HEPATITIS C COMMUNITY
Only one oar on this boat, or up s### creek...

Only one oar on this boat, or up s### creek...

I can't sleep again. Never thought I would wish for that sleepy anemia again. I went to my Hemotologist and PCP today. My hgb is almost normal, but my Neutrafils are .8 down from 3+ last week. My hemo gave me a neupgen type drug and not the Aranesp for HGB. I am to watch my own blood counts and call when they are below 12 HGB or under 1000 for abs Neutrofils. I asked who I should talk to about sides and he told me the GI. I told him I was seeing my PCP to talk about sx's since GI seems unaccessable and not very helpful. Hemo explained some reasons for sx and helped a bit, not really his job. My PCP and he work together once a week. He even knows who I am! Wow!

My PCP, whom I love, was very perplexed. He said he didn't know much about these drugs or sx. I told him how my GI didn't know I was on tx twice and never explained drug interactions or anything. PCP referred me to GI. He was nice and tried to help, but obviously I knew a bit more, thanks to all of you, so he relied as much as he could on my info..Not sure that's a GREAT idea, but what I told him I did know. He would ask me what sx came with this and what to tx them with. Scary huh?

I told him about the PPI's and H-2's and antacids as best I could. He said, "when did you find out about the Riba not absorbing with Maalox by 14%?" "Today", I said. Thanks to my forum support group. He told me he was worried I wasn't getting the right care from the GI...NO S**T SHERLOCK. I told him 5 weeks I will have my 12 week PCR and perhaps switch to a Hep DR. Boy, he uneasy. He said GI should be monitoring
me  more closely.....
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You know most of us have had to get our docs to prescribe sleep aids at this point. I can't TELL YOU the difference Ambien made for me.  

Having a doc who has a CLUE is the most important thing in the world. Your doc should be on top of everythng and proactive.

I would NOT wait to find a new doc. yes I do know what a hassle that is but all YOU really need to do is find one = and they will get all the paperwork and stuff for you.

You really just need to call.

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I was thinking about using a sleep aid , I never sleep and I'm getting REALLY tired , but my question is , do any of you feel that morning sleep hangover from the sleep aid? Sometimes I think I would rather sleep 2-3 hours at a time , like I am now , than to sleep all night and have to deal with the hangover in the morning.
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As you start aiming for the end of this part of the adventure what kind of post-tx attention will you have to do for your thal?  Is it just something that you live with or is there some sort of treatment that you need to follow?  What did you do regarding thal pre-tx?  And, does all you tx follow-up stuff (cbc, pcr) take place in Fl?  I got a little lost in your countdown with Algae, is you last shot this weekend, or next?
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I was given xanax for being a "b" which isn't normal for me.  I wasn't taking it because just the action of walking to a pill bottle when I was in a bad mood seemed to snap me out of my little "fit"  Anyway someone on here mentioned taking xanax or half a xanax when you can't sleep (I think foresee not sure but thanks).  I ended up doing that one night and it worked well.  It's not a sleep aid so I didn't feel anything in the morning.  So now if I feel restless I will just take the xanax.  Usually about 2-3 times a week maybe.

I haven't tried the sleep aids so I'm not sure how those feel.

deb in az
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I have NO sides in the morning from it at all.  The Ambien works great for me it doesn't like knock me out at all but when I lay down I fall right asleep. While I do wake up a few times during the night I am always able to go right back to sleep.

Also taking the majority portion of Riba in the MORNING helps since the Riba is one of the things that keeps us from sleeping (I take 3 in am, 2 in pm).

I would definitely advise trying it. It's helped me so much. I make it to work no problem at all = no hangover nothing.

