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Hepatitis C Community
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Avatar universal

Terrified

Hi All, This is my first time here so please let me know if I do something incorrectly. I have been trying to prove for years that I have Lupus. My symptoms include numbness and tingling in my hands, cramped toes, horrible raised circular rashes, horrible balance, chest pain, brain 'fog' (confusion, forgetfulness), hair loss and more. I finally found a rheumatologist that wants to help me, but I think I have opened Pandora's box. My new doctor ordered a battery of tests and it came back with a few 'surprises.' Going into my follow-up appointment I was pretty sure he was going to say I have Lupus, but instead he told me I have Sjogren's Syndromes, and I tested positive for Hep C. I should also mention that I had breast cancer in 2005-06 (4 lumpectomies, bi-lateral mastectomy, chemo, 4 surgeries for reconstruction). I had a blood transfusion in 1990 when I had my twins, and again in 2005 with the mastectomies (like 5 pints). I have read some literature since finding out about the diagnosis and understand that I am at a higher risk because I was born in 1965 and had a transfusion in 1990. Also, when I was in high school we were not as careful as they are now, so of course, I am mortified at the thought that I was infected sexually. With the Sjogren's I have learned that it could lead to lymphoma. I also had 500 / ul leukocytes in my urine sample and when I look that up it always mentions Lymphoma. I am terrified that I transmitted the Hep C to my children (I have 4-ages 12, 14, 16 and 24) and/or to my husband whom I have been with (and no one else) for 22 years. I was sent for an additional test to verify the Hep C. The original test said my reading was 4.62 reactive. The Sjogren's test said the SSA was 2.6 POS. I am so overwhelmed. Do people automatically think your are a druggie or sleep around a lot if you have Hep C? I feel like I need to defend myself and I don't know what to do if my kids have it. I'll never forgive myself. The majority of the autoimmune symptoms came out after the chemo, but I have had them sporadically since middle school. Also, I should mention that I am a pre-k to 8th grade art teacher. If I test for chronic Hep C should I quit my job to keep the kids safe? Thank you in advance for any help/advice you can give me and sorry this is so long.
20 Responses
Avatar universal
Calm down Jewels. Hep C is "curable". The genotype will determine the course of therapy. 1A is the most common and has been the most difficult to clear. There is a new drug from Gilead which will be available in Oct for this which will be one pill per day for 12 weeks most likely. If you are positive then see a specialist about it. It is unlikely that you have infected anyone or are a danger to your students. Your husband and childen can be checked. You were most likely infected by a transfusion in 1990 but 30% of people never figure out how they were infected. Your personal health issues are your own business. You have no obligation to share them outside your family. Good luck
683231 tn?1467323017
Hi and welcome

Here is a link from the CDC Hepatitis C FAQs for the Public

http://www.cdc.gov/hepatitis/c/cfaq.htm

A few things

Hepatitis c is not generally considered to be sexually transmitted especially in a monogamous relationship. There are many examples of long time couples who one has the virus and the other does not.

Hepatitis c is not a reason to discontinue working as a teacher, nurse, or any other job. Just avoid sharing items like razors, fingernail clippers  or toothbrushes. Anything that could transmit blood to blood as that is how hep c is spread.

Hepatitis C virus is not spread by sharing eating utensils, breastfeeding, hugging, kissing, holding hands, coughing, or sneezing. It is also not spread through food or water.

Some people are at increased risk for Hepatitis C, including

Current injection drug users (currently the most common way Hepatitis C virus is spread in the United States)

Past injection drug users, including those who injected only one time or many years ago

Recipients of donated blood, blood products, and organs (once a common means of transmission but now rare in the United States since blood screening became available in 1992)
People who received a blood product for clotting problems made before 1987
Hemodialysis patients or persons who spent many years on dialysis for kidney failure
People who received body piercing or tattoos done with non-sterile instruments
People with known exposures to the Hepatitis C virus, such as
Health care workers injured by needlesticks
Recipients of blood or organs from a donor who tested positive for the Hepatitis C virus
HIV-infected persons
Children born to mothers infected with the Hepatitis C virus

Less common risks include:

Having sexual contact with a person who is infected with the Hepatitis C virus
Sharing personal care items, such as razors or toothbrushes, that may have come in contact with the blood of an infected person

As Xhrles said there are new treatments that can eradicate the hepatitis c virus available now and coming soon. Were you tested for the hep c antibody of the virus itself?

