Update on my neurology stuff and other posts

[susan400]

Hi there. A while back I had posted about an unusual occurrance that happened to me.  I new that it was probably just stress and treatment combined, but when I told my doctor about it, he freaked.  On the day it happened I had driven 45 min, went to a court hearing about my son, visiting my son in the psych hospital and then was going to go back to my parents home 45 min. back.  Well, remember, I'm on high dose Riba and daily Ambien 15mcg. When I was sitting there playing rummy (cards) with my son, all of a sudden I started feeling so weird in my head. I was confused, I got a numb right hand, I could barely put words together to make a sentence. When I went to try to dial my cell phone, I couldn't remember how to use it.  Then, when I left my son and went to drive home, my check engine light came on in my car.  I continued feeling strange. Anyhow, I ended up with a bunch of neurological tests. An MRI, EEG and EMG.  They were all normal, but I go back to the neurologist tomorrow for him to do the follow-up. Anyhow, all of this and I still say it was treatment and stress.  I don't handle stress well at all when I'm on these drugs.    Susan

[slowsouthernstyle]

susan400 your a real brave person I treated 3 times and didn't have any luck and said no more I can't imagine doing it 5 more times.

slow

[SJL]

First of all, I would like to communicate with all of you, but to be perfectly honest, I cannot remember everyone & their responses. Believe me, this is a product of short-term memory loss from interferons.

Lilmoma-Oh, how we can all say we have been there & it is not a pretty site. Just remember it takes a very strong person to even attempt this therapy and it does do a number on you. If I remember right, work had presented more than its share of problems. Does your work place know of your illness? I feel that many people going through this, for some reason or other, try to keep it from many people, especially work related. This disease is nothing to be ashamed off & if your work knows you are going through this, I would hope that possibly they would lighten your load a little. I think a little time off is justifiable at this point. Don't forget the FMLA, that it what this time is set aside for. Fatique definitely adds to depression. Then it becomes a vicious circle. The Procrit should help, if not, ask your Dooctor to raise the dose & ask him about Vitamin B12 injections. I have found these to work well & they are very cheap. I am ashamed to admit that I don't know your whole story, but I am just beginning to feel well enough to come on-line pretty regularly. Are you taking anti-depressants? Hang in there-you are an inspiration to all on meds.

Susan400-ReturnToSender-
I hope this is right-the Neuropathy comments. I have just been officially diagnosed with this as a result of the interferons. My feet, legs & my right hand are numb. The feeling comes & goes in the feet & legs. I have fallen 8 plus times as you just don't know when this is coming on. The diagnosis was based on many tests, 2 Neurologists, an Orthopedic Surgeon & a Neurological Surgeon. I am really not sure of any cure, but from what I understand, PT and exercising is the best. I do take Neurotin-but I was put on this as an AD prior to the Neuropathy. Are your symptoms of Neuropathy still there?

Susan-the 3rd. rd. of treatment? I would like to know more. I have done Peg-Intron/Ribavirin (48 wks.) & daily Infergen/Ribivirin (52 wks.)I responded & relapsed on both. I am now on Pegasys maintainence which seems to be working better than the above 2? Go figure.
I hope to hear from you all & will try to catch up with the rest.
Sandy

[susan400]

I don't know if I'm the Susan you meant just now, but I'm on my 8th round of treatment.  3 times was just with the Infergen.  The other times were with other types of interferon.

Susan400

[can-do-man]

Would love to know if your doctor name starts with a K and if so do you feel he's really aggressive. Stage 4 grade 2 here. Thank you

[can-do-man]

Don't forget that chain.

