Anyone on seizure meds

I haven't posted in a long time. Now over a year since we were all dx, over the shock but still very hard to read some of the posts, esp the ones that talk about how rare it is to vertically transmit this virus. In my case it was 50%!!! Two out of four kids. Anyway that's not why I am posting.
I do read and read and rejoice when treatment ends, you folks feel better, svr is achieved and just the general support is great and inspiring.
Son finally turned 18 and switched to my hep doc.  Daughter and I have 0 and 0 and 0 and 0-1 bx with moderately high v/l.  Just goes to show that there is NO correlation between v/l and damage. Son has very very low v/l but at 18 is already a 2 and 2. Thats not good. As some of you may remember, he is disabled and on seizure meds which can CAUSE liver damage. How much of that damage comes from the meds its hard to say. He is going to treat in the fall but is switching to another med - Keppra. Is anyone familiar with it?  We cant see how he does off the meds because treatment lowers the seizure threshhold. Lots of complications and unanswered questions. That can only be answered by experience - doc is concerned.  Staff is wonderful at this liver center.  Two of the PA's called to say how much they enjoyed meeting my son. He is a charmer.
I was slated for phase 2 of VX but with this development doc said he would rather see me and daughter in phase 3 when we wouldnt have to come in often.  Thats fine with me. I am very happy with the doc - thats one of the few good things going on.
Dance!

[Paris47]

Are your son's seizures from hep c, or epilepsy. My son has severe seizures from diabetes, I won't bore you with his story, but good luck, I hope all goes well

[dancegirl54]

Seizures are from epilepsy, he has mild cp and mild mr

[friole]

dance - glad you checked in.  I was wondering how you were and didn't realize you were waiting for a trial. It seems that you are under good care and the trials will be the right thing for you and your daughter.  Unfortunately, I know nothing about the seizure medicines and the combo treatment.  It might merit a question to the nurses at the Peggasist sight

http://www.pegassist.com/#

FL - interesting meeting.  Interesting that he doesn't want you to do the bx as it might decrease your chances to get into the trials.  I assume that means that with your present bx you would get in.  Don't some of these VX trials also still include the traditional combo therapies?  I am not clear on when your start date could be if you get into the trials -- August - or is that if you do the traditional therapy.  I know what you mean about not wanting this to go on forever, FL, but, like he said - the Peg-Copeg didn't work for you.  Why not try something else and go for the trial.  Good luck with a hard decision.
Kathy

[FlGuy]

Waiting for a call back from Miami now. Trying to get appoint with the chief hep at Miami (successor to Schiff). Although I'll have to pay the $$ myself it may be a good investment, at least I'll be in front of the principal investigator for a bunch of trials, it's close by and I have all the pertinent records in my hands now.  I don't want the habit of paying much out of pocket.
Tx'd 6/2005 - 12/2005, fully med compliant, clear at 12 and 24 weeks (12 weeks was 1st pcr), peg-intron and 800mg of the good stuff, hgb hovered around 12-13 so I wasn't anemia-challenged, required Neupogen. Have many of cirrhosis 'signs' low platelets, spider angioma, red palms, very low LDL (now 65), seemingly unstable blood sugar, weight management challenge - lack appetite.  Even with this slew of papers, can't find ammonia level. Post tx pcr at 5 months with 2 million vl, ast/alt 51/71.  Have had recent endo with no evidence of varacies but have symptom-free Barrett's, Gastritis, Reflux. Personal thought is that would have been better off with more of the evil capsules and a tad longer.

[FlGuy]

Was ready to start traditional re-tx in August.  In speaking with the trial manager, they think for this location, they will enroll relapsers in a few months and start late this or early next year. Although I wouldn't prefer it I would be inclined to go with vrtx even if it was also peg/ifn. I have a lot of questions about trials and being dropped - but the trial manager said they don't just show trial drop-outs the door, they follow on with traditional meds. I don't know the inclusion/exclusion criteria or the number of participants and don't have a feel for the chances of being selected a subject.  Again, more unknowns which is a little unfomfortable.

