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Problems with insomnia and pain

My husband has Hep C and I am trying to act as his advocate.  He continually complains of joint pain, right upper quadrant pain and sleeps no more than 2 hours per night.  We have spoken to our Primary care Physician and G.I. Doctor.  He was prescribed Ambien, and it helped for several nights, but is now not working.
We are still in the staging portion of diagnosis.  He also has iron overload, and there has been mention of a theraputic phlebotomy.  His fatigue has him in his chair most of the day.  He is unable to work and we are looking into disability.  I am in need of some information on medications to help his pain and sleeplessness.  He has been told no advil or asprin but may take 1 350 mg. tylenol every 4 hours.  This isn't helping, and I am concerned about his quality of life.  We mentioned this to Doctors, but they don't seem to get it!  Any suggestions?
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233616 tn?1312787196
same thing happened with me an ambien, I had to add remeron to the mix, and now sleep again, thankfully, about 10-12 hrs a night...which is very helpful with this disease.

the tylenol is not recommended for liver patients.
if you have no history of drug abuse the doctor may be willing to give you just the oxycodone (the actual narcotic in vicodin).
I take half of a 5 ml. tablet at a time. Usually no more than twice a day.
sometimes I also take one 50 mg tramadol at bedtime if my spinal cord is throbbing and won't let me sleep.
the important thing is not to use anything you don't have to, or that doesn't work, and keep narcotics to a minimum as well, as they have been shown to increase fibrosis.  There are always going to be trade offs to get to quality of life. If he is in a lot of pain, he needs more than a tylenol. Tylenol is one of the least liver friendly drugs, and also has almost no pain control benefit beyond the most mild of pains.
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264121 tn?1313029456
A few things.  Foremost, its lovely that your husband has you to help him through this difficult time.  Hep C is hard for both patients and their families and your loyalty to him and care for him is wonderful to see.

I have a firm rule of thumb when it comes to physicians.  If I have one who won't help me with my problems I get one who will.  Doctors put their pants on one leg at a time just like everyone else, and although some physicians are brilliant and wonderful, others seem to have problems just getting their zipper up. Your husband has a right to live a life as free from pain as possible given his medical circumstances.  I would check around your area and see if you can find a pain clinic.  Frequently they can prescribe a stronger analgesic that will work and that will be safe for his liver, and they are more comfortable doing so than some other physicians.  Chronic pain, I might add, frequently makes sleep difficult.  My treating physicians were not into pain relief, so I went to a pain clinic while treating and it helped me a lot.  I no longer need that medication post treatment but I'm sure glad it was there for me when I was hurting.

There are also many different meds on the market today to deal with insomnia, and due to differences in brain chemistry, different folks are helped by different types of sleep aids.  His doc should be trying something else if the ambian is not working.  I do agree with some others that depression could be playing a role here as well - although that would, of course, need to be assessed by a physician.  Some antidepressants, such as tarazadone - just to name one off the top of my head - can also help with sleep issues in addition to helping with mood disorders.  Perhaps a combination of an antidepressant like that coupled with something like seroquel or lunesta, or some other sleep aid could work wonders for your hubbie.  It really does tear the body down further when one cannot get sufficient sleep, and I think we can all agree that two hours per night is hardly sufficient.

Also - you didn't mention what his iron or ferritin level is, but if he is going to treat his hep c at some point, it would be good to get the iron level down first (dependent upon how high it is - I am assuming it must be fairly high since his doc brought it up).  The doctor is correct that phlebotomy is really the best and safest way to accomplish the lowering of high iron levels, but if your husband's red blood cell count (hemaglobin) gets too low for that, there are also chelation drugs that can be used to lower the iron.  Because of the damage iron can do to the organs, its possible that his physicians may want him to lower his iron level regardless of whether or not he is going to be treating his hep c in the future.

I am also curious, if you don't mind sharing, about the etiology of your husband's iron overload.  There is sometimes an issue with iron overload in some hep c patients, but its thought that it may be due to other factors in combination with the hep c, and I was wondering if your husband has been tested for genetic hemochromatosis and given his symptoms - particularly his abdominal pain - for porphyria as well (of course, hep c can cause abdominal pain anyway, but I would definitely want to know for certain that he doesn't have porphyria as well given his history of iron overload and abdominal pain).

