What's next if rescue meds fail?

First, let me appologize if my recent joke postings have offended anyone.  With each lab coming back worse than the previous the last couple of months, they helped pick me out of the doldrums and I thought they might do the same for someone else.  Perhaps I should have just STFU and take it like a man.  I've been trying to stay away from needing AD's but that may also turn out to be as vain an effort as fighting the dragon.

If it wasn't for my wife and kids, I think I'd be happy to just let this tired old soul slip on to the promise of being embraced by His nail scarred hands.

Anyhow, I hope those who have been offended can accept my appology.

But getting back to the topic, and perhaps burning my last allowable post, does anyone have any info, links, etc. which helps explain what is left when the rescue drugs, like Procrit, fail?

Seems my over indulgance of the drink in recent years may have weakened my blood to the point it can not handle the meds of this tx.  So while I am not hit with most of the sx's, from yesterdays labs it is looking like the end of options I am aware of is drawing near as Hgb continues to plummet despite increases in Procrit.  The extra lab I get to do this week will tell for sure if kidney's can even produce red cells anymore.  But I thought I should prepare for my visit with the doc next week to discuss possible alternatives, if any are available, should the news from tommorrow's lab follows the trend of being worse than yesterday's results.

Any help that anyone can provide would be greatly appreciated!!!!!!

[mremeet]

Isn't a transfusion a possibility? Hang in there friend, things will work out.

[jmjm530]

Sorry you're not feeling too well.

Without knowing the specifics, in general the protocol for increasing hgb as I understand ir is: (1) Procrit; (2) increasing the Procrit if not working; (3) transfusion. Off the top of my head, one protocol tranfuses around 8 but that's something you should independently research and check with your doctor.

In my case, I started with 40,000 Procrit per week which kicked my hgb back up to tolerable levels after 2-3 weeks. It was not an immediate response. I held at 40,000 for several months and then per protocol started cutting back to 20,000 a week when my hgb I believe went over 13. Within a month or so my hgb started to drop again and I went back to the 40,000 units and then to 60,000 units when for whatever reason I didn't appear to be responding to the 40,000 as the first time. 60,000 units per week eventually seemed to work and I stayed between 60,000 units and 40,000 units for the rest of treatment. My NP did speculate that my lack of response the second round with 40,000 units may be due to diminished kidney function per all the interferon, however my kidney function tests stayed normal and I don't believe my doc concurred with her.

I should also add that NYGirl recently had her riba reduced from I believe 1000 mg/day to 800mg/day but best to check with her. Her doc's reasoning -- actually a consulant -- was that since she was later in tx, the benefits of the higher dose of riba were outweighed by the risks of the high doses of epo (procrit) she was taking, which I believe was 80,000 units per week -- but again check with her or look up some of her most recent posts on her meeting with Dr. A.

Hope this helps and feel better soon. Tx can be a real b*tch.

-- Jim

[jmjm530]

OK. Here's NYGirl's post: http://www.medhelp.org/perl6/hepatitis/messages/42391.html

Again, her riba dose reduction was late in tx. Studies suggest that maintaining full dose is important but less important later in tx and most important for the first 12 weeks.  Also, she was slightly above full dose from the get-go so had something to give.

[jmjm530]

I should have added in the first post that riba dose reduction is always an option when others methods such as rescue drugs and/or transfusion fail or are deemed inappropriate by the treating team. Here is where tx gets tweaked differently by different doctors -- some being more agressive than others.

[mkeela]

GRAND OAK....you are just that. I pray you find some answers and wish I could give them to you. God Bless Your Heart!

I don't beleive that your joke's were the ones ever bieng referred to. They just may have brightened up someones day to the point of saving them from a deep dark depression. How could you ever apologoze for that??? And remember YOU ARE GRANDOAK...
and so very loved here.

[Myown]

Hi, Grand Oak,
Sorry to hear what you are going through.

I am learning from all you guys, so  I can't help in the area of meds....but what you may want to consider trying is a good B complex vitamin and a heavy dose of a sublingual b12 vitamin, (methylcobalmin, rather than cyanocobalamin). Methy. is much more absorbable. I take 3 to 4,000 daily of B12. My primary doc wants me to continue  b12 during tx for red blood cells and serotonine benefits. Don't know if the GI doc will agree with that though.

