Hep C Discussion Forum

Linuxter · Guru

RE: Painkillers and treatment

Sydhanrahan · Guru

Hi Tom,

I am sure we all feel very humbled to hear what you have been through. So glad, anyway, but especially in the light of so much tragedy, to hear that you are undiagnosed so early too.

And thank you too, Canuck, for sharing your story.

Take care,

Syd

keesotom · Member

Awesome! Actually I live each day as it were my last...jfyi when I was 17 my brilliant Harvard educated father told me he was going to kill himself and did. 3 days later. A year and a half later my mother died my arms two days before Christmas. My 23 year old fiance who was pure hearted died in front of me of a brain tumor. My wife died in my arms. So much pain, yet I love God with all my heart, all my mind and all my soul. I have one tatoo. 91st psalm

Canuck · Guru

Keesotom,

You are doing well, and yes of course you would be lamenting that these protocols were not available for her back then (and, even if they had been, we will never know if it would have saved her). She and you and the docs tried everything they could within their power, no? It is OK to be sad for your wife, and for yourself, and to miss her and to regret how she lost her life and how you lost your partner, but NOW, you HAVE to be happy, this is YOUR job and duty and expectation, because she would want it for you, she would want you to live happy and free of C. You were already moving in the direction she would have wished for you - you, seeing the new drugs and treatments developing - you put yourself in front of them (as she would have wished for you). Survivors guilt is painfully real and so is missing her, so is anger and regret that she could not be saved. But you have to abide by knowing what she would have wanted for you, survival and life. Do it (as you are!).

I feel guilty too, in a small way (compared to you), but still very real for me, knowing all the hard histories of the folk around here who have endured such long arduous journeys to reach cure, and I, only having to do 8 weeks of "soft" drugs, I experience it as a form of survivors guilt too.

I must just assume that you two had a normal loving relationship, given that, I ramble on, just based on that. I want to recount to you the story of my Mothers death, before she died (I thought it might be good for her and good for me) to say it out loud to her ... I vowed/stated to her, not to worry about me, that she could go knowing that "I would do well, I would do better, and I would try harder in life". If you did not have this kind of communication with her back then, vow it to her now.

Take no offense if I am too presumptuous with you, I am only guessing my words might ease something for you.

Know that she and I, and everybody here, are very pleased you are already und.

We gunna need a celebratory EOT party for you, where only tears of happiness will be allowed! smile C.

keesotom · Member

Thanks to all for your kindness. I will get my next 30 days worth 2morrow. I will only do 60 days worth. This makes me grateful, but sad that my wife was not able to receive this treatment. I continue on with my marijuana use.

wendyo · Guru

So happy to read Tom's news. That is such a myriad of feelings. I know.

I too did things I am not proud of in my past but it made me the woman I am today and it took years to like her.

Syd we do have meals on wheels here. Glad you are trying some new therapies out as they sound like they are helping!

Canuck · Guru

Oh keesotom,

How nice for you! Really nice!, after just 2 weeks on Harvoni. I too cried tears of relieve with my first und. I'm really happy for you. It really is a sweet, bitter sweet feeling of relief, isn't it. It's a good day. biggrin C.

keesotom · Member

I just cryed tears of happiness! Just got my blood work results after 2 weeks of harvoni. Virus is undetected

Sydhanrahan · Guru

Hey Keesotom, I really like your honesty and was only trying to point out that the whole "dirty needle" phrase we are all so familiar with now, wasn't even in the imagination, let alone the vocabulary way back when. and if we are comparing poor partner choices I can't one up you because it would require even more dismal details of my life than you know already. biggrin

As for the moral rectitude of those with the pain relief keys, I find it really horrifying. My first boyfriend - who got hep c after me, is due for a hip operation and has been told that he won't have a general anaesthetic because he has been an intravenous drug user up to the 80's,, it will be an epidural. that is so twisted,nonsensical and barbaric I've suggested he call again to ask a few questions.

Do you have Meals on Wheels in the US? It is quite a big not for profit organisation that relies on volunteers to deliver hot meals to elderly people in the local community. The idea of a heroin on wheels in Florida really tickles my fancy. Poor old sods.

yoga and Pilates strengthen those muscles Tig. And as you say, the sight of other people doing their dirty dogs could be just the endophin release you need. I spoke to a nurse today who recommends a hydro bath. Have you heard of those? Hot swirly water sounds like a go too.

Wendy I misread your post re driving yourself home. Sorry. My son, my 24 year old lead foot, took me and picked me up. I did wonder if his driving would cause some faecal mishap on his soft leather car seat. Just ended up closing my eyes most of the way to avoid the possibility.

thank you all for being here.

