Aa
HR Questions - If you have the time - INF TX or HCV leading to AI - Fibro/RA/Arth.
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...
Thank you for any and all of your time.
Meki
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...
Thank you for any and all of your time.
Meki
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.
Susan
I hope you feel better soon and that they're able to get to the bottom of it for you.
Susan
Geez girl,
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!
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!
OK - Flying over to Anchorage May 21st thru 23rd.
Guess I'm gonna be going through a Gamut of testing.
I'm developing an allergy to doctors.
I really have no idea on what the heck this will mean - but life is what it is....
LOL --- hey at least the HEP stuff came out AWESOME!
I'm VERY pleased with that...
Meki
Guess I'm gonna be going through a Gamut of testing.
I'm developing an allergy to doctors.
I really have no idea on what the heck this will mean - but life is what it is....
LOL --- hey at least the HEP stuff came out AWESOME!
I'm VERY pleased with that...
Meki
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.
http://www.hopkins-arthritis.org/arthritis-info/rheumatoid-arthritis/rheum_clin_pres.html#labo
Sorry you feel bad - (our bios are vey sililar - did you see mine on my profile?)
hugs...mikki
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.
http://www.hopkins-arthritis.org/arthritis-info/rheumatoid-arthritis/rheum_clin_pres.html#labo
Sorry you feel bad - (our bios are vey sililar - did you see mine on my profile?)
hugs...mikki
Thank You Mikki --- I'll know more in a couple of weeks... The hurry up and wait game again. LOL!
Mikki - do you think that you had HCV prior to RA?
Mikki - do you think that you had HCV prior to RA?
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..
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..
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