I am once again been diagnosed with another auto-immune disorder. Its horrible.
I was diagnosed with Sjogrens in 2004 along with Autoimmune thyroid disorder, i have been pacing myself for the last 5 years with fatigueand dryness, trying to escape any major medications due to not tolerating very well.
I have been seen on a regular basis by a consultant and was told in Feb that they were concerned that i have elevated liver enzymes for the last year. I was tested specifically for liver disease. It came back positive AMA - i have Primary Biliary Cirrhosis. I feel floored and my head is spinning.
I always put my symtoms of disgestive pain and discomfort, pain in hips and occasionally sore swollen knees, relentless tiredness, lack of concentration and a whole load of anxiety problems, a list of other problems down to the sjogrens and hypothyroid.
I was asked to have a liver biopsy, i declined on the fact that they had a positive result for pbc, but it could have shown at what stage i was at. I was still reeling from the diagnosis.
The liver specialist has said i will have a bone density scan, he has also offered that i could go on a clinical trial of INT - 747, does anyone have any info on this. In the meantime i just don't know what to think, in a bit of a mess.
I need to make my mind up about the trial within 6 weeks - or i will be started on URSO drugs.
If anyone has been through this or has any info it will help me.
Please all take care
Loulou
Loulou
I'm so sorry to hear this. My mom had this disease and, well, it's a tough one.
Take some time to breathe and get your head together. You're going to have to make some hard decisions and you don't want to rush them. I can suggest some simple, stupid things to just give you something to do: Get rid of all the 'Diet' products in the house, especially diet soda. The sweeteners are horrible on your liver. Also, any Tylenol- give it away. Don't even have it in the house. Ask your doctor about diet- I'm pretty sure in the early stages you want to eat lots of protein and in the late stages, eat lots of carbs, but I could be reversing that.
It sounds like you've got a good gastroenterologist, but if not, get one! You'll be spending a lot of time with this person.
The biopsy, while sounding scary, isn't too bad a procedure- as these things go, and they will not only be able to get a good idea of what's going on in there, but they may also be able to open up some of the blocked bile ducts.
It's possible that the bad reactions you've had to meds in the past might have something to do with your liver being sick, and the doctors can work with that, so that you will tolerate it a little better.
I hope this helps. Lots of hugs and good thoughts coming your way!!!!
Heather
Loulou,
I'm so sorry that you have been given this diagnosis. I know when I was told that I had a large kidney tumor, I was in shock and the stress was horrible. Just please know that my heart goes out to you and I will pray for a good treatment plan.
Anna
Just sending you a big sympathetic hug LouLou, Hoping that the days ahead are filled with the best medical attention and that they will find a way to help you deal with this upsetting issue ... Please keep in touch and let us know how things go..... God Bless, Dolly.x
So sorry to hear of your recent diagnosis. The advice above is very good. I would certainly follow the suggestions and/or discuss with my doctor.
Best of luck.
Sorry to here of this new one,, never seems to stop does it,, I can only say,, get the best specilist you can find,, dont know if a gasatro guy is te right one to see,, but cant hurt,, I been having some of the same problems hip pain,, stomac probles, the list goes on,, I see teh Wizard tomorrow,, I;ll lay it all out for him,,
Thank you for your prompt replies.
Heather: Thankyou for you kind words and advice - i have had a letter from hospital since i last posted - i have been referred to the liver clinic by the gastroenterlogist. I haven't been one to take or sweetners or things like that, i cut sugar out of tea and foods years ago, i always felt sweetners were not good.
Anna - sorry to hear of your kidney tumour, have you had good care and support,i hope so, thank you i for your prayers and thoughts.
Dolly - a huge thank you for the hugs and thoughts, i think the medical team seem
to be proactive, i have a bone density scan date already. I feel i need a good hug, thanks.
Bonusmum- Thank you - i will make an apt with my GP and sound over the best way to get my treatment.
Navdad- Thank you- it does feel pretty heavy got to make right discisions on my care, although with NHS its decided for you. I hope your visit with the Wizard goes well for you and you get answers, all the best.
Just to wish you all the best and thank you for the thoughts help and support - i love this site, i would be so lost and lonely without.
TAke care
loulou.
I'm at the same place. My rhumy suspects autoimmune hepititas and I'm being scheduled for a liver biopsy to see exactly what is going on. I'm open to the procedure because the worse for me is not knowing exactly the whole story of whats going on.
Stee
Hi Loulou :)
I'm also sorry to hear about your latest dx. I did a bit of reading up on PBC a while ago because I had some elevated liver readings. I've been told I have a fatty liver. I gather PBC moves pretty slowly and there are certainl;y steps that can be taken to slow it down further.
I'm glad you're being referred to specialists pretty quickly. keep us posted. You know we're all here for you.
