HIV+HCV

[guitargal]

Hey Everyone,
I have not noticed a thread about co infected and the new treatments available.
I can't find a good forum anywhere.

The hcv forum on medscape is awesome but they do not talk about hiv.

any one know a good support site?

Thanks

[J.R.E.]

Hey Guitargal,

Until you get some responses by those that have been co-infected with HCV, this site has a great lesson on it, that may give you some answers:

Start Here : ( Make sure to check out the treatment News )

http://www.aidsmeds.com/articles/2678_9984.shtml


Ray

[AusShep]

Have you looked at the hep mag (tab at the top) forums?  They gave a coinfection board, but not a ton of posts.

http://forums.hepmag.com/index.php?board=21.0

[mecch]

guitargal

Hello - sorry to hear about the confection.

There are threads in Poz forums every now again, cause there are some people here with co-infections...  Did you used the search mechanism, bottom left?

Things are changing quickly now with the new treatments out this year.

My personal experience was that I leaned heavily on the information provided by my ID doctor (my HIV specialist) when he diagnosed my HVC infection.  He gave me a bit of the same advice my first HIV specialist gave me when I got diagnosed with HIV. That advice was to be careful learning online.  Not an advice against it, but just to look for very recent info and to be sure not to extrapolate too readily, from the many very serious, very horrible experiences one can find on support and info sites, to my own experience. 

I had a look at some HEP C support sites but eventually didn't dive in because I felt they didn't address my likely experience closely.  I felt like I didn't need much support. My ID said - "there will be drugs coming out next year (now this year) that are going to cure hep C, so if you need it then, we will do the treatment."  This was very reassuring. 

After that - I did this: no drinking, being kind to my liver and kidneys, a few periodic blood checks. And hope and optimism.

Do you have a quite active infection? Is your liver function declining or damaged?  How long with Hep C and what are the steps you are taking? 

[Ann]

Hi GuitarGirl - hehehe.... you've got me breaking the rules again, posting in the LTS forum. I feel like a naughty little girl!

AusShep already mentioned our sister site HepMag, and there is another very good site that I used to frequent back when I was still coinfected called hivandhepatitis.com If there's something worth knowing about coinfection, they'll have the skinny. There used to be a section there where you could ask a doctor questions, but I'm not sure if they still have it.



May I please move this thread into the Living section of these forums? We have several co-infected members and if my shattered memory serves, most of them aren't LTS and aren't permitted to post in this section. (~shoots Mecch a meaningful glare look~) Many of our members who aren't permitted to post here never even open the forum, just like many men never bother to open the Women's forum.

We did try out a Hiv/Hepatitis Coinfection forum here several years ago, but there was nothing but tumbleweeds blowing through it so we took it down again.

Let me know if you agree with moving your thread. Thanks!

[guitargal]

thanks, i have to be brief as i feel like crap with a sinus/migraine thing. sure move to the living section ann and i did go to the hep mag..thanks for allthe help and good info and mecch that was good advice..

my hep c is ok. vl low compared to others and grade 2 fibrosis.. so waiting for the treatments..
i have a kidney biopsy this week ugh..then we will see where i am at.
hiv good as all ud <40  cd's in the 600 -700 range..

[Ann]

Hi Gal. I can empathise - I've had a migraine thing going on for the past 36 hours or so and it sucks. Need to get a sumatriptan refill methinks.

I think grade 2 was about where I was when I started hcv treatment. My memory is hazy concerning my exact hcv numbers but I do know my biopsy score was pretty much right smack-dab in the middle of the scale. I haven't had a biopsy post-treatment, but the liver is a very forgiving organ and I treat mine well overall, so hopefully it's repaired itself over the past eleven years.

Good luck with the kidney biopsy this week and please let us know how it goes. I understand you probably won't have any actual results this week, but come and have a vent about the procedure if you feel like it.


I've moved the thread - hopefully some of our coinfectees (is that a word?) will chime in.

Ann

[guitargal]

thanks ann. very informative..
.yes waiting for the biopsy results. the kidney sonogram was good. size normal, no stones.
the biopsy went ok. after the long wait that day!  and i was getting all panic attack. !!! 

Thursday...arrive at 10 scheduled for 11.. didn't get my iv  in until 12:15 and at 1pm  i rang the nurse and was crying. asking what was happening..she gave me some valium and they did it at 2..man..i thought out patient was separate from other hospital stuff, NOT. there were emergencies and they got backed up.. didn't hurt till the next day. told me not to drive for a few days or lift anything…
then dumb me a few days later i did some chores and it hurt. .(my chronic muscle bone joint pain   the  bursitis on my sits bone  has been really bas as well) (weavers bottom) from being so in active and in bed and chairs a lot over the past few years keeps aggravating it and sometimes i cant even sit! ugh..

so then  tuesday i drove and did primary dr. appnt and pharmacy ( he's still suspecting the kidney thing is HCV related.. yet the hiv meds…ove the years.. and he put me on Stribild last august and that is bad for kidneys!  )  had to take hubbys truck and the bouncing did me in..  so resting again and  hope it is all ok .