Having the antibody would mean you were once exposed to the virus but about 25% of people can fight off the virus on their own. Even if you have tested positive for the anybody doesn't mean you have the virus. And even if it does turn out that you do have the virus you can still be treated and get rid of the virus and not have it anymore.

Good luck
Lynn
Avatar universal
I know it must feel as tho you've been punched in the stomach with all this news forthcoming.   It's counterproductive to worry as to where you acquired Hep C, as most of us also have no idea how we acquired the disease.  Honestly it most likely was thru blood transfusion as sexually its hard to pass.
I have 2 children, an ex husband of 20 years, and nobody has it but me.  Please do not feel guilty or ashamed of past life experiences, as we have all been there as most of us are products of the same rock and roll generation.
It is really noones business other then your own and whom you care to share info with regarding having this virus.   Is there stigma?   Yes, but by the same token everyone has skeletons in their closets, and your personal information is yours and yours alone.   If someone were to inquire, you had a blood transfusion and leave it at that.
Please see the light at the end of the tunnel.   This is now curable.  Your particular geno type is one in which the new treatment will be available with up to 90% cure rate.   Could even be higher.  You mentioned that your entire life you never really felt well, and curing this virus will change your health and well being in such a positive way.   You finally have an answer as to why, you never felt good.
I'm also a breast cancer survivor as are you, and with chemo you are forever at a higher rate of having lymphoma.  It kinda goes along with the territory and unfortunately something you and I as survivors will have to live with.  Just because you have been diagnosed with Sjogruns Syndrome doesn't mean that you are doomed to die of a blood cancer.  With life, there will always be a threat of illness or disease and worrying wont help to change that.  I so empathize with you, but we must try to look forward and move on without regrets.   You made it thru worse things such as cancer, a virus should be an easier battle to beat.
Your job is not at stake as alot of our fellow friends on this site are also nurses and teachers.   They can give you a heads up on what if any info is required regarding your health status.   And no, you are not a risk to your students as you would have to bleed all over them, while they have open wounds.  Don't really think that would be a daily occurrence in a classroom setting.
What I am hoping to convey to you is to not worry.  This is only a another bump in the road of life, and there is treatment and a cure.  I don't want your life to go into a tailspin with concern, as you need to accept the situation and resolve this unfamiliar news.  You will be OK.   The biggest fear in life is the fear of the unknown, so try and educate yourself as knowledge brings you acceptance, peace, and power.
We will all be here to help you thru and trust me there are no dumb questions.   If your not sure please ask as we have all at one point walked in your shoes with the same fears and uncertainties.
Your next step is to find an outstanding Dr.  You may be referred to a specialist, or hepatologist, depending upon the results of your blood work.  
Keep us informed and know that we will be there for you.
Take care
...Kim










.    
Avatar universal
Dear Kim,

I can't thank you enough for your kind words. You have put it all in perspective and when I start to panic I am going to go back and read your post again and again. This is all very surreal and I am the type that researches and researches until I know everything about the issue, but a lot of times it's just nice to hear the same information from someone that has been through it and has a calm, caring way to explain it. You read the statistics to hopefully make yourself feel better but sometimes it is just cold and factual and unsettling. You have managed to put it in a very calming way and I feel much better. I like to be informed so that I can ask informed questions, that is how I kept myself sane with the breast cancer, but I have already learned so much from being on this site and hearing things from others that are living through it. So again, thank you so much. I wish you well and am thankful for finding you.

Take Care,

Julie
766573 tn?1365166466
Wow I can imagine all the things running through your mind right now. The thing is you could still use more solid information. This forum is a very good place for support and enlightenment.

The preliminary test doctors usually do for Hepatitis C is for Hepatitis C Antibody (which only means you have been exposed to HCV) and many people clear on their own.

Do you have copies of your labs? If not NOW is the time to start compiling your own medical records and labs rather than relying on vague information from the doctor's office. Be sure to have them fax, email or or give you copies of your labs. This forum is a good place to learn about the values and what they mean.

