Newbie Julia here

[Julia C]

Hello everyone! I just found your site - My husband was diagnosed with HCV in 1996- he's a FDNY paramedic and highly symptomatic, gone to Chronic and refuses any medication. He's been doing pretty well but his bone loss is getting worse, he's losing his teeth and he's only 48! Any suggestions on how to prevent that would be greatly appreciated! He eats well, of course no alcohol but periodic cigars (I know, I know!) I just wanted to say hey and thanks, I need the support!! Best
Julia

[cuteus]

thanks for researching further, learning new things is why we are here.

[jonihs]

I ruined one of my syringes,bent it pulling the cap off, and my GP gave me some free of charge. I would explain the cost factor(they get them much cheaper) and see if he would do the same for you,
  Julie When I first started reading this forum (7 mos.ago) there were a couple people whose teeth loosened DURING tx. but they tightened back up after. I agree with the others, see a doctor. I know all about Irish stubborness (my maiden name is Mahoney)but there are ways. Threatening no sex, supper,laundry etc,   Good luck and God Bless   Joni

[jonihs]

I ruined one of my syringes,bent it pulling the cap off, and my GP gave me some free of charge. I would explain the cost factor(they get them much cheaper) and see if he would do the same for you,
  Julie When I first started reading this forum (7 mos.ago) there were a couple people whose teeth loosened DURING tx. but they tightened back up after. I agree with the others, see a doctor. I know all about Irish stubborness (my maiden name is Mahoney)but there are ways. Threatening no sex, supper,laundry etc,   Good luck and God Bless   Joni

[Julia C]

I hope I didn't get everyone started on this tooth thing now, but as my husband is only 49 and other than HCV always been in perfect health, the dental issue seemed glaringly obvious when the dentists said there was a connection. He DOES drink at least 1/2 gallon of whole milk a day too, so lack of calcium is not the issue- bone loss IS. He's still the dreamiest man ever, though. *SWOON* J

[CARUU]

Actually, now that you mention it, I've had several teeth worked on for cracks and the dentist seems to be at a loss of how to explain it.  They always ask if I chew on ice cubes (NO).  I have a dental appt. Tuesday.  I'll ask. caruu

[cuteus]

you know guys, I kind  of think there might be something to the teeth thing.  My symptoms became very apparent after my last pregnancy in 1989. pains, aches, fatigue and tons of cavities.  i had a spit test to determined what was causing the problem, to no avail. they fracture easily too. there might be something to the hcv theory, it would explain my case.

[ringading]

YOUR SO VERY WELCOME DARLIN.......

NOW, THAT WILL BE $19.95...YOU MAY USE EITHER VISA OR MASTERCARD!!!!!!!

JUST KIDDINNGGGGG!!!!!

DINGY

[Julia C]

Thank you so much, everyone, from the bottom of my jaded little heart- What a great bunch you all are, i'm happy to know you! Thanks for that doctor in Philly, this weekend we'll be reviewing our options and it's good to have all of your support. THANK YOU. THANK YOU. THANK YOU. XOXOXOX
Julia

[layla]

Thanks for your thoughts on the previous post. I hope you are doing well. It is good to have you back. I too had braces as an adult. I hope your as happy with your results as I have been. What a difference for me. I had them off about 5 years ago and still wear the bottom inside semipermanent retained. It keeps the teeth in place and I am use to it now. LL

[PhilaGuy]

Good news that everyone's little push worked!  Isn't everyone on here great?  

Anyway, I've been recently diagnosed and will be going to - what I hear - is one of the best hepatologists in Philadelphia.  I know it's about an hour and a half from Dover (my mom lives in Millsboro - slower, lower Delaware!), but you might want to consider it.  I hear he's great and has a great bedside manner to boot.  His name is Kenneth Rothstein, and he's with Einstein:  
http://www.einstein.edu/e3front.dll?durki=7716

You may actually be closer to Baltimore, and I'm sure Hopkins has some world-class folks.  Who knows, there MAY be some in Dover, or at least Wilmington.  Good luck to you both!

[ringading]

morning honey....OH SWEETIE.....3a and 3b ARE THE EASIEST TO TREAT WITH THE HIGHEST POSSIBLE SUCESS RATES..
....86% to 98%.....AND THE TREATMENT IS ONLY FOR 24 WEEKS AS OPPOSSED TO 48 WEEKS FOR OTHER GENEOTYPES!!!!!!!

good girl for listening to GREAT ADVICE and taking action....where exactly...city...are you at..?..remeber i'm canadian so the abreviations mean little to me haha...