[lilmoma]

You guys are so kind!!!!!!! Thank you for lifting my spirits up.
I got up this morning, took my shower, and tried to "just do it"  but by 5:15 the pulsating bone aches were running through to my finger tips, I called the boss, he did not answer his phone. I left him a long voice mail, he never called me back.
I just woke up b/c my asst. called to see if I was okay. She says "I knew something was wrong, cuz you have never done this" nobody even said a word. All that talk about "dont worry, I will get some help over there for you", thats all it was, just talk.
You people made my day though. What would I do w/o you?!
I need to go do (Procrit shot # 2)hoping soon I will feel some improvement.
I will not be going back to work for a couple of days, I have got to take care of myself,...its obvious "they" dont care.
I think I prolly got this bad partly b/c I was trying to do everything just like I wasnt on tx,,,,,,I didnt want anybody to see a difference,....yeah right huh, pretty stupid thinkin huh?
lilmoma

[SJL]

Can-Do-Man-------No, I am from FL. My ex-husband and ex-in-laws live in Indiana, which was the reason for IU to do the testing.
I do have a very aggressive Doctor though who sits on many Hep C boards, if I can be of any help passing on his info to you?

Susan400-------I cannot imagine 9? treatments? Did I read right?
If so, what are your statistics?

Sandy

[Dale_Ray]

That is such a sweet story about your grandkids. It is funny, I have three and when they come in the backdoor and start yelling Papa, Papa I forget I'm on treatment for a little while. They give me energy.

Miss: I would not work if I weren't so afraid I would lay down and quit. I know me and if it beat down low enough I think I would exit stage right with the sillwy Wabbit.

I very seldom touch a computer on the weekend. I just don't seem to have the get up and go for it. My wife spends a lot of time outside lately in her flower beds and such. I think she feels trapped sometime by these treatments but she has done really well. Probably better than I if roles were reversed.

Stay safe and keep your little ones around you. Dale

[dyce]

Don't fret there girl, I had to leave work early today, just couldn't get it goin. It's not me, it's the medicine , it's a rollercoaster ride. I'll feel alright 1 day and the next down right miserable. At work they still think I'm a machine, I have to remind em I'm not firin on all 8 cylinders. No 1 understands unless thier livin it. Keep your chin up, there will be better days.

[can-do-man]

lilmoma said...Im just a whiney old wimpy woman
----------------------------------------------------------------

No your lilmoma, you know the gal with the strawberry blonde hair? Who was just out showing off a little skin. (bad bad girl) but any who i know who you are and if i know your lilmoma then you must be. Now get you a chain and have lilmoma put on it with your address and phone number. Heck that was one of my conditions of release. Plus my authentic card that proves i'm crazy. (Which is my proudest possesion) Just give people strange  looks, point to your chain and they will see you make it home. Now show me a smile on that pretty face of yours. You are going to be just fine. Just like me.

[MissMiss]

Dale, I was thinking of you over the weekend.  Stayed of the puter til now.  It's funny how things happen.

Last two weeks or so were pretty bad.  In bed more than not, and I am not a nap taker by any means. Rest maybe but no in bed nap.

Saturday started out okay.  Then I tried to nap, big mistake.  Two hours later I am up and having a total meltdown.  Lilmoma, I can relate so well to what you say.  Total blubber coming out my mouth.  My husband quietly just got up and went outside.  Must have cried more than an hour with Janis J screaming in the background, feeling totally worthless and wanting to "just go away from life" to put it gently.  

I started thinking of you, Dale, and some of the rest of you, still working, loosing thyroids, dealing with family crises, raising kids, starting gardens, just plain still trying to live and doing so successfully.  

A couple hours later the grandkids came over and I am on my new fourwheeler riding them around the yard, hurting all over but just loving the squeals of joy when I pushed on the gas for a quick charge.  Lil Bubba at two sitting up there making motor sounds, EmmaLee squeezing my breath away saying "Do it again!".  Life couldn't have been better at that moment.

I'll use that memory for a long time as a reminder why we need to try so hard to get through this awful treatment.  As stated above, failure is an event not a person.  Also, you will never fail if you never quit trying.  

Missmiss

[Dale_Ray]

Good Morning Miss:

Sedentary may not cover it. The absence of the cognitive skills is far more difficult for me. No matter how hard I try to clear my head the fog rolls in.

That is so wonderful that you are so far along now. I'll bet you can see the proverbial light at the end of the tunnel. I'm at 23/48. I'm having a half-way party next week. I plan to sit outside and soak up sunlight. Then I'll need a rest ha!

