HR - I know you're very busy - and probably have no time right now... But if you do, I could use some assistance in locating any connections (abstracts or total articles/studies) for Fibro or Arthritis or any Tendon/Muscle issues connected to HCV or INF TX.
My brief HX. (just noted my chart today)
41 yr old female
1993 - Known clearance of ALL Hep issues
(Hep Panel documented - no health issues other than Asthma Mild and occasional yearly allergies and sinus infections - strep once or twice a year - EMT2 profession plus dispatching)
1993 - HEPB vaccine
1995 - pregnancy - normal - October conception
1995-1996 Jan Dec - vag bleeding - Rhogam (gammaglobulin) - stopped poss miscarriage
1996 - Jan - Florida Cruise - Extreme swelling up to 3 shoe sizes - profuse sweating - extreme nausea - headache - etc. Attributed it to pregnancy and the cruise combination Lasted almost 2 weeks - then everything settled down.
1998 - Moved to Kodiak - had multiple visits for allergic reactions to flora in area
1998 - 2002 - consistently seeing Doctor for major asthma - allergies - sinus infections (4 - 6 times per year or more)
1999 - Breast Reduction - no Transfusions (seeing dr still 3 - 4 times per year for asthma/allergy/sinus issues - bronchitis becomes normal every year up to 2007)
2002 - September - Tendons in rt heel snapped - Plantar Faciitis - used corticosteroid injection and pain meds.
2002 - Nov - Lft heel tendon popped - Plantar Faciitis - complaints of pain in knees, shoulders and hips
2003 May - Tendons again causing problems - another corticosteroid shot - and included physical therapy - complaints of tendons in arms and backs/insides of legs being "uncomfortable" Saw Dr. 4 times in 2002 - 2003 for allergy/asthma complaints
2005 - massive premenstrual problems starting - heavy clotting, hormones different - Complaints of pain in body - no inflammation markers in tests - run tests for cancer, MRI, Catscans, multiple Diabetes testing, Xrays - Nothing shown.
2006 May - complaints of pain in chest rib cage cartiledge - considered costochondritis - given antibiotics, Advil, xanax (not painful - but "freaky") More tests run for cancer, thyroid, etc.
2006 - Jun - Health aide looking over normal blood draws notices slight increase in ALTs and ASTs over last 5 years - very minimal - but orders HEP panel - HEPC pos. Orders PCR, etc.
2006 - blood work hyperglycemia - low thyroid functions
2006 - Start TX - awful side effects (fog, pain in bones, muscles, tendons, connective tissues - headaches, more menses issues) (saw Dr. 2x for sinus infections)
2007 - complete TX - still having side effects during year - menses issues become primary focus - extreme cramping, heavy bleeding x20 days - stop for 10 with golfball to lime sized clotting. During 2007 only visited Dr. 2 times for sinus/asthma issues UND - and then SVR
2007 June - Pain complaints of knee, shoulder, lower back, neck, musculature frame and tendons.
2008 - Jan LAVH plus cystocele repair, rectocele gynecare TVT mesh implant and ovary removal for par cyst and tumor mass (benign) Given Opiod (percocet 10/325 for 3 months)
2008 - Pain from Hysterectomy subsides, but pain in shoulders, neck, back, arms, chest and legs still present with weekly migraines and IBS present. Have not visited Dr for Sinus/Asthma issues since early 2007
SVR status Good
Today - Blood draws for TSH - Liver Functions - Inflammation - TSH and Glucose/Diabetes tests
OK - now with all that said --- I'm thinking I've got Fibromyalgia or something that is causing pain in my cartilage, tendons, muscles and joints.
My doctor is not of the belief that HCV can cause these types of things --- but he was the first to admit that he doesn't know enough about HCV or INF TX - and in fact advised that he has only spoken to ONE person POST TX ---- "ME". He had no idea what SVR (both in SVR or as Sustained Virologic Response) meant --- or what Undetectable meant... Sigh....
