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
Hey There,
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.
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.
God my spelling sucks lately. But anyway. Yeah. I was talking to my mom about this today. She said, "You should just find a really good diagnostician." oxymoron... ? ;)
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?
Ala - thank you so much for taking the time.
Meki
Instead of all this malarky jumping through hoops, flying, hotel staying stuff?
Ala - thank you so much for taking the time.
Meki
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.
-------------------------------
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.
Oh and yeah --- I didn't understand all of that either...
_______________________________
Anachoice (TM) Screen w/ REFL to TITER IFA ANACHOICE --- NEGATIVE
RHEUMATOID FACTOR 92 H *********************
C-Reactive Protein 0.17
Hemoglobin A1c 2ith MPG Hemoglobin Alc 5.5
_____________________________________________
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...
Life is bound to get interesting... LOL!
Meki
_______________________________
Anachoice (TM) Screen w/ REFL to TITER IFA ANACHOICE --- NEGATIVE
RHEUMATOID FACTOR 92 H *********************
C-Reactive Protein 0.17
Hemoglobin A1c 2ith MPG Hemoglobin Alc 5.5
_____________________________________________
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...
Life is bound to get interesting... LOL!
Meki
Mentally for the first time in a VERY LONG time I feel FANTABULOUS!!!!
Physically however - ick. LOL!
When I feel bad - it often helps me to try to be more positive --- Laughter --- fun --- helping others keeps me positive.
I find sharing all those makes life good. Yanno?
Love ya Eric - and I'm always sending you GREAT Thoughts and Love to you and Mafalda!
Physically however - ick. LOL!
When I feel bad - it often helps me to try to be more positive --- Laughter --- fun --- helping others keeps me positive.
I find sharing all those makes life good. Yanno?
Love ya Eric - and I'm always sending you GREAT Thoughts and Love to you and Mafalda!
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