Open Thread for all to use enjoy

[cajunlady]

Just wanted to open a new thread for all to use for whatever and who ever needs to use this for.

cajun

[NYgirl]

Thanks CJlady!  It's important that we save our threads...it looks like the problems might be over now for a while but...it's so aggravating when we can't post!!!!

[t2622b]

Sorry I am not up on everyones situation.  Did you say that both your children have HepC?  Can I ask if they got it at birth?? I definately don't mean to pry, but I have adopted 2 children from a Unfortunate women who has HepC.  My son has tested - but we are waiting to test my baby girl untill she is 18 months (she is 15 months right now).  Just curious about her chances.  

You are in my prayers always.

Another Mommy

[NYgirl]

I've had HepC for 25 years supposedly - I have two children 15 & 17.  Neither of them have it.

Just to put you on a good side of the equation :)  My heart breaks for those who are less fortunate in that respect than I was. It might be the only lucky break I've EVER had in my entire life...but it's a good one.

BEST of luck!

The percentage of children who DO get it via birth is VERY VERY small (although there ARE women on here who do have them so it makes me wonder about the validity of the numbers some time)

[GoofyDad]

I have yet to have my six year old tested. I'm infected - his Mom isn't. If he were infected, I don't think we'd do anthing differently anyway, at least for now. Maybe be a little more careful with scrapes... So I don't see any reason to wake a sleeping elephant (am I mixing metaphors?).

[NYgirl]

(Continued from other thread)

I think Jim was doing the twice a week - 80,000 Procrit.  I'm still on the 1,000 Riba (and at 117pounds that's kind a dicey) but I've gone down to only 40,000 Epogen a week.  Doc is hoping soon to take me completely off.

[cajunlady]

I have been told several times that the chance is even slimmer if you had c-section. I had c-sect. for both my kids. I am scared to death for my two boys.  Doc advised not to test right now.  Do I or Don't I test them.  Don't want them to hate me.  I struggle with that demon too.

cajun

[jmjm530]

NY said:
I think Jim was doing the twice a week - 80,000 Procrit.
--------------------------------------------------------

The most I did was 40,000 units every five days which equates to 60,000 units a week.  I started at 40,000 units every 7 days, then to 40,000 units every 14 or 10 days, then to 60,000 units every 5 days and finally to 40,000 units every 6 or 7 days.

As I mentioned earlier I found a six-week delay between changing Procrit dosage and peak results. For example, I was fairly certain (and so was my nurse practioner) that when my hgb dropped significantly several months ago I needed more Procrit and that's when I jumped from 40,000 units a week to 60,000. But in retro-analysis of my Procrit dosage against hgb, it appears that had I stayed on 40,000 units/week or only dropped down to 40,000 units every 8 or 9 days, I probably never would have needed the 60,000 units per week. Right now I'm back on 40,000 units every 6-7 days and my hgb was high 12's a couple of weeks ago and hopefully low 13's by now.

NY...have you cut back on your Procrit because if I remember correctly at one point you were on 80,000 units/week and your hgb was up over 15? I just wonder if initally your doctor didn't give your initial dose of Procrit (40,000 units)enough time to kick in before upping it to 80,000. My understanding is that if your hgb is over 14 you should phase down Procrit. But s l o w l y. LOL.

-- Jim

[mjellk]

Does anyone remember the Gold Bond creme that was recommended for dry skin??  or anything else that may help??  Although I'm not on treatment, I can't imagine my skin being any drier.  My hands look terrible.

Hope everyone is feeling well today.

Thanks...MJ

[jmjm530]

First paragraph should read "40,000 units every 5 days" not "60,000 units"

[jmjm530]

Yes, you're thinking about Extra Strength Gold Bond Body Lotion (Triple Action Relief for Dry Skin). It comes OTC in a green bottle with a red top and I believe was recommended a couple of weeks ago by NY Girl who had excellent results with it.