Take care - Scottie
Have made a decision since i last posted about being diagnosed with pbc. I am going to start a clinical trial for a new drug, to help treat liver disease. It has been tried on healthy people but not yet to treat patients with pbc. Hope it goes well. Has anyone else been involved in a clinical trial.
I have a bone density scan booked for May.
Thank you again for help and support.
take care.
Loulou
Loulou:
I'm glad to hear about the drug a. Hopefully that will help improve your liver levels and let you feel better.
Good luck! and keep us informed.
Heather
Hi Loulou :)
I think that's a brave decision. I hope it works and that you are a pioneer for people to follow. very best of luck with it. Keep us posted.
Take care - Scottie :)
Hey LouLou,
WOW after reading all this and trying to understand it all.... I just want to give you a big hug.
It sounds like you are processing it all and you are going in a very good direction with the liver clinic and the trial drug. I just am praying for the best and I am sure your great attitude will do the most work for you.
Thank for keeping us informed and my prayers will continue to follow you.
Blessings kimbo
Thank you heather, scottie, and kimbo. I am gonna need your positive thoughts and prayers.
Will keep you updated, wish you all a lovely weekend.
Take care
Loulou
loulou
well if its not enough being dx with PBC and having to get your head round it all, but also to decide about a clincal trial, youve had your plate full lassie, and im amazed how courageous youve been to make that decision, wishing only the level best for you on it and as few side effects as you can get, good lucky honey and keep us posted, well support you all the way emotionallly,*hug*
T x
THank you Tx
I think i will be extremely nervous when the date gets nearer.
Just to put the boot in further, i had a meeting today with line manager at work, (i work p/t) i was honest about my latest diagnosis i thought it would be better than to try to keep explaining whats wrong when i am off sick.
Well i have been referred to occupational heath, i was referred there when i was first diagnosed with sjogrens and thyroid, i was told then there was not alot they could do about it, so i expect that reaction again. Still another day off work at their expense. Never stops does it.
Hope your well.
Loulou
I'm so sorry to hear about the pbc. I hope you are in the trials now and you can share with us how it's going
I was diagnosed a couple of years ago with 50% bilary cirhhosis too. The only thing, the endo did not touch on the subject with me! I was there for thyroiditis and numerous growths on the thyroid. At that time i had not been diagnosed with sjs, lupus, fibro or R.A. The only reason i know about this is because i hand carried my lab results from my physician to the endo. So today i got to thinking about that result and was wondering if it had anything to do with AI and looked it up online. Now i'm freaked out and will talk to my rheumy when i see him the end of June. I can't believe i go to all these docs and no one seems to relate any of these signs with each other! I pay them good money to take care of me but seems i need to do all the leg work.
I don't drink so i guess this is one more thing i have to worry about and make sure i get answers! No wonder i have problems eating and feeling sick!!
Sorry to rant but i'm really concerned when it comes to liver involvement!
Good Luck Lulu, I will keep you in my thoughts and prayers. I hope you have a great result with the trial and very minimal side effects or none at all.
Please let us know how you are doing and remember "When you're here, you're never alone!"
Hugs, Pooh
Update on clinical trial.
Thank you all for your thoughts and wishes.
I was doing ok, until a couple of weeks ago. I had 4 nights of no sleep due to unrelentless itching that tried my sanity. I was told to stop and was put on questran (a binding med) but that caused me my digestive problems to return with vengence. After 3 doses of that i couldn't cope with bloating, indigestion, heartburn, acid etc. so i stopped.
Well i had an apt last week and i said i would like to continue with the trial if there was a way round this. My liver doc said i could take the drug every 3 days instead everyday he wanted to put me on questran again incase of return of itching, i told him i would only take questran if the itching started, so i would take that half dose also. I am optomistic about carry on with the trial, i really want to reach the end of trial.
Leisa - you have a whole load of stuff to be dealing with, i am not surprised you feel so let down. You should definitely request some answers when it comes to your liver functions. I hope your apt goes well in June and you get the answers and care you need. All the best with that, let us know how you get on.
Hi pooh - how you doing. Thank you for your thoughts hun, your right ! i never feel alone in here, you are a star.
TAke care
loulou
Loulou, You certainly have been having a rough time with this complaint,
the itching must have been dreadful... nothing worse..... but you have been very brave girl,
it's great that you want to carry on with the trials, so I want to wish you every success..
Your a star too, keep us informed, Luv Dolly
loulou, Hopefully, all will go well with this drug. The itching is from the liver disease and can be the pits. Also, you know your body so maybe taking the Questran in smaller dosage will still work and not cause so many side effects.
The primary biliary cirrhosis is another one of the autoimmune issues that can come with the sjogrens or any other autoimmune disease for that matter. I would think that it could also come just by itself. If there is anything that autoimmune disease does do is keep everyone on their toes. We never know where, when or what is going to happen. We really do learn the one day at a time thing.
Good luck now and keep us posted. Sounds like you have a good doc to direct your care. Irish ;D
God Bless. I will keep you all in my thoughts and prayers.