[mikesimon]

You're a complicated guy FLGuy. I would think that with Barrett's you get periodic endoscopies and, if so, any indication of varices would be observable. Gee, I don't know what to say. Type 3a is out of my experience. I seem to recall steatosis often compromises successful TX with type 3s. I wonder if that's an issue as you mentioned weight management. I also seem to recall that ribavirin dose isn't as significant with type 2s and 3s but I could be wrong. I was right when I said I wouldn't have a clue because I don't. I do wish you the best of luck and that's about as wothless as my opinion. Take care FLGuy. Mike

[FlGuy]

Thanks. Actually, in some respects life is simpler on tx. take a shot, eat some pills, feel like junk and not tax the brain power with any heavy thoughts or decision. How are you feeling?  I'm behind in reading. Have you been 'blasted' yet?  and what are the impacts to how you feel and any recovery from the blast?

[mikesimon]

No, I didn't get the blast. The biopsy showed mild to moderate HCV with a load of 30 IU/ml so I am back on the stuff, albeit at a reduced dose...90 mcg. Pegasys weekly & 200 mg. Ribavirin daily. Happy days are here again. So I kind of know how you feel FLGuy. All the best, Mike

[can-do-man]

Glad you let us know. One thing is how does he figure your in better shape now then before tx with no bx to back it up. I'm just curious, or was it just his feelings? As for vertex the beginning cirrhosis for you might be the reason you might get in. As i was told these would not be able to get into any of the trials starting this year because of me having cirrhosis and if all keeps going good with vertex then sometime next year maybe theirs trials will accept me. I know my doctor is very excited about vertex and the new schering-ploughs new drug. Though he feels vertex might be the fasted and best bet. Of course i'm hoping i end up clearing and get SVR. But looking ahead just in case. Best to you. One more thing is your stage a 3? As my doctor told me alot of times they call late stage 3's beginning cirrhosis. If so i would try to get them to keep going with the three.

[FlGuy]

Missed your posts this week, hope you're feeling ok. One doc says it's cirrhosis, one doc says beginning cirrhosis, the bx was not 'graded' or 'staged' and I'm not sure what a trial center will call it.  As you said, it could be a trial-limiting situation.  The 'better' is based on labs, mostly and that I escaped tx largely unscathed, Diabetes was resolved with tx but sugar is bouncing around again and I feel good. pre-tx ast/alt were about 200/300, now 51/71.  It's all mostly subjective which drives me nuts.

[mikesimon]

You may have seen this but, if not, it deals with steatosis and HCV  Type 3.

<A HREF="http://www.medscape.com/viewarticle/525585/">Steatosis & HCV</A>

http://www.medscape.com/viewarticle/525585

Mike

[can-do-man]

Well lets hope it works out for you. Does sound good your health is better. With your relapse and i knew goof had some concerns, i was wondering with you guys being a 3 with cirrhosis if with me being a geno 1 with ongoing cirrhosis if my odds were even less then what i was told. Like around 0. But it looks good for goof and yours is at the most beginning cirrhosis. So you'll make it to. Damn virus. At least it sounds like your going to be in good hands. Heck thats what my allstate agent just told me as he raised my home and car rates. Wishing you the best guy.

[jmjm530]

Good to hear from you again! Don't know anything about anti-seizure meds but as to the advice you're getting regarding Hep C, you're seeing one of the best doctors in the country, as you know.

The only question I would have for him, is as a stage 0, why rush into treatment with Vertex even at the phase III junction. An alternative would to be followed closely -- bloodwork, fibroscans, etc -- and then wait until the Vertex trials are over and more data is collected. It's also possible by that time, Vertex might even start testing Vertex alone (without the peg and riba) or other even more promising drugs may come along.

Like I said, your doc is the best, but I still always find it's a good idea to challenge their conclusions to give oneself more info for the final decisions. Great docs are people too, and sometimes get too close to the drugs they are testing.

