Hi
I am new to this forum and grateful that it exists.
I have just been diagnosed with PBC (early stage) and was put on Ursodiol. I am 62 and otherwise really healthy and fit. Yet at this point. I am really struggling with fatigue (and occasional dizzy spells) and wondering if anybody else experienced similar symptoms and for how long.
Thanks in advance
Unfortunately the fatigue is usually caused by the PBC itself. All of us with this illness struggle with moderate to severe fatigue. My own is severe, but then I have another chronic illness which also causes fatigue. Yep, I got a double dose of exhaustion. Ugh!
Some people with PBC are sensitive to the fillers in the ursodiol pills and have had to ask their pharmacist to get the med from a different manufacturer who uses more benign fillers. Hopefully one of those persons who has had to get through that struggle will chime in here.
Carol C.
I have been on Urso for 3 months now. I don’t react well to medication, so I’ve had a lot of side effects. My doctor plans to decrease meds as soon as my enzymes get better consistently.Na
After 27 years on Urso and starting out on the Urso dosage study 27 yrs ago I can assure you that Liver Fatigue is not a side effect of Urso.
When you have a Liver disease Fatigue is a major part in parcel to the disease itself. Your liver is working overtime to help in the systematic function (Major Organ) for your bodily function.
Year's ago after Urso had been out on the market for some time the Parma assured us at many conferences that Urso’s side effects were few and mostly benign.
After all these years I'm finding out that the liver fatigue is better when I monitor my diet better. After my Auto Immune system has effected almost all my major organs, I've become Gluten, Lactose, Lettuce intolerant. I changed my diet a couple years ago to Plant based.
I'm pleasantly surprised with the results. Side note: I'm eating almost no meat and the fatigue has improved. Meat is so difficult on a compromised Liver. The Protein is hard to deal with on a Plant based diet yes but it's not impossible.
If you consider your Liver is the start of your Digestive system it makes sense to try and fix your eating habits.
Hope this is of some help to you and others. These are my new life skills after over 27 yrs with PBC. Plus lots of research that I've instilled in my life trying to find answers how to change my life with a compromised immune system.
Jean Haynes
Jeanokaz
Tucson OK.
Thank you Jean. Really helpful observations.
I am beginning to think that I am associating my fatigue with taking Urdu since I just started on it— but that in fact it had been there before, yet attributed to life stress, the pandemic etc etc.
Your suggestions about diet make a lot of sense. I have begun eating almost no meat years ago and we cook very healthy and plant based meals, grow our own vegetables and don’t drink alcohol (see the halo around my head😊). I do like my home baked bread though (must be the German in me) but may experiment with cutting it out for a while to see if it makes a difference.
Thanks again
Susanne
Hi thank I for ur most helpful post sharing. I was also told to eat plant based. Wonder if we can chat. Do u know if dr Joel Fuhrman in New Jersey ? And his partner Dr Benson. Recommend as u said.
Hi, I'm in Tucson AZ. I'm sorry I don't know these Physicians in NJ. Don't change your diet until you at least chat with your own doctor.
Your doctor knows your medical history and can help you make the proper adjustments in your health plan.
I can tell you what works for me and what kind if changes that I've made, but I still think it's important to talk it over with your own doctor. I know that the Plant based diet is very popular these days with most physicians. As I explained I have some intolerance issues and my “doc” made that suggestion to me.
Good luck with your search.
Jean Haynes
Jeanokaz
This is such a great Subject (Fatigue). We are all not the same in our walk with this disease and our walk in life. Last night after I replied to “2bear” to talk to her doctor I got to thinking that it sounded like I was telling Susan one thing and then turning around and telling “2bear” another thing. Nope, I firmly believe that we are all an enigma with this darn disease but.... We do need to share what we are doing with our Medical Professional groups. Be it PCP or Gastro, Hep. Or even your Rheumatologist.
Having said this I have been taking Doxipin rx for many years. Hmmm maybe that's working some of the time?
But still yet I also have Non Hodgkins Lymphoma. The major side effect is.... (drumbeats🎶) FATIGUE!
So does that mean the plant based diet is a moot try to notice a difference. No because I'm in remission with NHL right now. But I still have my times when I feel Unplugged and go in for a nap.
I think what I'm trying to point out here is that there are way to many variables connected with Auto Immunity diseases to calculate just what the cause is in most cases is.
Is it the Urso, hmmm 🤔 I'm
still confident that it's not the Urso in my case. Because I have seen changes. But I'm also doing this diet with my doctors instructions. I've been on PB diet for 2 years. I'm losing more inches than pounds. See there's another variable.
But in finality here yes in all cases visit with your physician and take into account what's going on in your medical history.
Ok stepping down now off the soapbox. 🤔❣️
Thank you for listening.
Thank you Jean really helpful insights.
Your very welcome, if I can be of any more help do please ask questions. It's been a long walk for me and it seems that my Immune system is really on point to compromise my body as a whole. But, after all that's the process going on with the Auto attack going on.
I helped to run a chat room years ago with PBCers for 8 yrs and worked closely with Linie Moore in helping to establish the PBCers.org
I get it how daunting this diagnosis (dx) can be. But if your in early stages it's a very slowly progression for the most part. It seemed like every year when I would go into the doc I would have a new dx added to my list of auto immune issues.
I started out in stage 2 and my last stage test I was in stage 3. What I'm saying here is don't panic it's a slow process for some of us. I know that there will be someone to argue that point here but it's all in how you attitude is.
Hang in there. I'm here if you need to chat or vent. 🥰🤗
Hi. I have suffered from exhaustion for a couple of years now and was only diagnosed with PBC recently. For me it’s extreme exhaustion and some days I can’t even get out of bed. I’ve only been on Urso for about 3 weeks so I’m not sure I’m a good judge but so far my symptoms are about the same as before. The itching is getting worse! I’m trying to stay positive but it’s really hard when I feel like this disease has taken who I really am away from me.
Hi, what your suffering from is Liver Fatigue. This is a symptom of PBC not a side effect of Urso. You may not have noticed it until you were diagnosed.
The Dizzy spells you might want to discuss with your PCP.
Jean AZ
Happy New Year everyone!
I am writing to report that my initial symptoms have all but disappeared. While I was initially struggling with fatigue at the beginning of my diagnosis, I am now almost back to normal with respect to my energy level.
It seems that when caught in the early stages, there is a good chance that this condition can be managed well with Ursodiol. So very grateful for this.
Thanks again for all your responses and take care of yourselves.
Susanne
Urso slows progression, so you're absolutely right, the sooner you take it the better. And it's great to hear that your fatigue has improved. Long may it continue.
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