He advised that most people do not complete the TX (at least in this area) --- I'm limited with doctors here because I live on an Island.
He's talking about referring me to a Rheumatologist - which is great - but I'm not exactly sure that this is the correct problem.
Family HX of Rheumatoid Arthritis - but not until after 60 YOA. Grandmother, Great Grandmother both were Diabetic and RA - but again not until AFTER 60.
I've been taking Glucosamine Chond. Sam-e, CoQ10, fish oils.
Moderate Exercise - Moderately overweight. 175 to 170 on 5'6 large boned frame (hands the size of most basketball players - large hips - large ribcage and shoulders)
I've been living on 800 mg Advil 3 - 4x daily for the last 3 months. It works - but isn't quite cutting it.
In the mornings - I can barely move and my tendons literally "creak" when I stretch - plus my muscles are fatigued and achey. I have a very difficult time falling asleep - and have tried different mattresses, etc.
I don't like taking medications - so sleeping aids aren't in the picture for me --- But I'm at the point where Advil isn't working... And realize that other meds are probably in the future for me.
I'm a non-addictive personality for medications and alcohol. (If you need to know - I had no risk factors prior to HCV, except surgery and possibly the Rhogam shot)
So ---- I'm trying to show the Doctor articles about HCV - and INF leading to AIs and possibly other items --- Because I firmly believe that this is what is going on with my case.
I also want to educate my doctor so that he can work with others in our area with issues POST and During TX.
Maybe that's not my job -- but --- We're starting to see an influx of HCV here on the island - and someone has to know about this stuff...
Anyhow - this relates mostly to me --- dunno if you can help ---- but if you've got any place I can go - that specifically deals with HCV - INF and Connective Tissues, Muscular, Tendons and Bone Issues ---- PLEASE let me know. I've tried everything I know in searching on Google - other search engines.... etc..
But while there is the commentary that INF usage can cause AIs in the Patient and Doctor Lit profiles --- There are no freaking articles or studies that I can find that document that. Nothing that shows the mechanism... Nothing that shows anything I can show him...
WOW! Quite a ride you have had for a 41 yr old. Feels like I know more then I should about you :-) I did not read it all because I felt it was a little to personal for me to read with the woman stuff, etc. Anyway I hope HR sees it and is able to read it all. he is the guy that should be able to give you some answers. Hope you feel better soon.
You sweetie - you can read it -- I wouldn't have posted it otherwise.
I think in sharing - we all help each other become more aware of the hidden possibilities of problems, reactions and outcomes of medications, lack of medications and treatments...
In every action - there is a reaction.
Chaos theory 101. LOL!
I put it up to share - as well as to glean some serious information. I'm a mild case ---- People like DebNev and Alagirl --- wow - they make me look like a sissy. LOL! They're amazing people to have taken such a hard ride.
Wow, you've been through the mill, girl! I'm sorry you're still suffering, 'cause this should not happen to nice people like you. Anyway, I think the referral to a rheumatologist is definitely in order, because they are the specialists who deal with AI issues.
Since joining this group, I've noticed scads of people who have various connective tissue or AI problems - before, during and/or after tx for hcv. I'm sure you've done your homework googling this, hence the inquiry to HR. But in the meantime, can't you appeal to your doctor's scientific curiosity? At one point in their lives, I figure, most of these doctors were good students or they wouldn't have been admitted to med school - and if you can pique their interest, you can sometimes get them off their fat ***** and into research mode.
There have been some articles suggesting that celiac disease can be triggered by interferon. This could cause IBS symptoms and joint problems too. All you'd have to do to test it would be to found out all the source's of gluten and avoid them for a couple weeks and see if there is an improvement. just and idea I had ...don't know if it's worth anything. One article lately stated that gluten sensitivity is very prevelant in people taking interferon and causes some of the symptoms they experience. Most people go back to normal but it remains afterwards in others. This might be something to check in to. I have also read that it is a very underdiagnosed problem.
