Hep C, Diabetes, Sjogrens Syndrome and lymphectomy

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cured4real?
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   Posted 6/9/2006 9:48 AM (GMT -7)   
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. 
 
I'm so glad that the medical community is finally starting to wake up to post Hep C/treatment problems.  I told the doctor that I still felt like I was on Intron A even though I had stopped taking it, but they just told me that it was the Hep C virus still attacking me, even though I was PCR neg but it was the Sjogren's and diabetes. 
 
Does anyone know if the Sjogrens is caused from tx or from Hep C?  I was pretty healthy for over a year with acute hep C before tx.  I felt like tx flipped on the "fight or flight" switch and it never got turned off.  I asked my doctors for immunosuppressants after tx and they thought I was nuts.  I called the drug company in 1994 to make them aware of this problem--an accelerated auto immune system-- even though it was my own dx.  Finally, I'm going to get immunosuppressants and I won't have to feel like ripping my guts out. 
 
I'm glad I got tx because in my case I've remained PCR negative, and I think they OD'd me a little on the Intron A but the virus has been well in remission for 11 years.  People getting tx now are luckier because they know all this stuff and have more options and the doctor's can be more flexible. 
 
Anyone else out there with Sjogren's from Hep C?  They want to start me on Plaquenil in a few weeks and I wondered what I'm up against.  Also, wondered about my lymph nodes and the Sjogren's since lymphoma is a possible consequence.  Has anyone had to have lymph nodes removed from Sjogren's?  They said mine were not cancerous but I worry about the future.  Also, the glucophage and evoxac they give me both give me the runs, and I going to be chained to the toilet when I start the plaquenil?
 
I hope everyone is doing good and I pray for the members of this site that everyone is healthy and happy and getting better. 
 
Hope to hear from you!

cured4real?
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   Posted 7/1/2006 9:01 AM (GMT -7)   
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
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   Posted 7/1/2006 11:46 AM (GMT -7)   
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.
 
Wishing you the best of luck in finding the answers you are seeking.
 
Connie

cured4real?
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   Posted 7/3/2006 9:47 PM (GMT -7)   

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. 


hep93
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   Posted 7/4/2006 12:44 PM (GMT -7)   

Thanks, Cured4.  Lots of info in your post.  I'm glad that you are feeling better these days.

Connie


sinicrol
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   Posted 7/4/2006 7:11 PM (GMT -7)   
 
  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! yeah

mom46
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   Posted 7/5/2006 10:41 AM (GMT -7)   

Hi Cured,

   I'm sorry your having a rough time. I know it must be frustrating. I found a good link about the causes of Sjogren's. 

 It looks like the cause is still unknown, but could be hereditary. I also have lupus and Sjogren's. I don't have hep c, but have my liver checked on a regular basis because of high risk meds. Take care and keep us updated. You will be in my thoughts and prayers.
                                            Babs
Diagnosis: Lupus and Restless leg syndrome 1990, RA, Asthma and  Fibro 1994, Sjogren's and Raynaud's 1995, Diverticulitis 1998, Minor stroke 2004, Atherosclerosis 2004, Seizures march 2005
 

JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.
 
Please help Healingwell succeed in helping others. Any donations will be greatly appreciated.
 


cured4real?
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Date Joined Dec 2005
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   Posted 7/5/2006 6:11 PM (GMT -7)   
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
Marji --Evoxac, HCTZ, Glucophage, Klonopin, Ultram, Robaxin...
"...brain, what is brain?"
--Kara, one of the "givers of pain and delight", aka woman of Sigma Draconis VI, "Spock's Brain" episode 56 season 3 of Star Trek


sinicrol
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Date Joined Jul 2006
Total Posts : 10
   Posted 7/6/2006 3:30 AM (GMT -7)   
Thank you, thank you, thank you! I was feeling as I was the only person that had both problems. I'm off to the hep doc this am and you have given me some new questions to ask. This is the toughest medical decision that I have ever made. I'm trying to decide whether the bark is worse than the bite and having answers from you is really going to help.

