Aa
Possible LUPUS after 5 years or SVR ?
Hy there !
In the first place please escuse me for my english...but english its not my first language but I will try to do all my best for you to understand me.
I was diagnosted with Hep C in 2006, started treatment with interferon (pegasys) and Ribavirin in 2008, cleared the virus and I am undetectable since then.
In 2012 I started to have funny skyn rash on my upper abdomen. I`ve been to a lot of dermathologists, they run a lot of blood tests, everything was fine, they told me that I have a alergy or something. In 2-3 months the rash dissapered without any medications.
After that in 4-5 months I started to have joints paint, funny numbness all over me body, terrible fatigue.
My doctor runs for me another blood tests. Everything was fine, but my ANA was 1:100 speckled , and the reference lab results was less than 1:100. All the others blood tests was OK. The GAP refered me to a rheumy,buy the rheumy told me that everything is fine, the ANA results is quite small and she didnt think that its something wrong.
I repeated ANA in 1 month and it was the same, 1:100 speckled, but the rheumy told me not to worry.
I 2013 I had some pain in my chest, so I went to a cardiologist, they did me a heart echography and he told me that I have what they called bicuspid aortic valve, with ejection fraction of 63%, but no regurgitation, no nothing.
Since 2015 I was ok, just some joint paints, but not something very bad.
In august I`we been in Greece for 1 week, I spent a lot of hours under the sun, and after I arrived home I run some blood tests as well:
Lupus Anticoagulant - POSITIV
ANA - negative ( and I know that in people with Lupus ANA can go way up if are staing a lot in su exposure )
anti-dsDNA - negative
VSH - 2 (normal <15)
Serum urea - 35 ( normal <43)
Serum Creatinin - 0.76 ( normal <1.2)
C3 - 133 ( nromal 90 - 180 )
C4 - 20 ( 10 - 40 )
I visited the cardiologist as well, and my ejection fraction decreased from 63% in 2013 to 53% in sept 2015, and now I have mild regurgitation.
I dont feel good at all, I am very very tired, I have terible joint pains, heart palpitation, but the rheumy told me that it is not Lupus or another autoimune diseases, but I am not sure.
I am scared that my treatment for hepatitis C triggered Lupus. At the moment my symptoms are:
- Extreme fatigue (tiredness)
- Painful joints.
- Abnormal blood clotting ( lupus anticoagulant positive )
Blood tests:
- I had 2 positive ANA during the time ( both 1:100 speckled pattern, last one negative in september after 1 week off sun exposure )
- anti-dsDNA - negative
My rheumy didnt given me any treatment till now, nothing at all. Please tell me your opinion....is Lupus or not?
Thank you !
In the first place please escuse me for my english...but english its not my first language but I will try to do all my best for you to understand me.
I was diagnosted with Hep C in 2006, started treatment with interferon (pegasys) and Ribavirin in 2008, cleared the virus and I am undetectable since then.
In 2012 I started to have funny skyn rash on my upper abdomen. I`ve been to a lot of dermathologists, they run a lot of blood tests, everything was fine, they told me that I have a alergy or something. In 2-3 months the rash dissapered without any medications.
After that in 4-5 months I started to have joints paint, funny numbness all over me body, terrible fatigue.
My doctor runs for me another blood tests. Everything was fine, but my ANA was 1:100 speckled , and the reference lab results was less than 1:100. All the others blood tests was OK. The GAP refered me to a rheumy,buy the rheumy told me that everything is fine, the ANA results is quite small and she didnt think that its something wrong.
I repeated ANA in 1 month and it was the same, 1:100 speckled, but the rheumy told me not to worry.
I 2013 I had some pain in my chest, so I went to a cardiologist, they did me a heart echography and he told me that I have what they called bicuspid aortic valve, with ejection fraction of 63%, but no regurgitation, no nothing.
Since 2015 I was ok, just some joint paints, but not something very bad.
In august I`we been in Greece for 1 week, I spent a lot of hours under the sun, and after I arrived home I run some blood tests as well:
Lupus Anticoagulant - POSITIV
ANA - negative ( and I know that in people with Lupus ANA can go way up if are staing a lot in su exposure )
anti-dsDNA - negative
VSH - 2 (normal <15)
Serum urea - 35 ( normal <43)
Serum Creatinin - 0.76 ( normal <1.2)
C3 - 133 ( nromal 90 - 180 )
C4 - 20 ( 10 - 40 )
I visited the cardiologist as well, and my ejection fraction decreased from 63% in 2013 to 53% in sept 2015, and now I have mild regurgitation.
