PBC & Systemic Sclerosis

[Tj2929783]

I was diagnosed with PBC about 5 months ago; although they figure I have had it for about 11 years. Now I was just diagnosed with Systemic Sclerosis as well. I kind of suspected as I had some of the symptoms (Raynaud’s for about 3 years and recently pain in hands, feet & chest along with tight shiny skin, etc).

A few weeks ago the gastro looked at my hands and right away had me do some bloodwork, xrays and set up an appointment with the Rheumatologist. I saw the Rheumy last Tuesday and he confirmed it. He is setting me up with a bunch of other tests to see if it has entered my heart and lungs. He is pretty sure it is in my esophagus. I have had such a hard time eating and swallowing. I had a gastroscopy last week and have yet to get the results from the gastro. I see him again in a couple weeks once he gets the biopsies back.

I am quite overwhelmed by all of this. I was just starting to get a handle on the PBC and now I have this too. I feel like I am falling apart, physically and a little emotionally. Anyone else out there that has both these diseases? How do you deal with it? Do you have any suggestions or words of comfort?

Thanks for any assistance!

~TJ

[Cher29]

Dear friend-

I cannot imagine what your going through? I understand this is a huge emotional hurdle to climb! I know that there is a silver lining ... After you deal with whatever emotions are present please go with it.... Be strong!!!!! You can do this!!! You are not alone!!! I am sending my prayers your way! I believe God is Good!!! Reach deeply and you will see hope! Have faith!! I hope I do not sound preachy? Not my intention? I just believe that u will get through this!!!

[Tj2929783 in reply to Cher29]

Thanks Cher! You are very sweet. I appreciate the good vibes coming my way. :0)

[zipitydoo]

Hi

I have both aswell plus other auto immune stuff. I also have problems swallowing but don't know if that's down to the oesophagis or the sjorens.

In my case I just get on with it all as best I can. I try not to dwell upon things and just keep taking the pills. I have regular heart scans and lung tests and so far they have been ok.

Try not to worry about things.

[judyt in reply to zipitydoo]

I have Scleroderma (Systemic) Sjogren's, and PBC as well as Rheumatic Heart Disease. Like most of the rest of us, you will get used to it!!! No fun but if you take your meds and have the barrage of tests regularly you will probably jog along reasonably well. Oesophageal problems seem to be almost universal in those with Systemic but once again you get used to it. Food needs to be soft and moist, eat slowly, drink plenty andbe sensible.

[Tj2929783 in reply to judyt]

Hi Judy... I just wish it was a few months from now and all the testing was done and I knew where I stood with all of this. It seems like I am constantly going in for testing and bloodwork. Mind you, I will probably always have to go for tests. So you are right, I just have to get used to it. My husband says that this is now my "new normal" and that I just have to plug forward. So, I guess I will do my best. Thanks for the advice!

~TJ

[Tj2929783 in reply to zipitydoo]

Thanks Zipitydoo! I will try not to worry. I think that is easier said than done. I probably just need some time to adjust to this. Take care!

~TJ

[zipitydoo in reply to Tj2929783]

You do need time to get used to it all and you can go through a roller coaster of emotions while you do. But at the end of the day stress causes me more pain and less hair so as I can't do anything to change it I just get used to living with it and wonder what's next.

[Tj2929783 in reply to zipitydoo]

Yeah, I've never been a fan of roller coasters. But that is a good comparison. Thanks Zippity! :0)

~TJ

[PCBnPBC]

I thought I had a bad deal with "just" PBC, my heart goes out to you. You sound like a fighter, be strong, there will always be people in better and some in worse positions than where you find yourself.

Does this sound crazy? - you can use your aweful position to grow as a human being. It's a big ask, but what else to do?

warmth and best wishes, Charliex

[Tj2929783 in reply to PCBnPBC]

Hi Charlie... I agree, there are so many others that are worse off. I just have to turn on the news and feel very lucky that I have so much to be grateful for. I will get through this. Thanks for your warm wishes. It is much appreciated!

