Newly Diagnosed

[Nyiah]

So I was just diagnosed at the end of July. I don't go back to the Dr. Until August 27th. I'm only 36 and I'm scared out of my mind. I have had the fatigue for a while. What would be the best questions to ask the Dr when I go back?

[EileenUSA]

Hello and welcome to our group.

Forgive me for pasting a reply I have given before ( typing on phone hard on eyes!) but I wanted you to know that prognosis for you is excellent as treatments can slow the progression and there are several clinical trials for new treatments in the pipeline as well as more clinical research. You will benefit from this.

There are other younger women on the forum who will offer support too.

First of all please know that we've all been through initial diagnosis phase and so we get it.. we know what it feels like.. And how it plays with your head.

This is a great group for peer support and well,organized information on all aspects of PBC. This forum on Health Unlocked is sponsored by the PBC Foundation UK. They are an amazing source of quality info on PBC. you can join (it's free)

I am in the USA but still joined and found much much value.

Here's a link below to a guideline document you might want to save, print as you are new to all of this. It can really help with organizing questions for doctors visits etc. Please check this document out its great for questions to review with dr.

Also, I have a link to a post by Robert from the PBC Foundation regarding life expectancy.

Please know that there are other younger moms like yourself on board here and I am sure they will reply too.

Most of all.. hang on to thought that it's been caught early and that there ARE treatments that can help slow progression. Also, there are promising new things in th pipeline that you will benefit from..

Check out these links.

Hugs,

pbcfoundation.org.uk/upload...

Eileen ..

healthunlocked.com/pbc-foun...

[Nyiah in reply to EileenUSA]

Thank you so much for the information.

[butterflyEi]

Hi Nyiah

welcome. As EileenUSA says there is much that is now available for those of us with PBC and new drugs are being researched at this moment. I am assuming your doctor has prescribed Ursodeoxycholic Acid or Obeticholic Acid (new drug available to us). These tablets take a short while to bring our blood test results down to more normal levels. I keep a spread sheet of all my blood test results which I find helps me and gives me a boost when I see how far the levels have dropped.

The PBC Foundation (free to join) website is full of useful easily understood material, it is worth looking back at some of the Bear Facts magazine clinic articles. Together with a look at the EASL guidelines this should give you a good idea of what you might want to ask your doctor.

PBC is for most a slow progressive disorder, eat well avoid processed foods and sugary drinks cut back on salt and drink plenty of water and get in some exercise every day if you can manage it, this will all help you.

I was diagnosed in 2006, almost certainly had it up to 10 years prior. Please take heart there are others on here who have been diagnosed longer and live a near normal life.

best wishes

[Sydgal]

Hi Nyiah,

You are not alone, I was diagnosed in March this year with PBC , I'm 37 years old with young children , I totally understand how your feeling but there are a few young PBCers.

[ENuk]

I was diagnosed last July and started Urso in October. It has been really effective in my case and bloods and fibroscan are almost normal.

Old information on the internet is very alarming so ignore as the life expectancy is now very good. A phrase often said "you will die with PBC, not from it".

I find the fatigue the worse and sadly not much improved with Urso but it is hard to assess aif its PBC or due to a busy life, work fulltime and my youngest is 13. It also takes some getting used to having to rely on medication for life especially if like me you were always healthy.

When you see your dr you will hopefully be reassured. It is likely you will have a baseline fibroscan, revised bloods and a prescription for Urso, the dosage is according to your weight. After that 6 month follow ups with n annual scan seems to be the standard.

Where are you based? Might be useful fl see if there are others local to you

[Nyiah]

Thank you for all the responses. I'm in the US in Tennessee. I think just being tired all the time is the worst. My youngest is 11 and I still have work and football practice and basketball practice and have to cook and clean. Somedays I'm not sure I'm going to make it. I struggle with weight issues will the urso make you gain weight?

[Skypony in reply to Nyiah]

Hi Nyiah, there's evidence that some people experience a small but not very significant weight gain on Urso.

I wonder if you've shared information on your condition with friends who might be able to offer a bit of practical support? You know, like with lifts for the children, etc. It's easy to keep silent with PBC because there's nothing visible and we may think that others won't understand. You've obviously got lots of courage but don't struggle in silence. Best wishes

[Irisw]

I’m in NC ...welcome. I understand! I am 40 years old. I think I r had this since in my early 30s.