After that see if you had the HCV PCR.

If not the next step is to see if there is actual presence of the virus in your blood. That test if positive reveals a viral load and sometimes a genotype.
Avatar universal
Hello Xhrles,

Thank you so much for your reply and for the information on the new drug. I will be sure to write that down so that when I see the doctor on Wednesday I will inquire about it if it comes back as positive again. I hope if it is positive it will tell me the type I have so I can get on with whatever it is that I'm supposed to do. My biggest concern right now is making sure my family is ok. Once I know that I will be much calmer. Then I will be able to address the Sjogren's and the Lupus, as well.

Thanks again for the advice.

Take Care,

Julie
Avatar universal
Thanks for the kind remarks.   Want to let you know we have experts on this site, whom in my opinion know just as much if not more then the Doctors we seek.  We can decipher your lab results and tell you exactly what they mean in laymens terms.  We will also be honest and lay it out on the table as to what if any treatment you need to consider.  Your labs are your property so ask for copy's and if you have questions we can go over them with you.  If you do indeed have Hep C, ask for your genotype and viral load.  The blood work is important to get to see if any hepatic issues are present.
I'm really hoping that you do not have the virus, and you may not.  In the event you do, it is treatable and curative in nature.   See you have a follow up tomorrow so keep us posted.   Sending you positive thoughts for a good outcome.
...Kim
1815939 tn?1377991799
Welcome to the forum! You will find it a very helpful place.

I am sorry you are dealing with so much right now. It can seem overwhelming.

I won't repeat what many of the others have already addressed.

If you have Chronic Hepatitis C (in which case you would have a viral load on a HCV RNA test as opposed to just a positive antibody test), you will need to find a Hepatologist to treat you for the Hepatitis C. The Hepatologist will run additional tests to find out what Genotype you are and what your liver fibrosis stage is. Your Genotype will determine which treatment you have. Also, if you do have Hepatitis C, keep in mind it is curable. Gastroenterologists can treat Hep C. However, you should see a Hepatologist forHep C treatment because your treatment may be complicated due to Autoimmune Disease issues (Sjogren's) so you want to have a doctor who is very knowledgeable and competent in terms of treating someone who has additional medical problems such as Sjogren's.  

Some of your symptoms could be from Hepatitis C (if you have Hepatitis C). However, Sjogren's causes all of the symptoms you are experiencing so they could all be from Sjogren's.

As far as Sjogren's is concerned, it is not curable. However, it is treatable.
Hopefully you have a very good Rheumatologist. It sounds like he is competent since he listened to you and diagnosed you with Sjogren's. Usually the first line drug for Sjogren's is Plaquenil. It takes a while to work and reach full effect, but most people show a decrease in symptoms after being on it for awhile. There are other drugs that can be used for Peripheral Neuropathy pain and joint and muscle pains.

I am sure your Rheumatologist checked your Vitamin D level. If he did not check it, ask him to check it. It is true that people with Sjogren's run a higher risk of developing Lymphoma, but they run a much higher risk if they are Vitamin D deficient. So if you have a Vit D deficiency, it should be corrected with prescription Vit D. You want the level to be at least 40.  Many people with Sjogren's as well as many with Hep C are Vitamin D deficient so the chances of you being deficient are pretty good.  Your risk for Lymphoma will be reduced if you are not Vit D deficient.

Since you have symptoms of Peripheral Neuropathy as well as balance issues, your Rheumatologist will probably refer you to a Neurologist. Be sure the Neuologist is knowledgeable concerning Sjogren's Disease related  Neuropathy. Some regular Neurologists are not knowledgeable about Autoimmune mediated Neuropathy and will do the incorrect tests. If the correct tests are not done, then they may say you do not have Neuropathy even if you do. A Neurologist who is knowledgeable about Autoimmune mediated Neuropathy (and in your case, Sjogren's) will be able to determine if you have Neuropathy caused by Sjogren's.  