I dont feel good at all, I am very very tired, I have terible joint pains, heart palpitation, but the rheumy told me that it is not Lupus or another autoimune diseases, but I am not sure.
I am scared that my treatment for hepatitis C triggered Lupus. At the moment my symptoms are:
- Extreme fatigue (tiredness)
- Painful joints.
- Abnormal blood clotting ( lupus anticoagulant positive )
Blood tests:
- I had 2 positive ANA during the time ( both 1:100 speckled pattern, last one negative in september after 1 week off sun exposure )
- anti-dsDNA - negative
My rheumy didnt given me any treatment till now, nothing at all. Please tell me your opinion....is Lupus or not?
Thank you !
My suggestion would be to find another Rheumatologist for a second opinion (if your country allows that).
Get copies of all of your lab tests and have a good history of the sequence of events and symptoms so that whn you see the new Rheumatologist you have all of your records.
I treated with Interferon in 2011-2012. I continued to have rashes, joint pain, severe fatigue, and some other symptoms several months after finishing Interferon. My primary care doctor and the dermatologist did not think I needed further testing even though my ANA was elevated and I was symptomatic. However, I made an appointmentto see a Rheumatologist and was diagnosed with Sjogren's Disease (a Lupus cousin). Sometimes we have to get pushy to get appropriately diagnosed and treated.
Just to be clear, Interferon did not trigger Sjogren's in me. In retrospect, I know I had Sjogren's for decades before I ever took Interferon. In fact, I had Systemic Vasculitis in 1993-94 but nothing but my ANA was elevated at that time.
Severe fatigue as well as joint pain, rashes, muscle aches, and other "vague" symptoms are classic symptoms of Autoimmune Disorders. Many Autoimmune Disorders have blood abnormalities (such as clotting or blood count problems). People with Sjogren's Disease often have neuropathies not expalined by any other disease process. Small fiber neuropathy can cause skin sensations, numbness, burning, tingling, and other symptoms. A person needs a skin biopsy to diagnose small fiber neuropathy. It is often the first symptom of Sjogren's.
Keep in mind that people can have Autoimmune Diseases and not have positive antibodies for the specific disorder. Many people have negative blood work but they have the disease.
Sop I would suggest seeing another Rheumatologist, preferably one at a large university affiliated medical center.
Best of luck.
Get copies of all of your lab tests and have a good history of the sequence of events and symptoms so that whn you see the new Rheumatologist you have all of your records.
I treated with Interferon in 2011-2012. I continued to have rashes, joint pain, severe fatigue, and some other symptoms several months after finishing Interferon. My primary care doctor and the dermatologist did not think I needed further testing even though my ANA was elevated and I was symptomatic. However, I made an appointmentto see a Rheumatologist and was diagnosed with Sjogren's Disease (a Lupus cousin). Sometimes we have to get pushy to get appropriately diagnosed and treated.
Just to be clear, Interferon did not trigger Sjogren's in me. In retrospect, I know I had Sjogren's for decades before I ever took Interferon. In fact, I had Systemic Vasculitis in 1993-94 but nothing but my ANA was elevated at that time.
Severe fatigue as well as joint pain, rashes, muscle aches, and other "vague" symptoms are classic symptoms of Autoimmune Disorders. Many Autoimmune Disorders have blood abnormalities (such as clotting or blood count problems). People with Sjogren's Disease often have neuropathies not expalined by any other disease process. Small fiber neuropathy can cause skin sensations, numbness, burning, tingling, and other symptoms. A person needs a skin biopsy to diagnose small fiber neuropathy. It is often the first symptom of Sjogren's.
Keep in mind that people can have Autoimmune Diseases and not have positive antibodies for the specific disorder. Many people have negative blood work but they have the disease.
Sop I would suggest seeing another Rheumatologist, preferably one at a large university affiliated medical center.
Best of luck.
i know people experiencing Lupus from IFN treatment on this board but they are not very active anymore , it's hard to find them:/
tell us how you feel after some days or weeks, ok? :-)
tell us how you feel after some days or weeks, ok? :-)
Charm357 ..... I would suggest finding a Rheumatologist who is affiliated with a large university affiliated medical center. Make a list of all symptoms and bring your previous lab work with you. Be sure to list all symptoms, even those that do not seem important.
Interferon can trigger an underlying Autoimmune Disease. Hepatitis C can trigger an underlying Autoimmune Disease. For me, it was the Hep C that triggered the Autoimmune Disease.