You mentioned that your husband has a g.i. and a primary care physician.  I cannot stress strongly enough that with his medical issues, he needs a hepatologist as opposed to a g.i., and truly, a hematologist as well (since a hematologist will be better equipped to deal with his iron overload once the cause of the excess iron is found).  The hepatologist is the most important though.

Also, given his extreme joint pain, it would be helpful for him to have a good hepatologist who will test him for inflammatory or rheumatoid arthritis and also for cryoglobulinemia (if that hasn't been done already).

If you let folks here know what part of the country you are in, they can give you the names of qualified hepatologists in your area, and dependent upon where you live, some folks may know of some hematologists in your area as well (if not, your hepatologist can refer you to a good hematologist).  So many of us who started out working with gastro's realized belatedly (myself included), just how much better off we would have been under the care and expertise of a hepatologist.  A gastro can seem nice and wonderful, and may, in fact, be a very good physician in his or her field.  

However, a hepatologist has so much more specialized knowledge about the liver.  Your husband's situation is a bit more complicated than most, even, due to his iron overload.  This makes it doubly important that he is assessed by an actual hepatologist.

I also just think that given all of his symptoms, and his iron overload, it would be a relief for a really good liver specialist to assess him so that you both will know exactly what all you are dealing with in terms of his disease course.  It would be nice to know, for instance, if he has any ancillary medical issues that also need to be addressed.  Some medical issues can be caused or exacerbated by hep c.  Likewise, some pre-existing issues (such as a genetic predisposition/mutation for hemochromatosis for instance) can actually accelerate the course of hep c in some individuals.  An entire health workup by a doctor specializing in hepatology is just very important.  

I wish you both the very best, and I would also just like to say - bless you for being such a caring and attentive partner when it comes to your husband's healthcare.  Unfortunately, it is not always the case that folks have spouses who are so invested in their care.  Its a nice thing to see.
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Avatar universal
i got hep c in early 80s during the rony reagon coke party. quit doing that **** and quit drinking for year i began getting fatigue witch became extreme i still however didnot know i had hep c i thought i messed up my endorphines somehow  i was a supervisor at work and i could just barely get threw day went home hit couch the guilt was worce than the fatigue i took some vicodon for something else and had this wave of normalcy experimented and discovered it totally fixxed me now then a friend told me abouit the book opium for the masses and i drank poppy tea for years the diffrence was from being a slug to building my own log cabin starting 2 businesses all while i worked 48 hrs a week now i got the poppys online at first it cost 2 bucks a day then the price went up so i went to methadone clinic it works almost as well except you gain weight  and bloodpreasure went up but it was at the clinic years after the fact i dicovered i had hep c now opiate addiction is no picnic but if the opiates are available and you do low doses it makes life amazing again also the whole time 11 years i did opiates my liver #s stayed low i am detoxing now because of a pot charge my liver#s went threw the roof every doc i tell this story too treats me like a junky cause i had to take my opiates every day and at the same time prescibe me bloodpreasure meds that i Quote had to take every day or i would die we live in a very screwed up country when it comes to drugs unless someone can make a fortune  
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Avatar universal
i don't quite understand the whole website thing, but i could use a few friends when it comes to this whole hep c thing. diagnosed in 2002, and everything is supposedly fine, but am i missing something?  should i be seeking help as far as medication goes? my alt's & ast's are in the 50's range and most evrything else is ok. should i leave it alone, or should i be doing something about it?
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Avatar universal
Two tells mentioned oxycodone, in remembering medications thats like tylox, percocet and percodan.  Does it have tylenol in it?  Would like to find out more about medications without ibuprophen, asprin and tylenol, that anyone has had experience with.  Without looking it up, I wonder if the opiates are less toxic to the liver than other meds.  Does anyone know?
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Avatar universal
Dave,,,Glad to see you back and undectable also!  I knew you were in the tx for the long run and wondered how you were doing and getting along because you disappeared on us.  I wasn't even sure if I had your right address but so glad you are through with tx and hope that you will get relief soon from your pain! Welcome Back!!
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Avatar universal
Cryoglobulinemia means cryoglobulins in the blood.  These are unusual immune proteins made by the "B" cells in response to HCV. Most of the people who get this disorder are people with chronic Hep C, but even among us it is rare.  I've heard numbers between 1% to 5% of people with HCV.  When the test for it (Cryocrit test) shows a high level (mine was above 7) and there are symptoms (70% get peripheral neuropathy and 30% kidney problems, it is called cryoglobulinemia.  Apparently, these proteins are not kind to the medium to very small blood vessels (like those which feed the neurons).  In my case, the pegasys made the condition dramatically worse, causing me to have severe pain and to become disabled.  I was able to get a Lymphoma drug called Rituxan (Rituximab) which worked well- reducing the Cryoglobulins to a trace level.