All the best and please keep us posted. BTW I'm non-detectible at week 12, so SVR looks very promising. Still, I don't recommend peg and riba (at least long term) unless treatment is really necessary.

Take care.

-- Jim

[dancegirl54]

I'm so happy for you! You are a great help to SO many people, including me.  I know you had a hard time with the meds and do not look forward to subjecting my son to them but at his age and stage he cant wait - he is ineligiible for any trials.  Any suggestions as to how to prepare him?  Am already trying various ways to get him to drink water - he's a teenager and very resistant though has been open to some flavoring.  And thanks for the suggestions about Vertex.  Was definitely wavering in that direction at least with my daughter - she is very young with minimal damage.  I have time to consider it with myself - and will definitely pose ?? to doc in sept. I'm over 50 now and seem to have a lot of auto immune type symptoms - of course I want to blame everything on the hep c, it could be I am under enormous stress - I do know I want it gone.

[Paris47]

I was told from various doctors, that due to my son's 'brittle' diabetes, & periods of hypoglycemia, that it induces seizures.
my son also has mental health issues, (MAJOR).

[jmjm530]

Another reason to wait until after the trials are over -- assuming you will eventually treat with Vertex -- is that trials in general restrict the doctor's ability to customize treatment, including does, duration and the use of rescue drugs. Later, when the drug comes into common use, the doctor can do what he wants.

[FlGuy]

Interesting and surprising visit with new doc yesterday. Had full before, during and after Tx labs (cbc, liver, metabolics ,pcrs, bx, us, scopes) with me.  He said that all considered I

[jmjm530]

A difficult decision as all of these treatment decisions seem to be. From what I've read about Vertex -- and knowing my personalityh -- I'd probably opt for the Vertex trial given the opportunity, with traditional treatment as backup like your doctor suggests. (And who knows by then maybe Alinia will startle us all!)

Anyway, if your past treatment helped your fibrosis some, then I see no reason why the Vertex trial wouldn't do the same -- in other words, no time really lost. Regarding the biopsy -- as long as your in Florida, have you considered going to Miami for a Fibroscan? It's a non-evasive way to track your liver condition.

All the best luck!

-- Jim

[mikesimon]

Can you elaborate on your first TX - when you cleared etc? Your VL of 2 million - was that soon after relapse? It seems as if VL can, and often does, shoot up higher than previously right after relapse and then it settles down  bit. I probably won't have a clue as to what you should do but a little history might help me form an opinion - as worthless as it will be. This stuff is wicked hard to figure sometimes. I do feel for you and I also kind of know how you feel. Mike

[FlGuy]

I almost wish that the trials weren't out there.  It would be an easier decision - to go longer and stronger on peg/riba. But, if I can get in easily to doc#3, where the trials happen, I might be able to get more insight that would tip me in one direction or another.  I want to take no more than one more shot at tx'ing. But, the possible after effects of peg/riba part 2 are scary and vrtx, for example, hasn't produced any svrs that I have seen. It might come down to rock, paper, scissors or a coin toss.  I can see it now, 'ok now best of 3, best of 5, best of 371..., square root of ast plus square root of alt - toss that many times'.  I want a hcv vacation.

[FlGuy]

Be careful with that dosing, you don't want to fry anything that shouldn't be cooked.  Someone mentioned today about doing the peg every 6 days vs. 7. I wonder if that has merit.  Keeping weight on is my issue.  Although I feel good, I don't have a robust appetite and sometimes I'm lazy about making myself eat.  I wish I had a Foresee or Rocker on staff to help me be more healthy in that respect.  I don't eat junk or fast food, I just don't eat proper amounts at proper intervals - and I know it's important.

[jmjm530]

The smile is big now but regarding the big *SVR* smile...

While my doc agrees the 12 week post tx tma correlates closely with the 24 week, I still get the sense (reading between his words) that he's been burnt on those numbers in his quite large practice and that the real big breath isn't warranted until six months, or even a year. Same impression from my NP and some other docs I emailed. Still, I am very happy, but the whole thing will be probably a little more real starting at the six-month juncture.