I hope everything keeps going well for you on your road to recovery. Your Pal Dale

[DoubleDose]

I think that since there seem to have been at least a couple of reported cases of very late HCV relapse (5 to 8 years after achieving SVR), and that these were apparently people on immune system suppressing drugs,... that until we have more research, it might be better to 'err' on the side of caution, rather that acting as if there is a 100% certainty about this 'late relapse' issue.  Whether a group of doctors say that the virus is totally gone, eradicated for good, or a handful saying that it may be now 'in-check' and being held in some sort of passive, or dormant state....none of that really matters until we have proof positive on one or the other school of thought.  You will NOT find many doctors, at this point in time, signing their names to a document stating that the treatment provides a true cure....even though many may still feel that is probably the case.  There is just too much uncertainty, and caution stemming from the growing list of studies claiming to find long term evidence of micro-amounts of living virus in various organs or blood components.  Some of the hard line HCV 'cure' doctors have become a little more 'equivocal' in issues of eradication, and I really think that many are just waiting to see what 'shakes out' of all the research.  As one doctor who I spoke to last year said: "there is a lot more that we do not know about this virus, than what we do know".  He is also in the 'cure' camp, but was careful to state that we may find out about other behaviors for the virus in the future that COULD modify this view.  Although I like to believe that the virus is totally eradicated, I would still err on the cautious side when dealing with immuno-suppressants...in light of the 'supposed' late relapses attributed to these drugs, noted in recent literature.

DoubleDose

[jmjm530]

Hey Goof, I must be in sync with your doc. Maybe you can pop down to the supplement thread and tag onto my response to Rocker. It makes sense that anything that suppresses the immune system must be used with caution, including I guess systemic steroids if that is the case. However, I was told topical steroids (or other topical immunosuppreseants like Elidel and Protopic) were OK for my skin problems.

That said, the one question I would personally ask your doctor would be why is this relevant *post* treatment as opposed to *on* treatment where it def makes sense.

When I asked my hepatologist about the immune system and viral suppression post treatment, his response was that it didn't matter. Either all the virus was dead or it wasn't. If the virus was dead, it wasn't going to come back no matter what you did to your immune system. If it wasn't dead, it was going to come back. I queried a second well-known hepatologist as well. He said if I were to relapse the *only* reason he could think of was that some virus was hiding someplace. Also did not mention the immune system.

One would think that if the immune system was responsible for suppressing virus post treatment (i.e. SVR) then we would see a lot more relapses after six months or a year. Right now the durability of SVR appears to be close to 100% after one year.

-- Jim

-- Jim

[GoofyDad]

Received an email from my Doc - he says to avoid the cortizone for now. His comments underscore another statement I reported him making concerning combo therapy serving to train the immune system. On the steroids, he says:

<i>I would avoid cortesone injections at least for the next few months, avoid suppressing your immune system while fighting to keep the virus at bay.<i>

His previous comment concerned relapses and cirrhotis. His opinion is that relapses come from a compromised immune response rather than virus hiding in scar tissue.

I've always felt that when the virus is easier/harder to treat in like genotypes, it is probably differing immune responses rather than more or less persistent strains at play. But who knows? Maybe it is more a quasispecies thing?

Hope you all enjoy the rest of the weekend.

-- The Gimpy one footed tomatoe planter. Hey, maybe it's a 'planter's wart'.

[OnAPrettyPoison]

Please remember you are not "Wimpy Woman" but "Treatment Taxed Momma" and it does get much better when the procrit kicks in.  When did you start?  I know I was feeling better in a couple of weeks.  It is a shame it takes that long, but the very fact that you are treating, working, not to mention a wife and mother speaks especially well of just how tough you are.  Hang in there, take some time if you need it.