You may also want to ask your primary doctor for weekly b12 injections. If your not into vitamins, you may want to do a search on the benefit of the B viamins and red blood cells, serotonine etc.

Your in my prayers tonight along with Mr. Beagle and the whole gang.

"By his stripes......"

[jmjm530]

Hey welcome back! Hope you enjoyed your vacation.

I started doing my own B12 shots about mid-way into treatment and then stopped after a few months. Can't say they helped or didn't help but my serum b12 did shoot up quite a bit and very quickly. Also, if I remeber correctly, besides checking serum b12 levels you should also check folate levels and I believe (memory a bit hazy here) that you should take supplemental folate if you do the b12.

Since the shots are into the muscle, the needle length looks a little scary at first but I just had to trust I wouldn't hit bone :)

-- Jim

[hepcD]

i am so sorry you are having a hard time with tx. Hang in there !  Everyone on this forum is lucky to call you friend. You have much wisdom .You have been very helpful to many here. Also from a recovering alcohol/ drug addict . Don't beat yourself up ! Live life one day at a time. I know it is hard but you must go on even when it seems impossible. You will turn the corner and things will become brighter.....

[Myown]

Hey Jim,
Nice to "see" everyone again, thanks for the welcome back, but being back means closer to treatment, so reality is setting in.

I didn't think you were into vitamins....thought I saw a post that you take Centrum or something like that...Centrum, well...don't want to knock it, but....



You gave yourself b12 shots??? Doctor gave you b12?? Surprising, didn't know a doc would do give b12 for patients to do at home. Interferon, but not b12. Somethings wrong with that picture.

Tons of vitamins to take, you're right. Many in the "b" family. By the way, I recently read(can't remember where) b12 injections can help roscea. Worth trying again,maybe?

[PasoPerson]

Hey Grand Oak - sure are lots of us "recovering" folks on here!  

I needed Procrit pretty quickly in tx.  Just another shot per week, oh well, lol.  It will help your cell count and will help you feel better.  

I know God is holding you in the palm of His hand; he has far better things in store for you; you will see that in the very near future I bet (oops, I don't bet, but well you know what I mean).  

Forget the wife and kids - what are we?  Chopped liver?  You can't just slip away anywhere without us, my friend.

HANG IN THERE, SOME DAYS ARE WORSE THAN OTHERS.

Know you are loved.  God bless you.

Carolyn

[jmjm530]

Yes, I take Centrum Silver when I remember, so please hold the jokes :) Actually, I saw the formula posted here by at least one hepatologist. Idea basically is a simple multi vitamin without iron.

Yes, actually the B12 shots were my idea, and the NP agreed. At that point I had lost quite a bit of weight (30lbs) and was anemic. Ready to try anything to build me up. She did ask if I ever did intramuscular? shots and I said, "No" but didn't think it would be much of a problem.

I will admit I sweated the first shot a little as my "training" was googling "intramuscular injections"  LOL. But really, no big deal. I used the outer portion of my thigh, as directed, and stabbed straight in, then pulled back slightly on the plunger to check for blood and then wholla!

The hardest part actually was getting the B12 out of the vial as it seemed more viscous than the Peg, so I ended up using a larger bore needle to withdraw the B12, then a smaller interchangeable needle for the injection. Forgot the lenghts, but they are quite longer than the ones used for under skin.

As to B12 and rosacea, I've read articles both ways -- that it helps and that it can flare the condition. Because of this, so far I 've been reluctant to start up again, but I'll probably do another serum B12 next month and see where I'm at.

BTW the B12 injections are really cheap if you do them yourself. I think it was like $12 for around a dozen shots and I wasn't doing them every week. If you go this route, get the individual vials, as opposed to the multi-vial container, just a few dollars more but IMO a more sterile and elegant solution. I will say the pharmacist looked at me a little funny when I came in with the rx for the B12 and needles, so maybe self injections aren't an every day thing. Dunno.

-- Jim

[jmjm530]

Oh, yeah, it's coming back now -- the pulling back and checking for blood was a joke -- the B12 fluid turns out to be blood red :) BTW now that "fond" memories of tx are flooding my brain, there were several others here who also self-administered B12 shots. In fact, that's where I got the idea to change the needles after withdrawing the B12 and before doing the shot. BTW the same procedure works very well with Procrit (epo) as I found the needle dulls after pushing it through the rubber stopper to scoop up the drug. The needles I used were the B-D "Luer? Lok?" system.