Sleeping will makeyou feel 10000x better - I guarantee it and remember before I went on it myself, it was horrible!
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I got on the Ambien bandwagon a little late.  Wish I had pursued it sooner.  Like you, I was sleeping in 2-3 hour increments and catching up on the weekend. There is no doubt that ambien let me get 6-8 hours of really refreshing sleep and avoiding later-week sleep deficits.  In my experience, there was no ambien hagover as long as I took it by 9 pm.  Did not use it nightly, probably 2-3 times a week.  Some shot nights used tylenol pm as a replacement.  Need to get rest on these meds and the whole hcv thing is a brain and emotional drain. "To sleep! perchance to dream:--ay, there's the rub"
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sf -unconcerned GI's - that is what I have dealt with too.  If it wasn't for this forum, I would be lost.  Since my sides haven't been too bad, it has not been a major concern, but thank goodness for the hemotology nurse.  She does not know anything about hep C, but asks questions because she want to learn.  I vent on her since I see her once a week - and tell her she is my only medical support.  I am sorry - cn't help with the sleep problem or stomach problems, all I can do is commiserate about the medical care.  At least you live in a large city and can seek out a hepatologist.  I too recommend changing now.

az - how is the shoulder today?  I had terrible pains in my left shoulder for a month, but I truly think I slept on it wrong when I was sick (and slept for 3 days).  I just took lots of Tylenol and it finally went away.
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Sfgirl,  sorry to hear you aren't sleeping. I had to deal with that last week. mine was from anxiety since I haven't started treatment yet.  I had to go to the primary care doc last week because I thought I was having a nervous breakdown.  I was worrying like crazy, felt shaky and just had this awful feeling of doom.  Can-Do-Man helped me through some of it with words of wisdom.  He is so kind like many of the other people here.  Anyway, the doc said GAD is what I have, and I really don't have control of the chemicals in my brain. I've always been a worrier.  Anyway, he prescribed Celexa which is an AD and Ativan. I am finally sleeping.  I feel for you because it stinks to not be able to sleep when not treating, so I can just imagine on treatment..  Only thing with Ativan, it is addictive.  Ambian supposedly is not.  Once the Celexa kicks in, and I am still having problems sleeping, I am going to request Ambian. My friend is an international flight attendent and she said her co-workers swear by it.  They can actually buy it over the counter in the UK.  She did say you need 8 hours sleep.
Pam
Hey NYgirl!
How are you?  I read your post that you got out over the memorial weekend and had an enjoyable time at the lake.  That's great!  I hope you are well.  I always like to read your posts because you are so upbeat and have a positive attitude.
Pam
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Hey how are you doing?  I've been trying to read up on everyone but it is getting a little difficult to keep up.

The pain is getting worse in my arms.  The weird thing is it is in my upper arms both of them in the exact same spot.  I called my gastro and she said it's no side she's heard of so it must not be anything to worry about (just lost a lot of respect for her on that one) she recommended doubling up on my xanax...... WHAT?  So I am calling my pcp today and looking for a nuerologist and go from there.  I haven't had the blurred vision anymore so I am going to attribute that to fatigue.  I am getting concerned about my arms since my husband has to help me get dressed and undressed since I can't pull my shirt over my own head......ugh that's no fun....except it is kind of fun having him undress me again.... : )  it could be quite frisky if my arms didn't hurt..... ahahahahaha

I hope you are doing well.  How much longer do you have?

deb in az
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"For in that sleep of death what dreams may come"
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My wife brought me a hugh cinnamon roll from cinnabun last night.
I'm going to go nuke it for 45 seconds and smear butter all over it. I'll see ya'll later.
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That line is why I'm here.
45 seconds? That seem a little long.  Can you finish a whole cinnabun?  Even in hungry moments I can't eat the whole thing.  Careful, NYG might try to grab it away.
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Yes,,,,you need to get some rest and that would help alot.  I took ambien while on tx and worked great.  You don't feel yucky in morning when waking.  However,,,even on tx,,,I would automatically wake up around 3 even with ambien so I would cut 1 in half and take half when going to bed and at 3 take another half,,,get on computer for a little bit and then be ready to go back to bed.  Hope you do find some answers and a new dr maybe a great idea!

Az,,,Sorry to hear about the pain in your arms and I have not heard of that either from the tx so glad to hear you are checking into it more just for safe precautions.  I agree that the xanax can take the edge off a bad day but 2???  haha  You would be carrying me around,,,I'm afraid because 1 does tend to make me kinda sleepy! lol  Hope you get some relief soon on your arms!
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My PCP gave me some Sonata for sleep, but I didn't pick it up. Stupid! He told me to take Prilosec as it is a PPI and already gave me pain meds. He didn't even know the sx for these drugs. He did the best he could and at least I have resue drugs. Any advise?
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Sorry you're not sleeping well and having all these problems. I hear ya about the anemia -- the only good thing about my anemia was that it allowed me to sleep like a champ!