[strator]

lilmoma- Who says you

[susan400]

This is my 3rd time of experience with Infergen.  #1 was back in 1998, back then they did the high dose induction therapy. This is where I did daily dosing @15mcg for 30 days and then, switched to 3 times a week for the next 5 mon.  That was pretty normal back then.  #2 was 18-24 mon. ago and it was an off label treatment with Gamma Interferon.  I was on daily Infergen + plus 3 times a week of Gamma Int. and Riba.  #3 is my current treatment regimen.  My last viral load had dropped to 430 copies, I started off up in the millions.  This is a big drop, that's the good news.  The bad news is that I'm already to the 9 mon. point and I'm still not undetected.  In any case, I'll finish out the 48 weeks. After that, if I haven't cleared, I'm going to stop.  I've had enough. Also, it's too expensive with all the co-pays.  I'm going to ask for an order for a  viral load test when I go in for my next appt. on May 1st.  So, by my 10th mon on May 15th, I hope that I at least get to hear the words 'undetected' for once, even if it doesn't last to an SVR. I'm not interested in any clinical trials at this point in time.  And when I get done with this treatment, I don't want to be starting up again any time soon.  I'm so ready to quit.
Susan

[OnAPrettyPoison]

Stress and treatment is a nasty combo, and you have had more than your share of both.  I have a friend who had breast cancer and was on some really rough chemo for close to a year that has had some nasty residual neuropathy - she just falls down without cause or warning.  She has been off about a year and says she has some "brain burps" but all in all they are getting better the farther she gets away from her treatment.  She is also working with neurologist to address the falling down, and is optimistic that that may resolve itself in time.  All in all, she is a might lucky lady.  Good luck - may all your tests continue to come back with good results!

[OnAPrettyPoison]

Stress and treatment is a nasty combo, and you have had more than your share of both.  I have a friend who had breast cancer and was on some really rough chemo for close to a year that has had some nasty residual neuropathy - she just falls down without cause or warning.  She has been off about a year and says she has some "brain burps" but all in all they are getting better the farther she gets away from her treatment.  She is also working with neurologist to address the falling down, and is optimistic that that may resolve itself in time.  All in all, she is a might lucky lady.  Good luck - may all your tests continue to come back with good results!

[DoubleDose]

When I did my first round, using daily Infergen, I found that almost anything could happen...dizziness, numbness, vertigo, loos of sensation, feeling disoriented, and removed from the situation, and in some cases I felt like I was going into a coma.  Luckily, all of these horrible occurrances passed in time, and usually they were a result of me pushing myself too hard.  I even did a long business trip, pulling two large pieces of luggage through airports, and meeting with executives in a major corporate HQ, while I was early into my daily high-dose Infergen regime.  I truly felt like I might not return from that trip, and realized that I was nuts to attempt it at all.  But it ended up working out, and I guess I faked it well enough...and ultimately completed the assignment successfully.  I felt somewhat out of reality, maybe even a little psychotic, at times during that trip, and also, without Procrit, really felt like I was going to expire when doing the physical stuff in the airports.  That's a trip I will never ever forget!

I think what you experienced is part and parcel of the high dose daily Infergen experience, as well as the extremely high Ribavirin dosing you are doing.  

Bottom line...if you get your undetected, it will be worth the risks and hellish experiences....and you will feel much better about finishing out the course of tx.  If you do not get the undetected, you can stop...and recuperate.  Hopefully no long term damage will have been done.

We are all pulling for you, and really hoping for a near term undetected PCR.  Best wishes to you!!!!

DoubleDose

[friole]

How long has it been since you started the Procrit?  It will help, I promise.  Will it jeapordize your job to take a few days off?  I know you don't want to, but you do physical work and it might be best to take a couple of days off.  Jim offers some good advice here.  It is not you, it is the drugs.  It will be better.  I hope you can get some good rest tonight.

[tulsatime]

Hang in there. I will say a prayer for you.
        God bless

[susan400]

Lilmoma,

I'm sorry that you're feeling so depressed.  I know the 'old-lady blues' feeling.  I'm only 44 and yet, I feel like I look like I'm 70.  Although, I realize that this is not true because other people say I look fine.  But, when I see my thinning hair and dry skin due to the treatment, it's hard to convince me of that.  Also, feeling so tired and dragged out all the time makes me feel 'old'.  All I can say, Lilmoma is that it will get better.  I've treated and then, been off the meds, too many times to mention and trust me, being off the meds feels fantastic when you realize how bad you feel on the meds!  It makes you appreciate the 'no meds state' so much more

Susan