I was treated for Hepatitis C in 2011-2012 and am now cured. I also have Sjogren's Disease and have had it for decades, although it was not diagnosed until Aug. 2013 (1 year ago). I am on Plaquenil and it has helped me a great deal with symptoms. I also take a lot of supplements which help. I am feeling considerably better, actually very good, since I was diagnosed and got on treatment for the Sjogren's. I have a very knowledgeable, competent, and compassionate Rheumatologist and a fabulous team of doctors at the U of MN.

I am telling you this so you will know that being diagnosed with Sjogrens's, while not a happy event, is not the end of the world. There is treatment. In addition, you now have a diagnosis so you can begin treatment. For me, that made a huge difference. I knew something was wrong but, for many years, I could not get anyone to listen to me. When I finally got an appt. with my Rheumatologist and she diagnosed me with Sjogren's, it was a huge relief. I finally knew what was wrong with me. And if one knows what is wrong, at least one can start treatment and address the problems and symptoms.

Also, you may want to join the Sjogren's World Forum. The forum is specifically for people with Sjogren's (although many people on the forum have more than one Autoimmune Disease). The forum is very helpful and supportive. There are many very knowledgeable people on that forum and they can answer just about any question you may have about Sjogren's as well as many other Autoimmune Diseases. Sjogren's Disease presents with a lot of weird symptoms and it is comforting to know that others have experienced the same symptoms. Plus people will share what they have done to relieve the symptoms. It is definitely the best Sjogren's Disease forum around.

Here is the link to the forum. You will have to register, but it is free. I think you will receive a lot of help and support concerning Sjogren's Disease on that forum.

http://sjogrensworld.org/forums/index.php?board=1.0

Best of luck.
Avatar universal
Hi Lynn,

Thank you so much for your answer. You really took the time to give me a lot of statistics that make me feel much better and I appreciate that so much. I am anxiously awaiting the results of the test that was taken this past Friday. I am hoping it will say that it was a false positive, but for some reason I don't think it will. Your post makes the future sound manageable and as soon as I know that my family is in the clear, I will settle down and be able to deal with this in a much calmer way.

Thank you, again, for your post and your encouragement. I am hoping to pay it forward some day.

Thanks again,

Julie
Avatar universal
Thank you, again, Kim. I am seeing that you are absolutely right in saying that there is a lot of knowledge and support on this site. I just received a reply from pooh55811 and she (or he) has Sjogren's (I have just been diagnosed with) and has Hep C and has given me excellent advice on who to contact not only in the case of the Hep C but for the Sjogren's, as well. I am already so grateful for the information from replies like yours and feel like this is a great place to come when I am stressed. My hope is to one day be able to comfort others the way you and many others have done for me. Thank you, again, Kim-you're the best.

Julie
Avatar universal
Hi pooh55811,

Thank you so very much for your reply. I am still waiting for the confirmation one way or the other on the HepC. Hopefully I will get a call tomorrow. The Rheumatologist sounded like he thought it would be positive and went so far as to say that it could be anywhere from very treatable to liver cancer. He is oriental so there is a language issue there-I don't think he means to be so blunt but before he said that I didn't even know that HepC affected the liver. Also, he said that nothing could be done about the Sjogren's until we know about the Hep C.

You mentioned that the Vitamin D should be checked. Funny you should mention that. A Rheumatologist that I tried to see two years ago did a series of blood tests on me and it came back as very Vitamin D deficient. She gave me a prescription for it and very abruptly said that I don't have Lupus and pretty much told me not to come back and waste her time again. She was so rude that I thought I would never pursue this again, but the rashes were getting out of control and the level of forgetfulness/confusion just about had me convinced that I had the onset of dementia. So this time around I marched into my Primary's office with my laptop and showed him 100's of pictures of the rashes that I get. I told him at my last Oncology check up in April my Oncologist suggested that I seek out a new Rheumatologist because I had shown him a few of the pics. My Primary actually seemed to take me seriously for once and set me up with my current Rheumatologist. Hallelujah! Of course now I have to deal with the consequences and my only real fear is that my one or more of my family is infected with this because of me. Once they are clear, I will rest much easier.