I tried it on various parts of my body, including face and neck but went back to my previous regimen of applying vaseline after a show or otherwise hydrating. Gold Bond has a lot of Menthol in it which probably is the ingredient that helps most with the itch. However, in my case, my face was overly sensitive to the Menthol and things seemed to get worse. Perhaps, the product is not meant to be used on the face or possibly my skin problems are different than NY Girl's or yours. Probably the best thing is to experiment with different things and find what works best for you. Specific to your dry hands...at bedtime you could try soaking them in luke warm or cold water for a few minutes, then putting globs of vaseline on them and finally covering with a cotton glove. My gloves at least tend to fall off so you might want to use a rubber band or something to keep them on. Some people use disposable plastic gloves instead.

-- Jim

[Mister beagle bailey]

Good morning,

Was wayching everyone's post and I forgot to asked the Dr. how many units of procrit I got yesterday. I can't belive that I did that. Is there any one out there who has Thalassemia and on procrit?  

Hope all are doing well today,  

  BB

[FlGuy]

In a prior thread you wrote 'People will go and become infected so they can jam a 750 mg dose into two horse-suppository-sized pills up their, well you know what 3 times a day?' I thought it was being tested as an oral med.  I would expect, as a suppository, it would interfere with log dropping and for some an impact to hearing.

[NYgirl]

Jim yes I was cut back to 40,000 a few weeks ago.  When I was on only 40,000 for a month it didn't go up at all but stayed at 9.  When we increased to 80,000 it went up a bit each time. Finally when it got to almost 15 he cut me back.  He said he believes that perhaps we can drop the other 40,000 at some point. I hope so who needs it extra meds!

I have found with the GoldBond that I cannot put it on after a shower or bath or washing up really as the menthol DOES bug me too.  However if I put it on in the am before work...at night it is STILL there and I believe it is the same "vaseline" effect blocking the moisture IN.  I could not put vaseline on myself though and head out to work so I am very happy for that stuff it has totally gotten rid of the Riba Rash.

But when they try to pop up in another area that I am NOT slathering it on...I just start applying it and it's gone in a day!

PS CAJUNLADY _ I had two c-sections myself I am not sure if that did the trick or not but the kids are fine...I am GLAD I got them tested.  Really. I could not live with the QUESTION floatin in my head. I knew that I would do whatever I had to do for the betterment of my kids...and knowing that they were ok was a huge load off an helped me to worry about myself. If they had been positive...I would have done whatever I had to also!  But I did not want to take any CHANCES with their health. My children are not little though they are 15 & 17.

[Dale_Ray]

Hey Everyone: I noticed the conversation about children and passing the Hep c on. We believe I picked up this virus in 1977 after an accident at work and several blood transfusions. I was a blood donor until I think around 1997 when I received a letter from the lab telling me I had the virus. My two daughters had been born during this time and 20 years had passed but I still had them and my wife tested. All was okay but I am so cautious now with tooth brushes or just anything. I have three grandchildren so I really have to stay on top of it. If I get cut I generally go nutty telling everyone to get away from me because I am so afraid for them. How many people got my bad blood over those twenty years as a donor? I wish that the govenment had launched some type of awareness campaign once they had this little jewel identified and maybe fewer people would have been affected. I remember when the statistic was some 500,000 may be affected now I see numbers of 6,000,000 in the U.S. I don't think anyone knows but the responsibility falls on each of us to protect those around us. Peace - Dale

[Mister beagle bailey]

Hi,
I just called the Dr. he gave me 40,000 units of procrit.  I went from 11. to 9.6 yesterday.  I wonder if I should have been given 80,000.  Let me know ehat you think.

Hope your having a better day then yesterday.:)

  BB

[cuteus]

just for information, c-section has not been found to be an advantage in hep c infected women. This article is 5 yrs old, (I could not find the most recent one that came out in SFO) but it had the same basic conclusion:
http://www.hivandhepatitis.com/hep_c/news/hepc_032902.html
it had a large number of subjects enrolled, so it is a good representation.
Just FYI.

[jmjm530]

In your case, my guess is -- and it's only a guess -- is that if your doctor had waited six weeks instead of 4 before evaluating your Procrit dose -- I think your hgb would have come up on the 40,000 units/wk and you would not have needed 80,000.  Conversely, be very careful going off Procrit completely without conservative staging-down. At one point earlier in treatment when I was on 40,000 units, my hgb went up to 14.5 so I decided to stage down to one shot every two weeks. Six weeks later I was at 11.2, which for me is quite low.