[Myown]

Yeah, but i still don't get it? I don't think my doctor would give me B12. How did you get him to give it to you? Was it because he knew you were able to inject because of the hep situation. Or.....are you a doctor and trying to keep your privacy?? You slipped by saying you inject yourself with b vitamins and then tried to cover with the $12 a box thing, when in fact your  rep probably gives it as a perk??
Yup, gotta get up pretty early in the morning to fool me.

Yup, thats it, Dr.Jim. That's why your not into viamins and take the Centrum route. Conventional MD's, even with all their wisdom, see little benefit to vitamins. "Eat right", that's what they say. Didn't you say that in a post before? lol So, Dr Jim...thought you had us fooled.

Everything makes sense now...your smart, you give sound advice and great bedside manner. Dr Jim, WOW. 2 plus 2 = 4.

Word is out. At least tell us what field you specialize in?

[jmjm530]

LOL. I think many of the docs recommend a mutli without iron. What makes you think doing an intramuscular injection is so difficult? Like I posted earlier, several members here also did it. BTW my doc is pretty agressive, prescibed testosterone to build me up (I didn't take it) and later even suggested the possiblity of steroid injections, but they didn't turn out to be necessary. But in the case of the B12, I got it straight from the NP, never discussed it with the doc until after the fact -- perhaps by email -- really can't remember.

[Kalio1]

you dont need a presription for vitamin b12, you a just buy it at the health food store or vitamin store.

[Myown]

I don't mean the injection is difficult, just never thought a doc would give it for home use. Really, really never heard that. Bet if you ask your nurse, she will tell you she would only give it to someone who has needle experience, diabetic, hep  etc. But then again, she knows you got it going on lol and can trust you not to hurt yourself in any way.

Agree most doc will say take a multi no iron...but still not enough in IMO. Body eats that up in no time, in a snap.

[jmjm530]

IMO I think anyone who has done a couple dozen peg and Procrit shots can easily do an intramuscular injection. The hardest part is psychological because the needle looks so much longer and you're supposed to jab it straight in. Didn't realize you could get the vials at a health food store.

[Myown]

No...never ever ever saw it at a health food store..really?

[DougV]

I went through the same thing during tx.  I'd strongly suggest finding a good aggressive hemotologist.  In order to continue tx to completion and maintain high RIBA doses I ended up with two packed red blood cell transfusions and 60,000 Procrit weekly.  Even at that I just skated by.  Each transfusion bumped HGB up a couple points and the first lasted one month before I was back in the chair getting number two.  Fortunately the Procrit started stabalizing things about then and I finished treatment.  During most of treatment my HGB hovered around 7.0.  (Was transfused the second it fell to 6.8 and had weekly CBC done to monitor starting about week 8.)

I have to admit I almost had to beg my GI for transfusions which he did only reluctantly, and that only because I pleaded not to have RIBA reduced. (Eventually I did allow reduction from 1200mg daily to 1000mg, but only as I had lost enough weight to keep the mg/kg ratio pretty well the same.) However the hemotologist simply said if I wanted to continue treatment she would do whatever was necessary to get me through it.  Funny though, once I had that resource I stabalized and never needed anything more.  Still just knowing I had help if needed was a great relief.

As to B12 and/or B6, they help ONLY if you are low in these vitamins, same is true of iron.  Before these are prescribed a good doctor should run lab work specifically looking at these and iron.  Otherwise the only effect you would get would be a placebo effect and nothing else.

Another option is to lower RIBA doses, but it will lower chances of SVR.

While most do not like the idea of packed red blood cell transfusions, I know I didn't, I will tell you relief is immediate and it can provide time for an EPO to work, or an alternative if it doesn't.  How long it last depends on your body and the rate your HGB drops.  There are risks, but in my mine they are far less then the risk of living with hep especially if your liver is sliding towards that old Stage 4.

To sum it up here are the options:

Increase Procrit and wait and see.
Decrease RIBA and wait and see.
Test for B12, B6, and iron, correct if necessary. (This one should be done regardless.)
Transfusion with packed red blood cells.
Stop treatment.

