Hello, I'm a 52yo female - about 15 years ago, went through some health issues, was told I had HepC, then my viral load was down below what they considered "cured" back then... fast forward to 2011 - I was deployed in Africa, (extremely hot, lots of environmental toxins, lots of immunizations).... I was really healthy, then started getting dizzy... would last about a week, and go away.... got back to the US, and started packing on weight.... like 45lbs! I would feel fine for a few months, then feel like I was hit by a bus... all my joints hurt, etc.
Went to lots of Docs - they thought I had RA - went to a Rheum, and though my anti CCP and ANA were up, said it was all my HepC - since then, I've had a ton of MS like symptoms... decreased skin sensation, burning sensation in my hands feet and ribcage at night, fatigue, sleep problems, and I have white matter lesions on my brain... though not in a typical MS pattern.
It appears I have some type of autoimmune disease. My lumbar puncture had elevated protein, and Igg synthesis rate - but no O-bands common in MS.
My live biopsy was stage 1 grade 1 - mild fatty liver, mild inflammation....
So.... I've heard that going through HepC treatment can be relatively harsh - and is contraindicated for autoimmune disease.... and the treatments for autoimmune disease are contraindicated for HepC.
Are my autoimmune symptoms caused by HepC? Or are they a different origin?
IF I only have mild liver disease, what are the benefits of feeling like crap for a year and (possibly) clearing my HepC - I am genotype 1a - at the expense of my autoimmune problems?
If HepC caused the autoimmune issues, will clearing HepC cure my autommune issues?
Has anyone else had their HepC cause white matter lesions on their brain?
Thanks for any assistance... it is pretty confusing and the numerous docs really haven't been of much help.
Hi, I also have auto immune issues but haven't had a brain scan and do not have a positive ANA, but do have high mitochondrial blood count , and they say I have primary Bilary cirrhosis( called PBC) also hypothyroid , family history lupus , and Rheumatoid arthritis
They think my auto immune disease is possibly related to hepatitis C ( had it 43 years), I am currently under treatment with off label use of Sovaldi and Olysio for 12 weeks ( interferon not allowed with PBC, and I heard not good for people with auto immune illness)
Maybe you could do that or wait till later this year for another all oral treatment
If you see a Hepatoligist at a really good hospital , they could probably suggest what would be best for you
I too have the burning hands, and when I get its like a wave coming over me, although never know when, it is accompanied with unbelievable exhaustion, and painfully dry eyes, and I am in bed for days
That was before I started treatment for the hepatitis 8 weeks ago( of the 12 week treatment) I still have my waves, but the medication makes it harder to tell what's what
The side effects of this is much milder and shorter than previous treatments, but has made me very tired, but I am starting to have more energy as of late, and for very bad day get a good one
I hope getting rid of the virus cures everything else, but I won't know till I finish
I hope you will find the answers and solutions to your health issues, as well as mine!!
I really don't know that much about your condition and symptoms. Hopefully some other members can offer more non medical opinions.
Q: Who takes care of patients with autoimmune diseases?
A: Since autoimmune diseases vary greatly in presentation, many different physician specialists care for patients with these disorders. The specialist is usually skilled in treating diseases of a particular system. For example: rheumatologists tend to treat diseases affecting the joints and connective tissue; neurologists, autoimmune diseases of the central and/or peripheral nervous system; dermatologists; diseases of the skin; gastroenterologists, diseases of the intestinal tract; and endocrinologists, diseases of endocrine organs. It can be truly said that physicians of any specialty may encounter patients with autoimmune disease.
Just my quick non medical ideas
"Went to lots of Docs" Were they in different medical offices and/or were involved in a team discussion to try find out the cause?
Your best bet may be to be evaluated at a highly regarded university medical center that has various specialist who treat autoimmune diseases as a team including a hepatoligist
If your biopsy was stage 1 grade 1 and recent or has not changed. My guess is maybe HepC treatment can wait awhile. New treatments that are much more tolerable, successful and without INF/RBV hopefully will be approved in the next year or two.