-- Jim

[Dale_Ray]

Hey Beamer:

The dog doesn't droll waiting on you to drop does he? You might want to muzzle him for the duration. Think of it this way if he bites in he ain't gonna be feelin so well. I've been punishing mosquitos all spring. If they want to land and bite have at it. They don't linger long I think I am too toxic.

You are exactly right it was Dr. Strangelove but I think the movie actually carried two titles. Nope I just looked it was Dr. Strangelove or how I learned to stop worrying and love the bomb. I thought it was a great movie. Kids today don't know anything about bomb drills and getting under your desk at school. Like the top of that desk could stop a mushroom cloud - ha!

Like I said I am two weeks behind you that means you will be able to tell me how great it feels when the fog lifts and the sun comes out again! Dale

[MissMiss]

I think the body is a pretty smart critter.  Just like folks who are chronically dehydrated can suffer ademia (sp), folks who don't eat enough can gain weight.  I think our bodies know what we are deficiant in and will grab ahold of what they can and save it for the times we don't treat it right, so to speak.  In doing so, certain areas don't get what they need cause the body is saving it for the most important areas.  

Your brain will always be the first to get the water.  I think muscles are the last, so its easy to build up the lactic acid which can cause pain and cramping.  I suppose it would be true for food too.  

Stopping the cycle, I dunno.  Just know I have read and heard the above more than once.  I'm sure no health guru (you should see my diet, lol) but wanted to share what I do know with you.  

miss

[FlGuy]

Yes, there's no doubt that we are 'fearfully and wonderfully made' but that doesn't make it any less confusing.  I gained a lot of my lost tx weight back but have plateaued and can't seem to get the several more pounds I'd like to have. I think  you have something there missmiss.  I remember when our kids were young and they'd go through eating spurts.  The peds. said not to worry that kids' bodies know what and how much they need and their bodies and appetites worked to achieve equilibrium.  I suppose there may be similar forces at work in older ages too.

[lilmoma]

My "baby" graduates tonight everybody!!!!!!!!!!!
18 and now she is graduating, just got her new car,.......ohhhhh
I will be one proud mama tonight.

lilmoma

[FlGuy]

Hope you have another good day to enjoy it. New car for a new graduate - that would scare the poop out of me. We'll save the 'scared poop' for an appropriate thread - maybe the next political one.

[can-do-man]

congrats to you and your little girl. A proud mama you should be. Sounds like your feeling better today so enjoy tonight.:)

[dog_lover]

In answer to your original question might I recommend Clonazepam?  I have something called myoclonus. This delightful little malady causes involuntary - as if there were any other kind - jerking.  Your sitting there with a bowl of ice creme and chocolate syrup it's on the way to the chute and zzzzaaaappp it's in your hair.  My wife left me a couple of years ago and don't date but I can only imagine how this is going to go over.  Sorry, got a little waylaid but the preferred method of treatment for these seizures is Clonazepam. It's a benzodiazepine, like Valium but it's not like knock-out drops. I had some problems with them.  I'd lose track of how many and when I had last taken and when I went to bed at night I'd sleep walk.  My dog's barking kept me from leaving the house, with car keys in hand, to go for a drive in the Mighty Subaru. I had to quit taking Ambien for the same reasons. Spooky.  Anyway, sorry to chatter and I hope this helped a little. Take care, I wish you the best and enjoy the weekend as best you can.
Dog_Lover

[dog_lover]

Oops,forgot to ask, any Social Security Gurus out there today? If so I was wondering what the hearing is composed of?  How long? Is it adversarial?  That kind of thing.  Sorry to kind of break the thread for you but according to the administrator's you should open a comment twice a year??  Please let me know if the Clonazapam works.
Cheers
Dog_Lover

[jmjm530]

My recommendation on waiting a year or so was more for you and your daughter.

But to your son, sounds like he has a lot on his plate right now and not sure why he couldn't wait longer as well for hopefully better drugs with less side effects and longer treatment times. Hopefully, within 2-3 years, the trials will be over and drugs like Vertex may be available for anyone.

