My boyfriend of 7 years was recently diagnosed, stage 2, he is 64 & been on the medication for a few weeks. Started taking 4 tablets a day with bad stomach cramps, dr said go to 2 & then increase 1 each week until back up to 4. He doesn't want to talk about it & so I am writing, looking for any advise on diet, water intake, diet restrictions, exercise, life expectancy, what questions to ask our doctor. All answers are greatly appreciated. Thank you, Hello 13
Men with PBC: My boyfriend of 7 years was... - PBC Foundation
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Hello13
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My hepatologist told me there are no diet restrictions she said i could have 3 glasses of wine a week but i have chosen not to consume alcohol
I take ursofalk and so far no side effects
I know there is other meds out there if your boyfriend cannot tolerate urso
Its important to have a hepatologist he has faith in and can talk about this condition
Good luck with it
Thank you for your response. How long have you had this disease?
Recently tests are still inconclusive but hepatologist has put me on urso and bloods will be done in 3 months time to see if levels come down
in reply to Ballymahon2
This blows me away. Why would any doctor say diet doesn't matter? Of course, it is probably the one thing we can do to help our liver. The liver processes everything we put on or in our bodies. My liver and spleen were enlarged, I was losing platelets like crazy and suffering from URQ pain and fatigue. I lowered my LFTs, glucose and cholesterol and upped my platelets by improving my diet in about four months time. The main thing is to avoid red meat as it is so hard for the liver to process. I eat a lot of chicken and try to eat whatever fish is still safe to eat. I eat raw or steamed vegetables and fruit like strawberries and blueberries for antioxidants. I put a lot of stuff in the blender like organic baby spinach, frozen fruit pieces, even a cube of frozen organic lemon juice now and then. Lemon is an amazing healer, google it! I buy organic and non-GMO everything that I can. I avoid drugs that hurt the liver like Tylenol, aspartame and high fructose corn syrup. I also gave up sodas. I drink a lot of water because I also have Sjogren's. I've had PBC close to thirty years, AIH for six years, never had URSO and eighty years old with no symptoms. Knowing you are dying is a really good incentive to improve your diet.
gwillistexas in reply to
You are an amazing lady. How did you make it this long with no Urso? I drink my share of water w/fresh lemon daily. I grate the lemon rind sometimes as I understand it is the most beneficial part of the lemon. I’m not always good with my diet. My husband is a little bit picky so it’s a little challenging to always eat what I should. 😊
in reply to gwillistexas
I was diagnosed in 1991 and told I would be dead in five to ten years. I took my path report to a doctor in another city and he said they had never seen pbc in such early stage and, like they say, I would probably not die from pbc. But I doubt he expected me to live to be eighty either. Before biopsy I had severe itching for over three years. When I got a pc and discovered URSO, I couldn't convince any doctor to prescribe it because my LFTs were always within normal limits. I don't believe our doctors knew much about pbc or urso back then. My primary doctor kept tabs on my LFTs every six months and always said the infernal itching had nothing to do with the progress of the disease. When my now retired liver doctor said I was in advanced stage cirrhosis last spring, I really got serious and began to learn all I could about this disease. Losing platelets is one of the worst things that can happen to us and I'm grateful I was able to reverse my downhill progress. Of course, what helps one of us may not be what works for another.
Ballymahon2 in reply to
You are an inspiration to the rest of us thanks for sharing your advice about diet etc
Hope you continue to feel well
gwillistexas in reply to
Well, you certainly proved the first Dr wrong thank goodness. So, with the changes in your diet, etc. you are maintaining & not progressing further? That’s encouraging & it’s more or less a miracle that you were able to work so hard to reverse the progression & are having good results.
