Aa
Sjrogren's Syndrome & HCV
I finished treatment in 2012 and was undetected at my 6 month appt. I am pretty late on getting the one year PCR but I know the chances of the virus returning are extremely low. I have been dealing with some symptoms that are impacting my life and emotional health and I am looking to hear if anyone has experienced the stuff I am dealing with lately.
*Diagnosed with inflammation of the bladder before my HCV was diagnosed...caused frequent urination and I still deal with this today. No cause was given for this other than I had either had a bad infection at one time, or my immune system is attacking the bladder.
*I am always thirsty...was recently checked for diabetes and was negative. My mouth gets so dry it bothers me throughout the day. I use Biotene mouth wash and it does not help at all. Gum and drinking water all day does very little and just exasperates my urinary symptoms.
*Eyes starting drying out and becoming hard to open every morning while on treatment, I have to take my fingers, massage and open my eye lids each morning so I do not damage my eyes because they are too dry to open on my own.
*I do have joint pain that has come and go since before, during and after treatment. I will also mention that after 4 hrs of desk work I am beat and exhausted I can't even do my dishes. The fatigue is horrible.
I was seen yesterday and they want my to go to a rheumatologist to be tested for Sjrogren's Syndrome and some other autoimmune diseases. I am very scared that my body is just going haywire right now and I want to know why. They did some blood work yesterday and said my AST was slightly elevated (in the 70's I believe) ALT was normal and all other tests were normal except for total protein was slightly elevated, (which I was told was not enough to warrant concern.) I do not like seeing my AST elevated, as it never was when I had active HCV or when I was on treatment. During the acute phase they were both well over 400 but that was for a short period of time. My Liver disease only caused mild inflammation and my biopsy showed no damage so I do not believe that my liver is the cause for anything I am dealing with right now. I hate going from thinking I conquered HCV, to a whole new host of worries and some support or knowledge would be appreciated.
Thanks
*Diagnosed with inflammation of the bladder before my HCV was diagnosed...caused frequent urination and I still deal with this today. No cause was given for this other than I had either had a bad infection at one time, or my immune system is attacking the bladder.
*I am always thirsty...was recently checked for diabetes and was negative. My mouth gets so dry it bothers me throughout the day. I use Biotene mouth wash and it does not help at all. Gum and drinking water all day does very little and just exasperates my urinary symptoms.
*Eyes starting drying out and becoming hard to open every morning while on treatment, I have to take my fingers, massage and open my eye lids each morning so I do not damage my eyes because they are too dry to open on my own.
*I do have joint pain that has come and go since before, during and after treatment. I will also mention that after 4 hrs of desk work I am beat and exhausted I can't even do my dishes. The fatigue is horrible.
I was seen yesterday and they want my to go to a rheumatologist to be tested for Sjrogren's Syndrome and some other autoimmune diseases. I am very scared that my body is just going haywire right now and I want to know why. They did some blood work yesterday and said my AST was slightly elevated (in the 70's I believe) ALT was normal and all other tests were normal except for total protein was slightly elevated, (which I was told was not enough to warrant concern.) I do not like seeing my AST elevated, as it never was when I had active HCV or when I was on treatment. During the acute phase they were both well over 400 but that was for a short period of time. My Liver disease only caused mild inflammation and my biopsy showed no damage so I do not believe that my liver is the cause for anything I am dealing with right now. I hate going from thinking I conquered HCV, to a whole new host of worries and some support or knowledge would be appreciated.
Thanks
I do go to a PCP for a yrly physical, but again, like next week, I have my two children, and my disabled Hubs, all getting our yrly physicals at the sam etime, and each of us has specific problems, etc. I plan on getting the referal to the Rheumatologist Jules.