Of course, we all react differently to these drugs, but I was able to see a definite six week pattern by plotting my almost weekly CBC's against my Procrit dosage. What I've also found is that over time, the body does adjust somewhat to lower hgb. For example, I was hospitlized at week 2 with hgb 11.4 but later in treatment I've been that low without anywhere near those sides.

For me at least, 40,000 units/week (give a day or two each side for fine tuning) seems to be the magic number -- with too much less showing ineffective results and more not necessary. Perhaps that's why it seems to be the usual starting dose.

-- Jim

[jmjm530]

I think your doc is correct to start you at 40,000 units. My previous post (above) outlines my own reaction to Procrit although I'm sure different people have different reactions. Procrit will not start to work immediately so that doesn't mean your dosage has to go up until it's given some time. In my case, it took six weeks for peak effect. If your doctor has a lot of experience with epo, I'm sure following his/her guidelines will work. I just didn't want you to start getting nervous if you don't see overnight results although some people do report feeling better in as short a period as a week. I do question somewhat whether they're feeling better because of the Procrit, the fact that their body has had one more week to adjust to the lower hgb level, the placebo effect, or some combination of the three. The good news is they started you on Procrit so better days should be ahead. All the best moving on.

-- Jim

[NYgirl]

I believe you are right on the money as recently the tinnitus (which was my FIRST symptom of anemia) has been appearing plus a bit of lethargy once again.

I think my body started to freak from the withdrawl of the Epogen...cutting back so MUCH at one time.

Of course I should have asked what you thought BEFORE I listened to my doctor because "Jim always knows BEST" and I don't know why I just did what he said (for once...except I wanted to get rid of one shot a week i hate those needles LOL)  ;-)

I have to find out the CBC numbers...I would not be surprised if it dropped quite a bit.

I would definitely agree that tapering might be MUCh better...on the next leg instead of just stopping completely.

As always thanks my dear friend...you are GREAT!

[jmjm530]

Thanks for the confidence but remember I also blew it with epo dosing in my own case. LOL. It's NOT an exact science. The only thing I'm sure about is that the reaction is definitely delayed and if you don't take this into consideration when looking at your hgb numbers mistakes will be made. Because I was having weekly CBC's, it was easy to come to this conclusion IN HINDSIGHT. Moving forward, I'm very careful not to mess with the Procrit dose except in small tweaks. But again, your milage may vary, there are no universal formulas, and if you doctor doesn't know best you can always consult with a hemotologist familiar with HCV therapy. But moving on -- what is the general state of your health these days? You sound a lot better than earlier on. Also, have you decided on another consult yet to perhaps get more agressive with tx, or are you going to wait for your week 24 PCR first?

-- Jim

[Mister beagle bailey]

I see what you mean, and your right.  It's crazy but I can't tell the difference. I'll have shot#3 Sundy and before starting tx I was11-11.5 then yesterday I was 9.6 and was given procrit, however I feel relly good and I'm not tired.  I just don't know why I'm not feeling the anemia.  Like I said it's crazy.  Thank you for as always good advice.

Stay well,

  BB

[jmjm530]

Also keep in mind your body has been used to hgb 11-11.5 pre-treatment. So your hgb 9.6 is less than a two-point drop in three weeks. Many of us here started with higher pre-tx hgb so therefore we would feel hgb 9.6 a lot more than you would.

In other words, the amount of the drop itself, and the rate of drop can be as important as the absolute number itself. My NP told me early in tx that I probably wouldn't feel the effects of anemia until I dropped more than two-points in a relatively short period of time. Considering your lack of symptons, it seems to me your doctor is being proactive which is quite excellent. My only advice is to monitor your CBC as often as you can, but I'm kind of a neurotic in that regard. :) All the best.

-- Jim

[pegory]

Hi all,  Most of you probably don't know me.  I use to come to this great site while I was undergoing therapy.  I wanted to report back that after 48 weeks of therapy and now 2 years completed, I just tested SVR again a couple of weeks ago.

Had a pretty rough time with therapy, used procrit, neupogin, and had some significant psoriasis issues that I had to endure.