Extrahepatic Manifestations of Chronic Hepatitis C
Roderick Remoroza, MD, and Herbert Bonkovsky, MD
(To see the figures and illustrations in this article, please download the pdf version.)
Although most patients with chronic hepatitis C are asymptomatic, an appreciable number will experience symptoms that are due to the liver disease and/or extrahepatic manifestations of HCV infection. Recognition of these symptoms will lead to early diagnosis and treatment of hepatitis C. Fatigue is the most common symptom of chronic hepatitis C and is most often mild. Intermittent right upper quadrant pain, anorexia and nausea occur less commonly.
Chronic hepatitis C infection predisposes patients to the development of diseases involving other organ systems including the kidneys, the skin, eyes, joints, immune system, and the nervous system. There are many extrahepatic manifestations of hepatitis C: some are relatively common (e.g., cryoglobulinemia), whereas others are infrequent and their association with hepatitis C has not been clearly defined. Only the common extrahepatic manifestations with clear association with hepatitis C will be discussed in this review.
Cryoglobulins are antibody complexes that precipitate as serum is cooled and that dissolve on rewarming (1). These complexes contain hepatitis C virus (HCV) particles and can precipitate in the walls of small and medium sized vessels. There are three types (I, II, III) of cryoglobulinemia .Type II or “mixed” cryoglobulinemia (MC) is the one most commonly associated with chronic hepatitis C infection. This type is called “mixed” because the antibodies that are found are of two kinds. One antibody is a polyclonal (i.e., from more than one group of cells) antibody (IgG), and the other antibody is a monoclonal (IgM) directed against the IgG. The frequency with which cryoglobulins are detectable in serum of patients with CHC depends on how carefully samples are handled and upon the methods used for detection of cryoglobulins. Because these proteins precipitate from serum as it is cooled, the blood must be kept at body temperature after it has been obtained until it has clotted and the serum has been drawn off. Then the serum is tested for the abnormal proteins. If this precaution is not observed, the test may be spuriously negative.
The skin, kidney, nerves and joints can be affected by cryoglobulins. Cutaneous leukocytoclastic vasculitis is a skin lesion that appears as palpable purpura (hemorrhages in the skin that result in the appearance of purplish spots or patches) that usually affects the lower extremities over the shins (Fig 1). These lesions are caused by plugging of the dermal capillaries (very small blood vessels in the skin). Successful treatment of the hepatitis C infection with interferon (+ ribavirin) usually results in resolution of the skin lesions.
Cryoglobulins also affect the nervous system in some HCV infected patients. The most frequent symptoms and signs are those of chronic sensory polyneuropathy, although acute or subacute encephalopathy has been reported as well (2,3). “Restless leg syndrome” and Guillain-Barré syndrome have also been reported (4). The mechanism of nerve involvement is thought to be MC-well-established related vasculitis of the small blood vessels that supply the nerves. There is no well-established treatment. Treatment with interferon, corticosteroids, or cyclophosphamide (cytoxan) has not shown any consistent results although some patients appear to respond to one or a combination of these drugs (5).
The kidneys are also affected in some patients with hepatitis C. The most common kidney disease related to hepatitis C infection is membranoproliferative glomerulonephritis (MPGN) (6). The prevalence of MPGN varies with geographical location. It is more common in Japan and is less frequently seen in France. Patients with MPGN usually complain of weakness, edema and have systemic arterial hypertension. Urine of such patients contains a lot of protein (>3.5 g/day), a condition called nephritic syndrome. Other abnormalities include low serum albumin (due to losses in the urine), decreased complement levels, and the presence of rheumatoid factor and cryoglobulins. MPGN may sometimes occur in the absence of cryoglobulinemia. Another kidney disease called membranous nephropathy (MN) is less common in HCV infected patients and is not associated with cryoglobulinemia or rheumatoid factor but is associated with heavy proteinuria (7). The mechanism of the disease is still unclear, but some studies suggest that it is caused by circulating complexes of antibodies and HCV particles directly causing damage to the kidneys as they are deposited in the glomerulus and tubules of the kidneys. Some authors recommend treatment of patients with HCV-related kidney disease even in the absence of active liver disease. The current treatment of choice for HCV infection is interferon and ribavirin. However, in patients with severe renal failure, only interferon monotherapy is recommended because ribavirin cannot be removed by dialysis. Thus, it accumulates and causes severe breakdown of red blood cells (hemolysis) and anemia.