I say this because stage 2, while not as good as good as stage 0, is still not all that advanced in a relatavistic way. So you have to weigh the downside of treating now versus the downside of waiting a few years. Something you may want speak to your doctor about as he probably knows more about the fibrosis progression curve with someone your son's age, condition, etc. More than that, he's one of the few in the country with a Fibroscan machine in his office for frequent tracking of liver stiffness.

As to how to prepare him in case you decide to go ahead -- probably mother knows best because she's both a mother and knows him best.

Let us know how things work out.

-- Jim

[NYgirl]

I don't know of anybody on the board on Social Security for HEPATITIS - it would be a really long hard fight to get any money since our sides aren't considered really debilitating (even though we all know the anemia can LAY YOU OUT) and such.

I was on social security in the early 90s - I had been in a bad car accident long story short broken back and a "dent" in my brain causing short term memory loss.  It was obvious to anyone I was eligible but it STILL took a LONG LONG time to get the money!  

It was a lot of work and they make it as absolutely difficult as possible for you to get it. But a just single mom (that's when husband went out and got a 20 something year old ex-stripper girlfriend and told me sorry babe stay with the two kids you are no fun anymore) they really did eventually help me out and get it through so I could get the back money to feed my kids.

[dog_lover]

I'm sorry I wasn't very clear. I suffer from chronic severe back pain.  It's so bad in fact that I wear an internal pump that delivers morphine to my spinal cord  24/7. On top of this I have chronic severe depression and a generalized panic disorder. On top of that my left hand is virtually useless as the result of a mcy accident. It's these things combined that are the basis for my claim.  Thank you so very much for taking the time to respond to my string, it's very kind of you.
Dog_Lover

[willing]

dance : your 50% does seem right in line with what's been reported (<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16721858&query_hl=1&itool=pubmed_docsum">Indolfi'06</a>); assuming anything less does seem scary.  For what it's worth, progression is supposed to be much slower in those infected at early age, and I can see it would be hard not be to be concerned about your son's results. I would think something like half dose ifn might be a good way of stabilizing progression while the new tx landscape comes into better focus. Best wishes to you and family.

FL : interesting posts. I haven't tracked stats for 3s that closely but I think the outlook from "longer&stronger"  should be more promising than for 1s. For 1s that option looks pretty dim (<50%) until you get into fairly extreme dosage. I'm 52, figure my life expectancy is about 30 more years, and am not willing to spend more than 3 months of it on full dose ifn/rbv. That might mean waiting another 6-8 years (my guesses) for enough alternative anti-virals to come online. If my bx results warrant it, I'll do some maintenace dose ifn in the interim.

[FlGuy]

The doc mentioned Infergen and I quickly ended that part of the conversation.  Too many stories from folks like Mangnum and Susan to contemplate that as a possibility, at least at this point.  Who knows - a maintenance dose may be a consideration in the future but right now if I take anything it will be with a mind to eradicate even if it includes riba. And, I did get to UND with peg/riba so I know I at least responded.  Seems like we are in ever-changing battle planning.

[susan400]

I'm probably going to say 'forget about it' with regard to doing any clinical trials any time soon.  I'm sort of mad about the whole Hep C, liver, treatments thing right now.  Nothing I have ever done with these treatments has ever worked and I've tried everything.  I'm not wanting to do any trials.  I am more interested in staying away from all the hep C meds until the Vertex drugs get FDA approval.  First of all, I have to come off of the current treatment. Sorry if I'm being negative sounding, but the facts are what they are.

Susan

[willing]

The worst impact of HCV for me since relapse apparently has nothing to do with health but with the fact that the rest of my life is going to fall apart if I don't stop obsessing over it...
Anyway, over lunch I read through Sethi and Shiffman'06 and would like to recommend it to both those considering re-tx and to those facing those critical week 1-12 tests.