With my Tx Doc, we just get a lecture about the basics of Hep C and Tx, but here, I get a fine-tuned education. I did find out some more stoofz: "
Primary Sjogren's syndrome - as mentioned before, experts are not sure what the exact cause of Sjogren's syndrome is. Most believe it is likely to be a combination of environmental and genetic factors. Some people are probably born with certain genes that make them more susceptible to having an abnormal immune system. Sometime during their life, an environmental factor, such as hepatitis C viral infection, or an infection with the Epstein-Barr virus may have triggered the immune system not to work properly."
and...the link~
http://www.medicalnewstoday.com/articles/233747.php
With my Tx Doc, we just get a lecture about the basics of Hep C and Tx, but here, I get a fine-tuned education. I did find out some more stoofz: "
Primary Sjogren's syndrome - as mentioned before, experts are not sure what the exact cause of Sjogren's syndrome is. Most believe it is likely to be a combination of environmental and genetic factors. Some people are probably born with certain genes that make them more susceptible to having an abnormal immune system. Sometime during their life, an environmental factor, such as hepatitis C viral infection, or an infection with the Epstein-Barr virus may have triggered the immune system not to work properly."
and...the link~
http://www.medicalnewstoday.com/articles/233747.php
I have had this symptoms,for 11 yrs prior to Treating: frequent urination and it gets better if I have a "clean diet" , meaning, without processed foods, white bread, and "junk-food". And the bladder problem gets worse with stress.
Also, right before I treated, and now, after I treated (I obtained SVR with 28 weeks of Triple w/Victrelis) I am always feeling thirsty, and feel dehydrated, and jittery. Drinking water doesn't seem to help much. Also, for years and years now, the skin on the heels of my feet is very dry.
I associate the extreme thirst to the hot-flashes and sweats I get, (menopausal) and when I was Treating, I had NO hot-flashes!
Oh, I also have had a dry feeling in my lungs for years now. I am going to get a referal for a Rheumatologist, thank you for the info, both Pooh, and LionLuvr :)
Also, right before I treated, and now, after I treated (I obtained SVR with 28 weeks of Triple w/Victrelis) I am always feeling thirsty, and feel dehydrated, and jittery. Drinking water doesn't seem to help much. Also, for years and years now, the skin on the heels of my feet is very dry.
I associate the extreme thirst to the hot-flashes and sweats I get, (menopausal) and when I was Treating, I had NO hot-flashes!
Oh, I also have had a dry feeling in my lungs for years now. I am going to get a referal for a Rheumatologist, thank you for the info, both Pooh, and LionLuvr :)
You must have a good Primary care Physician (or who ever is referring you to a Rheumatologist). That is a plus, to have someone who actually pays attention to your symptoms and tries to find out the cause. Plus, it sounds like this person actually knows enough to suspect Sjogrens.
I am not saying you have Sjogrens, but you do have the classic symptoms, the dry eyes and the dry mouth. Plus, Sjogren's can also cause your other symptoms (the urine problems, the joint pain, the fatigue). So seeing a Rheumatologist is imperative to get a correct diagnosis and get correct and timely treatment. Autoimmune disorders often occur in pairs or even more (three or four of them), so I am sure they will test you for everything in the book. The earlier they can diagnose you, the earlier they can start treatment, and treatment is the key to preventing future problems and delaying the progression.
My Rhematologist is quite certain that the Hep C triggered the Sjogren's. While there is frequently a genetic predisposition to Autoimmune Disorders, often they are triggered into activity by infections. I have had symptoms of Sjogrens for years and years, many years before I treated for Hep C. However, none of my regular doctors every put two and two together. They just said my symptoms were from age, which I never believed.
