Hi new to site

I am new to the PBC foundation but am part of thyroid one. I am also newly diagnosed with AIH and PBC on top of hashimotos disease. I am confused as I have so many symptoms and my life quality is nowhere near what it was 2 months ago. The fatigue is debilitating, I have pain in every joint, my hands feel swollen and my palms are mottled. I also have no appetite which is not healthy, and my braid seems to have flown solo. Does anyone have any advice on these conditions.

I do have very nice consultant and my Gp is now being helpful. I miss being able to do the things I use dot do, but with extreme fatigue, pain, muscle weakness in legs and upper body and a very uncooperative brain I have no chioce but to sit and do nothing until the discomfort passes.

Never thought I would be like this at age 47....

Thanks

conniefused.

12 Replies

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  • Hi Welcome to the sight! Sorry to hear about your diagnosis it can be quite a thing to come to terms with. I was 46 yrs when I was told I had PBC with two children 10 and 8 yrs old at the time. I only have PBC but like you I suffer from extreme fatigue so I know how you feel. I also have the painful joints you mentioned, swollen hands and mottled palms, so I guess you hang all those on the PBC. Im afraid the brain fog is also PBC related.

    Im afraid the fatigue needs an adjustment of lifestyle but many people manage to find a way to cope. Unfortunately you will no longer have the energy levels you think you should have in your 40s. The brain fog is another thing you have to work round. I find I have a couple of hours a day when its not too bad and thats when I concentrate on paying bills/ making appnts etc. The pain, muscle weakness and swellings are a difficult one, I have been seeing a rheumatoligist for nearly 4 years with very little results. My GP has now referred me for a second opinion as she can see the pain and problems it gives me. At the same time she referred me to a neurologist as she feels it is neurological pain but Iv yet to see them both so no answers there, but if (and thats a big if) I get any answers I will post them.

    There are a few people with PBC and AIH and Im sure they will respond to your post.

    You have come to the right place for help and support. All The Best.

  • Just a quick welcome. Be sure you take the time to read all the prior questions and answers. There is a massive amount of information. Don't be shy to come back if only for a bit of sympathy.

  • Just wanted to say Hi and welcome. This site is great because you no longer feel like you are alone or going mad.

  • Thank you for your reply. i was going out of my mind with worry about these conditions because I have never heard of them before. I was rushed into hospital 6 weeks ago because my liver function tests was very abnormal. They were ok in November last year. If I am honest I think it just crept up on me. I can't walk very far, cant even stand too long to cook a meal, legs are weak, no upper bodie strength either and the fatigue is debilitating..my brain is not my own anymore. My appetite is non existant and this worries me because I can't eat. Its also a concern that my husband does not seem to understand the effect this is having on my life....he seems to think it will go away......

    I am positive mind you in that I have made the decision to not let it get me down...I intend to get back to nearly how I was before. I just have to make some life adjustments.

    I am on steroids but consultant wants to put me on azathioprine..but when you take into consideration the side effects, and my family history of cancer this does not look good for me...I may opt to stay just on steroids.....we will see how it goes at my next appointment.

    Can any one taking azathioprene tell me anything about how the medication has affected them. I know everyone is not the same but experience counts.

    Thank you

    conniefused x

  • Welcome Conniefused, I love your humour. You are going to need it. It to have abundle of great diagnoses, mine began with massive stress from bilateral knee replacement surgery that went very wrong in one knee. This stress I have no doubt began the road that I am now on. This led to a massive auto immune storm, so don't underestimate stress in your life as a starting point, and do everything you can to reduce it.

    Mine led to the first autoimmune condition, Poyl Arteritis Nodas, treated with chemo, which led to liver failure then PBC, then Hasimotos treated with medication. Unfortunately all the symptoms you are experiencing are classic for our bundle of conditions.

    It seems that many patients have multi conditions.

    The best advise I can give is to have a caring empathic GP and do your own research, ask for copies of all your bloods and keep a diary. You will find the hardest thing to cope with even worse than the fatigue is the preception from family and friends about your health. If we had Cancer...the big C (no disrespect) you would get understanding and lots of care, but we have a bundle of rare unheard of condtions that no one knows about. Have the courage to tell people about your health. But most of all don't allow their negativity get you down. Shout yourself a massage once a month more if you can afford it, and if you have a hydro pool near by access it.

    Take care..Toohey

  • Hi toohey,

    Thank you for your reply..I think we all need humour to cope with these conditions...I mean, we need to laugh don't we. If I think back for around 6 months before hospital I was very down..my hubby had been out of work four years, and my hashimotos was still not being treated after 18 years of symptoms. I was under considerable stress because my symptoms were getting me down....was also stresse about my weight which is an issue for all thyroid sufferers...lol....I laugh here cos I am now 2 stones lighter than when I went in hospital..but there are ways to lose weight and severe illness is not the ideal.

    I love swimming, but have been too fatigued to go to the pool, distance is an issue for me because where I live is very rural, no shops for 2 miles, not much in way of public transport either.I am waiting for a house move closer to amenities because now I can't get about like I used to, but the council are not very helpful..and I have been waiting to move for over 4 years.