Piecing together your story, I'd advise you not to wait for your 12  week PCR, but to seek the opinion of another doctor as soon as reasonably possible.  Best you see a liver specialist (hepatologist) who has experience treating large, hep c populations. You can usually find them at your larger, teaching hospitals. You don't want to remain with a doctor who is inaccessible and unaware of your prior treatment history.

Prilosec is an OTC version of Nexium. The only downside is that Nexium might be covered by your medical insurance while I assume you'll need to pay out of pocket for Prilosec.  It's a standard PPI and therefore should not intefere with ribavirin absorption.  Most do fine with one Prilosec a day, but others like myself, who have Laryngopharyngeal Reflux (LPR) require two pills a day (1 every 12 hours).
http://heartburn.about.com/od/gastrictractdisorders/a/whatis_LPR.htm

Also, I would't worry too much about any antacids you've taken in the past, because it appears you mostly used H-2 blockers and also because no clinical significance of antacid use during treatment has been established. Still, moving forward, personally
I'd space any antacids away from the riba to be on the safe side considering they do reduce the bioavailabity of riba to some degree.

All the best.

-- Jim
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Sorry your having all these problems, know your not alone with this.  I agree with Jim and hope you seek out another hep dr as soon as possible.  Let us know how you make out.

Beagle
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4 extra riba? You need to get yourself a pillbox, girl.  Have you had a cbc lately - how's your hgb doing?  Look's like your 'c' is going the way of your 'L'.  Better get that fixed because when you tell us you are clear we may thing that you have hearing problems.
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WOW I never even THOUGHT of Cinnabons!!!!!  Holy COW you people wait until I have a dead thyroid to say these things to me when before I could have nuked the cr*p out of ten of them and never gainned a pound!  AHHHHHH my GOD I might have to grab that one away no joke!

The WORST thing about this treatment is my severe and debilitating need for SUGAR since I started.  I can't stand it anymore...the sugar craving has just got to go and cinnabuns wow sugar sugar sugar especially when washed down with a fudgicle!


So seriously I don't even want FOOD anymore all I crave is ice cream, cake, coffee loaded with sugar and 1/2 and 1/2 - this is just GROSS I have to get over it before...I need to up my Riba (and we all know what that means)  ;)
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Didn't the alien 'bug guy' from Men in Black have a sugar jones too?  This is the guy who had those roaches falling out of his sleeves.  You may have something there with the sugar.  Anything to get rid of the bugs.
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Thanks for all your support! I really don't know what I would do without this board, especially since I have to rely on you for what's important in tx and sides.

I got to sleep and woke up with a horrible headache (again). These are REALLY getting old.

My GI just called and said he wanted to reduce my dose of interferon b/c of my low WBC to half. I said NO. The labs I did a few days ago reported that Dr. would call, as this is extreme. This is why he called. I told him I had gotten a booster shot and wanted to see how it works. I told him I had seen the other two Drs. and that they had taken care of a few sx. I need a chest xray for my shortness of breath and said the sx are kicking my behind. He says, "this is normal." DUH. What can he do for me though? He said to call, but all I hear is, "Nothing I can do" or "normal". I thought when he called it was b/c of my PCP, but it was the labs. At least ghe called

My husband is so mad he wants to write a letter on his lawyer letterhead to tell GI he is NOT taking care of me. He yelled all the way back from PCP yesterday.

I agree, I need to find a new Dr. someone mentioned Dr. Gish in San Francisco. I looked him up on the web and he mostly does transplants. Is this what I want? Anyone with any other Dr's near here. I will call USF. Does insurance cover this? My plan says I go to specified dr's.
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You guys will love this. When I orginially went to him for Hep C (he had done ECRP and colonoscopy already) the only sx he mentioned to me was depression. He told me I had to have AD's. He had a patient commit suicide.  Hubby said probably because he is never around!
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Thanks for your comments, and great support and help over the last year.

The hair didn't fall out on my head. My eyebrows got longer and my body hair got long and straight. My riba rash seems a little less itchy right now - perhaps because the winter has passed and the air isn't so dry on my skin.  Anemia really has me tired out.

I don't think I'll fly because my license isn't current and I'm sort of financially challenged right now.