Porphyria cutanea tarda (PCT) is the most common form of the porphyrias, a group of diseases characterized by defects in one or more of the enzymes involved in the production of heme. This results in the overproduction of porphyrins or its precursors. Patients with PCT often present with blisters and vesicles on the dorsal aspects of the hands, forearms, back of the neck and face. These lesions develop in areas that are exposed to the sun and that sustain minor trauma. Increased facial hair and pigmentation changes are also noted. In some patients, as the injury becomes chronic, scarring, alopecia and thickening of the skin may occur. The skin lesions may be further complicated by deposition of calcium and formation of non-healing ulcers. See Figure 2. Patients with PCT who are of northern European origin were also found to have increased prevalence of HFE gene mutation, the gene found to be responsible in most cases of hereditary hemochromatosis. In addition to iron, heavy alcohol use and use of estrogens are also major risk factors for the development of PCT. The treatment of PCT involves dietary restriction of foods rich in iron, and avoidance of alcohol and estrogen use. Phlebotomy to remove iron is the first treatment for most patients with PCT. In patients with PCT, we recommend iron depletion by phlebotomy before initiating antiviral therapy with interferon and ribavirin. Antimalarial drugs like chloroquine have been used in the treatment of PCT as well (8).
In a large case–control study of 34,204 veterans, lichen planus, vitiligo and PCT are the skin disorders that have been found to have significant association with HCV infection (9). Lichen planus is a disease of the skin and mucous membranes that appears as violaceous, scaling papules usually located on the limbs and white reticular lesions on the mucous membranes (See Fig 3). It is suggested that this is an autoimmune response to an antigen shared by HCV particles and the basal cell layer of the skin. Vitiligo is an acquired loss of pigmentation of the skin. The loss of pigmentation is usually found around body orifices like the mouth, eyes and nose and on the extensor surfaces of the elbows and knees as well as the wrists. Interferon has not been found to be uniformly effective in the treatment of lichen planus.
RHEUMATOLOGIC and AUTOIMMUNE MANIFESTATIONS
Myalgia (muscle pains), fatigue and arthralgias (joint pains) are common manifestations of HCV infection. HCV-related arthritis commonly presents as symmetrical inflammatory arthritis involving small joints. The joints involved in HCV-related arthritis are similar to rheumatoid arthritis (RA). This sometimes makes it difficult to differentiate true RA from HCV patients with positive rheumatoid factor but without RA. HCV-related arthritis is usually non-deforming and there are no bony erosions in the joints. A marker called anti-keratin antibodies has been studied to differentiate true RA from HCV related arthritis. In a recent study, 71 patients who were rheumatoid factor positive were tested for anti-keratin antibodies. Anti-keratin antibodies were detected in 20/33 (60.6%) patients with true RA and only 2/25 (8%) patients with HCV-related arthritis (10). Patients with HCV-related arthritis seldom respond to anti-inflammatory medications, and although there are no controlled trials to address this issue, it has been recommended to treat these patients with combination antiviral therapy of interferon and ribavirin (11).
Sjogren’s syndrome (SS), an autoimmune disease characterized by dry eyes and dry mouth has been found in some studies to be more common in HCV infected patients. They differ from primary SS in that they do not have lung and kidney involvment. Thus it is recommended to test for HCV infection in patients with SS or primary SS. A study by El-Serag of 34,000 veterans failed to show a significant association between HCV infection and diabetes, SS, or autoimmune thyroid disease (9).