    I have tried to do research this week as my solo brain has been just a little more coperative lol...and I have found many links between hashimotos, AIH and PBC...especially untreated like mine has been. My Gp just would not listen to me, but thats the case with most thyroid patients..They listen now because I used the word negligence.

    I like the concept of keeping a diary and all my test results..I have asked that everything that gets sent to my GP and consultant also gets sent to me; been messed about far too much with the hashis.

    Do you have problem with no appetite?....I can't eat anything...I can manage perhaps one banana a day and on a good day a tuna mayo sandwich, but some days I can't eat anything not even cuppa soup. I am very worried about this..I am on steroids and normally they increase your appetite.

    Thank you again for your reply

    xxConniefused

  • I cant say I have noticed a change in my appetite. But the fatigue does tend to rule what I eat. if its bad then a biscuit or a banana or something easy and if its not as bad then I try and make sure I eat some vegetables.

  • Hi Conniefused. I am 48 and was disgnosed with AIH/PBC overlap syndrome last year. I am on Ursodeoxycolic Acid for the PBC and the treatement for AIH is as follows. I was on prednisolone steroids first but this gave me side effects like anxiety, panic attacks, even foggier brain etc. I came off them and went onto a steroid called Budenofalk (you can only use this particular steroid if you have no cirrhosis of the liver). Side effects are a lot less brutal. I have been on them for about 5 months along with Azathioprine( this started off with 50mg, then 100mg, finally 150mg). I should be totally weaned off the steroids in another 6 weeks. Yipppeee!!!!!

    With regards to the Azathioprine, I have not had too many side effects. It is sometimes difficult to tell what are side effects and what are symptoms of the 4 autoimmune conditions that I have (AIH/PBC, underactive thyroid, vitiligo). The only main problem I have had is that when they put my Aza up to 150mg my white blood count started to plumet. I ended up being borderline leukopenia (seriously low white blood count). Fortunately, I had phoned the doctor to check my blood results and when they told me I contacted my consultant, who called me back that afternoon, and he told me to reduce it back to 100mg, which I did. When I got my bloods taken a couple of weeks later my count was slightly improved. Long may that trend continue!

    The only thing I can say about the steroids/Aza is that when I was diagnosed I was told to put the PBC to one side (the only treatment is Urso) and to concentrate on the AIH. When I said that I did not want to take any more tablets my consultant basically told me that I would be dead in 3-4 years without any treatment but if I took the treatment it could be well controlled. I know this sounds very direct but I think it is important to understand the implications. When he said that to me I knew that I had no other choice but to take the tablets.

    He is hopeful that in 2 years time I can try to come off the Azathioprine and stay in remission (about 30% of patients manage it) and just keep monitoring my bloods for any deterioration. I am hopeful that I will be in the majority percentage for something positive this time!! God willing!!

    We all have to make adjustments to our lives so keep strong and positive and anytime you just feel like having a moan you know where we all are. This is a great site as there is always someone willing to share and support.

    God I'm a blether, as we say in Scotland. Take care of yourself and make sure you write down your questions for the consultant and doctor so you don't forget anything. x

  • Thank you for this, very helpful indeed. I have written some questions down for my next appointment and will ask my consultant what would happen if I did not take anymore tablets. I don't like the steroids much am developing the traditional moon face.

    I did not realize just how serious the AIH could be until now.... but now I know I may rethink my attitude towards the aza.

    Thanks again

    xxconniefused

  • hi and welcome, can relate to the joint and musle pain its a shocker, as is the fitague the brain fog seams to be getting worse, i dont fight this any more just go with what my body tells me had to give up work 2yrs ago, am very lucky as my children are 25 and 23 , so dont need me to look after theem as such, get as much info. as you can, youll know yourself what you can do and what you cant, i found its all about acceptance to this bitch of an illness, i was dxt 3yrs ago this august rest rest and more rest as much as you can. Ann

  • Thank you for your reply Ann, My kids are 22 and 18 also, so like you grown up can take care of selves. There are days when I wish I could just do my sodding housework, and I don't know about you but my partner has absolutely no idea of how this is affecting my life and thinks that 2.5 months on I should be back to normal doing everything like I did before. Relationships are a bitch as much as these two diseases I have, but as you say Rest, Rest, Rest.....

    I will say that my son's are very good with me...just my partner, but when I went into hospital it was the first tiem in 10 years since we met that he has had to do anything for me.

    Am doing a complete reassessment of my life and unfortunately theres noo good in hanging on to mess, what no longer suits my better good will go out with the skip. Life is far too short for pettiness.

    xxconniefused.

  • Hi like jtxx I have pbc/aih crossover and take azath. I to was told that without I would die. I have been told that I will never not be taking it and if I stopped taking it I could be iller than when I was first diagnosed. Hard to tell side affects or illness anyway.

    My relationship has not lasted, hope yours does. He could not except that this was now me and there was no quick fix.

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