in reply to gwillistexas
It was a happy accident. I was already juicing for my varicose veins, but when the CT scan showed my liver and spleen were enlarged and the doctor said I was losing platelets, I was terrified. I searched what we should eat or not eat with pbc and began to eat more healthy. The results of my tests were nothing short of a miracle. It is hard to keep up a healthy diet all of the time, but in January we'll know if I'm still doing well. From July to October, my platelets went up from 113 to 130, Glucose from 120 to 105, Cholesterol from 206 to 197, AST 31 to 27, ALT 18 to 17, AlkPhos. from 99 to 97. Total Bilrubin remains steady at 0.3. Even my CPAP doctor was impressed.
gwillistexas in reply to
I researched the food list as well & I know what I should avoid, but sometimes I’ve just gotta have it, lol! I am so happy you were able to get your labs in line. You are a strong lady. Be sure & keep us posted on your labs in January. ❤️
Ballymahon2 in reply to
I think my hepatologist meant that we dont need to avoid certain foods obviously a low fat diet cutting down on salt sugar and drinking lots of water eating veg and fruit etc is good for the liver
You have a very good diet tanjah thanks for sharing that with us
Its interesting what you said about red meat
I think i will cut it out also
in reply to Ballymahon2
Yes, red meat is my enemy. Even the organic, and I know it's organic because I buy it locally. Evidently, at this stage in the disease it is simply more than my liver can handle and the gut pain is incredible.
tonia17 in reply to
I have issues with red meat as well. The proteins are broke down in the liver and I think your correct, it just overwhelming to our livers. I can eat 3-4 slices of a good steak but more than that and I have the LRQ pain...
I stick with Salmon or Shrimp for meat when I eat it 3-4xs a week and lots of pinto/navy/garbanzo beans. Cottage Cheese and “oui” yogurt.
in reply to tonia17
I'm not a fan of yogurt, but after I told my daughter how it's supposed to help me, she brings me Chobani Greek Yogurt with fruit on the bottom. It's better than most.
gwillistexas in reply to
Yes it’s good👍
tonia17 in reply to
Tanjah you are SPOT ON!
We ARE what we EAT...
Sometimes I think it’s lack of education and sometimes just laziness on behalf of doctors. Maybe they hear too many “excuses” and give up... but if you have a diseased (progressive at that!!) Liver, to tell someone it’s ok to drink alcohol and take Tylenol is malpractice! It just boggles my brain.
My GI said Tylenol is ok but not frequent
Mine did too but you need to read what just one dose does to the liver...you won’t take it again...if we had a healthy liver it would be ok...it will heal and keep going but we don’t...
So what do you take for headaches or any other ache?
in reply to gwillistexas
I recently took advil which my Hepatologist said, a few ibuprofen here & there is definitely okay.
in reply to tonia17
I run everything by my hepatologist before I take anything even supplements. He is good like that telling me what I need to do.
He said I can have an occasional drink. It is not an issue.
Hi,
Your husband is lucky to have your advocacy! One thing to hang on to is that drs. say that most will die "with" PBC and not from PBC. In general it is a slow progressing disease -- but of course there are exceptions. Each case is individual.
I suggest you Go to the PBC foundation- link above. Join the foundation ASAP. ( it's a separate membership from this peer support group)
You create a User Name and PW ( it's free). And then you will have access to current medical-scientific info about PBC.
It can prepare you for dr visits--- As for what questions to ask, etc..
once you join the Foundation- log in and you will have online access to the latest "Bear Facts newsletter". (Sept 2017) Print it out - its got an 8 page insert with Questions to ask your doctor and latest on diagnosis and treatments. Very helpful.
There are some men with PBC on the forum.
Hope this helps.
Hi Hello13
Starting URSO can cause tummy problems. The patient information leaflet (PIIL) will give guidance on how to take the tablets and what weight to tablet ratio should be. My PIL recommends taking the dose initially split over the day for at least the first month and after that period of time the dose can be taken all at the same time. If the tummy problems do not settle down then something like Omeprazole may help. Sometimes it can be the fillers in the medication which cause the problem and as there is more that one type of URSO your chap could try an alternative. (i. e., Ursofalk, Ursodiol).