Interferon therapy of HCV infection may also trigger the development of autoimmune diseases, the most frequent of which is autoimmune thyroiditis (Hashimoto’s thyroiditis). This may lead transiently to hyperthyroidism, but eventually to hypothyroidism (underactive thyroid) and to the need for life-long thyroid replacement therapy (Bonkovsky & Mehta).
B-cell non-Hodgkin’s lymphoma (NHL) has been linked to HCV infection. This is probably due to the long-standing stimulation of B cells caused by chronic HCV infection, although other factors must be important because most patients with CHC do not develop such lymphomas. A high prevalence of HCV was found in patients with immunocytomas, a low-grade type of lymphoma, which was associated with cryoglobulinemia. Another study linked HCV infection and splenic B-cell lymphomas. Seven of nine patients with splenic lymphoma were treated with interferon monotherapy. Two patients who had detectable HCV RNA after treatment received combination therapy of interferon and ribavirin. All nine patients had sustained virological responses and had remission of their lymphoma, as well. On the other hand, six control patients with splenic lymphoma without HCV infection did not respond to interferon treatment at all (12). It is therefore reasonable to screen for HCV infection in patients with splenic lymphoma as well as other low grade NHL.
HCV infection has been associated with several eye disorders. Keratoconjunctivitis sicca (dry eyes) is part of SS. Mooren’s ulcer is a rapidly progressive, painful ulceration of the cornea. The diagnosis is made by exclusion of other causes of corneal ulcer. A few cases of Mooren’s ulcer and HCV infection have been reported. In at least two of these patients, the ulcers did not respond to steroid and cyclosporine drops but did respond to interferon alfa-2b (13). Damage to the retina of the eye (retinopathy, which includes cotton-wool spot formation, hemorrhages and arteriolar occlusion) is a frequent complication of interferon therapy. Fortunately, the retinopathy is usually reversible once treatment is stopped and sometimes even improves despite continuation of therapy. However, patients receiving interferon who experience visual symptoms should hold treatment and undergo careful eye examinations by eye specialists.
In summary, extrahepatic manifestations of chronic hepatitis C are varied and involve a number of organ systems. Physicians and patients should be aware of these signs and symptoms, and testing for HCV should be done in patients who manifest these. This may lead to early diagnosis and successful treatment of chronic hepatitis C infection.
1) Ferri C, Zignego AL, Pileri SA. Cryoglobulins. J Clin Pathol. 2002; 55:4-13.
2) Authier FJ, Pawlotsky JM, Viard JP, Guillevin L, Degos JD, Gherardi RK. High incidence of hepatitis C virus infection in patients with cryoglobulinemic neuropathy. Ann Neurol 1993;34:749–750 (Abstract).
3) D. H. McKee, A. C. Young, A. Alonso-Dominguez, J. I. Tembl, J. M. Ferrer, M. T. Sevilla, A. Lago, J. J. Vilchez, and F. Mayodomo Neurologic complications associated with hepatitis C virus infection Neurology2000; 55: 459 - 459.
4) Lacaille F, Zylberberg H, Hagege H,et al,. Hepatitis C associated with Guillain-Barre syndrome. Liver 1998 ;18:49(Abstract)
5) John M. Levey, Bjorn Bjornsson, Barbara Banner, Mary Kuhns, Rajwant Malhotra, Nancy Whitman, Paul L. Romain, Thomas G. Cropley, and Herbert L. Bonkovsky, Cryoglobulinemia in chronic hepatitis C infection: A clinico-pathological analysis of 10 cases and review of recent literature. Medicine (Baltimore) 73: 53-67, 1994.
6) Johnson RJ, Gretch DR, Yamabe H, et al. Membranoproliferative glomerulonephritis associated with hepatitis C virus infection. N Engl J Med 1993; 328: 465-470
7) Stehman-Breen C, Alpers CE, Couser WG, Willson R, Johnson RJ. Hepatitis C virus associated membranous glomerulonephritis. Clin Nephrol 1995; 44:141-7 .
