Hep C, Diabetes, Sjogrens Syndrome and lymphectomy

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. 

  I have been diagnosed with Hepatits C recently, genotype 1b. I was also diagnosed with lupus in 1998 with very few medical issues and have not taken meds.  Now the rheumotologist has diagnosed me with MCTD.  Do you know of anyone who has successfully completed the interfon combo without drastically making the autoimmune disease worse?  I would appreciate any info you can share.  Thanks!

Yes, I did in 1994.  I had some sort of autoimmune problem when I started the Intron A tx in 1994, but it was unknown to me and undiagnosed by anyone.   I started losing my pigment when I got acute hepatitis, but before I went on interferon and the pigment loss is due to an autoimmune response against the pigment in my skin.  This would tell me that the hepatitis C either created the autoimmune condition or made it worse or perhaps is not related directly.  I had a horrible time on Interferon, the worst anyone had ever seen. I ended up going through it on stadol nasal spray.  I couldn't take any medications by mouth. I developed allergies to every medication given to me while on interferon tx, and remain allergic to them to this day, even medications I had taken many times before with no problems.  I developed severe endometriosis and polycystic ovary which remained after stopping interferon and actually worsened with time and ended up getting full hystero in 1998, four years after tx.  Also that year, I had to have lymph nodes removed from my neck that swelled up and were choking me for no reason (they said it was from the interferon), I had 4 teeth crumble all at once in the same day at the same time (molars while I was chewing) and had to have four root canals, and I also got severe RLL pneumonia for no reason and nearly died, also asthma, which I never had before.  All that bad stuff within a few months of each other, like my body just fell apart. 

I went nuts on tx with the most severe anxiety you could ever feel.  I wanted to cut my guts out, my innards itched so much.  My hair fell out.  My endocrine system went nuts.  I developed hypoglycemia.  My appearance changed, my face got round and I started gaining weight rapidly, when I was always a very skinny person.  I developed arthitis, which I still battle with today.  I knew they were overdosing my immune system.  I could just feel it.  But they told me the disease would not go away if they didn't keep me on a high dose.  Nowadays, they would've lowered the dosage, which was all I needed.  Maybe the Hep C gave me the autoimmune problem, maybe the Interferon, or maybe I always had it and that's why tx was so hard for me.  I weighed 105 pounds and they gave me the same dose they give a 200 lb man.  That can't be right.  The biggest problem in my tx was that no one knew or believed me that I was having an autoimmune problem.  They were so concerned about killing the hepatitis they nearly killed me. The drugs now are different, and the dosing different, they are willing to cut back dosing and can use different meds. And you have the great advantage of knowing ahead of time that you have an autoimmune disorder.  I'm sure your rheumie and hep doctor will be on the lookout for any bad side effects and signs of problems and make appropriate adjustments.  On a positive note, my autoimmune condition caused me to have an excellent response to Interferon and I have been PCR negative since 1994 and my ALTS finally low and stable.  My doctor told me that the people who have the worst side effects from tx are the ones who usually have the best results from it. 

Had anyone known I had an autoimmune problem, I'm sure my tx would've gone differently and not been such a horror show.

Don't be discouraged.  I thank God every day that I got tx and it seems to have worked for me and I would definitely go for it again if I had to, but under my rules.

Hope this helps

Good luck to you!

Connie

You mentioned the relationship between Hep C and Sjogren's. My Sjogren's Foundation book says sometimes the initial response against a virus or bacterium becomes chronic because the body can't clear the infection, and sometimes the response heads off in the autoimmune direction. Furthermore, infections that can cause chronic problems include Hep C, HIV and Streptococci. So there's thinking that some viral infections could have a role in the pathogenesis of Sjogren's.  Just keep in mind that Hep C can cause dry eye, dry mouth, and arthritis occurring in association with an enlarged parotid gland.

I hope that you find some of this helpful. Let us know how you're doing okay? Love, Butterflake

Have you told your hepatologist that your internist wants you to stop Viread? Have you researched all the side effects and outcomes of Viread? Are your liver enzymes within expected (normal) range now? If they aren't, the build up of toxins which the liver isn't eliminating might be causing you to feel badly.

As for your rheumatologist, you may want to get a second opinion, if for nothing else, but to make you feel better mentally.

Seeking gentle solutions sounds like a good idea. Eat plenty of fish, lean meats, veggies, and fruits. Try to limit your intake of processed food. I wish I could be more helpful. Even though it's taken a while for me to respond, I'd really like to know how you're feeling. (((Hugs))) Love, Butterflake

Butterflake said...
I do know that there is no specific test for lupus, so I don't know how your docs can say you're weak positive.

Have you told your hepatologist that your internist wants you to stop Viread? Have you researched all the side effects and outcomes of Viread? Are your liver enzymes within expected (normal) range now? If they aren't, the build up of toxins which the liver isn't eliminating might be causing you to feel badly.

Seeking gentle solutions sounds like a good idea. Eat plenty of fish, lean meats, veggies, and fruits. Try to limit your intake of processed food. I wish I could be more helpful. Even though it's taken a while for me to respond, I'd really like to know how you're feeling. (((Hugs))) Love, Butterflake