cured4real?
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Date Joined Dec 2005
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   Posted 7/7/2006 2:40 PM (GMT -7)   
Thank you! I thought I was alone too! I'm sure you're going to be fine. For me, I didn't want to have this disease that I could possibly spread to someone I love. If there was anything I could do to prevent that, I was going to try it. That was a big factor for me. I would never want to give someone Hep C, but I don't want to be an island either. Also, remember that Hep C caused or worsened my autoimmune conditions and the autoimmune conditions can worsen the Hep C. Will tx? At least your doctors can control that. Without any kind of tx, one has no way of controlling Hep C. For me, tx was taking control. Good to hear from you. I will pray for you and reply back if you want or something. Take care!
Marji --Evoxac, HCTZ, Glucophage, Klonopin, Ultram, Robaxin...
"...brain, what is brain?"
--Kara, one of the "givers of pain and delight", aka woman of Sigma Draconis VI, "Spock's Brain" episode 56 season 3 of Star Trek


sinicrol
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Date Joined Jul 2006
Total Posts : 10
   Posted 7/7/2006 4:17 PM (GMT -7)   
Unfortunately, the gastro doc appt. did not go well yesterday.  He does not have any experience in dealing with someone who has MCTD and Hep C and refuses to treat me.  My rhemo also does not have any experience with the two diseases.  The gastro's explanation was that the lupus and the interferon combo could put me into kidney failure.  I have never had a problem with my kidneys since I was diagnosed in 1982.  I guess I'm off to be a lab rat!  Linda

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 7/7/2006 8:33 PM (GMT -7)   
Sinicrol, you may need to go out of your area for treatment.  Is there a teaching hospital anywhere near you?  They often have the newest info at their disposal, as well as treatment studies.
 
Good luck to you!
 
Connie

cured4real?
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   Posted 7/7/2006 9:15 PM (GMT -7)   
Sinicrol, I agree with Connie. I was initially dx and set to be treated by a gasto guy (hepatologist) at a medical college. He had mentioned something about monitoring me especially closely but didn't say why and I didn't ask (I suspect my ANA was high) and they actually wanted to treat me with INH for TB at the same time and work on my back. Again, I think Connie is right. And there is a big difference between a plain gastroenterologist and a hepatologist and a hepatologist is really necessary, I think, when your situation is complication. The gastro I saw recently was great for removing a colon polyp and endoscopy, but never would have dx or even looked for the diabetes and autoimmune stuff and my liver levels would have kept going out of sight and he would have just kept telling me I was decompensating due to a Hep C infection even though I have been PCR neg for 12 years now. Some places in Florida have some programs going on, research studies and the like. Maybe you can qualify for something like that. Actually, both your rheumie and gastro probably do have experience with people with both an autoimmune condition and hepatitis C, but just don't know it. Based on what I've heard from friends, many people have or develop autoimmune related conditions due to the Hep C infection or while on tx, though they may never be diagnosed as such, just labelled crazy, or each symptom is treated separately. You know that I heard it takes an average of like 11 years for a diagnosis of lupus. Take care and keep plugging away. Maybe it's just their way of saying theyre in over their heads, since Hep C seems to worsen a lot of disorders without tx. Its the old Tao "action of inaction" where they believe that they are not acting because they do nothing. You'll find the right place. Connie is right. I went to Borland-Groover Clinic and they were really good, state of the art, and they are a research facility as well.
Marji --Evoxac, HCTZ, Glucophage, Klonopin, Ultram, Robaxin...
"...brain, what is brain?"
--Kara, one of the "givers of pain and delight", aka woman of Sigma Draconis VI, "Spock's Brain" episode 56 season 3 of Star Trek


wheredidigo
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Date Joined Mar 2006
Total Posts : 605
   Posted 7/8/2006 5:39 AM (GMT -7)   
linda,
actually its a good thing that the gastro dr didnt take on something he knows nothing about,sometimes drs have a hard time admitting they dont know all! good luck with finding a hepatologist and also make sure your family dr knows enough about your conditions so him and the hepatologist are on the same page and both keep an eye on you:) hope they find a way to make life easier for ya
trish
 
 
Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body,but rather to skid in sideways,chocolate in one hand,wine in the other,body used up ,totally worn out and screaming"WOOOOHOO WHAT A RIDE!!!" 


sinicrol
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Date Joined Jul 2006
Total Posts : 10
   Posted 7/8/2006 7:25 AM (GMT -7)   
Thanks for all of the replies! My rhemie is contacting someone at the Cleveland Clinic to see if they can help. Ohio is a little far away for me, I live in Maryland. I'm going to also ask me to see if they is anything at Johns Hopkins, which is only about 1 hour away. Hopefully he will have some answers for me when I see him on Tuesday. Linda

hep93
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Date Joined Jul 2005
Total Posts : 12014
   Posted 7/8/2006 8:47 PM (GMT -7)   
Linda, for sure Johns Hopkins would be a great place to be seen and treated. The Cleveland Clinic also has a good reputation, though I know of them mostly in regard to orthopedic disorders and surgery.