Let me just give you a little background. I had Hep C Genotype 1 and treated with triple med treatment (with Incivek) from Sept. 2011 through August 2012. I attained SVR. I had a lot of extrahepatic manifestations prior to treatment. After the side effects subsided (about 6 months after treatment ended) I felt really good. Most of the extrahepatic manifestations were gone, even the joint pain and the tingling and burning in my feet and toes. I had a ton of energy and never got tired anymore. I felt better than I had for 20 years. I still have no fatigue, at least not mental fatigue. I still feel better than I have felt for 20 years. However, as the months wore on, the joint aches and pains started to return. Plus I still had some rash issues, mainly psoriasis. The tingling and burning came back (feet). My ankles and lower legs developed a rash and also swelling. I kept feeling something was not right. I was concerned about an autoimmune disorder. In May 2013 I went to an ENT doctor at the University for a nasal problem and she ran a few screening tests for Autoimmune Disorders . The ANA was positive (which it had been positive in Jan. of 2012). So I asked her for a referral to a Rheumatologist because I was concerned. I saw the Rheumatologist in July 2013 (also at the University). She ran a truckload of tests. I kid you not. They took about 400 cc of blood (ran about 39 tests). Well, 3 came back positive. The ANA was positive, of course. The SS-A (for Sjogren's) was positive. And another test was only slightly elevated (cannot remember it without looking it up). All of the other tests (Rheumatoid Arthritis, Lupus, Cryo, etc.) were negative, for which I am very happy.
Let me tell you my symptoms, most of which I have had for years. When you read my symptoms, you may identify some more symptoms that you may have. The symptoms on this list are all signs of Sjogren's. Some of them I just got used to,thinking they were just weird symptoms that I had, but now I see that they are all symptoms of Sjogren's. (I have been doing tons of research on Sjogren's hoping to learn as much as possible about Sjogrens.) Anyway, here are the symptoms I have. There are more symptoms/complications of Sjogren's, but these are what I have.
Dry eyes (feels like sand in them) (since 2008-2009)
Eyelid Inflammations (since July 2012)
Dry Mouth (I sip water all day and night) (years)
Dry Throat (years)
Difficulty Swallowing (difficulty swallowing dry food without liquids) (years)
Dry Lips (chapped) (6-7 years)
Sinus Congestion (since 1979)
Dry Nose (thick mucous) (nasal crusting) (years)
Dry Cough (years)
Shortness of Breath (years)
Dry Skin (years but much worse for past 7 years)
Rash (various types) (since Dec. 2011)
Psoriais (since July 2012)
Joint Pain, Aches, and Stiffness (several years) (gradually getting worse and more widespread) (Bilateral Hips, Knees, Wrists, Hands, Fingers … Left Shoulder…coccyx)
Muscle aching in thighs (2 years)
Peripheral Neuropathy (Bilateral feet and toes burning and tingling for several years; Bilateral toe numbness since about April 2013)
I take Restasis drops am and bed time for the dry eyes. I have been on Restasis since before Hep C treatment. In the mid day I use Systane drops. The Restasis is a prescription and it works great. The Systane is over the counter and works for in between, but the Systane without the Restasis won't work for me. I tried it before I went on Restasis.
My Rheumatologist started me on Plaquenil for the Sjogren's. Hopefully it will combat the disease and keep it from progressing.
For the dry mouth I carry water every where I go and I drink sips all day and all night. I have done that for years. (Yes, it results in frequent bathroom visits, but it keeps my mouth from feeling parched.)
I have some prescription antibiotic that I can use on my eyelids if I need it for the inflammation. Mupirocin (2 percent) ointment.
I have steroid creams for the rashes and Psoriasis. Plus I use a good moisturizing lotion like Eucerin.
Drinking water helps the dry throat and cough.
I have asthma so I already have an inhaler for the shortness of breath.
I have not found anything yet that works for the joint aches and pains. I recently started the Plaquenil, which should help, and I also started taking Turmeric 400 mg daily (with my Rheumatologists approval)
For the difficulty swallowing I cut my food into small pieces and always eat it with wet foods and/or fluids. I have done this for years as I was having trouble swallowing the food without liquids.
It is imperative that you see a very knowledgeable Rheumatologist who is up to date on all of the Autoimmune disorders and Rheumatological disorders. That way you can get diagnosed and treated for any and all diseases you may have. The earlier the treatment, the better.
Also, a good Rheumatologist will monitor you for any complications.