8) Herbert L. Bonkovsky and Savant Mehta. Hepatitis C: a review and update. Journal of the American Academy of Dermatology 44: 159-179, 2001
9) El-Serag HB, Hampel H, Yeh C, Rabeneck L. Extrahepatic manifestations of hepatitis C among United States male veterans. Hepatology 2002;36:1439-45.
10) Kessel A, Rosner I, Zuckerman E, et al., Use of antikeratin antibodies to distinguish between rheumatoid arthritis and polyarthritis associated with hepatitis C infection. J Rheumatol 2000;27:610-2.
11) Zuckerman E, Yeshurun D, Rosner I. Management of hepatitis C virus-related arthritis. BioDrugs 2001; 15:573-84.
12) Hermine O, Lefrere F, Bronowicki JP,et al., Regression of splenic lymphoma with villous lymphocytes after treatment of hepatitis C virus infection.
N Engl J Med 2002; 347:89-94.
13) Wilson SE, Lee WM, Murakami C et al., Mooren type hepatitis C virus associated corneal ulceration. Ophthalmology 1994, 101: 736-745. (Abstract)
you sound like me, the golf ball clots are a tip ff to too much progesterne, the joint pain to inflammation possibly genetic...(grandma and ma did not have HCv so their arch to artritis would be later.
the plycystic ovary suggest the pituitary could be low, as that will cause ovarian cysts, AND inflammation and not enough thyroid or adrenal response to inflammation.
since many HCV people are extremely low on HGH you should get your IGF-1 tested as well as a full RA panel/Elisa etc. done.
JUst because you are done with treatment desn't mean your autoimmune system returns to normal, if it ever was.
Just because they may detect RA or Lupus will not mean the pituitary dysfunction....AKA now repair signal to joints and tissue each night, could not be at the root of it.
You could also have high iron which cause joint and muscle pain...did they monitor you for this during or since tx.??
I don't have any experience with the Rheumatoid factor, but I do have experience of post treatment soreness (worse during the winter than during our 9 mon. of the year warm FL weather). So, I'm thinking you live in Alaska, correct? Not that where you live would have any bearing on it, just curious about the cold coming into play. Also, I had a hysterectomy at 30 (but ovaries were left in) then, at approximately age 39, they had to go back in and take the ovaries and tubes. Prior to the 2nd surgery, my ovaries had shut down (treatment related??) I do not know. By the time, I'd had a couple of treatments under my belt already. I take Estrogen only (a plant based gel) and it does help to a certain degree. I tried to stop taking it for awhile and I had a lot more pain. So, with the blessing of both my Gastroenterologist and my Gynecologist, I am continuing on with the Estrogen only gel until I hit age 50 (a normal menopausal age), at which time, I will try to go to some type of natural hormone replacement that is a prescription that the doctor's office can prescribe. Anyway, I just wanted to share my story with you. I have no idea if it will help any or not. Susan
Thank you Susan... Sigh... I wish I could say this was just common soreness... But honestly - I feel like I'm 100 already and I'm only 41. I attributed it to HCV and just the INF and then my hysterectomy... But it's May... and it's getting progressively worse on a weekly basis.
But thank you so much for letting me know - I'll sincerely keep it in mind.
The doctor just called. They're going to try and get me set up with the Rheumatologist as soon as possible.
He said he has NEVER seen an Rheumatoid Factor so high --- and with the Ana-Choice, C-Reactive not representing he has concerns for other issues.
I'm so sorry that you're in pain. Really. I also take Ultram (Tramadol) when I need to for pain. I can't take NSAIDS, so if it's too much soreness for Tylenol that I take the Ultram.
I hope you feel better soon and that they're able to get to the bottom of it for you.
That is a lot for one person top have had to go through. I would definitely go see someone else about this if possible. It is tough when you deal with a doctor who is just not knowledgeable, even if he or she is a great person. I guess it is probably tough to find a good hep doctor in Alaska. But it sure must be beautiful up there!
