anything that happens to us, rather, do what we can to work the natural solutions until we are forced to do the more drastic ones...taking pharmaceuticals. I am thankful for URSO and NP Thyroid, but I don't want to take any other meds unless or until I absolutely have to.

I would like to have us all share our little tricks that we find works for us.

Saundra

[Michiganpbc]

I was tested with a bone scan because when you have PBC it's common to have bone pain which I did they diagnosed me with osteopenia which is common in PBC hence the joint and bone pain this is documented on the web in many places look for it copy it and take it to your next doctor visit to educate your doctor. Good luck.