Your best bet is that a team of specialists after tests and evaluation can provide you with their best treatment options depending on your diagnosed most immediate medical need.
I wish you the best. Don't worry about "what caused what" Concentrate on finding a highly respected medical team to find the best solution for you.
Thanks! I am seeing an MS Specialist at a major University medical center and they have referred me to a Rheum. My Hepatologist is local. I have heard there are some new treatments coming out.... my hands, feet and torso only burn at night - and it is usually if I hit a cool spot on the bed that triggers it... lasts for a few minutes and fades away. I am very reluctant to take ANY drugs.... so we'll see....
Thanks for the reply.... I have gone to a lot of different specialists - my biopsy is from about 8 months ago. Fortunately I was referred to UNC, and am seeing a Neurologist there who referred me to a Rheum.... (still waiting on that appt.)
I guess the thing that has me a little rattled is that my ACE is high (78) and that indicates sarcoidosis - if I have neurosarc, which is an MS mimic, I would want to treat sooner rather than later....
I continue to be amazed how complex some medical related conditions can be.
I hope you get a correct diagnosis, advice and treatment recommendations to provide the best possible outcome for your conditions.
FYI for those who just want to learn a little more about Neurosarcoidosis in general.
"Diagnosis can be difficult, with no test apart from biopsy achieving a high accuracy rate"
other Sarcoidosis related to skin lesions
Foreign Body Granulomatous Reaction to Silica, Silicone, and Hyaluronic Acid in a Patient With Interferon-Induced Sarcoidosis
Sarcoidosis is a multisystem granulomatous disease of unknown etiology that is sometimes associated with interferon administered to treat other diseases
We report the case of a patient who developed sarcoid granulomas 11 months after starting treatment with pegylated interferon alfa and ribavirin for chronic hepatitis C. The sites of the lesions were related to 3 different foreign bodies: silica in old scars on the skin, hyaluronic acid that had been injected into facial tissues, and silicone in an axillary lymph node draining the area of a breast implant. Systemic sarcoidosis was diagnosed on the basis of a history of dry cough and fever and blood tests that revealed elevated angiotensin converting enzyme and liver enzymes. Interruption of the antiviral therapy led to normalization of liver function tests and disappearance of the skin lesions and lymphadenopathies.
Dermatologists and cosmetic surgeons should be aware of the risk of sarcoid lesions related to cosmetic implants in patients who may require treatment with interferon in the future.
Thanks Jimmy - I haven't done ANY treatments - and what you posted is the biggest reason why... sometimes the side effects are worse than the actual disease.
Right now, my liver is doing OK... not perfect, but not bad either - at 52, many people have fatty liver and some mild inflammation (mostly due to a diet high in GMO grains!) I don't see signing on for treatment unless my liver gets much worse.
Otherwise.... between HepC, autoimmune disease, menopause, and residuals from 2 years of LOW B1 and D3 (they are in the low/normal range now).... many of the symptoms such as fatigue, insomnia, aches, vertigo and arthralgia can be from any or all of what I am experiencing OR from the resulting depression.
On a side note.... I have found Tumeric helps a LOT with inflammation, but I haven't taken it in months, so I don't mask any symptoms until I'm diagnosed. Overall, I do OK.... can't do EVERYTHING I want to do, but am about 60-75% of my normal. I am not sure how much of a "gain" I will get with treatment.
"Are my autoimmune symptoms caused by HepC? Or are they a different origin?"
Hepatitis C can cause a lot of extrahepatic manifestions (damage outside the liver). Some of these manifestations are vague, such as fatigue and joint aches and pains. Some are more specific, such as Lymphoma, Cryoglobulinemia, Diabetes, Thyroid Disease, and many others. In addition, Hep C can trigger Autoimmune Diseases. It is felt that people who get Autoimmune Diseases already have a genetic predisposition to them and that a trigger (such as Hep C) will activate them. Here is a link to an article and a list with descriptions of the many extrahepatic manifestation a person can get:
"If HepC caused the autoimmune issues, will clearing HepC cure my autommune issues?"