Oxycodone stands alone with no anti-inflammatories or Tylenol though it is often used with those drugs in preparations like Vicoden.  It is a narcotic, but the only thing giving me pain relief (along with neurontin).  I'll be back later,  Dave
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Avatar universal
Thanks for the welcome back.  I'll be hanging around for a while.  This site and people from here (like you two) have been alot of support and help to me- not to ever be forgotten.  Thanks,  Dave
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Avatar universal
He was an Interventional Radiologist.  Such a bad experience Terry says that he'll never have it done again.  Was told they would bx. the lesion and another site in the liver to check for cirrhosis.  The doctor told me that he penetrated the casule of the liver many times attempting to get a good bx. of the lesion.  Said it kept moving.  He's had an increase in right side pain since then (over a month ago) and looks jaundice in the last few days.
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Avatar universal
Appreciate the comments.  My husband, Terry is 46 now, was 16 or 17 when he went into the army.  We have joined AMVETS and plan to pursue any VA benifits available to him.  He currently has health insurance through my employer and will then be covered through COBRA.  I recently resigned my position as Director of Surgical Services at an Emory affiliated hospital.  Being an RN I should have recognized that Terry's Hep C was active and aggresive.  The job had me so busy and my Mother is very ill, I couldn't see it, until around sept. 2004, when he began this trip.  I decided to take a few years off and focus on the most important issues.  Not so sure I'll go back to healthcare though.
We took a walk with our Jack Russells yesterday, He took the Darvocet.  It helps the joint pain and aches just sitting around, but today he was up cooking and said his joints were hurting him and he is having a lot of right side pain.  I plan to ask the doc what his ammonia level is tomarrow, he's having a lot of difficulty staying focused.  I've seen end stage liver failure and the hepatic encephalopathy.  It really scares me.
Thanks, Barbara
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Avatar universal
Can you please tell me your experience with cryoglobulinemia.  I just started treatment but tested positive for it.  The doctors haven't explained it to me.  Thanks.

-cbee
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Avatar universal
Thanks for the kind words and encouragement.  I am really encouraged because it was very long and the Cryoglobulinemia and resulting neuropathy changed my life so radically.

I'll hang around for a while.  God bless,  Dave
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Avatar universal
WOW! you are done! great news on your post tx PCR, it looks like you got this licked.
I kept the cryo crusade (as much as I could) while you were gone...and now anemia also...
stay well
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Avatar universal
I am not sure who does his liver bx but if you have problems I would strongly suggest using a radiologist vs a hep doc. I believe they are the best at this. Just a thought. LL
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Avatar universal
I haven't been around in a long while, greetings.

I had alot of trouble with pain (still struggle with it 2 months post tx) and found a combination of Neurontin 1200-1400 mg/day and Oxycodone 15mg/day to be helpful.  The Neurontin helps with nerve pain from peripheral neuropathy.  If your husband has pain from nerve damage, then this might help.  I take two 300mg doses during the day and 600 at night.  In combination with the Oxycodone, the night dose makes me very sleepy.

I finished my 96 wks of Pegasys at the end of November.  My end of tx and 6wk post tx qualitative PCR's showed no virus detected- I'm hopeful that the 3mo will be the same.

Honey, if you see this, I lost your email while waiting for the result- thanks for the message.

Dave
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Avatar universal
O, wouldn't we all have done things differently if only we had known!

Is your husband a vet?  The VA now has special programs for vets w/hep c.  they also help w/disability, etc.

Now, as sick as he seems to be, hepatic encephalopathy can be a problem for him.  Its hard to reason w/someone w/it and they don't remember anything for long and are massively depressed.  This all increases 'inertia' as much as fatique.  I would just sit there goin' around and around in my head, and do it all over again b/c I couldn't remember what I was worrying about.

One thing about using 'food as medicine', not just stuffin' your face, it gave me an  immediate sense of taking back some control.  Just as exercising--and walking is the very best kind for me-gave me something concret to do and I knew I was starting to lessen some damage.  And my dogs won't let me forget now.

My thinking was that @ least I was not adding insult to injury.

Also, take care of any other health and dental problems.  You need to conseve the energy for the major battle--eliminting the hep c.  And 1's are much more difficult to cl than other genotypes.