There are no specific dietary recommendations although some of us have found that increasing vegetables and fruit and reducing red meat may be helpful. Perhaps there are foods that your boyfriend finds harder now to digest. I found it beneficial to avoid all sugary products including cola and lemonade drinks and to cut back on salt intake. If he is carrying a bit of weight then losing some will be helpful. There is information on exercise in the PBC Foundation member's section - I find walking very beneficial and when I cannot get out because of the weather I have a static bike. It is said that life expectancy for those with PBC is no different to the general population however there are always exceptions.
I hope you have a good hepatologist with whom you can share your concerns but if that is not available to you then you will find a great bunch of people on here who share their own experiences.
keep in touch with us, best wishes
Thank you so much for your information.
Oh yeah, I cut out ALL SODA...
Water-tea-coffee only and lemonade...
Can’t cut out my lemonade and most times it’s an Arnold Palmer...half sweet!
Anyone tried “monk fruit” sweetener?
in reply to tonia17
Yes...but it tastes strange to me.
I have had pbc for 20 years I take 4 urso every morning I have not changed what I eat or drink I get regular checks now only once a year instead it was every 6 months hope this helps you to stop worring
susanburgess...that’s encouraging. So hopefully, once our drs feel our bloods are stabilized, we don’t have to be seen as often. That would be a blessing. 😊
in reply to gwillistexas
I see my hepatolgist 4x a year. I don't mind since I feel more secured that he is looking out for me.
In addition because I am on statins, LFTs have to be monitored.
gwillistexas in reply to
I’m hoping my Internist will converse w/ my GI about putting me back on statins. I need them. Maybe even a lower dose. I was on Simvastatin 40 mg. It did a darn good job.
in reply to gwillistexas
My Hepatologist wanted me back on them because he was concerned. I consulted with my GI who is also my primary care doctor as well as the cardiologist. Cardiologist even called up my Hepatologist to discuss. All 3 of them said it would be safe & beneficial for me to go back on them. I took myself off them with permission for ~2 years when I was diagnosed with pbc.
gwillistexas in reply to
I was taken off by my Internist when my Alp was elevated. I have to have it to keep cholesterol down. I’m not seeing a cardiologist. What statin do you take?
in reply to gwillistexas
The GI told me to also check in with a cardiologist (he recommended her to me) because they know more about cardio risks. atorvastatin10 mg-1 pill every other day.
Thank you - I will try!!
susanburgess...in regards to your diet, what about sugar & salt? Those 2 things & fats are what my dr mentioned. I’m 63 & would love to know I can keep PBC under control like you have.
I'm 55 year old man with it, I was diagnosed 4 years ago at stage 4, I had it a lot longer than 4 years but my family doctor didn't figure it out and I had high liver counts for years I started having pain on my right side and was referred to a specialist and he figured it out, blood test and liver biopsy, I take 4 urso (300 mg each) a day 2 in the morning and 2 in the evening, I usually take the morning meds with toast and I don't have any problems but I also take pantoprazole every morning and that is for heartburn. I eat and drink whatever I want however I can tell sometimes that's not always good. The urso worked very well all my liver counts are now normal , I have them checked twice a year and a ultrsound done once a year. This year I also had a fibroscan . I have fibrosis but since the starting of urso it hasn't progressed any further, the doctor also does a tumor marker with the blood test. This site is by far the best help of anything and there are a lot of great people on here that understand PBC . I very seldom post on here but I'm always reading a lot. Hopefully this will help Its more common for women to get this disease but there are several men that do get it. I think the biggest problem is the medical community really doesn't have many answers about it other than meds slow it down. My doctors also told me most people die with it and not from it and that's the plan I'm taking , I just live my life normally but it is always on your mind. If you have any questions or he does feel free to contact me, It really scared the heck out of me when I was first diagnosed but knowing as much as you can about it really helps and this site and the people on here are a big help. Good luck with it.