I do have a link to an excellent article on Sjogren's. I will include it even though you do not yet know what you have. It may be of value to you or to someone else.
http://www.biomedcentral.com/1741-7015/11/93
I am not saying you have Sjogrens, but you do have the classic symptoms, the dry eyes and the dry mouth. Plus, Sjogren's can also cause your other symptoms (the urine problems, the joint pain, the fatigue). So seeing a Rheumatologist is imperative to get a correct diagnosis and get correct and timely treatment. Autoimmune disorders often occur in pairs or even more (three or four of them), so I am sure they will test you for everything in the book. The earlier they can diagnose you, the earlier they can start treatment, and treatment is the key to preventing future problems and delaying the progression.
My Rhematologist is quite certain that the Hep C triggered the Sjogren's. While there is frequently a genetic predisposition to Autoimmune Disorders, often they are triggered into activity by infections. I have had symptoms of Sjogrens for years and years, many years before I treated for Hep C. However, none of my regular doctors every put two and two together. They just said my symptoms were from age, which I never believed.
Let me just give you a little background. I had Hep C Genotype 1 and treated with triple med treatment (with Incivek) from Sept. 2011 through August 2012. I attained SVR. I had a lot of extrahepatic manifestations prior to treatment. After the side effects subsided (about 6 months after treatment ended) I felt really good. Most of the extrahepatic manifestations were gone, even the joint pain and the tingling and burning in my feet and toes. I had a ton of energy and never got tired anymore. I felt better than I had for 20 years. I still have no fatigue, at least not mental fatigue. I still feel better than I have felt for 20 years. However, as the months wore on, the joint aches and pains started to return. Plus I still had some rash issues, mainly psoriasis. The tingling and burning came back (feet). My ankles and lower legs developed a rash and also swelling. I kept feeling something was not right. I was concerned about an autoimmune disorder. In May 2013 I went to an ENT doctor at the University for a nasal problem and she ran a few screening tests for Autoimmune Disorders . The ANA was positive (which it had been positive in Jan. of 2012). So I asked her for a referral to a Rheumatologist because I was concerned. I saw the Rheumatologist in July 2013 (also at the University). She ran a truckload of tests. I kid you not. They took about 400 cc of blood (ran about 39 tests). Well, 3 came back positive. The ANA was positive, of course. The SS-A (for Sjogren's) was positive. And another test was only slightly elevated (cannot remember it without looking it up). All of the other tests (Rheumatoid Arthritis, Lupus, Cryo, etc.) were negative, for which I am very happy.
Let me tell you my symptoms, most of which I have had for years. When you read my symptoms, you may identify some more symptoms that you may have. The symptoms on this list are all signs of Sjogren's. Some of them I just got used to,thinking they were just weird symptoms that I had, but now I see that they are all symptoms of Sjogren's. (I have been doing tons of research on Sjogren's hoping to learn as much as possible about Sjogrens.) Anyway, here are the symptoms I have. There are more symptoms/complications of Sjogren's, but these are what I have.
Dry eyes (feels like sand in them) (since 2008-2009)
Eyelid Inflammations (since July 2012)
Dry Mouth (I sip water all day and night) (years)
Dry Throat (years)
Difficulty Swallowing (difficulty swallowing dry food without liquids) (years)
Dry Lips (chapped) (6-7 years)
Sinus Congestion (since 1979)
Dry Nose (thick mucous) (nasal crusting) (years)
Dry Cough (years)
Shortness of Breath (years)
Dry Skin (years but much worse for past 7 years)
Rash (various types) (since Dec. 2011)
Psoriais (since July 2012)
Joint Pain, Aches, and Stiffness (several years) (gradually getting worse and more widespread) (Bilateral Hips, Knees, Wrists, Hands, Fingers … Left Shoulder…coccyx)
Muscle aching in thighs (2 years)
Peripheral Neuropathy (Bilateral feet and toes burning and tingling for several years; Bilateral toe numbness since about April 2013)
I take Restasis drops am and bed time for the dry eyes. I have been on Restasis since before Hep C treatment. In the mid day I use Systane drops. The Restasis is a prescription and it works great. The Systane is over the counter and works for in between, but the Systane without the Restasis won't work for me. I tried it before I went on Restasis.