OH I'M SOOOO RELIEVED TO HEAR THIS FROM YOU....IT REALLY HAD ME CONCERNED YESTERDAY....
KIMMY

[Julia C]

We sat down and had a "chat" this morning, he has agreed to go to another doctor- (Only a little arm twisting, he knows how upset I am over this) And we're not in NY anymore, we're in De, near Dover. His good friend is a GP here and I've got a call in to him for help on getting a real doctor. As for the bone loss/losing teeth issue, he drinks 1/2 gallon of milk daily and takes excellent care of his teeth, they have been giving him trouble since 1995 - Thanks for the push, I needed ammo to go at him with. As for the doctors who said he should not go on int., as I understood it his type (3A?) didn't respond well to interferon and as his enzymes were only slightly elevated he should see how well he could do without treatment. Remember, this was 1998, when they said only 12% of patients would favorably respond to treatment. He really hasn't been incredibly ILL, just highly fatigued. His levels are about the same, his stress level has decreased with moving out of NYC and retiring from FDNY. But I will let you know how we fare, thank you for your push. I appreciate all your responses SO much!! Julia

[oldhippiechick67]

Never mind, I read your posts down the list and got my ? answered.  Hope and pray things go okay for you!  You are very brave and you have a great attitude!  Hugs to you, my friend!  OHC

[oldhippiechick67]

Dallas Star - Bout time you popped in!  How are you doing?  What about the leukemia ??
Befudd & others - really cool, cute icons/animations you learned how to add!  I'm jealous...keep it up if you can, very entertaining.  

I have a "OMG" story to tell ya...just a little one.  I went to reorder my mail order meds, the Neupogen, the Procrit & my riba, to find the co-pay has doubled...which is somewhat painful, but still affordable.  The tb syringes my doc ordered to go with the procrit however are not on their formulary/preferred drug list...whatever!  So they wanted to charge me $60 for 4 or 5 syringes!! I almost told um where to shove those syringes!  But no, I didnt.  I thought it was a computer glich, so I called and the lady told me "No, that's how much they are"  OH for **** sakes.  I am freaked out that I was charged 30 bucks for the 4 or 5 syringes  last month!!  They also sent me my daughters meds which I called and cancelled on 12-29 (after realizing she cant tolerate them while using the free samples), as they werent spose to be sent out till the 12th of Jan, and they sent um any way (on the 2nd and said I had to pay the copay, ($30) even though the seal on the bottle isnt broken etc.  Pretty much stinks eh?  Well thats my gripe for the day.  OHC

[whybabe]

I agree, get a new doc.  Meds do work!  I cleared the virus and life is good post treatment.  Yes, Irishmen are stuborn, but his life choices affect you (& your kids??)too.  Tell him he owes it to you to get and stay well.  The meds now days work alot better with less side effects.  God bless and good luck.
Deb

[lackalustre]

i have read in the book "The Hepatitis C survivors Guide" written by a dr.  that hepc  does cause brittle bones.  the advice above is good to take for anyone like getting enough calcium, weight bearing exercises, etc...
   i plan to have a bone density test after tx. now. those of us women over 50 should do that anyway.  also  i had some real iffy teeth. and in 1998 after an acute flare up of the hepc, (was very sick)  i had several molars abcess at the same time.  not fun.

[GALLIUM]

you might also have his parathyroid checked, i have a hyperactive parathyroid and it causes calcium loss (ended up with false teeth because of it, teeth just kept shattering like crystal) my oncologist checked and when my plt's count was at 90 told me to get them pulled and made arangements for ffp's if needed after the surgery. i take a synthetic vitamine d for the thyroid problem and it is maintaing normal lvl's now but most of the damage has been done to my bones.

[ringading]

just occured to me that that study you quoted was dealing with an average age group of 54 years old....it is then not so surprising  that there may be some degeneration or bone loss beginning to occur.. as we age...now if this SAME study was done with a group of average age 25-or 30 years old...it may  give it a bit more weight....but ask anyone here, many many knowledgable people all dealing with hep, if they have this problem or have ever heard of this being associated with hep c....i think i as well as many many others would be very surprised by this....okay....no more, i'm starting to obsess with you struggle now...good luck...AND PLEASE SEE A NEW SPECIALIST
k

[ringading]

i really do not think you are getting acurate information AT ALL.....please try and locate another doctor near you, sorry, i've spent an hour and ahalf searching for stuff for you and my brain is just NOT CO-operating at all today....

