hepatitis cand Thalassemia (mediterranean animia) geno type 2B

This is my first time on this site and just found out I have HCV-geno 2B, but I also have thalassemia which is mediterranean animia minor.  It run's in familys and there is nothing to take for it.  Taking iron, etc. can harm me, so my question is if I go on treatment for HCV and my blood count drops will I be safe?  Also does any one know if it matters having this type of animia at all?  It's totally different from the reg. animia.  Any feed back would really help.


                      Thanks,
                          mister beagel bailey

[NYgirl]

I don't know anything about your version of anemia at all but I wanted to say...none of us on here can take any iron either.  It's a big no no for all HCV patients as the virus uses it to replicate and who needs more copies of the virus floating around???  Our goal is to kill every last one of them!  :)

I had anemia extremely badly and was put on Epogen - which worked wonders - but this is a regular, low hemoglobin type anemia.

I know one of the "smart" guys will be on soon but I wanted to say hi...I'm glad you found this website. It is a GREAT place and these people have such a huge WEALTH of information to share.

They have saved my life....I am sure of that.

Debby

[Mister beagle bailey]

Did you have animia before your treatment started?  I'm flying back to NY in a few weeks to see the doctor I've had up there.  I hope he will let me take the meds.  Thank you so much for the feed back.

              bob

[bobbyullc]

see you thursday.
bobby

[cuteus]

I have read that tx might be contraindicated in persons with anemia prior to treatment(tx). What is the level of damage you have? Many drs don't do biopsies on geno 2 and 3, have yours?
If your damage is not severe, waiting for drugs that do not cause anemia might be advisable. There was a new abstract on just this type of anemia at the latest AASLD conference. I'll see if I can find it.

[NYgirl]

I never had anemia before treatment.  Then my hemoglobin dropped drastically in about a week and I thought I was going to DIE I tell ya!  Once it got down to about 9 I really had a lot of trouble (from 14+).  It now stands at 11. MUCH better.

I sure hope that things work out for you.  Possibly you aren't that far a long and wouldn't need treatment yet at Cuteus said. THAT would sure be ideal for you.  I just don't know how anyone could stand having anemia BEFORE treatment.  It seem so rough to me!

[crushed]

i'm no hematologist but as i understand it thalassemia is not completely different than other forms of anemia. while there is normally no medical treatment for minor intermediate and major are a different story and normally can't be treated for HCV. i've been telling Drs for years i believed i had it (minor) and none addressed or acknowledged it. when i pointed out to the hepatologist that i felt it should have been a bigger issue it didn't go over real well cause i think they missed the fact i had it even though i had told them i believed i did. there a number of thalassemias but you most likely have thalassemia beta minor as i do. normal adult male HGB should run about 16 and from tests dating back to 1994 i've only been over 14 once and usually am in the low 13's. when i started tx the riba knocked my socks off and i ended up on 80,000 IU of epogen a week. it was bad enough at one point that the nurse and Dr agreed i should stop the riba till the HGB recovered but they FORGOT to tell me another point that didn't go over real well when i brought it to their attention. fortunately the epogen kicked in and my HGB recovered to low 11's and hasn't gone any higher.

so after all this rambling imho you will most likely need epoetin (epogen or procrit) and i would make sure your Dr understands that it should be taken into account pertaining to tx.

[Mister beagle bailey]

This animia never bothered me.  I'm an 11, so I don't know how much play I have with the meds.  I want to take it,but I guess I'll have the wait till after I see the Dr.  The Dr. know's my history and maybe I'll be able to take it.  But all your numbers are higher then mine, so I don't know.  Will keep you informed.  Thanks so much to all.
                   Bob

[Mister beagle bailey]

Hi Bobby,
Will see you Thursday, we all cann't wait.
                Bob

[Mister beagle bailey]

Hi Bobby,
Will see you Thursday, we all cann't wait.
                Bob

[Mister beagle bailey]

After looking over my records, I found that my anemia was a 14 and is now a 11.

[NYgirl]

My anemia was 14+ and is now 11.  11 is tolerable. I take 80,000 of Epogen every week (40 x 2).  Like crushed it won't seem to go any higher than that.......but it's fine for me I can function this way - 9 was dreadful to go to in such a short amount of time.