I have to hand it to you as I read your posts often, despite it all you sure do manage to stay positive. My hat is off to you. I have always been the eternal optimist but lately i am getting cynical in my old age LOL.
I don't know about the RA stuff but that sure is a lot of *'s there!
Hey gal - sorry I've been out of touch - bad body week - guess you are experiencing a bit of my life eh?
My RA started 14 yrs ago with fever - body pain - then localized pain in the larger joints - shoulders, elbows etc. At several points could not walk - took 4 months to dx with regular docs - you need a GOOD Rumy - and make sure they are agressive - no wosey advil - you need to stop this in it's tracks (if you have it) or you could end up like I did 15 sugeries later.
RA is not a death sentence - these days the biogenetics like I'm on (Enbrel) are fabulous, very little sides and hardly any degeneration - but it is kind of like hearing you have HCV...a real blow.
But before we go there let me paste this for you about the RA factor (mine is 80+ usually)
Rheumatoid factors are antibodies directed against the Fc portion of immunoglobulin G (IgG). A positive test for rheumatoid factor is by no means pathognomonic of rheumatoid arthritis, but is present in 70 to 90% of patients with the disease. The titer does not correlate with the activity of disease, but patients with a high titer rheumatoid factor are more likely to have erosive joint disease, extra-articular manifestations, and greater functional disability. In contrast, generally, rheumatoid factor negative patients exhibit a milder disease course. Rheumatoid factors are also detectable in non-rheumatoid patients who have chronic antigenic stimulation, such as prolonged infection (bacterial endocarditis, tuberculosis, cytomegalovirus, human immunodeficiency virus (HIV), collagen vascular disease, or dysproteinemia).
They will also get sed rate. This is a good link for you to get general ifno and if you are dx with it let me know and we can chat.
Sorry you feel bad - (our bios are vey sililar - did you see mine on my profile?)
Yep - I got it during a complete blood transfusion when I was 16. Been sick my whole life - one thing after another - constantly in the hospital with things they couldn't explain (they thought lupus, meningitis, graves, limes, etc), I've had all kinds of rashes, shingles, autoimmune problems, RA, Ostio, IBS, Scoliosis, Migrains, lost 1/3 of my large intestine - Ischimic Colitis, got autoimune bladder disease (Interstitial cystitis) Have sorjens (sp) hyatal hernia, mega cysts on ovaries and uterous (still on the pill to ease the cramps), Have major TMJ, very bad tinnitis, Colitis, mega cardiac problems and various metalic parts evenly distributed throughout my body - titanium rods in neck and feet - screws, bolts, wire...I'm real fun at the airport - ha...but hey up until this darn tx I was still riding and jumping my horses...(after 15 surgeries...but whose counting...actually it's 16 - just got one on my index finger - very apropriate for tx - looks like I'm flipping people off.)
Funny thing - my liver levels have been elevated for years and they always blammed it on the RA meds - didn't find out about HCV until this Jan when they had to test me for a new med. You'd think the fact that I was so sick that I had to stop work a year ago would of been a good indication something was up...They have been practicing medicine on me for a long time..
I thought ANA negative was a good thing! I was tested for Lupus once and my ANA was negative. I thought that meant you didn't have any serious auto immune problems. I have to confess that I know nothi9ng about this area though.
I somehow missed this thread. I guess I am distracted with my own problems, so I apologize for that. I hope you feel better soon.
You have shown so much energy lately that I though you were feeling great.
The Rhematoid Factor being so high --- with no signs of arthritis is what is concerning them the most.
For me - my concern is pain - and my quality of life --- I'm getting tired of feeling like I have broken bones when I get up in the morning --- and feeling like I got ran over by a Mack Truck through the whole day.
The concern methinks is the possibility of Lupus. Personally - I think it's Fibro with maybe some degeneration of the tendons, cartilage, and muscles...