I'm just going to take it easy and enjoy the spring and summer and see how it feels to be off tx.

I'll post any news - how my PCRs go, etc. I wish everyone the best.

Bob
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Thats a good idea on nights when i know im goona need the ambien,because its usually 2 or 3 when i wake up always even before tx...
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Hi,
The group I am going to are transplant doctors.  They are with a transplant clinic.  However, they are suppose to be good with treatment for Hep C as well.  I hope you start feeling better. My thoughts and prayers are with you.
Pam
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Flguy- I hear you! Delegating docs for certain things-I figured that  out yesterday and am doing it. I am NO doctor and should have a team of drs that advise ME, not the other way around. JmJm and others are great on deciphering all the research papers. Many of them are Greek to me. So it feels like the blind leading the blind.  

I am NOT cutting back my interferon and told GI so. He is so meek he didn't say a word. If I have to live in a bubble, so be it. Even my 6 weeks of tx was too much work to give up now.

NY- I only want sugar too! Seems to be my main staple these days. I NEVER ate sweets before. Now I am buying cheesecakes and ice cream like no tomorrow. Luckily I lost a lb, as of yesterday. Whew! I was sure I was really headed upwards. I don't want to hear about thyroid. Maybe next week I can.

Just a "normal day" in this game of Jumanji we are all in.
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Sorry your having it rough. If you can drop an email addy I can send you some contact info for a good SF group. Careful with that addy though...

Ambien is your friend. No hangovers after 7 hrs sleep, and best of all it kicks in in like 15 mins.
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Thanks! I could use an addy, why be careful?  I have lots of hospitals around, so hopefully that is good. I have such brain fog that looking things up is tuff on the brain these days. Linda and cal on the sbcglobal dot net is where I am. Thanks again for some names.
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I never ever was a sweets kind of person either in my LIFE.  I figure this has to be some sx that nobody talks about because at first, losing so much weight it didn't seem like a problem but now...that I'm NOT losing anymore (lost 20 pounds the first 3 months of tx and was skinny to start) = the weight is coming back with a VENGEANCE.

And yet I can't STOP it just wont happen...for lunch today I had a frozen yogurt, a cup of pepsi and a piece of watermelon. All different sugars! I totally didn't even LOOK at the food (except I debated lemon meringue pie too).

I've had to call my doctor and tell him ideas that I've read and talked them over (ie: taking the mfg recommended instead of weight based riba). When I have he has listened with an open mind and most often agreed to what it was that I wanted. It's like he agrees that while he does know alot he is always willing to think about new things and see how they go.

For example I told him how I discovered using Gold Bond for the riba rash. At first the thought I was crazy...but then he advised it to someone ELSE and it helped them a lot.

So now we have a give and take sort of discussion relationship where he knows the STANDARDS and I let him know what people have found in here...if it's something he has not heard of he will research it out and if it's something like the Gold Bond he can advise OTHER patients on it.

He thought I was a loon at first but now - he thinks I am smart hahahahahaha I tricked him good!
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Hey I would have gone for that merangue pie too! In fact in makes me want to roll down my mountain and get some. I NEVER ordered dessert or made them, except for others. I agree, it's got to be a sx.

My PCP sure thought I was smart.  Of course when you know nothing about interferon or riba it makes it hard to count on your own expertise as a doctor. As I said it feels like the blind leading the blind!  Scary stuff. I better get my thinking cap on and read some of those Greek research studies. Then I will REALLY impress him with my gibberish. LOL
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I am doing well, thanks for asking.  I know what you mean about trying to keep up with folks.  It is hard. So many that started with me have dropped off the face of the earth, it would seem.  I would like to hear from Cougareyes, NorCalMom, 2Irish, jaroman, pasoperson...and some other folks who were supposed to be finishing up about now.  What are you guys up to?????

I am doing #47 tonight, but have opted to extend for 8 more weeks because I was ever-so-slightly detectible at 12 weeks.  Not really wanting to go the whole summer, but my sides aren't too bad and I think I can do it.  As a 1a, I figure I need every advantage I can get.  

It is odd that you have these pulled muscles or whatever on both arms.  I think the neurologist is a good idea. So how is the expanded business, your son, and everything else (other than having to have help getting dressed?
Kathy
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I can tell you from experience the person who cares the most about your disease is you and that is why we really all need to know the basics on our disease = so we can look out for ourselves.  Make sure the doc is doing his job. Not that we should have to but unfortunately ... we do.