No point in switching EPO's.  If one Procrit doesn't work the other won't either.

Hope everyone is aware an EPO is only effective in slighly less then half of the people who use it.  It is not a cure all.  After all RIBA can destroy the cells in marrow that produce red blood and all the procrit in the world will not make a dead cell produce.

Oddly enough the worst problem is platelets if they fall to low.  White and red can be transfused.  So can platelets but they only last a few hours.  Fine for surgery but impractical for treatment.

You can get through this, but to do so you may have to make choices you don't want to do.

Hope that's not too depressing.  Oh once treatment was completed, literally within days my counts started up and by 30 days post they getting close to normal.  Kind of cool as first sign was small veins starting to show up against my Casper the Ghost color and then I began to tan, so literally I could see the improvement.  

Doug

[GrandOak]

AntiDepressant combined with Antipsychotic.  A shift occurring in teen tx because of the high suicidal rate for teens who have been treated solely with AD's.  But that's yet another story of the past couple of years of which this HCV diagnosis was the icing.

[GrandOak]

Thanks, tomorrows tests are supposed to also check iron and whether there are signs that kidney's are trying to produce new cells.  It's only been three shots since I increased to 100,000 U so if prayers are answered and I follow past track record I should show signs of improvement by next week.  I guess provided that there is evidence of red cell production.


Carolyn, given the common stigma associated with this insidious disease, it's probably no surprise that alot of folks here are recovering or have been delivered.  As MyOwn said "By His stripes ..."  I'm just praying I don't need to follow Kenneth Haggins lead there though as it would seem to take the faith to move a mountain and it seems at times that I nowhere near there yet.

[Mister beagle bailey]

Sorry your having a rough time with tx.  My HGB dropped at one point to 6.1 while doing procrit.  I increased the procrit to 60,000 units every 5 days and also had 2 transfusions to allow me to finish tx.

If you need to please have the transfuion, and hang in there.  We are all here for you.

Beagle

[GrandOak]

Thanks for the update and I'll lift your angel in my prayers.  

BTW, my oldest boy's is Nick too and struggling with some of the issues that seem to plague many teens these days.  We're believing that the right AD combination will be found soon to help him.

[GrandOak]

Thx BB, the thought of a transfusion kind of scares me more than I recall the thought of a biopsy did.

Dang, who would have thought 9 months would seem like a lifetime ago. Life seemed good 8 months ago when I wasn't experiencing gut wrenching sx's and VL dropped from 72 mil to 2.4 mil.  Hey, I was a responder!

Then it seems like someone released the spring and the trap door dropped.  Probably why I become more of a pitbull when I hear of riba reductions during tx, especially in the first 12 wks.

But this too shall pass, I only wish it wasn't so painful, both mentally and physically, in the process.

[Kalio1]

You don't even have to bother with injections, they make it in patch form too. You can just slap them on.

[Kalio1]

oops forgot the link
http://www.b12patch.com/content/home.php

[jmjm530]

Doug makes some good points. Procrit (epo) does need a certain amount of iron to work.

In addition to checking serum iron, you want to check your iron stores, namely serum Ferritin and Transferrin Saturation (TSAT). If your iron stores are too low, you may need supplemental iron. At least with me, these tests had to be ordered separatly and at my request as my NP said I hadn't been on epo long enough to deplete the stores. Turned out she was correct but I don't think it can hurt to check.

[Pauly Boy]

I wanted to let you know that my prayers and best wishes are coming to you. You already have some great info, so I'll just give you my experience. I've been on procrit and it has slowed the drop in HMGB. They did say that transfusions are used frequently to treat the HMGB drop. I did go on to Wellbutrin before starting tx to prevent the depression possibility. So far so good. You seem to be a person of the spirit which will only help to carry you through the tough times as well the good times. Remembering a poem I read fequently( it's great for this guy): "Footsteps"
It tells about a man who while walking along the beach, notices there are two sets of footprints in the sand. As time go on and our friend's life becomes beset with tragedy and adversity, and he feels that he might not be able to take another step, he notices only one set of footprints in the sand. Angry, afraid and confused he shouts out:" Just when I really needed your help, when things turned bad, when I could have used you more than at any other time, why did you choose to desert me".
A voice answers:" My son it has been through these difficult times that you've been going thru, it was then when you needed my help the most, it was then that I have been the closest of all times to you. It was at this time, when you have seen only one set of footprints in the sand, has been the time that I have carried you". Stay well, an answer will come.      Pauly

[52TELE]

GO , this wouldn't be a bad place to hang out if there wasn't so much damm heartache and bad things happening to people you have grown to care about.
Grand , I dont remember (much of anything) what your stats are , but I think I would try a Ribavirin reduction before I shelved the entire treatment program. I know a single pill per day reduction can make a big difference. Its worth talking about anyway. And , the transfusions , They kept MBB's head above water for quite a while.

