Hi. I was diagnosed with PBC only last January although I’m 73. I live in France so I have to contend with the language as well as the disease! I’m unable to say which is harder!
At present I’m only stage 1 and responding well to the medication. My symptoms are very dry eyes and mouth, and almost constant tiredness.
I’d love to hear from any PBC sufferer who was diagnosed at a late age, and also those of you who suffer from dry eyes to find out what your ophthalmologist and/or your specialist say, do and prescribe.
Good luck to you all !
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Marmalady
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Although I was diagnosed some 15 years ago and do not fall into the category of being diagnosed late I do suffer with the dry eye problem. There is a preservative free eye drops which I have found to be beneficial and the link follows should it be of interest to you. You may want to ask your local doctor what he/she would recommend.
I’m 76 and was also diagnosed earlier this year. For years every time I had a blood test I was told that my liver enzymes were high. No doctor ever followed it up until I was diagnosed with breast cancer last September. Surgery and radiotherapy and lots of blood tests later, I have been diagnosed with PBC because I apparently have AMA ( antimicondrial antibodies) . I also have very sore eyes and incredibly tiredness. Best wishes to us all. 💖💖💖💖
Hi there! It’s good to find I’m not the only elderly person to be diagnosed with PBC. I do hope your breast cancer has been dealt with successfully. One disease is enough to deal with!
I have both dry eyes and mouth, for the dry mouth I get Salavix lozenges and a biotene oral gel for at night. I get both on prescription, so your local doctors should be able to offer you some help for these symptoms. I use over-the counter eye drops, as it’s the lesser problem for me.
Thanks for this info Candy12. I’ll see my local doctor and ask him about these. I’ve had difficulty getting my specialist and my GP to consider a possible link between the dry eyes and mouth and the PBC. From my own research it seems quite a common phenomenon. I see my ophthalmologist next week and I hope to get somewhere with her.
Have you also joined the PBC Foundation, they host this page on Health unlocked. They have lots of up to date, Information and help line advisors if you need to speak to someone. They have leaflets for patients and the medical profession as well, they may help you.
Hi, I was diagnosed at 73 too, I'm now approaching my 80th. I do get dry eyes and mouth and fatigue especially in this hot weather. I've just been prescribed an artificial saliva spray and have to see my optician regarding eye drops as I wear contact lenses. I've kept well most of the time so I hope you will, Best wishes
Welcome Marmolady, I have same symptoms as you have, and Sjogren's Syndrome with PBC. When I removed added sugar from my diet, eyes and mouth were immediately less dry. When I weaken and eat something with added sugar, I suffer dry eyes, bad over-night and early morning.
Thanks 4thPlinth. I want my ophthalmologist to test for Sjogrens to rule it in or out. The tip about sugar is interesting. I eat very little added sugar but of course I’m not rigid about it. I avoid as much as possible French pâtisserie. They look great but they do add loads of sugar. I’ll test your suggestion out.
Marmalady - I don't believe an opthalmologist can rule out SS. The blotting paper in my eye test? I passed it! The dental mirror sticking to my tongue? I passed it! Waking in the night with eyes that felt like wood and a tongue dried so much it took a while to open my mouth? No! I had a biopsy. Once I got the sugar under control, don't forget it is in all processed foods and there's much in different forms in whole food, I no longer needed synthetic tears and spit. I was rather grudgingly described as having 'mild sjogren's'. That's a doctor' term that may help them consider one patient among many, but it is no way to consider one's self! If you have it, you know! And if you have it, you may have other autoimmune conditions that are best identified earlier than later. Learning another language sounds like a very similar process to negotiating your way through health services, so you are getting good practice! If what you hear doesn't make sense to you, start again....Bon chance!
I’ve visited the ophthalmologist this week, and she ‘ruled out’ Sjögrens . It’s a difficult call for me as I have to take strong drugs for neuropathic pain which also cause dry eyes. I have a cyst like growth which is inoperable on my spinal cord. I’ve been given some different eye drops which do seem to help a bit.