[mrspeffer]

Good Morning....of course you are scared. It is natural to feel fear when we get a huge diagnosis and have no clue what to do, who to turn too. I'm so glad you somehow found your way here. Your next appointment probably feels like a lifetime away. I know it is difficult, but maybe try allowing yourself compartmentalized time periods daily to grieve, fret, cry about this. That way your entire life is not as consumed. There are so many things to ask...what foods, medications, supplements, what is the progression, how often do I need tests.... the list is long. The good news is, as mentioned before, this is really slow to progress. I have found the best thing for me is to take some sort of action, whether that be exercise, meditations, journaling, dancing around the house, just doing regular stuff....it all gets me out of my head. Stress will make it feel worse. So, after you have gathered the thoughts from us who have been where you are, please attempt to enjoy the day. Also, although we "have been there", does not in any way discount your very valid feelings, fears, and concerns. Stay close to us and let us know how you are doing. I've been dealing with this for over 22 years and most days i forget I have it. It gets easier. Be well

[Flowerwh]

Hi,

I am going to the hepatologist today for my first one year check up. I was diagnosed last August. I remember the first few months I was in shock as I had always seen myself as quite healthy up to then.

One year in and I’ve am still learning but feeling more at peace with this new life.

I just want to say that treatments are there and are getting better. Diet and exercise changes can help some people. I am now gluten free. Seems to help me. My dr tells me I’m early stages with a good prognosis on urso. My liver numbers have normalized. Fatigue and itchiness as well as digestive issues are no fun, especially fatigue. I suggest you read the information attached by others in this thread and listen to doctors. Avoid google. Some day will be easier than others.

I have found this group in particular to be helpful and supportive without scaring me further. Post here if you have questions or even just feel worried and scared. Someone always answers.

[andrea83]

Hi Nyiah! I know how you feel. I am 35 now but I was diagnosed right after turning 33. I have 3 young children as well. This is a great group with tons of support and info.

[dlahullier0305]

Hello Nyiah! I take milk thistle 1000mg and vitamin E 800 mg daily. Do not eat red meat or cows milk or byproducts. Eat as close to natural as possible. Try to stay away from anything processed and you must keep your salt intake very very low. Once you start detoxing your liver, you will feel relief from itching. In meantime use mix of several oils like almond, avocado, olive, rosemary and lavender in equal parts to put on after daily bath/shower. Helps with itch. Only pain reliever I take is tylenol. Other medicines are worse for liver. You can eat any vegan cheeses or yogurts made with nut milks like almond, soy, cashew, or coconut. Stressing is very bad. Give your worries to God. He can handle them better than you and your woery wull notvresolve anything. Once you you calm down and destress a solution will come to you unexpectedly. Be happy and your best self for your children to follow your example and keep your mind occupied away from PBC. I was diagnosed 4 years ago and have brought my numbers diwn to almost normal. I cannot take any of the prescribed medications for PBC because at the time ot was "finally" diagnosed, I already had cirhossis. But I am still hete alive and kicking. So don't give up. Rest is good for fatigue. Don't skip out on short naps or rest to help you gain strength to finish your day. A shower is also good when napñping is not an option. Take care of yourself. We will always be here for you.

Lovingly.💝

[dlahullier0305]

sorry for the typos.

[mrspeffer2]

Hi...just checking in on you to see how you are doing. Hopefully you are a little bit calmer over this frightening diagnosis. Please remember we are here and want to help you get through the day. Be well

[Nyiah in reply to mrspeffer2]

I'm doing alot better. The group has helped. I had an appointment with PC today and she is great and on top of everything. I have to do my Dexa scan this afternoon. I was told I have to lose weight. I have been trying but it isnt easy. Do yall have any pointers? Also can I take phentermine or is it bad?

[mrspeffer2 in reply to Nyiah]

So happy to hear you are doing better. Yep, losing weight can be a chore for sure. Maybe a veggie juice diet for a few days to start you off. I had to give up most grains, especially the ones with gluten. They seem to inflame my body and add lbs. Where not wanted. I eat small meals several times daily. I try to eat between 10am and 6 PM to give my body a rest. Let me know how you do eith your test.

As far as that drug, you might want to ask you doctor about taking it with your condition. What is it taken for?

[Nyiah]

To help lose weight. I'm going to have to cut the gluten out too. It's so hard. I was born and raised on a dairy farm. Eating bread is all I know. I'm really trying though.

[neicey82]

Hi Nyiah, I never thought that I would be able to give up bread as it seemed that breads, pastas, crackers, made up a huge part of my diet. Given that some of the things I read indicated that gluten could possibly be linked to autoimmune disorders I was desperate enough to give it a try. I was diagnosed withPBC a year ago and have been gluten free since. I used to start every morning with half a bagel and now I eat half a gluten-free English muffin, either Glutino or Udi’s every morning. It really is easier than I thought it would be, and I also don’t have the cravings that I used to have. And the best part is I’ve dropped about 15 pounds. I don’t know for certain that a gluten-free diet is the key, but I do feel better and the weight-loss has been awesome. I wish you well.