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Date Joined Dec 2006
Total Posts : 707
Posted 8/10/2007 4:38 PM (GMT -7)
I got a call from my GI doctor about
an hour ago. I do not understand all he said but evidently I do have early stage primary biliary cirrhosis (which is just a name). I don't actually have cirrhosis yet and evidently there is a medication I can take that can either halt the disease in its present stage or slow down any progression. Supposedly this is an autoimmune disease (no surprise to me there). Some of the symptoms that I have experienced over the last year are so are classic PBC symptoms and others may be. So, called my Mom and she is like so sure this is now the "ANSWER" we have been waiting for and that now we have a name and will soon be on a medication and I'll just be my happy old self again. I, on the other hand, am not jumping up and down with joy and hopefulness. I told Mom after all these years of doctor to doctor to doctor and maybe it is this or maybe it is that or lets try this or that, I'm not getting my hopes up. It's been too long of not knowing anything definite. The GI doctor said it could be the lupus involving the liver and causing the PBC or it could be a separate disease on top of the lupus. There is just no knowing for sure. I understand my Mom's reaction - she just wants her daughter to be better. I also understand she is an optimist and I am a pessimist. I used to be much more optimistic but the last few years of disappointment and struggle have changed my outlook.
So, this could explain some of the odd symptoms I've had that aren't on the Lupus checklist.
As far as the biopsy goes, I am still experiencing discomfort from it and the GI doctor reiterated to me yet again to not exert myself and don't lift anything and rest. Other than working (which all I do is sit at my desk here at home and type), resting is all I have done.
I'm supposed to call the GI doc's office Monday and get an appointment with him the end of next week or the following week to go over everything.
Muscle disorder 2007; Lupus Sept. 2006;
IBS 2004; Chronic Hives 2002.
Medications: Allegra and Zantac; Lunesta, and Ultram PRN.
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Date Joined Mar 2006
Total Posts : 2570
Posted 8/10/2007 5:10 PM (GMT -7)
I'm so sorry you have primary biliary cirrhosis, but I'm glad to know it can be controlled or slowed down with medication. I'm curious as to why you don't take anything for your lupus? I hope your GI doc will prescribe meds that will make you feel better real soon. Thanks for letting us know.
Hang in there,
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin
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Date Joined Jul 2007
Total Posts : 261
Posted 8/10/2007 6:10 PM (GMT -7)
Hi, Diane. I'm sorry you've got this new diagnosis to deal with, but just maybe it is the answer you've been looking for. The good news according to what you've been told is that it is treatable...maybe even stoppable. You just have to make yourself grab hold of the little piece of hope that's been passed your way. That's all any of us can do from one day to the next. That's the secret that keeps us going. Just try to take it one day at a time. Definitely continue resting from that biopsy to allow your body what it needs to heal. My mom is the same way with her optimism. Try to let your worry rest in that optimism. Allow yourself to take a break and relax, your mind and body need it. Keep us informed on how you do and what you find out. Take care.
Always looking for the silver lining, Sharen
SLE '06, Sjogren's '06, Traumatic Head Injury '94
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Date Joined Jan 2004
Total Posts : 4151
Posted 8/10/2007 7:54 PM (GMT -7)
Diane, It sounds like they caught it early before the damage (cirrhosis). I'm glad its treatable, that is such a relief. Just another gift SLE gives, isn't it. I know that it is not uncommon for Primary Biliary Cirrhosis to go along with a connective tissue disease. The most common are Lupus and Sjogren's.
Please take your doc's advice and take it easy and heal completely from your biopsy. I hope you get to feeling better soon.
Co-Moderator ~ IBS Forum
Co-Moderator ~ Lupus Forum
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Klonopin PRN, Miralax 17g, Supplements
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Date Joined Dec 2004
Total Posts : 8198
Posted 8/11/2007 9:29 AM (GMT -7)
I hope the doctors get you on the right treatment plan soon to help get your symptoms under control....(((hugs))). Please take care and keep us updated. You are in my thoughts and prayers.
Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Sensory Polyneuropathy
For he wounds, but he also binds up; he injures, but his hands also heal.
Please help HW.
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Date Joined Dec 2005
Total Posts : 1944
Posted 8/11/2007 1:14 PM (GMT -7)
I'm so glad they caught this in the early stages. There are two forms of PBC, from what I've been reading, primary--like you said a disease of its own, or secondary--caused from another disease like your lupus. They have been successfully treating this condition for a long time and there are many things they can do should the disease progress, but since you are getting treatment now, hopefully that will not happen. Luckily there is a lot of research on PBC and experience with it and the fact your liver isn't damaged is terrific news and with treatment you can prevent that now. Kudos to your on-the-ball doctors and I'm so glad that while, you do have a problem brewing, they feel they can stop it in its tracks before damage occurs. I'm sorry you have liver disease and I understand what that is like, and I wish so much you did not have it but am so relieved thta they can treat it and you have no damage. That is really good news.
I hope they give you some meds for pain and you take extra time to rest. When I was working, I used a whole week one time after a liver biopsy (I've had 4 or 5, I've lost count). I hope you feel better soon and am glad they figured this out so early. Most people don't get diagnosed as quickly as you. That is very good. You will be in my thoughts and prayers, ocean.
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments
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Date Joined Jul 2005
Total Posts : 5403
Posted 8/12/2007 8:42 AM (GMT -7)
Diane, I'm sorry to hear about
the results of your biopsy, however it's good that they think it is treatable and that hopefully the disease won't progress. I read your post about
the biopsy and got tears in my eyes when you talked about
how uncomfortable it was for you. I just hate that any of us have to go through some of these very painful tests and procedures.
I really hope the meds help you feel better, but I do understand your hesitation about
getting too excited about
possibly feeling better.
I'm hoping the soreness from the biopsy goes away soon. Please continue to take good care of yourself and let your mom continue to take care of you too. Love and hugs
Diagnosis: UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds: Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 25mg; Neurontin 200mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops
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