I have a good vocabulary of French medical terms! More confusing: an MRI is an IRM. ; PBC is CBP!
ok - so it's out with the sweeties then! It's easy(er) if you taper, same as with salt. Best wishes
Hi Marmalady/Alpha/Candy
In July 2018 my GP carried out a routine full blood tests after I reported having dizzy spells which I thought could have been caused by three months of daily biking 23 kilometers a day. The day after my blood tests my GP were carried out my GP called to say my bloods were highlighting liver problems ! I requested a copy of my blood testsxwhich stated at the top of the page weak but positive for PBC ! My GP carried out further monthly blood tests and referred me to a liver consultant. As I was also in pain in my liver and gut areas I was sent for CT, ultrasound, fibroscan, MRI, camera both up and down internally due to feeling sick, pale poos, itchy skin, aching muscles in legs and arms! All bloods indicated Liver issues but so far nothing has shown up on any scans other then small growths in both lungs, cysts in both kidneys, polyp in my bladder which has been removed a few months ago and an inflammed Esophagus which I take regular daily meds for.
Since last July 2018 I've only had one clear back to normal LFT's which was this July ! Last weeks blood tests aftervrevisiting my GP confirmed I was feeling unwell as my blood readings had doubled !
What I've recently noticed is my eyes are much drier along with my mouth and I too wear contact lenses from 6 am until around 8 or 9pm most nights!
Can I ask how your coping with your contacts. Do you find you have to lubricate each eye to remove a len?
I'm 67 and have worn lenses for around 40 years I think and do not want to revert to full time glasses which I hate with a passion as I'm long sited! I do not dislike glasses on others but on myself YES !
I'm due to see my consultant again on the 8th of October and until these recent bloods tests and feeling generally up and down health wise I thought I may be discharged but I'm no longer sure what's going to happen next !
Can I ask how long did you have your symptoms for before being fully diagnosed.
My consultant and my nursing specialist both keep stating I have all the signs for early non alcoholic PBC. .......
My diagnosis of PBC came after a routine blood test, not because I have any symptoms. I was immediately prescribed Cholurso (French medication, but the word contains the all important ‘urso’ - which is from the Latin for bear! The Chinese used this bear enzyme and now a synthetic version of the enzyme is manufactured and it’s pretty well the only drug which slows down PBC). I do suffer from extreme tiredness, which could be the PBC or side effects from some other powerful drugs which I have to take for a neurological condition, or a combination of both.
My eyes and mouth are extremely dry, but it’s thought that’s from side effects of these other drugs.
I also have other minor health issues because I’m getting old! You don’t say your age but that might be relevant.
By the way my husband’s ophthalmologist was horrified at the length of time he’s been wearing contact lenses and that he had no specs! They can scratch the cornea and his were doing just that! So he got specs and accepted the situation. He’s long sighted as well. You soon get used to the look, and he’s pretty vain for a 72 year old! He’s going to wear contacts when we’re holidaying in Switzerland in a couple of weeks, just so he can look down his camera lens more easily.
I hope you’re able to gradually sort out your health issues. If you do have PBC then you do need one of the ‘urso’ drugs. I’m no medic, but I believe that’s the universal treatment- not cure.
Thank you so much your lovely reply which I've taken on board!
Unfortunately I was born with a lazy left eye so have always worn glasses from an extremely early age! Back in the 50's some children could be extremely cruel causing horrid nastiness to others and if you had numerous things not perfect or upto others standards then bullies would
find horrible numerous nicknames
to hound right through yours school years which and if you were one VERY quiet SHY GIRL with lots going on, then she may ditch those glasses and change things when the opportunity was right!
Me! I ditched wearing full time glasses in my teens but do wear them most days before bed and first thing until I pop lenses in! 😁. I'm extremely long sited ....
May I wish you a lovely weekend and on your health front, may your battles
2017 had retinal detachment Surgery which saved my sight - wore daily disposable lenses.
I had noticed dry eyes worse first thing in the morning.
I've been under the GP for ages feeling slow and tired, batteries running out type of feeling, nothing they found till now - diagnosis September 2019 (june 2019 my ALPs were 1222 and also positive for AMA (2) and ANA antibodies.
I would wear lenses with caution. Could permanently damage your eyes so get professional advice.
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