Thank you so much - your words are a big comfort. And will look into taking pantoprazole.
Yes, it is scary - I just learned through Elastography in Sept. 2017 I am in 3 now (stage 1 dx'd 2001, 2 in 2011, 3 now). I'm a 73-year old woman - not many "symptoms" except for a lot of other autoimmune accompanying diseases that are very debilitating. I am learning STILL after 17 years!. I have learned the following, first and foremost: KEEP TALKING WITH AS MANY PBCers AS YOU CAN AND LEARN HOW TO LIVE, I MEAN LIVE, WITH THE AILMENT. I also belong to the PBCers Organization and in the Digest, there is one 75 year old MAN WHO HAS BEEN IN STAGE 4 FOR TEN STRAIGHT YEARS. Still going strong and has a world of advice.
You might research getting into the PBCers Organization found online and get and contribute to their Digest. They are a little "quiet" right now because of the Holidays, so don't be dismayed. I understand there are about 2,000 of them; many of them sit still and read; others contribute. They are there. You won't believe what you will read with them and with HealthUnlocked, but it is soooo important to share continually. Keep asking questions/no question is unimportant, none.
Our doctors, many of them, are still learning also, alas. That's why the experiences you glean from with other PBCers are so important. Again, you won't believe the world of advice out there, and Stage 4, as I am learning, is not a death sentence; it is an opportunity to continue living in the finest fashion we can create for ourselves!
Kathleen in Ohio, 73, just learned Stage 3 (Stage 1 in 2001 by biopsy; Stage 2 by biopsy 2011; Stage 3 Elastography Sept. 2017 - off many medications doctors once thought necessary - looking foward to a great Stage 3/4). Ursodiol 300 mg 2 in a.m./1 in p.m. 150 lbs - lost 50 lbs in 2016! Kept off all 2017!
Your history sounds much like that of my husband’s! His counts are down, but not normal. Fatigue and brain fog are major issues though. I’ve noticed more men responding in the last 6 months or so. Not sure if it’s due to improved diagnoses, more education, or if the disease is affecting more men now. In any case, glad you are doing well.
Be very careful: Be sure that your boyfriend's doctor is prescribing - at least if it is Ursodiol because Ursodiol is prescribed by his weight only, by his weight only. You didn't mention what medication he is on. I don't know about anything other than Ursodiol, and too much Ursodiol can cause great, great problems. Again, I stress I do not know about anything else other than Ursodiol, and it is PRESCRIBED BY OUR WEIGHT ONLY, NOT BY OUR SYMPTOMS. Kathleen in Ohio, 73, stage 3 now
My husband was diagnosed at stage 3/4. I am glad your BF’s was caught earlier. Take the Urso with food. My hubby started on 5 tablets at once and it is easier with food. Sometimes he gets bad cramps, but they are becoming less common. Check out the PBC sites and you will learn a lot. There are some groups on Facebook you can join and they are most helpful. More women than men get PBC, but I seem to be seeing more men who are accessing these support groups lately. I think many men have a hard time talking about this, but knowledge is key. That is why I reached out for support...so I could help him. Stay positive! He is lucky to have you! 😉
When I first started taking ursofalk this year, initially I started getting migraines ( I don’t normally ) it was hideous, so I took myself off them for 2 weeks, I then introduced 1 a week, then 2 , then 3 ( or even two weeks) I’m now ok with them. Good luck xxxx
I was diagnosed in February 2013 at the age of 64 I take 4 urso a day but take them while eating my tea no side effects I eat what I want but some foods don't like me so I stay away from them I've never like cream or fatty foods I'd stopped drinking before diagnosed and stopped smoking after as I've got COPD I panicked at first but I got over it it's frightening reading things on here a lot of them seem to think everything else is related to PBC so relax sit back and put a film on ☺
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