will get the results sent to  my ID doc and hopefully get the HCV treatment started! 
my last liver tests were like you in the middle.. so cross my fingers that being off Stribild now for 2 months -- tenofovir and cobistat that is bad for kidneys

taking abacavir, tivicay and adjusted dose 3tc 150 mg instead of 300..now i know to watch what meds are given!
just did VL and other tests so will see all results next week…

can't help but think that the doc i was seeing for 15 years messed up,  missed the kidney issue,  (fired him after he took me off hiv meds "to see if my leg pain would stop)  and i got really sick and in more pain waiting for second opinion)   never ordered urine tests, really messed em up over the past few years on meds that were not dosage adjusted. for kidney..
Nephrilogist said looks like the reduced kidney function started 5 - 6 years ago!

no one told  me!  makes me mad.

must go on and try to clear HCV as my hiv is under control..

so frustrating to all of a sudden get this pain syndrome and the fatigue and lost all the things i used to do in life.  went from doc to doc to find answers.. over 2 years and no one knows..  only thing we can hope for is  if i clear the hcv it will stop the kidney damage and get more energy and less pain.

never knew that HCV can attack your kidneys! why do the docs not educate us? always just ," oh your liver is doing well, ALT and AST are just a little high. bili good, . everything else looks good…VL UD, cd's 700.. well.. apparently NOT..

so i have learned a lot and that is good. hate to have to search the net and read all this stuff all the time but i have to know what is happening to my body. so i can alter my diet, or meditate on my body healing and working in sync..meds to stay away from…etc..

thanks go Al Gore invented the internet! h a  ha  being in  a very rural area i would learn nothing! and there is no support locally..
thanks people

we can do this!

[Ann]

The quote before is from your post in Zach's Who in hope believed against hope thread over in the Insurance and Benefits section. I brought it over here to your thread so as to not hijack Zach's thread.

i get so upset that know one knows why this pain started out of the blue… IRIS! 

if i just exert my self a little, light cleaning cooking errands i can't move. bed, ice, baths heat pads..  perhaps the iris kicked in the hep c and that is causing all the inflammation… going to try to treat that next..

With what I know about coinfection, I'd say it's likely that your treatment interruption is more to blame than IRIS, although if you have been experiencing IRIS as well, it won't help matters.

I suspect your treatment interruption is to blame because the presence of hiv accelerates hcv progression. When your hiv suddenly became untreated, it may have started this process. 

I never had any symptoms of being hcv poz until I acquired my hiv infection. It started during my hiv seroconversion illness (my hcv pre-dated my hiv by about 15 years). Every joint and muscle in my body was in pain like I've never felt in my life before or since and sincerely hope to never experience again. I thought maybe I'd had rheumatic fever.

The joint and muscle pain continued afterwards, although not anywhere near as bad. My hips gave me the most grief - I'd end up walking like I'd had my first horse-ride ever and didn't get out of the saddle for days.

It wasn't only the weight of standing that made them hurt, I also couldn't lie on my side and even lying on my back made them ache. They ached no matter what position I was in really, but standing was the worst.

My muscles would also ache after work or other activities and at this point in my life, I was in my mid-30s and very physically fit. I'd been a commercial fisherbitchman for over five years and was doing a painting and decorating apprenticeship. It was very strange that I was suddenly having all these physical problems.

At least it was strange until I got the hiv diagnosis and started researching coinfection - then it all made perfect sense. By the time my hiv was diagnosed (four years after seroconversion), I was also experiencing a lot of brainfog and extreme fatigue. All of these problems (joint pain, brainfog and fatigue) are all classic hcv symptoms more so than early, untreated hiv symptoms.

My doctor confirmed what I thought after my research - having (untreated) hiv was accelerating my hcv and making me experience problems associated with chronic hcv infection.

so frustrating to all of a sudden get this pain syndrome and the fatigue and lost all the things i used to do in life. 

Yes, I understand your frustration completely. It sucks. The good news is that if you successfully treat the hcv, much of this should go away - you should at least see a big improvement within a few weeks/months after the treatment is done.

yes waiting for the biopsy results. the kidney sonogram was good. size normal, no stones.
the biopsy went ok. after the long wait that day!  and i was getting all panic attack. !!! 

I hate it when they keep you hanging around for an anxiety-provoking procedure, but I suppose it can't be helped sometimes. My liver biopsy took place a few hours after it was scheduled too, but I didn't get a valium! I had a really good book with me so the extra wait wasn't as nerve-wracking as it could have been.

Let us know when you get the biopsy results. Fingers crossed it's good news.

must go on and try to clear HCV as my hiv is under control..

YES!!! Good luck on that front. I hope you get one of the new, shorter, less side-effect laden treatments

Keep us posted.