I learned the hard way to request my lab results from when I had breast cancer. That is just another entire, incredibly unbelievable story including markers that were missed, a surgeon that left me in the pre-op and went fishing with his grandson because he had alzheimers (he had done surgery on my 2 weeks prior), a car accident that popped one of my temporary implants, finding on my lab results myself that there was evidence of cancer in 3 out of 5 of my lymph nodes, being bald with one boob, getting saline implants that were defective and finally, nine surgeries later, ending up with the first silicone implants in CT when they were re-approved to go back on the market! And that is just the Reader's Digest version!

So now I preach to everyone that they must advocate for themselves and they should always get their labs and look them over to see if anything stands out. And once again this is a perfect example of it happening all over again. I have been searching for help for all these years and finally I find this all out and I now know that I am not crazy thinking I have all these symptoms that no one believes I have. My mom used to call me a hypochondriac. I would get so upset because I knew what I was feeling was not in my head.

Well, now I am just rambling because my mind is racing with all this medical stuff. I just really wanted to thank you so much for your reply and I am so glad that you mentioned the Vitamin D, because now I know to mention it to my Rheumatologist when I see him.

Again, thank you. You are a saint for caring enough to reply the way that you did.

Take Care,
Julie
Avatar universal
Hi again, one more thing…I am going to join the forum for the Sjogren's…thank you so much for the info!
Avatar universal
Hi Idyllic,

Thank you so much for your reply. I do have copies of my labs. I learned the hard way when I had breast cancer that you have to self-advocate and be the 'manager' of yours and your families' health.

I have received some great advice and I am so thankful to you for offering yours. I will definitely write down what you told me to check for ( the HCV PCR test and if it reveals the viral load and genotype) so that I can ask informed questions when I talk to the doctor.

Once again, thank you so much.

Take Care,

Julie
1815939 tn?1377991799
Here is another link to the Sjogren's Syndrome Foundation. They have a lot of information on their web site. They also have a page that will tell you where local support groups are and who to contact in case you want to go to a support group meeting.

http://www.sjogrens.org/

Pick "Get Connected" and then "Support Groups"


One thing about some of the drugs used in Sjogren's is that they can be liver toxic so that is one reason why your Hepatologist wants to wait until the Hep C  tests come back before starting anything. Plus, getting rid of Hep C is important so that should be address ASAP if you have it.

Also, what other blood tests did you have that were positive?   ANA?   SS-B?     Any others?

Also, did he mention a lip/salivary gland biopsy? Most Rheumatologists want to have a lip biopsy done to confirm the diagnosis.

If you were very deficient in Vit D before and have not continued to take Vit D supplements (even if you took the prescription for awhile), you are probably still Vit D deficient. Many people have to keep taking Vit D supplements to keep their levels at 40. It took several months of taking 72,000 IU Vit D per week to get my level up to 42. Now I am taking 56,000 IU per week and my level will be rechecked  in 3 months.

Your story is very similar to most people on the Sjogren's forum. Their doctors ignored their symptoms for years. They were told they were crazy, had anxiety, had depression, were hypochondriacs, were just getting old, were too fat, had fibromyalgis, and on and on. Most have had to see several doctors to finally find a doctor who would believe them and test them. My story was no different. I was ignored for years, told I was getting old and that is why I had the problems i did. I kept changing doctors. After the 5th PCP and still no action, I finally took matters into my own hands and got myself to a Rheumatologist by asking my Hepatologist to refer me to the U of MN. Lucky me, I hit the jackpot with my fabulous Rheumatologist. And now I have a full tam of wonderful, knowledgeable, and competent doctors/specialist.

Once you get all of the testing done and have had time to learn more about everything, you will feel a lot better.

And, people on the forums will help you a lot.
Avatar universal
Hi Again,

I called the horrible rheumatologist that I saw 2 years ago and requested my reports be faxed to me ( I had them but can't find them now). So I received them and have been looking at them all day. I do have to say that she ordered quite a lot of tests! I had tons of things on the 'Low' side but I guess not low enough to be alarmed. The Vitamin D count was 16 so she ordered me this:  Vitamin D (Ergocalciferol) 50000 UNIT Oral Capsule; Take 1 capsule by mouth every week for 8 weeks.