Many people with Sjogren's (and some other Autoimmune Diseases) are not diagnosed for years even though they have an Autoimmune Disease. The doctors love to dump people with Autoimmune Disorders into the Fibromyalgia, Chronic Fatigue Syndrome, andor Depressions trash cans. If they cannot figure it out, then (to them) it MUST be due to one of those three trash can diagnoses.
Don't get me wrong. Depression can be a true diagnosis, but not everyone labeled with Depression is depressed. Depression and Autoimmune Disorders share symptoms (major fatigue, no energy, inability to concentrate) and the easier diagnosis for doctors is to throw the person into the Depression trash can instead of doing the more difficult work of diagnosing the Autoimmune Disorder.
Is your SS-A or SS-B positive along with the positive ANA? If so, that should point to Sjogren's.
However, only 60% of people with Sjogren's have positive antibodies to SS-A or SS-B. The other 40% have negative lab but still have Sjogren's. So competent Rheumatologists will diagnose and treat based on symptoms as well as lab work.
Have you had a salivary gland biopsy (lip biopsy)? The lip biopsy will show if you have salivary gland involvement, which will confirm Sjogren's. The lip biopsy should be done at a large medical facility that does frequent lip biopsies and it should be done by an oral surgeon who is experienced in doing lip biopsies. If it is not done correctly, it will be invalid and, if it is not read correctly by an experienced pathologist, it will also be invalid.
Peripheral Neuropathy (the needles all over your body) is often the first symptom of Sjogren's.
Severe fatigue, sand in the eyes (from severe dryness and corneal abrasions), gastric issues, and much more are classic symptoms of Sjogren's.
Here is a chart that shows what parts of the body Sjogren's can affect:
http://www.sjogrens.org/home/about-sjogrens/symptoms
Also, go to the main page of the Sjogren's Syndrome Foundation for more information.
http://www.sjogrens.org/
See an opthamologist about your eyes. The opthamologist can order Restasis for your eyes. Restasis is an immune suppressant eye drop and it will decrease the inflammation and keep you eyes moist. It will help with tear production. The opthamologist can also do some tear producing tests and some other tests to help with diagnosis.
Once you find a competent Rheumatologist, he/she will run a truck load of tests. Once you get a diagnosis (based on lab or symptoms or both), you can be started on treatment. If it is Sjogren's, you will most likely be started on Plaquenil, which takes a while to work, but does help with symptoms and delays progression of the disease. There are other symptomatic treatments as well. In addition, there are some other drugs that can be given to help (immune suppressants).
You probably should also see a Neurologist but be sure to see someone who is familiar with Sjogren's Disease. Otherwise, they will have no clue. Much of the neuropathic pain in Sjogren's is caused by Small Fiber Neuropathy and most neurologists don't know much about it. So, again, try to find one at large university affiliated medical center and ask if he/she is familiar with Sjogren's and Small Fiber Neuropathy.
You can also join the Sjogren's World internet forum. I find it exceptionally helpful and there are many very knowledgeable people on that forum.
http://sjogrensworld.org/forums/index.php?board=1.0
Hope this helps.
Interferon can trigger an underlying Autoimmune Disease. Hepatitis C can trigger an underlying Autoimmune Disease. For me, it was the Hep C that triggered the Autoimmune Disease.
Many people with Sjogren's (and some other Autoimmune Diseases) are not diagnosed for years even though they have an Autoimmune Disease. The doctors love to dump people with Autoimmune Disorders into the Fibromyalgia, Chronic Fatigue Syndrome, andor Depressions trash cans. If they cannot figure it out, then (to them) it MUST be due to one of those three trash can diagnoses.
Don't get me wrong. Depression can be a true diagnosis, but not everyone labeled with Depression is depressed. Depression and Autoimmune Disorders share symptoms (major fatigue, no energy, inability to concentrate) and the easier diagnosis for doctors is to throw the person into the Depression trash can instead of doing the more difficult work of diagnosing the Autoimmune Disorder.
Is your SS-A or SS-B positive along with the positive ANA? If so, that should point to Sjogren's.
However, only 60% of people with Sjogren's have positive antibodies to SS-A or SS-B. The other 40% have negative lab but still have Sjogren's. So competent Rheumatologists will diagnose and treat based on symptoms as well as lab work.
Have you had a salivary gland biopsy (lip biopsy)? The lip biopsy will show if you have salivary gland involvement, which will confirm Sjogren's. The lip biopsy should be done at a large medical facility that does frequent lip biopsies and it should be done by an oral surgeon who is experienced in doing lip biopsies. If it is not done correctly, it will be invalid and, if it is not read correctly by an experienced pathologist, it will also be invalid.