My Rheumatologist started me on Plaquenil for the Sjogren's. Hopefully it will combat the disease and keep it from progressing.
For the dry mouth I carry water every where I go and I drink sips all day and all night. I have done that for years. (Yes, it results in frequent bathroom visits, but it keeps my mouth from feeling parched.)
I have some prescription antibiotic that I can use on my eyelids if I need it for the inflammation. Mupirocin (2 percent) ointment.
I have steroid creams for the rashes and Psoriasis. Plus I use a good moisturizing lotion like Eucerin.
Drinking water helps the dry throat and cough.
I have asthma so I already have an inhaler for the shortness of breath.
I have not found anything yet that works for the joint aches and pains. I recently started the Plaquenil, which should help, and I also started taking Turmeric 400 mg daily (with my Rheumatologists approval)
For the difficulty swallowing I cut my food into small pieces and always eat it with wet foods and/or fluids. I have done this for years as I was having trouble swallowing the food without liquids.
It is imperative that you see a very knowledgeable Rheumatologist who is up to date on all of the Autoimmune disorders and Rheumatological disorders. That way you can get diagnosed and treated for any and all diseases you may have. The earlier the treatment, the better.
Also, a good Rheumatologist will monitor you for any complications.
I do have a link to an excellent article on Sjogren's. I will include it even though you do not yet know what you have. It may be of value to you or to someone else.
http://www.biomedcentral.com/1741-7015/11/93
oops thanks!! no wonder the doctor kept looking at me funny when I explained this all yesterday lol.
I'm so glad Pooh is on this for you, she is a great source of knowledge and support. I tried to restrain myself from correcting you, as your intent is quite clear even though the wrong word is used (and its actually almost a better word in terms of conveying the feelings involved), but I can't stop myself. The word you wanted was "exacerbate", not "exasperate". Symptoms are exacerbated, while people can feel exasperated. Thank you for the cutest word substitution I've seen in years though! Good luck with your quest to understand what is happening to your body.
hi, yes the urinary symptoms started long before treatment while my HCV was active and unknown.
frequent thirst, fatigue and joint pain has been here before treatment as well, although the fatigue now seems worse than ever.
Eyes started to dry out a few weeks before treatment and became much worse with treatment, as did the dry mouth.
I do not think interferon caused this. May have exasperated the symptoms though? I think this came secondary to the HCV...or was let loose because of my body reacting to the virus.(that of course is just my opinion.)
frequent thirst, fatigue and joint pain has been here before treatment as well, although the fatigue now seems worse than ever.
Eyes started to dry out a few weeks before treatment and became much worse with treatment, as did the dry mouth.
I do not think interferon caused this. May have exasperated the symptoms though? I think this came secondary to the HCV...or was let loose because of my body reacting to the virus.(that of course is just my opinion.)
PS: I was recently diagnosed with Sjogren's (which I have actually had for several years, long before I treated my HCV, but no one ever put two and two together). Anyway, I will be able to give you a lot of information, but I did want to find out which symptoms you had before treatment before responding.
First, congratulations on attaining SVR.
Second, did you have these symptoms before treatment? I know you said you had the bladder symptoms before treatment and also the joint pain. Did you have the fatigue, the dry eyes (like something in them), and the dry mouth before treatment?
I will respond with a much longer response soon, but I wanted to get that basic information about when everything started first.
Second, did you have these symptoms before treatment? I know you said you had the bladder symptoms before treatment and also the joint pain. Did you have the fatigue, the dry eyes (like something in them), and the dry mouth before treatment?
I will respond with a much longer response soon, but I wanted to get that basic information about when everything started first.
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