Hep C, Diabetes, Sjogrens Syndrome and lymphectomy

alpha_mare · June 9, 2006, 4:48pm

I just got diagnosed with Sjogren's Syndrome (auto immune system attacks everything) after having it for 11 years (started during therapy, may have had it before from my acute Hep C infection) and diabetes. A few years after therapy everything just fell apart: pigment loss with hyperpigment and alopecia, sudden obesity, four root canals, lymphectomy of many nodes in my neck not due to teeth, severe unexplained RLL pneumonia, joint and bone problems with neuropathy, etc, etc and no one could tell me why. They told me I was just depressed ( I guess depression causes pneumonia) and had panic attacks and medicated me as such.

alpha_mare · July 1, 2006, 4:01pm

I guess I'm a rarity, though I don't think so. I guess it goes undiagnosed. I wish someone would reply because I'm really scared. I would like to someone who had tx in early-mid 1990s with Intron-A about tx, because I don't want to be negative and its serious so I'm not sure a forum is the best place, especially if I'm a minority. I don't want to discourage anyone from getting tx but need to talk about whats happening to me, odds for cancer, etc.

hep93 · July 1, 2006, 6:46pm

Cured4, I'm sorry you have not gotten a reply. It does seem that you are in the minority, as far as Sjogren's following hep C treatment, etc. Every individual responds differently to each drug. Have you ever read of the particular problems that you have, following hep C treatment? It could be totally unrelated to treatment. You might find some answers in other liver/hepatitis forums.

alpha_mare · July 4, 2006, 4:47am

Thanks for the replies. Actually, Sjogren's and Lupus are extremely hard to diagnose. It's very typical to wait a decade or more for diagnoses, all the time experiencing mild to more severe problems that all seem unrelated. In my case, my dry lungs, sinus infections, dry skin, dry eyes, diverticulosis/IBS, asthma, dental problems, and dry throat all seemed to be separate problems having different causes. Sjogrens affects women more than men and a diagnoses is primarily based on the dryness of your eyes, and many doctors seem reluctant to diagnose this condition. In my case, my ANA go really high and I get sick and a lot of pain in the lymph nodes and joints. In the case of heppers, they expect us to have swollen glands, even years after tx. Swollen glands can be related to anything. I think there will be an explosion of more people being diagnosed with these conditions as physicians become more aware of the connection between Hepatitis and/or tx and these conditions. I was told I had fibromyalgia and offered only antidepressants, even though my ANA was quite high and I was having some kind of immune system attack. I was warned by my hepatologist about the possibility of developing a lupus-like condition as a result of tx (or hep, told at time of tx) back in 1994 and the product insert addresses potential immune system attacks, but even though I have very apparent autoimmune problems (50% pigment loss with some hyperpigmentation, arthitis, diabetes, rashes, and multiple allergies), it wasn't until a good rheumatologist that also knew a lot about hepatitis tested my eyes for moisture that I was investigated. I do not have the SSB antibodies which 75% of Sjogrens people have because I have a Sjogren's like/lupus like condition resulting from a disease or medication. I do, however, benefit from all the tx for these disorders and have actually been doing a lot better, so the diagnosis was a good thing. The drugs even out my screwed up immune system, are fixing my fatty liver, taken me off regular sinus meds for chronic sinusitis, are preventing blindness from dry eyes, help me swallow easier, totally relieve my IBS symptoms and perhaps in part the condition, and helped my swollen face and neck by making sure my salivary glands drain properly and keep my teeth from developing excess tartar and decay. Though I have multiple drug allergies and trouble tolerating drugs, these meds have been surprisingly easy to tolerate and speaking with those on the lupus forum, a lot of the meds are like that. I will be put on plaquenil, which is a quinine derivative, and the side effects are about nil with that, but it will even me out more and prevent more systemic attacks by my immune system. I'm really happy I have a rheumatologist that is hip to hepatitis aftercare because I'm finally starting to feel like my old self (before tx) or perhaps, better than even that. I was probably having immune system problems before tx and that's why I had so much trouble on tx. My labs have normalized, my liver levels are normal due to glucophage, and sed rate is better due to evoxac, which has a side effect of weight loss, which for me is good. I'm just glad my rheumatologist was willing to try to help me and if someone is having similar problems, not to give up but keep struggling to get to the right doctor and know there is relief out there for some of this. This is a really underdiagnosed problem on the whole, because it effects women more than men, and we tend to get told everything is in your head or brushed aside or told we are just depressed. I never thought these disparate problems had a single cause.

Thanks again. It's good to hear from you both. Hep93, I'm glad you are doing better. I prayed for you and will continue. Thanks Jennifer. No rush.