Not necessarily. Clearing Hep C will often clear some symptoms and problems such as insulin resistance, fatigue, Cryoglobulinemia, Porphyria Cutanea Tarda, recurring Lymphoma, etc., but curing Hep C will not usually get rid of an Autoimmune Disease once it is established.
"IF I only have mild liver disease, what are the benefits of feeling like crap for a year and (possibly) clearing my HepC - I am genotype 1a - at the expense of my autoimmune problems?"
The benefits are:
1) You won't have Hep C any more. This means that your liver fibrosis will NOT progress any further and may actually regenerate. You will NOT progress to Stage 4 liver fibrosis (Cirrhosis) or End Stage Liver Disease, and you won't be at high risk for Hepatolcellular Carcinoma.
2) Many of the symptoms attributed to Hep C (such as fatigue and some others) may disappear. My fatigue disappeared completely after I was cured.
3) Treating and attaining Sustained Viral Response (cure) markedly reduces all cause mortality. In other words, those who treated and were cured had a major reduction in dying from ANY cause, not just liver related causes.
The other factor to consider is that liver fibrosis progression is not linear. It may go along for awhile progressing at a slow pace and then it may pick up speed. You are 52. As we age, liver fibrosis progression picks up speed. People have gone from Stage 1 to Cirrhosis in as little time as 3 years. Most don't progress that fast, but one never knows. Some on the forum have progressed that fast. Most on the forum who have Cirrhosis will tell you that they wished they had treated before they developed Cirrhosis.
Another thing is that current Hepatitis C treatment is much, much easier than it was. There are current treatments that do not require Interferon. It is Interferon that is the problem with Autoimmune Disorders. So there are current treatments out that do not require Interfron and there are some others that should be available later this year which also do not require Interferon. In addition, the new treatments have a very high cure rate.
I had no brain lesions so I cannot comment on that question.
I will, however, mention that I treated for 48 weeks from Sept. 2011 through Aug. 2012 and i was cured (Genotype 1) (Incivek, Interferon, Ribavirin). Treatment was no picnic but I am elated that I was cured. I had a lot of extrahepatic manifestations. Since treatment I have no fatigue, I have lots of energy and motivation, my blood sugar is back to normal, and I feel considerably better. I feel considerably better even though I do have an Autoimmune Disorder, Sjogren's Syndrome, which I have had for decades (most likely triggered by Hep C) but which was never diagnosed until after I treated. I guess I was luck they never diagnosed it because they would not have treated me with Interferon if I had been diagnosed prior to treatment.
You are already being seen at a university affiliated medical center, which is good. You should be in good hands there. You may want to transfer your Hep C care to that center also, but you know if your current Hepatologist is competent and up to date. It just might make it easier to have all specialists at the same facility and a university facility should be current on all new Hep C meds including the off label combinations.
I am sure your Rheumatologist will supplement you with Vit D3. Low Vit D levels are common with both Hep C and with Autoimmune Disorders and low levels can complicate both the Autoimmune Disorder and the success of Hep C treatment.
After you have been evaluated by all of the specialist, hopefully you will treat the Hep C. In my opinion, not treating the Hep C will only lead to further problems.
Thank you for such detailed and well-reasoned responses. With this type of information, I can make better, more informed choices. I am in the Army, so I am not always able to choose my providers, but so far - have gotten decent care. It sounds like my best course of action is to try for the new treatment. Then, if I have a sustained response - see what residuals I have (if any) of autoimmune problems.
The brain lesions could be something - or they could be normal age-related change... or it could be the result of a gluten filled diet (after reading "The Grain Brain")....
Thank you all so much - and I wish you all the best in your healing journey.
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