Here's the part that I find interesting…she did a HepC test and this is the result:  Hepatitis C Antibody: 0.11 S/CO ratio Reference Range: 0.00-0.79.
So according to this I was negative. In your opinion, is it more likely to get a false negative or a false positive on this test? My positive test for the antibody reading was 4.26.

Sorry to be a pain…thanks so much for any info you can give me.

Take Care,

Julie
1815939 tn?1377991799
If your Vit D level was only 16 and she gave you only 8 weeks of Vit D replacement, I am sure that your Vit D level is currently quite low. So, if your current Rheumatologist has not tested it yet, be sure he orders a test.

"is it more likely to get a false negative or a false positive on this test?"
----------------------------------------------
I am not sure about that. I don't know if one is more common than another.

The thing is, if it is negative, they won't retest it, so how would they know it was a false negative.

When it is indeterminate or positive, then they check further, to see if you have Hep C. So in those cases, when it is a false positive, they would know that because they have done further testing.

The HCV RNA test does not take that long to do so you should know very soon what the results are. I always had my results back in 2 days.

Feel free to ask any questions you like. I don't mind answering and I am sure others do not mind either. We all help each other out.

Avatar universal
Hi Julie.  Do you have a list of all your blood work?   If so, was this done 2 years ago or recently?    These are some of the items we should look at.
Platelet count
Bilirubin
INR
ALT
AST
Creatine
A few of these might give an indication of anything brewing.
Hope all is well, and if you have those #s you can then post.
Warm wishes
...Kim


Avatar universal
Hi Jewels - FYI - I just had a low Vit. D screen - 13 was my value.

Dose details: My PCP prescribed vitamin D--50,000 units, given once per week, for 12 weeks.  Once those 12 weeks are over, I switch to a daily supplement of 1000 units.  PCP said probably not getting enough vitamin D through diet (hard to get) and sun exposure (I keep out of sun as much as possible since an Olysio Sx is photo sensitivity).  

Best wishes to you - z
Avatar universal
I understand your anguish about your children's possible exposure from you.  When I was do diagnosed 15 years ago, I had my 2 pre-teen children tested.  Both were breast fed and there were a few small bleeds when their teeth started to emerge.  I didn't feel the time was right to go into details with them back then.  Suffice it to say, they tested negative for the virus. For my 10 &12 year old children, a blood draw from a vein in their arm was very scary.  I am not sure how you do this with a 4 year old - a question for your pediatrician for sure.  Now that my children are grown, and I have started Tx, we discussed it again recently.  I am not sure if they should be retested, but you are motivating me to look into this.  My husband of 30+ with whom I have a monogamous relationship recently tested again and was still negative for the virus.  As I did not know I was infected for the first half of our married life, I am sure we shared a toothbrush or two on camping trips, and we had one nail clipper between us for a time.   This is just to say, while exposure risk for your family is a valid concern that you should follow through on, it isn't so easy to contract HCV.  Not something to beat yourself up about.  We have so much to regret, this doesn't help you or anyone you love. To carry on teaches them resilience - I get a lot of motivation from that so that my children can put this to use whenever they struggle.
Avatar universal
I understand your anguish about your children's possible exposure from you.  When I was diagnosed 15 years ago, I had my 2 pre-teen children tested.  Both were breast fed and there were a few small bleeds when their teeth started to emerge.  I didn't feel the time was right to go into details with them back then.  Suffice it to say, they tested negative for the virus. For my 10 &12 year old children, a blood draw from a vein in their arm was very scary.  I am not sure how you do this with a 4 year old - a question for your pediatrician for sure.  Now that my children are grown, and I have started Tx, we discussed it again recently.  I am not sure if they should be retested, but you are motivating me to look into this.  My husband of 30+ years with whom I have a monogamous relationship recently tested again and was still negative for the virus.  As I did not know I was infected for the first half of our married life, I am sure we shared a toothbrush or two on camping trips, and we had one nail clipper between us for a time.   This is just to say, while exposure risk for your family is a valid concern that you should follow through on, it isn't so easy to contract HCV.  Not something to beat yourself up about.  We have so much to regret, this doesn't help you or anyone you love. To carry on teaches them resilience - I get a lot of motivation from that so that my children can put this to use whenever they struggle.
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