Peripheral Neuropathy (the needles all over your body) is often the first symptom of Sjogren's.
Severe fatigue, sand in the eyes (from severe dryness and corneal abrasions), gastric issues, and much more are classic symptoms of Sjogren's.
Here is a chart that shows what parts of the body Sjogren's can affect:
http://www.sjogrens.org/home/about-sjogrens/symptoms
Also, go to the main page of the Sjogren's Syndrome Foundation for more information.
http://www.sjogrens.org/
See an opthamologist about your eyes. The opthamologist can order Restasis for your eyes. Restasis is an immune suppressant eye drop and it will decrease the inflammation and keep you eyes moist. It will help with tear production. The opthamologist can also do some tear producing tests and some other tests to help with diagnosis.
Once you find a competent Rheumatologist, he/she will run a truck load of tests. Once you get a diagnosis (based on lab or symptoms or both), you can be started on treatment. If it is Sjogren's, you will most likely be started on Plaquenil, which takes a while to work, but does help with symptoms and delays progression of the disease. There are other symptomatic treatments as well. In addition, there are some other drugs that can be given to help (immune suppressants).
You probably should also see a Neurologist but be sure to see someone who is familiar with Sjogren's Disease. Otherwise, they will have no clue. Much of the neuropathic pain in Sjogren's is caused by Small Fiber Neuropathy and most neurologists don't know much about it. So, again, try to find one at large university affiliated medical center and ask if he/she is familiar with Sjogren's and Small Fiber Neuropathy.
You can also join the Sjogren's World internet forum. I find it exceptionally helpful and there are many very knowledgeable people on that forum.
http://sjogrensworld.org/forums/index.php?board=1.0
Hope this helps.
1 Comments
I have ANA 1:40 speckled tbe other test came back neg for lupus but i have every system
I have the same problems as you guys. I was treated with interferon twice. 2006, 2013 and after each treatment I have more problems. I finished my treatment at 2014 and feel terrible. I am sure I have autoimmune disease or diseases and I need treatment otherwise I am done! Pain, needles all over my body, sand in my eyes, tired, Hashimoto's, stomach , mood, and...... Doctors doing nothing about it. I have AMA, ANA positive but still they cannot find the reason I feel so bad. The Reumatologist said I have fibro! I don't think so ! I have all the signs of Sjogren's syndrom ( it's even said in interpretation of my blood work) last time I seen GI he said he never seen my autoimmune blood before. Waiting now to more tests he ordered. He said he checks me for cyrohsis. I feel terrible. Not sure what to do! Any drugs to help to get better from this situation I got?
I am SVR. In 2011-2012 I treated a total of 48 weeks (triple med treatment of Incivik, Interferon, Ribavirin) and am now SVR.
I have been on Plaquenil 400 mg a day since diagnosis in 2013.
I take Prednisone (20 day taper) when I have a flare up of symptoms.
I am currently on Cellcept (mycophenolate mofetil) 1000 mg two times per day. This is to try to decrease the symptoms and prevent the flares ups. I have been on Cellcept for 2.5 months. If it does not work, then I will go on Rituxan. (I tried Imuran, but my liver enzymes went way up so had to stop. Due to the Hepatitis C, I cannot take Methotrexate or Arava.)
So, yes, we can take some of these drugs even if we have had Hepatitis C.
I do not have Systemic Vasculitis now. That was in 1993-94. At that time I was treated with high dose Prednisone for almost a year. At the time, I did not know I had Hepaitits C or Sjogren's, although my Rheumatologist suspected an Autoimmuine Disorder as the cause of the vasulitis. My ANA was positive but my other lab was negative at that time.
Having had Hepatitis C is no concern with Plaquenil. There seems to be no concern with Cellcept either. There have been reports of Hepatitis B reactivation in Ritusxin but the data on Hepatitis C reactivation is sketchy. I looked at all research articles I could find and I cannot find any articles where a person had attained SVR and then had Hep C reactivation from taking Rituxin. Some studies do not clearly state if the people had attained SVR or if they had never been treated (ie had spontaneously cleared the virus without treatment). Hepatitis C reactivation is controversial because it has been felt that Hep C cannot be reactivated due to being a RNA virus. Hepatitis B is a DNA virus whereas Hepatitis C is an RNA virus. A DNA virus can be reactivated. Some researchers feel there is a possibility that occult Hep C (hidden in tissue and never actually eradicated) can become detectable again. This is controversial. At any rate, I have never read any research that states that Hep C positive people who treated with an Interferon regimen and attained SVR later became detectable due to taking Rituxin.