Hang in there!
Connie

phalo
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Date Joined Apr 2013
Total Posts : 14
   Posted 4/22/2013 8:40 PM (GMT -7)   
I have chronic Hep B and have been going through a lot of blood tests since last year with having a high ANA, Sjogren's (tested positive, then negative SSB), and now possible "medicine-induced" Lupus, according to bloodwork.

I have been on Viread for 2 years and my viral load non-existent since last year, but at the same time (during a hectic and stressful time) all these mysterious symptoms popped up.

My hepatologist says Sjogren's is very common in people with Hepatitis. My rheumatologist thinks the liver proteins are messing up the bloodwork and that I don't have an auto-immune issue. I'm at a loss in where to go from here. I still don't feel well (physically and occasionally cognitively)

I hear John Hopkins has an excellent department specializing in Sjogren's Syndrome.

Butterflake
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Date Joined Jun 2006
Total Posts : 1551
   Posted 4/27/2013 4:27 PM (GMT -7)   
Hi Phalo. I'm sorry you're having all these problems. You mention your hepatologist and rheumy, but not your internist. A good internist can often put all the pieces together and tell you how to proceed. Mine recently mentioned Johns Hopkins as a possible resource, but I really don't know anything about them.
 
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
Lupus '05, Sjogrens, fibro, major depressive disorder, CNS problems, GERD, colitis, 1st stage kidney disease. Many meds: better living through chemistry

Donna
Sjogren's Moderator

phalo
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Date Joined Apr 2013
Total Posts : 14
   Posted 5/5/2013 9:30 PM (GMT -7)   
Thanks for the reply Butterflake. I actually have Hep B, not Hep C. I've had the surface antigen all of my life (chronic) without any issues until a few years ago when my viral load elevated drastically.

I haven't found any posts in any forum about patients with chronic Hep B with an autoimmune issue, but am glad at least it seems like there's some sort of connection in Hep C. With the research that I've found, it seems like whatever goes on in the Liver is the opposite reaction of the autoimmune system. Meds that treat the Liver speeds up the immune system. And yes, my hepatologist said that one chronic condition can exasperate another one. I believe that I have having a lot of the symptoms a year or two before I found out that my viral load was elevated. Overall, it's been difficult to determine if the symptoms are coming from the liver or from an autoimmune issue, there's a lot of overlap.

My internist is not happy that I'm still dealing with finding a solid diagnosis a year later, especially since even though I've improved, I still have certain worsening symptoms. Since the bloodwork now doesn't show that Sjogren's anymore, and that somehow my hepatologist (not rheumatologist) randomly checked for drug-induced Lupus (a weak positive), my internist is highly recommending that I stop taking Viread, thinking it's the liver medication causing an autoimmune reaction.

My rheumatologist doesn't seem to be in any rush and doesn't think I have "an underlying autoimmune issue." (I also tested weak positive for MCTD)

My hepatologist believes it is an autoimmune issue. The end result is that I still feel crappy and neither specialist seems to know what to do or is waiting for worse symptoms to show up, to make a proper diagnosis. Wouldn't you want to prevent damage? I'm reading the book The Immune System Recovery Plan and seeking gentle solutions to slowly feeling better.

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1551
   Posted 5/9/2013 6:33 PM (GMT -7)   
Hi Phalo. I keep reading your posts and really don't quite know what to say. Sorry I missed Hep B on the first post. As I recall, only 1% of persons who contract Hep B become chronic. My BS is in medical technology (lab) and I'm now disabled and haven't kept up as I should. 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.
 
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
Lupus '05, Sjogrens, fibro, major depressive disorder, CNS problems, GERD, colitis, 1st stage kidney disease. Many meds: better living through chemistry

Donna
Sjogren's Moderator

phalo
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Date Joined Apr 2013
Total Posts : 14
   Posted 5/17/2013 5:03 PM (GMT -7)   
Thanks for all your input, you don't know how much I appreciate it.

I went back to my PCP today actually. Have these weird 2" brown (almost perfectly) circular rings on my abdomen (like a stain from a tea mug). Looks a little like ringworm, but PCP didn't think it was. Had acupuncture yesterday, but don't think the needles or even alcohol would leave these kind of marks? Any ideas? She is wondering if it's discoid lupus, but from the pictures online, it doesn't look like it. Also said that she would call my rheumy and advocate for me- bless her.