Perhaps you could start tx with less than optimal Ribavirin or something - work a way around the whole thing somehow?

Do you know what your biopsy results are? Perhaps you do not even need to treat yet as you are not that advanced?

[iceboy]

Hello

It

[cquest]

Funny you mention that type of anemia because a woman at work has it...She only found out she had it after many many years of feeling crummy and when I found out I had HCV and all the cr*p I had to go thru to figure out what was wrong w/ me to the point of telling the doc to do the HCV test, she went to her doc and said, you will do this and that test...found out about the Med. anemia plus she had a chronic kidney infection and all kinds of other things...yada yada yada...she is looking and feeling much better whatever it is she is doing...I will ask her tomorrow at work.
Cin

[Mister beagle bailey]

It would be great if you could fine the article(AASLD)
          Thank You,
                  Bob

[Mister beagle bailey]

Hi,

Hope all goes well with your treatment.  Let me know how you do.  What was your blood count, mine was at 11.  Take care and good luck.
              Bob

[Mister beagle bailey]

Hi,

That sounds great about your friend.  Let me know what you find out about her treatment.  How are you doing?  Take care
                    Bob

[Mister beagle bailey]

Hello

Thanks for the info the doctor I seen last Tuesday also told me because of the thalassemia She would want to test my blood ever three weeks.She also said if I drop down to 10 she would stop my med I really don't feel comfortable with her. My wife and daughter made me a appointment with a doctor in NY my daughter goes to him for other things. He also teachers Hep C in collage and how to use the med. he also knows alot about thalassemia he comes from the mediterranean. So I have a appointment to see him on saturday Dec.17

I will bring your info with me. Will let ou know how I make out in NY.

Keep me up to date.

All the best and good luck.3

[iceboy]

I have normally been between 11 and 12. I forgot to take my copies of the bloodwork (the "before treatment" started numbers) last week, but I go back in on friday.

It

[iceboy]

Yhea, thats the possitive aspect of the condition, be careful to who you marrie....

[cuteus]

I did look in the site, but could not find it. Might not have been there that I read it. There are so many abstracts to sort through in there. I  will keep an eye out for it. It does seem as if you got some personal stories that resemble yours. It would be good to know your actual damage level from a biopsy. See if you can get one.

[couldn't think of a nickname]

I, too, have thalassemia minor, and is one reason why I wouldn't want riba. T. minor is a benign condition, unlike the other forms that can present some problems. My hgb runs between 12 and 14, and that is the way it has always been. It never stopped me from playing basketball or racketball for hours on end (when I was younger and healthier). In fact, since that is how I have always been, things never seemed different to me. At times as a kid, I had an excess of energy (some call it hyper).
I guess my point is, that having T. minor never seemed to present me any problems, but I wouldn't want to take riba anyway.

I was told at a young age to be careful who I married though. If my wife also had T. minor, then our kids would run the risk of getting T. major, which would be a major issue.

[iceboy]

I will let you know when I find more out. Apparently it

[Wasabi Pea]

Hi, I have thalassemia minor/intermedia (awaiting tests), and I'm heading towards the end of my second round of tx.  Because the thalassemia tends to start you out at a lower hgb baseline, it's my opinion that it's important to start out with epogen before starting tx.

My first round of tx ended after three months because docs tried to intervene with Procrit/epogen too late.  Hgb dropped into 7's, and they just couldn't get it back up in time.

Second round I started on Procrit, got hgb up to 13.3.  I'm still on tx 9 months later.  Unfortunately, I've had to really drop down on my dose of riba and really up the dose of procrit, but I'm showing non-reactive on my qualitative tests (undetectable) right now.  I hope it stays that way.

But really talk to your doctor about this because my first doctor dismissed the thal and my family history of thal as irrelevant to the tx, which was incorrect.  Would have saved me a lot of headache and a lot of hair had I only had to do this once.

[cquest]

My friend is on B12 shots w/a supplemet of B12 and iron...one family member of hers gets transfusions pretty regularly...I know the iron would be a problem for you but you could ask your doc about the other stuff...