Ann


PS - you may find this PDF on IRIS informative: http://www.projectinform.org/pdf/iris.pdf

[guitargal]

Thanks Ann.

will get this results on monday i hope.
thanks for clueing me in on your pain thing..as all the docs kept saying, it's not the HCv or it is or they don't know..  made me loose faith in them.. i did my best to get all kinds of opinions… did acupuncture , PT, CBT, meditation, distraction, anything to get it off my mind…still PTSD over how some docs treated, mistreated me…. slowly it is going away, the thoughts i have before appointments are pretty anxiety filled and up all night for days before.. but it is getting better as i realize that they really don't know and i just have to try to live and do the best i can. i sure miss all my hobbies, but i do a lot of reading! just re read robinson caruso and it was awesome.. as an adult!

hope to get the docs to start the hcv treatment asap…
wonder if they an do me with out the interferon…

but i have to stop being a baby about it, 12 weeks,, and buck up and just do it no matter what they choose  the sobroprovir sp? is the thing that is going to kick the hcv in the butt!

i think of all the children doing chemo and just have to not be so afraid..

lets hope i get the answers next week.

wouldn't it be fab if i cleared it and felt better!!!!! have a great weekend!

[guitargal]

hey Everyone!

 well good news the kidney biopsy showed no sign of hiv or hcv…

so it was all the meds all these years..some that shouldn't have been prescribed..urgh!!!!

and…tonight i started the  new hcv treatment….!!!!!!
sovaldi and olysio…

no interferon!!!

so side effects will be minimal…i feel so blessed that they were approved and insurance covered it!

wish me luck! clear the hCV and maybe i will feel better.

hiv VL  UD
cd4 999…!  what a number!

still in pain and bad fatigue..but hey..  hope the kidneys remain stable at the loss they are at.. if the doctors stop prescribing me meds that should not be initiated if ones creatinine is <50!!! Stribild..

best to you

[Ann]

and…tonight i started the  new hcv treatment….!!!!!!
sovaldi and olysio…

no interferon!!!

so side effects will be minimal…i feel so blessed that they were approved and insurance covered it!

Congratulations! That's FANTASTIC news!!!!

I hope the side-effects ARE minimal and that the treatment clears your hcv. Hopefully that will make a huge difference where your pain and fatigue are concerned. I know clearing it made a big difference for me and I'm hoping it does for you too.

Please keep us posted on how you get on with the hcv treatment. I'm really interested to hear about your experience with it.

GOOD LUCK!

Hugs,
Ann
xxx

[mikeyb39]

Hi GuitarGirl - hehehe.... you've got me breaking the rules again, posting in the LTS forum. I feel like a naughty little girl!

AusShep already mentioned our sister site HepMag, and there is another very good site that I used to frequent back when I was still coinfected called hivandhepatitis.com If there's something worth knowing about coinfection, they'll have the skinny. There used to be a section there where you could ask a doctor questions, but I'm not sure if they still have it.



May I please move this thread into the Living section of these forums? We have several co-infected members and if my shattered memory serves, most of them aren't LTS and aren't permitted to post in this section. (~shoots Mecch a meaningful glare look~) Many of our members who aren't permitted to post here never even open the forum, just like many men never bother to open the Women's forum.

We did try out a Hiv/Hepatitis Coinfection forum here several years ago, but there was nothing but tumbleweeds blowing through it so we took it down again.

Let me know if you agree with moving your thread. Thanks!

I have to say I look at the Women's forum from time to time, I like to know what is going on with both men and women with HIV and their struggles.  I notice a lot of differences in the way guys think and women think about different subjects.  I read the LTS forum as well because you can learn a lot

[Jeff G]

I have to say I look at the Women's forum from time to time, I like to know what is going on with both men and women with HIV and their struggles.  I notice a lot of differences in the way guys think and women think about different subjects.  I read the LTS forum as well because you can learn a lot

We use LTS code speak so you newbies wont catch onto our secret of longevity ... I shouldn't even be posting this really .

[Ann]

I have to say I look at the Women's forum from time to time, I like to know what is going on with both men and women with HIV and their struggles.  I notice a lot of differences in the way guys think and women think about different subjects.  I read the LTS forum as well because you can learn a lot

You can look, but don't touch!

We use LTS code speak so you newbies wont catch onto our secret of longevity ... I shouldn't even be posting this really .

I've cracked the LTS code and copies are available for an extortionate reasonable price. PM me for shipping and payment details.

[guitargal]

good news!

week 5 of the HCV meds. no side effects,  week  2 i suffered of severe depression

the 2 week labs showed UD VL!

more energy at times..still pain and neuropathy in feet and legs, neck arm pain..headach less..
only have about 4 hrs of being up and then have to lay down of a few hours..

not enough energy to do do much but at least i am cooking and eating more..

i think the loss of weight had a big effect on my muscles and joints.first the pain syndrome had me in bed for months..they would not give me pain meds…
 then i had c diff over a year ago and was 101 lbs.. now i am 107..just can't gain much as it is too hard to cook and eat when in pain a fatigue but that seems to be getting better as i do have pain meds now..

cheers!