But -then ya never know --- I am assuming they're going to run me through a diluge of tests on the 21st/22nd. I figure then I'll have a better idea...
But while there is the commentary that INF usage can cause AIs in the Patient and Doctor Lit profiles --- There are no freaking articles or studies that I can find that document that. Nothing that shows the mechanism... Nothing that shows anything I can show him...
There is a good article somewhere which I may or may not be able to find again, but at any rate, (its a study actually) if memory serves it shows that 20% of treaters get an auto-immune disease such as RA during the course of treatment involving interferon. (actually its 19. something I think, but close enough). Of course, this article was handily saved on the computer that I had when I first started treating. And... I broke that laptop and the computer right after it by falliomg asleep using it and having it slide off my lap onto the hardwood floor. Thirty times. Or more. Per computer. Also, there is research with hepc in general causing RA in particular, as well as some other auto immune issues.
The MOST interesting thing about the article was that a positive or megative ANA going INTO the interferon tx had NO PREDICTIVE VALUE whatsoever on who would or would not gain a tx related auto immune issue, again, usually RA. And when I say gain, I do mean that as I recall, it showed that you come out of tx WITH the new autoimmune issue. Interferon being such an adorable system friendly sort of drug and all...
I have tx related RA and I'm also trying to find a rheumatologist. During tx, it was SO severe I couldn't move without the heavy pain meds for the first four or so days after each shot, but the pain levels are getting better now since I've been off the shots for about five weeks now and I'll be working down off of the meds I'm on now until I get to a level that keeps me in good pain stasis. The addition of high levels (300mg 2x daily) of lyrica really helped/helps with the pain in my hips, knees and the tops of my ankles - which used to literally leave me almost screaming sometimes even WITH morphine, but for whatever reason it doesn't seem to do much for my wrists and fingers.
My personal opinion (based just on conjecture) is that for acutes like me, immune issues after tx are really more likely to be due to tx alone given the short amount of time we have the virus, whereas its a more complicated nut to crack when you have had hepc working in your body for several years, and then have had interferon on top of that.
Although the pain specialist I see has more a view of, "It doesn't really matter why you're in pain if you're hurting, it just matters to establish adequate pain relief." Personally, I'm a lot more controlling than that and I like to know they why's and wherefores out of some misguided (probably) impression that I can control the situation better or come up with other routes of cure if I know the etiology.
OK - so the RA could possibly still be in existence without the ANA... Or just about a zillion other things. Sigh... don't you just wish they had a test that could go ___ YUP____ this is what you gots... you gots it toots...
Instead of all this malarky jumping through hoops, flying, hotel staying stuff?
There is PDF that sometimes launches @ http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Extrahepatic.pdf
If not google extrahepatic manifestations in HCV and pick the second on the list - just the basics but good general info - there is more info there as well on the adjoining links.
Let me know how it goes - I'm having a bit of a rough time the past few days with chest pain and shortness of breath when standing for any time at all - may have a drop going on - better get in for a test - darn.
I took your advice (and everyone elses...) Got the lab -Hgb was not to bad (12) - seems dehydration may be the biggest culprit - I think I have lost track of drinking - need to mark the bottles I guess. He also thinks we may have to lower the Peg just a bit. He thinks the Enbrel (Biogenetic TNF blocker for RA) that I am taking is acting like a booster shot - so I am flat out after it on Wed...and Sun from the Peg....some of this is continued on Medimoms thread...http://www.medhelp.org/posts/show/513131
Mega huglets back to ya - funny the only time I feel barely OK is at midnight - whats with that?
Because it's the time of night that no one needs anything from you - and you finally settle down and stop being stressed - life becomes easier --- for just a few moments... And something about that witching hour... You've finally gotten used to all of the pain --- that it doesn't matter at this point... LOL!
Hugs again - and hope everything is gonna go better for you - good thing you gots the tests lady - it's a really good idea to keep on top of everything.
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