Hi, my latest news is IgG4 is now up to 4 or 5 times the upper limit, but after liver biopsy they still refuse to diagnose anything other than classic PSC rather than Auto-Immune Pancreatitis or anything else. What they have found is small areas of inflammatory granulomas in the liver and ‘up to moderate’ scarring indicative of an ‘ongoing inflammatory liver disease’.
I had a bone scan done too, and it confirms bone thinning in the lumbar spine consistent with osteoporosis. Now they want to put me on something called Alendronic Acid along with enhanced Vitamin D supplementation. I’m very nervous about starting the Alendronic Acid, it seems like I’d be on it for a long time and the side effects include irritation of the digestive tract, surely that’s going to make the PSC worse?! They haven’t checked my kidneys either and it says it can effect those too if there’s a problem already there. I have to go to the dentist first to prepare to start the medication and have any issues fixed as there’s a possibility of it attacking the jaw bone.
I’m due to see my specialist in early March and will discuss with him then. I’m not sure what the bone scan score was. If its very poor and this is an urgent treatment, or if it’s not so bad but he’s thinking of prescribing to build the bone up in case he later needed to prescribe steroids.
This seems like quite a major medicine to be prescribed, has anyone else been given it or anything similar and how did it affect your PSC?
Sorry you are having more and more issues. Bone loss goes hand in hand with liver disease. I had bone loss before transplant which showed up in the bone scan.
I had one done last year around the 3 year mark post transplant and there had been a little more loss. One thing I discovered as well after transplant is that your testosterone levels often go way low as well, thus that affects bone health as well. I would wait and speak with your hepatologist before starting the Alendronic Acid. I’d ask about Citracal-D and ask about having testosterone screenings done. They need to do the full blown test. After my doctor made a peer-peer call with Blue Cross, they finally agreed to pay for my testosterone. I inject 1 ml once a week. I’m 3-1/2 years post transplant. The injections aren’t all that bad. I put it in my thigh muscle and just switch sides each week. Hope this helps.
Thanks Mark, I will make sure they do all the necessary checks beforehand and will look up the alternative you mentioned. I’ve also now read it’s contraindicated if you have cirrhosis with any chance of portal hypertension, so I need everything checked.
If you are igg4 positive, shouldnt they be trying corticosteroids? My doctor told me that igG4 positve psc has been shown to respond to steroids and go into remission. But I am. ot igg4 positive. I just googled around and fou multiple articles talking about igg4 positive psc (really a "mimic"of psc) and bow corticosteroids can treat it.
Yes, well this is the issue. My specialist says my liver biopsy doesn’t show the features of IgG4 rd and so, despite my blood level of 4.57 being 4-5 times over the upper limit, he still thinks it’s classic PSC. The complication of osteoporosis (-2.6 lumbar) in my spine surely means I can’t be safely prescribed steroids until my bone is strong enough,…but on reading about bisphosphonates and the digestive tract side effects I really don’t want to take A Acid. Seems to me it might make PSC worse? I will talk with him about alternatives but I’m kind of stuck. Also they found granulomas in the liver and I have seen that might mean Sarcoidosis, which if chronic would again mean steroids…and so it goes on…