SO, still no word from rheumy or hepatologist. I took initiative and went to the hepatologist right after PCP and asked if the rheumy called him (been 3 weeks), then said that my PCP wants me off the Liver med. At least for a month or two and see if the DIL bloodwork clears up. He didn't argue with me, but said that Plaquenil may cause DIL (I was only on it for 5-6mos, now off 2 mos) My hepatologist apparently is on the committee of Viread, the Liver med that I take. He even calls the head of the Viread company in SF right in front of me and leaves a message about my case. And said that he gives this drug, is safe and he gives it to pregnant women and that if this does cause DIL, then he'd have to write a report about it. I trust him but it's obvious that he knows something is going on- he was the first to order the DIL test. My rheumy or PCP has never ordered it. But he is blaming it on Plaquenil causing DIL- wouldn't you USE plaquenil to treat DIL?

Well, now I'm not taking any meds, hope the liver viral load stays alright, and hope the AI stuff calms down. I'm expecting to probably feel crappy for the first few weeks w/o the Liver Med- SO annoying, you don't know which chronic disease is causing which symptom. (I also was totally exhausted last week after traveling a few days along the rainy NE coast. I was having chest pain, felt it was lung related, and went to the ER a day after I got back because the pain didn't go away. All tests (EKG, chest xray, heart sonogram) looked normal. Pain has gone away, although I still felt some tightness and a stab on my left rib side last night.)

phalo
New Member


Date Joined Apr 2013
Total Posts : 14
   Posted 5/17/2013 5:13 PM (GMT -7)   
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


Thanks for your advice Butterflake. There is a test for Drug Induced Lupus, and I'm positive on both my hepatologist and rheumy's end. But no course of action (BIG surprise, LOL).
I've consistently asked my hepatologist about side affects of Viread and HepB. He hasn't provided much. Since I've been on Viread for 2 years (and extremely busy), there were times I felt bad, but the majority of the time I felt alright. Never with this kind of deep fatigue, pain, burning, heavy legs, slightly neuro, numb muscles issues, that I've felt during the past year. I'm surprised no Hep B patients post on here- especially about fatigue.

As far as I believe, my liver is in good health. The tumor marker was slightly high 3 months ago, but now it's alright.

Yes, I eat well. Need to work on sleeping better. Trying "The Auto-immune Recovery Plan." Although at the same time, I was able to eat normal food before these symptoms 1.5years ago, all kinds of ethnic cuisines, and now certain foods (mainly spicy, MSG, bacon, salt, corn?) make me feel so ill and feel neurologically slow. Is it just the body changing?

Butterflake
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Date Joined Jun 2006
Total Posts : 1551
   Posted 5/19/2013 9:17 AM (GMT -7)   
 
Hi Phalo. I've had SLE for almost 10 years, so I'm fairly knowledgeable about lupus, but I really don't know much about DILE.  There is no test for SLE. The diagnosis is based on 11 criteria established by the Academy of Rheumatologist, and to diagnose lupus the patient must meet at least 4 of the criteria. Lupies can have lots of positive antibodies, but a diagnosis can't be made by those alone. After reading your posts (for the umpteenth time) I researched and found that antihistone antibodies are 95% positive in persons with DILE. With SLE antihistones are 40-50% positive. Another indicator is DILE patients have normal complement levels. If you have DILE, the most fortunate thing is that DILE patients rarely have organ involvement. (Lupus attacks my lungs and brain: pneumonias, coma, and more.) 
 
The link above might help because it not only lists drugs know to cause DILE, but also describes the symptoms.  
 
I can't find anything stating hydroxychlorquin (plaquenil) causes DILE. The most helpful info I read was in our lupus bible, The Lupus Book by Daniel Wallace, MD which has a section on DILE. It can be caused by more than 70 different medications. It is very rare in African Americans and the average onset is 60. Most DILE patients do not fulfill the  criteria for SLE and DILE is completely reversible when the drug is stopped.
 
So lastly, I don't remember your symptoms, but if you don't have eyes that feel gritty and extremely dry, parotid gland involvement, and or extremely dry mouth and mucous membranes, you don't have Sjogren's. The antibodies found in  Sjogren's can be positive in lupus and other conditions. If you haven't checked the HealingWell Hepatitis forum, or even the Lupus forum, I think that is where you may get some good advice. Love, Butterflake
Lupus '05, Sjogrens, fibro, major depressive disorder, CNS problems, GERD, colitis, 1st stage kidney disease. Many meds: better living through chemistry

Donna
Sjogren's Moderator
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