I know some of you may remember that I was on tx for a whopping 5 days back in August (or so) and mentioned the injection site being red and swollen and asking how long that would take to go away...well folks, let me just update you all on that little matter...I STILL have a swollen area on my stomach, about the size of my palm, no redness or discoloration or pain but there is an 'area' there that I noticed this morning in the shower...it feels kind of mushy like the tissue underneath was sort of disolved slightly, it's swollen but when you push on it, it 'gives in' easier than the surrounding area...very very weird...that's almost 4 months ago that I did the one shot! I know, I'm just being a baby about it but I can't help thinking what it would be like if I had stayed on tx and kept injecting and injecting...yikes...
Cin

[iceboy]

It doesn

[Mister beagle bailey]

Hi,as of right now I don't know much about this yet- but thanks to you and ever one else I'm learning. The doctor I started out with here in Florida, the more I learn the less I trust her knowledge about thalassemia. two weeks ago when I seen her she said she would have to take my blood ever three weeks,never did she say she would send me too an hematologist.My daughter made me an appointment with a doctor that is a specialist in hepatitis,and thaiassemia, he comes from that part of the world. He also is teaching in collage all about hep c, about the med, and how to use it.I feel more comfortable going up to NY to see this doctor. My daughter was talking to him yesterday and he said one of the first things he will do is send me to a hematologist this way he can check my blood ever two weeks.He said once he starts me on the med he wants to make sure  he don't have to stop my med and the hematologist will be of great help.

The doc in Florida,really don't know much about thaiassemia, so I think I'm doing the right think. I will bring your info up to NY on my visit on Dec 17 will let you know how it works out. Thanks so much for the info.

Take care and good luck.

[Mister beagle bailey]

There are alot of Drs. that really don't know, that's why I'm going back to the NY doc.  It's two weeks away, will let you know what I find out  But my daughter talked to him yesterday and he said not to worry about the Thal because there are meds he will give to raise my blood count if it drops and it will drop. This dr.also works close with a blood specialist.

Keep the faith, there's always an answer to every problem.

         Bob

[cuteus]

is this dr in the Hepatitis C center? I am also in NY, and we do have the blessing of many hepatologist and "specialists" in hep c in the area. I met two so far. Good luck on the 17th!

[cquest]

Haven't gone to the docs yet...I got so sick of going and going...this little bunny is running out of energy for docs...My body is so strange that I just figure it is just me...I got a shot of some stuff once (after my hysterectomy in fact) that was supposed to inhibit adhesions, got the shot in my gluteus area, it hurt like holy hel* and they said because the serum was so thick, it pushes the muscle tissue out of the way...anyway, I got muscle cramps so strong for months afterwards it would stop me in my tracks the pain was so intense...I kept getting pains off an on for YEARS! That was 25 years ago and I still get a cramp or two now and then! Can you believe it?! And then to top it off, my friend (nurse) said they could have given it to me in the IV! Dumb a**es! Also, I still have a dent in my calf from falling years ago! Still have the dent! I'm just weird I figure...I'm sure I will get no argument from anybody on that one!
Cin

[GoofyDad]

You're not being a baby at all. I'd be wondering what was going on too. What do the docs say?

[iceboy]

There is not really anything new for me to report about. I went back in on friday, got the first weeks results, My HGB actually went up ,5 so Im now 12.5. Thats after 5 days of treatment, so I guess my reaction to the drugs was producing more blood. That cohears with what the blood specialist predicted. I do think though I have dropped now because Im whiped out.

It takes a while to get the new results, but Im hoping to hang in there. I hate the Idea to have to take more drugs what ever they are for. I hardly even take painkillers. Only had two tablets of paracetamole since I started treatment.

I still have not got the result on the type of Thal yet, so I didn

[Mister beagle bailey]

Well, I just  recieved the results of my blood tests.  Here are my numbers.AST- 118
           Alt-134
           ALKP- 87

Does any one know anything about these numbers?  Are there any thing else on the blood test I shoud look for?  I'm bringing the results to my doctor in NY.  

                   Bob

[iceboy]

Hi Beagel

Looks like the ast and alt are slightly elevated, but the alp with in limits. Remember, these are enzimes and they can vary depending up what we eat. I think I can say that the biopsy is the best indicator of the liver health. It

[Mister beagle bailey]

Hi,
Thanks for the link,I will have the biopsy.  Will let you know the results.  Will see the NY dr. on Dec.17, will let you know what he want's to do.

Talk to you soon and thanks again.
                  Bob