For relapsers there's nothing dramatically new here, but it's useful as a thorough a bibliography of the available data on re-tx and maintenance strategies. FL: one item that caught my eye was the statement " current data suggest that retreating patients with genotype 2 or 3 for a longer duration does not affect SVR because 24 and 48 weeks of therapy yield similar rates of SVR" and they cite Hadziyannis'06.
My hunch is that the 800mg of the good stuff may have been a significant factor. Confirming that you're getting the right rbv dosage is pretty tricky, as already discussed, but, as Fish's doc pointed out, lack of anemia is as good a proxy indicator as any.

For newbies the first section is a good read because it includes an in-depth discussion of the difficulty of establishing a true 2-log drop when you only take a couple of readings, each subject to  +-0.5 log variability. You can use it to convince your Dr. to order more tests during the first three months, so you're not left guessing at the end.

If anyone wants a copy, please post a way to get your email.

[willing]

that should be <a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=14996676&query_hl=7&itool=pubmed_docsum">Hadiyannis'04</a>

[FlGuy]

Thanks for that. A while back I decided, maybe convieniently for my rationalization purposes, that the isue was the riba.  I began to subscribe to the theory 'riba til it hurts'.  And in retrospect my hgb never reached those real hurting levels implying to me that I wasn't 'plasmatized' enough.  To take it to the end of my thinking, tx sucked, but it didn't suck enough. As Captain Ramius said in Hunt for Red October referring to the Russian sub on his tail "Tupelov is removing the safety features from his torpedoes, he won't make that mistake again" . And you're right about the obsession.

[jmjm530]

Willing: The worst impact of HCV for me since relapse apparently has nothing to do with health but with the fact that the rest of my life is going to fall apart if I don't stop obsessing over it...
--------
Yeah, know what you mean. Thinking lately of posting some nude pics (not of me) so I'll get kicked off the discussion group :)

But from what I gleaned from some of your older posts, you seemed to do a very good job of getting back to your life after finishing treatment the first time. I sort of use that as my model although it may take time to wean.

But given your interest, knowledge and curiosity, I think it would be difficult not to obsess given your relapse. Still, the rest of life has to go on and hopefully you will find a balance that allows for both.

I've been missing a lot of posts lately (see I am making progress) but wondering if you posted anything about your biopsy? Did you have it yet? Any results? Also what's your take on Alinia and have you done any digging yet? A lady over at Janis has a thread on her experience.

All the best.

-- Jim

[willing]

thanks for the good word. I suspect changes are in order: change my screen name to unwilling, since I've become so leery of tx, and limit myself to one post a week...but no, I haven't gotten  my bx report, Dr & nurse are on vacation. I should probably try to contact the pathologist. Also, haven't found much more on alinia beyond what I posted to forseesnortle below. The results from the mutagenic/teragenic tests seemed like a big plus. I trust you are greeting each new morning with a big, huge, SVR smile...take care.

[jmjm530]

Forseesnortle? Be respectful and use her real name, ForseeVera or is it it forseesk...nevermind:)

Anyway, I like "Unwilling" a lot. Especially in light of what appears to be in the pipeline. With a message like that, maybe you should allow yourself TWO posts a week.

Yes, this morning I had a big smile but the week was actually somewhat tense.

Yes, I posted my non-detect on Tuesday based on a neg TMA. However, I also did a real-time PCR for whatever reason, and figured it would come in later that day, given it only takes 3 days. Only gave it a little thought when it didn't come in Tuesday, a little more thought when it didn't come in Wednesday, but by Thursday I was getting quite nervous when the lab said it was "pending". Started to think maybe the PCR didn't agree with the TMA and they were re-running everything and who knows. Anyway, the PCR fax came in this morning and EVERYTHING is negative. Talking of being compulsive:)

-----
Sure, I'd get on the horn with the pathologist if you want to know. After all, you can proably read the report better than yoru doctor at this point.

All the best luck!

-- Jim

[stangshelly]

new seizure med with little to no sides..lamicatal..comes in diff. pills orally disentgrating etc. lots of good effects with this one..good luck