I hope you can find a new Rheumatologist who will thoroughly examine you, take a good history, and run many tests to determine what you have so you can be treated. A good Rheumatologist will diagnose and treat on symptoms because a good Rheumatologist will know that a large percentage of people with Autoimmune Disorders do not have positive blood work. For instance, only 50-60 % of people with Sjogren's have the positive antibodies to Sjogren's. So I hope you can find someone who will listen to you and treat you.
I have been on Plaquenil 400 mg a day since diagnosis in 2013.
I take Prednisone (20 day taper) when I have a flare up of symptoms.
I am currently on Cellcept (mycophenolate mofetil) 1000 mg two times per day. This is to try to decrease the symptoms and prevent the flares ups. I have been on Cellcept for 2.5 months. If it does not work, then I will go on Rituxan. (I tried Imuran, but my liver enzymes went way up so had to stop. Due to the Hepatitis C, I cannot take Methotrexate or Arava.)
So, yes, we can take some of these drugs even if we have had Hepatitis C.
I do not have Systemic Vasculitis now. That was in 1993-94. At that time I was treated with high dose Prednisone for almost a year. At the time, I did not know I had Hepaitits C or Sjogren's, although my Rheumatologist suspected an Autoimmuine Disorder as the cause of the vasulitis. My ANA was positive but my other lab was negative at that time.
Having had Hepatitis C is no concern with Plaquenil. There seems to be no concern with Cellcept either. There have been reports of Hepatitis B reactivation in Ritusxin but the data on Hepatitis C reactivation is sketchy. I looked at all research articles I could find and I cannot find any articles where a person had attained SVR and then had Hep C reactivation from taking Rituxin. Some studies do not clearly state if the people had attained SVR or if they had never been treated (ie had spontaneously cleared the virus without treatment). Hepatitis C reactivation is controversial because it has been felt that Hep C cannot be reactivated due to being a RNA virus. Hepatitis B is a DNA virus whereas Hepatitis C is an RNA virus. A DNA virus can be reactivated. Some researchers feel there is a possibility that occult Hep C (hidden in tissue and never actually eradicated) can become detectable again. This is controversial. At any rate, I have never read any research that states that Hep C positive people who treated with an Interferon regimen and attained SVR later became detectable due to taking Rituxin.
I hope you can find a new Rheumatologist who will thoroughly examine you, take a good history, and run many tests to determine what you have so you can be treated. A good Rheumatologist will diagnose and treat on symptoms because a good Rheumatologist will know that a large percentage of people with Autoimmune Disorders do not have positive blood work. For instance, only 50-60 % of people with Sjogren's have the positive antibodies to Sjogren's. So I hope you can find someone who will listen to you and treat you.
Thank you very much Pooh. Are you taking any treatment for Sjogren`s Desease like imunosupresants, such as predinsone, plaquetil, or for your vasculitis?
I am wonder if those treatments are allowed for us since we had this Hep C virus. Are you SVR now?
Because I am scared not to reativate the dormant virus if I am taking those imunosupresants and my imune sistem wil become weak.
Thank you
I am wonder if those treatments are allowed for us since we had this Hep C virus. Are you SVR now?
Because I am scared not to reativate the dormant virus if I am taking those imunosupresants and my imune sistem wil become weak.
Thank you
I really feel sorry for you :-(
IFN Treatment really can trigger autoimmune diseases like Lupus and I always tell people to stay the hell away from Interferon. It kills people silently, like Hepatitis C.
To do something against the tiredness: Change your diet, stay away from gluten (wheat for example) and lactose (milk) and start to take something called curcumin in a high bioavailable form (Curcuflex for example is great), then you could start to take Dextromethorphan (60mg per day is ok) and tell us how you feel after a week or so. The symptoms should change. best of luck to you. Interferon is just pure evil.
IFN Treatment really can trigger autoimmune diseases like Lupus and I always tell people to stay the hell away from Interferon. It kills people silently, like Hepatitis C.
To do something against the tiredness: Change your diet, stay away from gluten (wheat for example) and lactose (milk) and start to take something called curcumin in a high bioavailable form (Curcuflex for example is great), then you could start to take Dextromethorphan (60mg per day is ok) and tell us how you feel after a week or so. The symptoms should change. best of luck to you. Interferon is just pure evil.
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