So my hope today is that you will be encouraged to stay with it during this difficult time, and that your results will be as good as mine.  God bless.  pegory

[cuteus]

two yrs already? You were finishing here when I was just starting, but I remember your posting the 6 mo post tx PCR results, way to go! I hope you are living life to its fullest.
ty for reporting your news. I am now 1yr post, and SVR also. MAny geno 1 are making it all the way.

[jmjm530]

That's wonderful! At two years SVR you should feel pretty good about licking this thing for good.

Would you mind elaborating a little on your problems with psoriasis during treatment? What type? Where? How severe? What treatment did you try (topicals, light, systemics, etc) and how successful were they? Was your psoriasis pre-existing or did it just develop on treatment? Did the psoriasis go away after treatment and if so how long did it take and are you still on psoriasis tx?

I ask all this because I had very minor pre-existing psoriasis which flared during tx. Ended up with guttate psor on trunk,  plantar pustular on hands and feet, and some plaque mixed in, including on face. Currently on topicals, UVB-Narrow band light for the guttate and X-trac laser for the plantar pustular. What a PITA this has been. LOL.

-- Jim

[mikesimon]

I remember you. Congratulations!!! Stay well. Mike

[Mister beagle bailey]

this is continued from last post.
Ny girl had said I'm doing well because of my positive out look I believe it's because of all of yous that I'm able to take this trip of a life time.  With out yous this would not have been possible for me. I thank you all, and pray we all reach SVR.

I'm very lucky to have the people on this site,you all don't have a face but you all have a powerful voice.

For ever grateful,

  BB

[Mister beagle bailey]

Your right the rate of the drop can be as important as the absolute number.  Thanks you put my mind at rest.

  BB

[FlGuy]

Not intending to open a can o' worms, or a can of anthing else - I noticed that vrtx has another drug in development, VX 765,  for the treatment of psoriasis.

[jmjm530]

How apt. LOL.

I guess if I ever have to re-treat it will be with Vertex 1725 -- Vertex 960 for the Hep plus Vertex 765 for the Psoriasis. LOL.
Thanks for the heads up.

-- Jim

[GoofyDad]

Jim on psoriasis: "What a PITA this has been..."

Bummer Dude. Ya' got it back there too?
------------------------------------------
Beagle on the Forum: "you all don't have a face but you all have a powerful voice"

Loosing the face may have been one of the best things to come out of this for me.... ;-) (now if I can do something about the smelly feet.....)

[Mister beagle bailey]

Funny , but I'll see what I can do about the feet ;)

BB

[pegory]

chevygal,  I have to laugh.  I forgot about my thyroid!  But you didn't.  Yes it resolved itself.  I stopped having to take thyroid med's between 6 mos. and a year after treatment.  I also had that re-tested recently and it is right on target.

jmjm,  I sure feel for you.  Sounds like you have some very tough psoriasis issues flaring up.  My prsoriasis was pre-existing and contributes (still does) to my psoriatic arthritis.
The therapy pumped it into to overdrive and through all the procrit, neupogen and other challenges that seemed to threaten my ability to continue, it was the psoriasis that was torment.  I got plaugue on my head and used tgel shamppoo to help control it.  Used it twice a day.  It really affected my fingernails which all fell off, my ears (including inside) and the bottoms of my feet.  Also got the red (can't remember name) type under my arms.  Now I have all this, and as I said, it was pre-existing, but it was and is again easily manageable. Hang in there, it all got back to normal....and frankly got better than pre-existing.  I think getting that hep bug out of me help in that regard.

FWIW - I had back surgery back in August for disk problems I have been dealing with for years.  Never mentioned it here, but I tell you, I feel blessed to have beat the hep and to now have my leg and hip working good as new.  

[FlGuy]

Might not the combination of high dose riba with the UVB therapy exacerbate the psoriasis (or other dermo condition) rather than subdue it?  It will be an interesting outcome when you reduce ot end the riba.  Good thing the end is near.

[wMich]

Glad to see I'm not the only one "losing face" here!     - Lee

[MARGARITA DENVER]

Hi all, - I start Pegasys y Copegasys today at 3:30pm - i am getting all my shots at the doctors office.  Any advise?

[pegory]

You will my friend.  Hang in there.