I had one dx herniation in a lumbar disc prior to tx and one more diagnosed during tx. I decided to read on the subject and found out that it is made of 80% water. Even though I was on Pegasys, and it is not processed through the kidneys the way pegintron is, the meds probably still increase the need for H2O and maybe the tissue with the most need for water can suffer some defficiency that makes them weaker. It was one of the many theories I pondered upon. Of course, family hx of disc problems plus the huge fall in my 30's when learning to roller skate and gad knows what else, did not help either. I had that feet problem during tx, but it did not stay for good which is ok by me, since I got the disc to contend with.
All; a while back there was a discussion of the malar rash associated with other symptoms, either pre, during and after tx. Who has had the rash and was anything else associated with it? All I can find on the net is a connection to lupus, but it does seem to have other causes that are not pursued as much as the lupus connection, like lyme.
It was brought to my attention last wk that my face was 'flushed' and I had no other symptoms and did not even noticed the rash until it was mentioned to me.
http://www.myalgia.com/lupus.htm
In searching for more on info on the rash I came accross this site that I bookmarked because it is quite comprehensive in the description, diagnostic tests and possible causes for many of the complaints we are having. It is dated 2003, so it mentions hep b as possible cause for some symptoms, but I think it should be updated to also include hep c in their list. I guess we can safely assume that if hep b can do it, so can hep c.
read this site when you have time and see if anything rings a bell. Honey, it has mouth ulcers as a symptom of immune disorder, check it out:
http://www.aafp.org/afp/20030915/1151.html
I frequently get the malar rash on my face, and it began during my first tx in 1999. It comes and goes according to how badly I am feeling, and I do believe that in my case it is a 'sort of Lupus-like' manifestation. The rash is not really like being flushed, or a reddening of the 'cheecks' for a short period of time, but is more across the cheekbones, and sometimes shows up across the bridge of the nose. My rash looks red and somewhat spotted, strawberry like, and feels a little warm or tingly when it is at its peak. It is not very prominent, but still is noticable if you look for it. My rheumatologist has told me several times that a 'vague autoimmune disorder' that shares similarities with Lupus, is a common occurrence after interferon therapy, and that many patients coming to him have this syndrome. He did not seem to feel that it was as much of a concern as full blown Lupus, or RA, and did all the blood tests on me to eliminate other issues (lyme, systemic diseases, etc.), and found all the 'mild to moderate' autoimmune abnormalities on my results that he sees on others who are post tx. He offered no plan of treatment, or medication, and more or less implied to 'live with it' and see if it gradually fades away. That was almost two years ago, well after I had finished tx....and today...my symptoms are the same. They flare in cycles.
Bear in mind that autoimmune diseases, like Lupus, RA, Sjogren's, etc., often manifest in joint and connective tissue symptoms, fatigue, brain fog, and odd rashes, mouth sores, etc. Abdominal discomfort, and lung problems are also a frequent part of the pattern.
So if you look at many who have pronounced post-tx problems, I think you will find combinations of the above symptoms to be the main issue...with or without the malar rash.
I believe that many of us have reacted to the lengthy interferon dosing by creating an ongoing state of 'autoimmunity' in our bodies. Maybe this is only happening in some people, and in varying degrees, but it does seem to be a common pattern for many. One research oriented department head that I spoke to at Johns Hopkins said that interferon causes changes in cellular behaviors that often get passed on to succeeding generations of new cells....his inference was that it might take a good many years to slowly unwind the influence of interferon on our systems.
DoubleDose
Yes, I remember you had mentioned the rash and so did Scott. I was not sure if you were still experiencing it. I remember having it many yrs ago while living in Ohio and it made me think of a unconfirmed dx of lupus from a test done during my hospitalization for Dengue. It looks as if traumatic illnesses can trigger autoimmune responses also, depending on how severe you experience them. I have no idea what test they performed since I never was able to get copies. Subsequent tests showed nothing definitive. I had the rash during tx, and for a short time after tx.
This is 14 months post and for the last few months I felt almost the same as pre tx in the aches and lassitude, and recently the rash(lasting two or three days). I can't make the tx connection, though, because a recent lyme test shows some reactivity, but the one yrs ago was negative. Lyme is another very hard condition to dx.
So many factors can play a part in what we develope down the line. I can't honestly make any direct connection to the tx, in my case. I think finding out why some folks don't develop anything and determining why, can also help to discover what is at work in those that do develop something, much like the research done on spontaneous recovered hcv infected, compared to the med triggered svr and the still infected, ongoing at the Hepatitis Center in NYC. BY checking the blood of each one and comparing the components, they can tell what might be at work.
Maybe at some point they will check the bloodwork of folks complaining of ongoing symptoms and compare it to those who don't seem to have any. As stated in the polyarticular joint aches article, there would have to be a very comprehensive evaluation that includes just about everything from familial hx to taxes paid.
HAve you contacted any researchers with your questions or with requests to study things further?
Just on a little note - on a soap opera last week the character who is in dire need of a liver transplant experienced really bad LUQ pain apparently as he actually went OH! started to fall over and grabbed at slightly over his left hip.
I wonder why nobody bothered to tell him where his liver is?
Just thought that might make us all feel better, you know, things could be worse we could be having LHQ pain (left hip quadrant) LOL
That would be the upper left qudrant of his A## I suppose. Doc keeps trying to show me where my liver is located on a wall chart in his office. I tell him I don't want to know because if I do and as big a hypocondriac (spelling - Tennessee native) as I have become I would swear I had a new ailment. Ignorance is bless and I am one happy fellow. Dale