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217229 tn?1192762404

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
38 Responses
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217229 tn?1192762404
Ayuh - UCKY....

NAh - don't think that there is any chance of that ---- unless it's something I could get in Alaska. LOL!

Meki
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Avatar universal
you might want to have this test run also.

http://arthritis.webmd.com/tc/lyme-disease-symptoms

jasper
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217229 tn?1192762404
I'm just bumping this up a bit to see if HR is around...

With maybe some ideas?

Meki
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217229 tn?1192762404
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.

Meki
Helpful - 0
394687 tn?1290920840
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?
Helpful - 0
217229 tn?1192762404
Thank you so very much for taking the time to put that in there --- i know you're feeling awful --- So I sincerely appreciate the effort.

YOU BETTER GO IN.

Breathing and chest pain may or may not be related - it certainly is a bad side effect or even possibly one that is VERY BAD...

Don't wait Mikki - I need you to be around for my hopes of getting people organized and getting them together and believing that this world can end HCV.

Hugs babe!

Meki
Helpful - 0
394687 tn?1290920840
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.
Helpful - 0
264121 tn?1313029456
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... ? ;)
Helpful - 0
217229 tn?1192762404
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
Helpful - 0
264121 tn?1313029456
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.
Helpful - 0
217229 tn?1192762404
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

Helpful - 0
217229 tn?1192762404
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!
Helpful - 0
220090 tn?1379167187
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.
Eric
Helpful - 0
217229 tn?1192762404
Sheesh --- I'm humbled.

OMG - and here I was worried... LOL!

Dang - You could be a doctor - with as much info as you've got stored.

I'm thinking HCV is the culprit to a majority of problems for a lot of folks who don't know.

I'm just trying to figure out if The HCV or the Interferon is the culprit for me.

Sheesh - it's like the snake that ate the tail.

LMAO!

Anyhow --- Many hugs - and many thank yous.

Meki
Helpful - 0
394687 tn?1290920840
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..
Helpful - 0
217229 tn?1192762404
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?

Helpful - 0
394687 tn?1290920840
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
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217229 tn?1192762404
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
Helpful - 0
149675 tn?1416673133
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!
Helpful - 0
Avatar universal
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
Helpful - 0
217229 tn?1192762404
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.

Greeeeeeeeeeeeeeeaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaat.

Now this means he hasn't seen a lot of Rheumatoid Factors or My count is off the freaking charts.

LOL! Go figure.

OK - I'm going to sit here and just freak out a little bit... Sigh.

Anyone?

Helpful - 0
Avatar universal
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
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217229 tn?1192762404
OK - I'm going to put out my Quest Diagnostics Results...

Anyone - feel free to comment on these --- I'd like some opinons - or ideas...

I'll note those items that are OUT OF RANGE with *** and ALL CAPS


Lipid Panel Triglycerides                   130
Cholesterol, Total                             178
HDL CHOLESTEROL                        38L****
LDL Cholesterol                                114

Chol/DHLC Ratio                               4.7

Comprehensive Metabolic panel w/ efgr glucose      96
UREA Nitorgen (Bun)                                           16
Creatinine                                                            0.72
eGFR Non-Afr American                                        >60
eGFR African American                                         >60
Bun Creatinine ratio                                               22
Sodium                                                                141
Potassium                                                            4.8
Chloride                                                               106
Carbon Dioxide                                                      24
Calcium                  9.3
Protein Total           7.3
Albumin                  4.4
Globulin                  2.9
Albumin / Globulin ratio   1.5
Bilirubin, Total                 0.6
Alkaline Phosphatase      71
AST                               17
ALT                                22

HEPATIC FUNCTION PANEL
Protein, Total                   7.3
Albumin                           4.4
Globulin                           2.9
Albumin/Globulin Ratio      1.5
Bilirubin Total                    0.6

Bilirubin, Direct             0.1
Bilirubin, Indirect           0.5
Alkaline Phosphatase    71
AST                             17
ALT                              22


CBC (Include Diff/PLT)
White Blood Cell Count               6.8
RED BLOOD CELL COUNT         5.15 H******
HEMOGLOBIN                           15.6 H*****
HEMATOCRIT                             45.3 H*****
Mcv             88.1
Mch            30.3
Mchc           34.4
Rdw             13.8
Platelet Count   199
Absolute Neutrophils 4964
Abs. Lymphocytes    1265
Abs. Monocytes        408
Abs. Eosinophils       150
Absolute Basophils    14
Neutrophils                73.0
Lymphocytes            18.6
Monocytes                6.0
Eosinophils               2.2
Basophils                  0.2

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

Mean Plasma Glucose                                      119




________________________________________________________


Ok - so I know that I'm VERY happy with my Hepatic stuff... Dunno about the Blood cells and stuff --- but they aren't that far off from high range normal.

But I'm concerned about the Rheumatoid Factor.

I do understand that chronic Hep can cause some raise --- but that's pretty freaking high --- isn't it?

Ideas --- Am I right on the money with poss RA... Or some sort of muscular skeletal issues?

Doc hasn't discussed this with me yet - they just came in...

What other tests might you guys suggest?

Thanks - in advance for your help - thoughts and opinions.

Meki
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233616 tn?1312787196
oooooooooooooooooooooo sorry...my o key kept sticking, hpoe yu can read that..darn
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