My PCP ... one reason I am GLAD I pay attention and then go to people who know more than her. She said I had NO fibrosis.  Report is stage 3. Said I had no reason to go to an Endo regarding my thyroid it was fine. Endo says it is significantly damaged and significantly hypo. On and on.  I have saved all of the letters with all of her results written out = they are all wrong.  My GI well he CALLED me on the phone when I got my UND, she would have "written".

Because she has only limited medical knowledge or something and is not an expert I never trusted her much with stuff aside from writing a script for an antibiotic or some such - and I'm glad I didn't.

I would probably be in my grave by now if I had!
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keep an eye out for incoming....
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AZ-regarding your arm pain, please put this high on your priority list. I suffered with numb feet & legs, causing 8 falls last year & a numb right hand, so numb that I was dropping everything. I have an excellent Hepatologist & PCP, we all communicate & felt that it was the interferon, but because it came & went at various times, elected to continue therapy. I too had all available sides their were, so it was hard to tell what was what. So, after 2 rounds of therapy, Peg-Intron/Riba for 48 wks., Infergen/Riba for 52 weeks, responding and immediate relapsing, after extensive Neurological testing, I have been left with Neuropathy of the feet & legs & right hand. Their is no way to know if it is reversible, but I am taking P/T, plus Neurotin and it appears to  be getting better. My left leg was so bad that I couldn't even raise up from a sitting position without incredible pain. This is one of the sides that can appear in all interferon patients, but is supposedly quite rare. Anyhow, I just wanted you to know my experience and to watch yourself closely.

sfbaygirl-the insomnia seems to be a real problem.I feel incredibly sorry for you as I can tell you my experiences. I was on Ambien for approx. 3 yrs., nightly.
I would fall asleep for maybe 30 min. & then wake & would immediately seek food, not realizing it. I would also carry on conversations with my granddaughter when she would come home from work & not even remember what was said or that I even spoke with her. About 6 wks., ago these same instances, plus other experiences, like driving the car in the middle of the night, were documented & the press covered the story (Thank God, because I thought I was going crazy), and their now is an active lawsuit against Ambien. So, I would beware. Obviously it only happens to some, but it has been a very dangerous drug for others.I then tried Remeron & still was not getting good sleep. I am now on Restoril, it works, with no adverse affects.
As for Doctors, I followed your routine the first round, going to a Gastroenterologist, who knew literally nothing about the disease. I consider myself wasting 48 wks.  I then took a 9 mth. break, returning to work and researching extensively. I found an excellent Hepatitus (hepatitis) C Doctor, continuing on round 2. He has managed my case, taking it to many research meetings,as he heads up many boards, and after 6 consecutive non-detectibles, I still relapsed. But, I know that we tried everything & I was given every AD needed to continue on with the therapy. Dr. Schiff, University of Miami was even conferenced. I am a 1B. Find yourself a qualified Doctor immediately, who knows about hep C & is treating patients & continues to research. Treat it as if you are interviewing them for the position. Good Luck & I know you will find a good Specialist and the world will look better!
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I did shot #47 yesterday, Thursday. Today is almost over, so I figure I've got six more days of tx. My doctor said I should stop both riba and peg on the same day. Next Thursday will be shot #48, my last shot, and I'll take my last riba with dinner next Thursday evening. Then they'll give me a PCR in three or four weeks. I've been undetectable <50 since week 12.

I'm so happy to be at the end of tx. I hope I get SVR, and I guess I have a good chance at it. I'm genotype 1a. If I don't get SVR, I'll wait for the new meds in a few years. My biopsy showed stage2 so I have a time. I hope I have SVR; it's hard to believe it's really possible.

I'm very tired of treatment - I'm sick and tired of feeling sick and tired. When I was new to tx, each new side effect was a novelty, now it's all just a real drag. The last few weeks have been hard because I just want to be finished with tx. Treatment has been very "doable" for me, and I'm very glad I did it, now I'll just let go and let God.

Thanks to everyone on this forum; you've all been a great help in so many ways.

