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94007 tn?1224762736

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!
43 Responses
Avatar universal
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
94007 tn?1224762736
Seizures are from epilepsy, he has mild cp and mild mr
Avatar universal
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
96938 tn?1189799858
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.
96938 tn?1189799858
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.
Avatar universal
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
96938 tn?1189799858
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?
Avatar universal
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
Avatar universal
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.
96938 tn?1189799858
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.
Avatar universal
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

Avatar universal
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.
Avatar universal
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
94007 tn?1224762736
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.

Avatar universal
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).
Avatar universal
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.
96938 tn?1189799858
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
Avatar universal
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
Avatar universal
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
96938 tn?1189799858
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.
96938 tn?1189799858
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.
116701 tn?1210259164
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
Avatar universal
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
96938 tn?1189799858
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.
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