~TJ

[Junolee]

You poor thing. I was PBC diagnosed over 2 years ago and just about coming to terms with it. Can imagine what you are going through. It sounds like you are in good hands though and hopefully the Meds/ treatment will work out for you. I hope the advise will help from the other members especially those who have similar combinations. Please keep us up to date with how you get on. x

[Tj2929783 in reply to Junolee]

Hi Junolee...I do think I have some very good doctors taking care of me. They have all been very kind and are running every test imaginable (or at least it feels like it). Right now, it is just a lot for me to wrap my head around. I am sure I will get through it, I have to. It might just take me a bit of time to understand everything that is going on. I probably just need to get through these initial tests and find out the results. I don't believe in being knocked down for long. Life it too short. I plan on making the most out of mine, no matter what comes my way. I am so grateful for this forum and how any time I have posted something, I have had lots of response from caring individuals. Thanks!

~TJ

[Junolee]

Great to hear you are so positive. I do really believe that helps. Keep smiling xx keep in touch.

[paulineemily]

Hi I like you have the full house, I have to continue but do get frustrated with all the test. It took a while to come to terms with it all, but nowI can laugh about it, waitingto see if I get the jackpot. The only way is to try and fi d the fun in it all,I have met so e really nice people at the hospital.

[Tj2929783]

Thanks Pauline! True enough, you have to find the humour. It is more fun to laugh than to cry. Though sometimes I think it is easier to cry. Take care!

~TJ

[dreamy]

Hi TJ, I have PBC and scleroderma too, and it sucks, I am a positive person, but I am finding it pretty hard to adjust to the new me.... I liked the old me . Hugs Melanie

[Tj2929783 in reply to dreamy]

Hi Dreamy,

I agree, the new me really sucks too! I have to admit when I cam home from work on Friday, I was quite teary eyed. Sometimes it just gets to me. People at work keep complimenting me on how great I look because I have lost weight. They have no idea what I am going through personally. They say I have such a glow about me. Little do they know that it is because my skin is being pulled tight and has that shiny look. My sister says I should just tell people about the PBC and the Systemic Sclerosis. However, I think that once you do, there is no taking it back. I guess I would rather people treat me the way they always have, versus being the subject at the water cooler and being looked upon as the 'sick' person.

I feel better today. Just trying to concentrate on doing some much needed housework. :0)

Please take care!

~TJ

[Anne123_45]

Hey.. I've been on this rollercoaster too.. They first started diagnosing me last June.. So far pbc, scleroderma (reduced lung capacity, reynauds), gastric problems, sjogrens syndrome.. I'm 34 going on 94 lol.. Just married two years and desperately wanting children.. I'm still working full time.. And im lucky in love x hope you are OK.. The hospital trips are just a new norm.. Try to do something nice around them xx

[Tj2929783 in reply to Anne123_45]

Hi Anne,

Wow, you definitely have a full plate. I agree with doing nice things for yourself as a treat amongst all the testing. It does help!

Can I ask...do you have problems swallowing? I have not been able to swallow anything but soup, yogurt, applesauce and Ensure for about 3 weeks now. This has been since my gastroscopy. I think the tube made it worse. I had some issues before the test, but it is way worse now. And some of the foods that I can it, my liver doesn't want to digest. You would think that I would be able to eat mashed potatoes, mashed bananas and pudding, but as soon as I do my liver rebels in a bad way. I am very limited with food.

What are your symptoms for reduced lung capacity? Did the doctor hear your lungs 'crackling' when he listened with his stethoscope? I find that I am a shallow breather and when I take a deep breath, it hurts. The doctor says he doesn't hear the 'crackle' but is sending me for a breathing test.

I am glad you have a supportive husband. I hope you are able to have kids. They will help keep you young (especially when you feel 94). :0)

Thanks for your assistance!

~TJ

[Anne123_45]

Hey sorry this system keeps logging me out.. Didn't see your reply.. I'm OK swallowing.. I'm much the same as you breathing wise.. No crackling but hurts deep breathing.. Also burning in throat and oesophagus when exertion is placed on lungs (past a normal pace when walking etc). I've had ctc scan shows no damage.. However had breathing tests and shows 68% transfer oxygen. I've had an endoscopy and nothing in stomach.. I think throat damaged from acid reflux.. So much going on lol can't keep up