Take care Grand , And if your still up , go to bed. I'll put the cat out and turn off the lights...

I'll look for your post  , let us know what happens.

[GoofyDad]

Didn't have time to read the whole thread, but wanted to add they had me on 1 gram of folic acid to support the procrit. Good luck!!

[GrandOak]

Carolyn,  as I was receiving my nightly hug from my youngest son (age 9) before going to sleep last night, your post came to my mind.  I thought how ironic that the phrase you used is the exact same one I tell him when he rushes off to bed without giving me a nightly hug which is,  "What am I chopped liver,  well it may be getting chopped by the spike balls but I'm not that chopped up yet!" ;-)  Remembering it brought a smile.  THX!

[GrandOak]

Thanks, I choose that very poem for my journal and often joke in my recovery support group about it's corellary poem "Buttprints in the sand", which I think I posted in it's entirety several months ago.  But at the risk of going of topic here it is again ;-P

Buttprints in the Sand

One night I had a wondrous dream,
One set of footprints there was seen,
The footprints of my precious Lord,
But mine were not along the shore.

But then some stranger prints appeared,
And I asked the Lord," What have we here?"
Those prints are large and round and neat.
"But Lord, they are too big for feet."

"My child," He said in somber tones,
"For miles I carried you alone.
I challenged you to walk in faith,
But you refused and made me wait."

"You disobeyed, you would not grow,
The walk of faith, you would not know,
So I got tired, I got fed up.
And there I dropped you on your butt."

"Because in life, there comes a time,
When one must fight, and one must climb,
When one must rise and take a stand,
Or leave their butt prints in the sand."


author unknown

[Pauly Boy]

I love it!!! I hope you don't mind if I get some mileage out of this one it's great.  All we need is a trilogy now... Later    Pauly

[Forseegood]

Grand Oak, just wanted to say, you don't have to apologize for anything in my book, not everyone here wants this place "totally" serious...I would say that most don't...I always enjoy your postings and find you to be just that, a Grand Oak and I'm glad you are thinking of doing something more pro-active to make you feel better, (anti_ds fer instance? if you can...) and the various other things they want you to do...please don't entertain thoughts of checking out, I have suffered depression and I know how those thoughts can be, but remember, they are JUST THOUGHTS...and nothing else...as quick as you get them, please try to remind yourself of that...take care Grand Oak and please let us know how youre faring...be well...

[Forseegood]

Just wanted to chime in agreement with you, I hear so often patients talking about Centrum and how their docs told them to take only that in terms of supplementation...don't want to insult anyone, and I'm fully aware that patients are allowed to totally follow whatever their docs say about these issues, this is just my opinion and meaningless to anyone else but me...but to my way of thinking, most docs don't know butkus about supplementation, and the amount of nutrients you need cannot fit into one little pill, logistically speaking...also, there is not way you can really know just how much youre getting of every nutrient if you take a multi like that...plus the quality of Centrum? hmmmmm....anyway, know I might conjure up a little disagreement there, but I just wanted to tell you I agree with your basic premise here...

[GrandOak]

Thanks for your kind words.  Not to fret though, it would take quite a bit before I'd entertain the concept of checking myself out.  Been there, tried that once in my youth as I turned heavy into the drug scene of the time when it seemed the church was too caught up in the religiousity and less on their spirituality.

It's just that the fight with the dragon can get so hard, that at times it seems it would be easier to simply submit and let things run their course.

Ironically, last night shortly after I made a posting to a thread in the Janis message board about the promised healing of His blood cleansing the poisoning of my blood by the dragon that I was led to Revelations 12 the Word talks of the red dragon and his fall from grace to wander the earth after his defeat.  It spoke to me that no matter what, the dragon can be defeated!!!!