i have been reshearching this extensively for a year and a half and i have NEVER EVER come across anything you are suggesting..(with the exception of rhumetoid arthritis effecting about 2%-5% i believe of those of us with hep c, meaning R factor in blood work is highly elevated ).i can only sumise the study you are looking at AND putting far too much stock in....is for very very very rare cases, if at all....THERE IS FAR TOO MUCH MIS-INFORMATION OUT THERE....DO NOT CAVE INTO THIS ****!!!!IT IS FEAR MONGLING!! initially from some B.S. i read i thought there was no hope and that i was going to die...i made funeral arrangements, updated my will for my daughter etc etc.....ALL ****!!!..i am now 1/3 of the way through treatment and have amazing odds at totsally completely clearing this....SO DOES YOUR HUSBAND....is this not important enough to you to further investigate? it sounds like you too are giving in and getting totally discouraged thinking that there is no hope...WHEN THAT IS JUST NOT THE CASE....so my recommendations to you are as follows...
1...get out the phone book, or search out a SPECIALIST...i STRESS that specialist part....most GPs know little or nothing about hep!
2..make an appointment and YOU GO even if your husband won't and YOU ask the questions....
3....keep checking in here and reading  and asking questions also, hook your husband up with this site, after all..this is about him...
4...scroll down and read all the sucess stories...THERE ARE LOTS..ODDLES....far more people clear this than don't.....
good luck, and please find him a NEW DOCTOR CAUSE ANY DOCTOR THAT HAS THE TOTAL LACK OF INSIGHT AS TO SUGGEST THERE IS NO POINT TO TREAT THIS IS FULL OF IT...AND NEEDS TO RETIRE!!!

[ts2010]

Julia,

I briefly looked over the website that you mentioned.  There is a lot of information there but I didn't see anything specifically connecting HCV and bone loss.  Can you be more specific as to where I could find a study done on this subject?

Thanks,
TS

[PhilaGuy]

Oh man, the first thing I thoght of when I read this was: "And I thought the teeth were the only part of the body that was left unaffected by this thing!".  Eeesh, it's always something!

[nurse12hr]

It would appear that the study is talking about patients with ESLD, not just persons infected with hepC.

It MUST not be terribly prevalent amongst the hepC population in general, or there would be more attention and monitoring given to it.  

Perhaps Erin (GI. PA) will offer an opinion.  

My husband has had the virus 20+ years, far as I know has no bone loss and has great teeth.

Again, to me it sounds like the study is talking about terribly ill patients.

Good luck with the hubby---my husband was successfully treated and the virus eradicated.

[Julia C]

Sorry gang but:
Persons with HCV also have bone loss. And several comprehensive articles on this can be found by using the NATAP website search engine or trying the Lipodystrophy section on the site. At DDW researchers from the Mayo Clinic presented an oral talk about the prevalence of bone loss in HCV. Below is a description of their study. HCV therapy that cleared HCV viral load may reverse the bone loss issue because the problem may be due to the presence of virus. Persons coinfected with HIV and HCV face a potential double hit on bone loss. It is particularly important to consider improving diet, calcium supplementation, weight bearing exercise, and reducing cofactors that may increase risk for bone loss. The articles on the NATAP website discuss extensively all the potential cofactors which include smoking cigarettes, coritcosteroids (from PCP prophylaxis) and a number of others.  
This study looked at 207 patients transplanted at the Mayo Clinic. Follow-up was for as long as 12 months. There were 68 patients with HCV; they were on average 54 years of age, 49% male. 11% were using calcium and 5% Vitamin D. A percentage of them were smokers. Before transplant 37% had osteopenia and 28% osteoporosis. After 12 months follow-up about the same percentage had osteoporosis. The fracture rate was 8.8% before transplant and 16% 12 months after transplant. 80% of the fractures were spinal. The authors concluded 66% of patients with End Stage Liver Disease related to HCV have osteopenic bone disease prior to liver transplant.
I know I checked this out a few years ago and it appears to be well documented.  

[L.I.girl]

I had and I repeat had Hep C. Finished treatment in May and passed my 6 month blood test just before X-Mas. I don't have any problems with my teeth. I will ask my Hep Doctor on my next visit about that but that is not until March. I was never told Hep c effects your teath.

It is very scary to look at all of the side effects of these drugs and decide to do it anyway but I for one am glad I did. You have to at least try!!!! One year of your life is worth the many years of wonder and possible liver damage if you don't. I was a 1b. I worked everyday through treatment. I had to cut my hours back somewhat but really, I still worked a lot. I was run down towards the end of the treatment but managed to get through most of it OK.

Hang in there. Try to get cured!!! It certainly can't hurt your liver to try.

Best
Andrea