And if he needs tougher talk, have him check out the Out of Bounds delphi group.  that's where all my rowdy friends hang out!

I am/was a 2b, infected in 1967 from transfusion.  I was dx in 10-01 after a massive bleed on 9-12-01.  I started tx in May, had cl'd by June, fin 24wks in Oct 2002.  and have been fine since.  they said I'ld be dead in days and instead I was 'clear' in 6mos, and SVR w/in a yr.
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Avatar universal
Well, I was able to speak to the G.I. doc, after multiple calls today.  Sorry for the lack of info., but i'm new to this.  My husband is genotype 1, southeast asian.  Is a few months pasts the vietnam era, but recalls the guys coming back, and knows several that have hepc.  We've known he was positive since the test was developed to identify Hep C, before that it was non a non b.  Would have done things differently with the medical professionals if we could go back.  He has decompensated cirrhosis, high viral load.  Had much difficulty in obtaining a liver biopsy last month, as they kept attempting to bx. a 1 cm. lesion, that was probably fibrosis.  Multiple attempts at penetrating the capsule, very bad experience.  Doc wants to see him on Wed.  Called in Rx. for Darvocet, forgot to refill the ambien, so another sleepless night, I expect.  I plan to take his mother to the appointment with us.  If he doesn't believe he needs symptom management, she can also be an effective advocate.  I need all the support I can get right now.  Thanks for the advice.  Barbara
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Avatar universal
I guess I was wrong I thought you had completed TX. Shoot now I feel bad. Excellent on the 2log drop. This is encouraging news. You betcha I'm praying for you to make it. I've been doing all my chores even got some more hay Sat. all by myself. I'm going to be one year post on Valentines Day. I can't believe how fast the slide for life is moving now. Seems faster than pre TX. Hang in there.

Love, Peace and Happiness
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Avatar universal
no bundle of energy here.I'm waiting for 24 wk pcr feb 15.I was down 2logs at 12 weeks. spending alot of time inside and hoping to cure this thing. thanks for asking and keeping in touch with the forum.I hope your able to get out and do things around the yard oakie. take care
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Avatar universal
I don't know how much help I can be since I am 2 months post tx but I was prescribed remeron (antidepressant) that helps with sleep. (the soluable tabs work much better and faster) also I was given Vicodin for joint pain.

The remeron I started a month before tx.

Good luck to you.
Kim
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Avatar universal
Just butting in here I think everyone else covered the question.
Haven't see you for awhile or maybe it's that I haven't been here awhile. Hope all is going OK for you. Hope you have some energy back.
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Avatar universal
I agree on diet changes.  Try Melatonin-a natural sleep aid.

Cut out all caffine and 'sugary' drinks.  I use SAMe for liver, mood and joint problems.

Try a very low protein, low dairy, low salt whole grain diet, avoiding the whites-white sugar, white flour, white rice and breads and pasta. spicy or acidy food can cause joint discomfort, so go easy on citrus and 'hot and spicy' foods also.

Doesn't leave much does it?

take a long walk everyday and a hot shower or tub before bed time.  This raises the core body heat and acts as a natural sleep aid.  The exercise helps mood-dopemines-and actually increases energy.  It will be good for you too.

Accupuncture and massages will also help.

All those otc and Rx sleep aids and ADs are terrrible for the liver.

Genotype?  length of infection?  we're always asking that.

And if you are lucky enuf to live in a medical marijuana state, you can always legally smoke a joint.  that works, doesn't hurt.
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Avatar universal
I had the same problem with ambian. It didn't take much to make me fall asleep but if I took it every night it did not last too long. One thing I did was break the ambian in half and take the second half when I woke up in the night. This worked well since it didn't take much to make me fall asleep. He might just try that. LL
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Avatar universal
Sleeplessness is the worst and I have to work full time so I cannot afford not to sleep.  I alternate between Ambien (it does not work if I take it nightly), Tylenol PM (it makes me feel very tired the next day but if your husband isn't working that might not be a problem for him).  My doc prescribed Trazadone, it's an older antidepressant that is used also used for sleeping. I feel tired in the a.m. upon waking but once I shower, etc. I'm better.  

I have some arthritis in my neck and some disc degeneration and I take Mobic for the inflamation which helps the joint pain.  It works like Vioxx and Celebrex but hasn't been taken off the market so far.

Good luck.  

-cbee
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