Bob
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I am so glad you responded. What were the drugs they were giving you? According to the neurologists reports, my neuropathy was caused by toxic substances, which could only be caused by the interferons. This is why I cautioned AZ. I am definitely not down on treatment and I encourage everyone to try it, but have your plan in line. Take time to find the right Doctors and do not just become another Joe Blow to the Doctors.
I seem to really get off target with my answers, but I sure do appreciate it when someone answers, regarding anything. Thanks Kalio.
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I just returned from a lunch with my Congresswoman, Ellen Taucsher. She is very interested in VA rights and NiH etc. I talked to her about Hep C and awareness. I am feeling awful at the moment but wanted to get this out. I will fill you all in later. Since I know her personally and consider her close,(She married John and me last summer) I thought it would be great if we all, or a few, wrote our concerns for congress regarding Hep C. She supports us, but maybe we can give her ideas.  Anyone who wants to write a letter or a list, whatever, I can give it to her in a week or so when I see her again.  Check out to Goofydad C29 to contact me on this thread. Maybe we can collaborate on one good letter that we could send others in Congress too.
Anyone have sx from neulestra(sp) like Neupogen I think, the rescue drug for my WBC?
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Congrats on getting almost to the goal line.  I am sure you feel like you have run one hell of a race, and you have.  Sounds like you will be a SVR.  Keep us posted.
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You almost done yeppie, im 1a also clear at 12wks please keepus informed about how everythings going , how did your hair make it through?
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Excellent Bob. I'm so glad for you getting to the end. I remember that way back you mentioned being very down when we may have met at the support group. You certainly have been a great example of walking the walk to me, in all things. Thank You for the advice on recovery.
You gonna take time to do some flying or something you really enjoy?
I wish you well,
Don
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In the event that you don't get a new tx doc, you might be able to set expectations on each - the PCP, GI and the Hemo. Tell the PCP that he will rx stuff for the sx's: sleep aids, ad's and any headache, skin stuff.  The hemo should deal with the cbc stuff so that doses don't get reduced - mainly Nuepogen (aka Filgastrim) and hgb stuff (EPO, Procrit, aransep) and the GI writes scripts for the tx meds, pcrs, liver panels.  I assume that your hemo has a cbc machine right there in the ofc and gets immediate results from the cbc so thay can apply the 'rescue' drugs on the spot.  If the docs don't seem to be on top of the ins and outs of tx, you might have to just lead them along.  Never accept dose reduction as the first alternative.  One of the best things my GI did was to hook me up with a hemotologist/oncologist. Went there almost weekly week, saw only the tech (who got instructions from the hemo doc in real time).  They were more aggessive than the GI.
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Neuropathy sounds awful. I have never been diagnosed with it, but from the sounds I hear from you I hope I don't get or have it.

I have had feet, leg, arm, hand numbness for years due to nerves in my back and neck.

When I had a surgical procedure 10 years ago, I got septis and joint pain that was unbearable. I ended up in the hospital where they tried to figure it out. I was fianally diagnosed with Hep C. My symptoms were severe pain when moving any limb or trying to get up. It hurt to bend my arm or legs or fingers.

I was released a week later, in a wheel chair, I could hardly walk My BF had to almost carry me to the bathroom. It was SO painful. I never figured out what that was all about and the pains went away. My hands and feet go numb from nerves, but nothing like that time.

Lately, I have been feeling numbness in both arms, no pain, just there. I have some deep pain in legs or muscles that I am not sure what it is.

I hope I NEVER have to go through that pain I had 10 years ago, that is my biggest fear.

How do you know if you have Neuropathy? I would like to be on the lookout for it. What do they give for tx?

I think that, if it happened again, would be the only reason I would consider stopping tx.
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Sent you some info on CPMC Fri AM. Let me know if you didn't get it.
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Thanks for the info, I got it yesterday after our fundraiser. I slept for four hours afterwards and woke up feeling lousey. could it be this Neulasta?  

Look for a responce to yours. It should be there.

Aren't you glad we aren't in NY? Beautiful weather here right now.
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Yupp. The weather's delightful. Off for the final little league game now. I did the Neupogen, Neulasta is a longer lasting pegalated version. Some people react poorly to the Neupogen, I imagine with the Peg it could be that much worse. Maybe next time you could try the Neupogen, but it lasts less than a week I think.
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