Syd

keesotom · Member

Thanks to all for all the encouragement. IN 1982 I was living waawith a girl and shared a needle one time It was pretty aids, pre hepc. At first I did not realize she sold her body. Think that is crazy? Soon after I had a girlfriend that moved in with me . she was married to a guy in the mafia

Tig · Admin

The opiates are in a class all by themselves, no doubt. For several years I was prescribed Fentanyl and Oxycontin, WOO HOO on that!! Then I was put on Methadone and Dilaudid for many more. Then insurance fell apart and I lost all my doctors and insurance. No more pain meds and quit on my own, because I had little choice. We have a lot of problems here in south Florida with seniors resorting to Heroin for pain, because the doctors and the DEA have made access to medication nearly impossible. Street drugs can be purchased just about anywhere and the creative dealers even deliver. Sad. If you can get a prescription, the pharmacies will fight you to get the quantity required for pain management therapy, which is daily dosing. The only thing I admit, is that it's nice not having to be waiting for the next dose, but the fact remains, it worked for me. I've had more surgery than most people combined and have enough metal in my spine to build a jumbo jet. The heat packs and Tens Unit they sent me home with, are laughing at me. Could be my state of hopeful bliss too.

I would love to have someone rub my butt Syd, that might make me forget a few other things and wake up something else! The pain management doc last week asked if I would consider Yoga! While the possibility of me getting up off the floor after a couple of those "dirty dog" things, or whatever they call them is doubtful, I do have little doubt the view would be good for a few minutes anyway....

Sydhanrahan · Guru

Hi Keesotom,

so glad you are feeling better.

As for pain management, I'm with you Tig, where's the ladder?? Only jokiNg. I don't have any of the severe injuries you guys have acquired over the years but I did begin to be riddled with pain in my back, legs and hands before and during treatment.

This next bit is very hard for me to admit. On a par with Keesotoms admission which he bravely puts in his signature line. I'm not sure why men visit prostitutes, but back there in the seventies and maybe eighties??? We didn't know about hep c and Aids. Maybe a quick squirt in the kitchen sink if you were being extra clean. Anyway here is my admission. I only took morphine intravenously for maybe three months when I was 21 but it was such an amazing key to relaxation and fantasy, no wonder heroins called "golden brown" because if it's any better than that morphine was I would have been lost. ever since I have chased some way to just take off that anxiety which weighs me down like a dirty old coat. Marihuana makes me paranoid and dopey and I hate it. The only legal alternative was alcohol and look where that got me.

So when I was prescribed codeine for the pain recently, the opiate gave me such a tantalising whiff off those early seventies days. I am fighting taking it and here's where i hope my story is useful for some of you. I was amazed at how little doctors know about pain, especially back pain. After an x Ray and a chat they've run out of ideas and turn to their prescription pad if you're lucky. So I went to a young woman who calls herself a myotherapist. She dug around in my bum cheeks and thighs which was painful and embarrassing but it made a difference. The next week she did half an hour of that and half an hour of yoga. I can't afford to keep seeing her so am now going to a cheaper group yoga class. the pain is still there but it is getting better. I think it's a combination of having someone with no how loosening the muscles around the painful area because they tighten because of the pain and then gently working on a bit of strength and mobility in the area.

I hope thats useful for some of you.

Syd

wmlj1960 · Moderator

The dragon may not be "slain" yet but he's on the ground taking bullets to the chest. It's no surprise that we feel better when the viral load goes down, and believe me feeling better continues... Keep up the good work Thomas! smile

-- Edited by wmlj1960 on Tuesday 7th of June 2016 08:31:48 PM

Loopy Lisa · Guru

keesotom wrote:
Day 15. Had blood work done yesterday....except for a lil loose stool I actually feel better, more energy, less general pain. I actually believe the dragon is slain

That is great news, it means you are getting better as the virus is being slain. I have to ask, what made you share a needle with a prostitute? I know that is cheeky to ask, but didn't you worry about disease sharing with a high risk individual?

keesotom · Member

Day 15. Had blood work done yesterday....except for a lil loose stool I actually feel better, more energy, less general pain. I actually believe the dragon is slain

keesotom · Member

Just took my 6th harvoni. Really no side effects, actully feeling better. This miserable know all waitress at work tryed to tell me there is no cure for hepc. I said depends what you call a cure. I will have blood work done @ the two week mark. I expect the virus to be gone. From 16200 viral count to zero. I am continuing to research marijuana for medical use. On a personal level it has been a godsend, .making pain very manageable and even mental and emotionally.u

Pablito · Senior Member

Further, it's given intravenously. Actually, the benzo is Midazolam...not rohypnol. It means that you are not conscious when the doctor puts your shoulder back in, but it's short acting so you come around quickly. The first time I dislocated my shoulder apparently I was randomly going up to people in the ER and asking them if they played the violin.

I don't know what I was thinking refusing medication the last time I dislocated my shoulder.

Tig · Admin

Pablito wrote:
In my experience regular pain killers don't do much for chronic pain. The only ones that work are opiate-based ones and they are to be avoided for people like me with a history of addiction. As an aside, the last time I dislocated my shoulder I was in early recovery and I was so full of 12-step ethos that I refused any medication in the ER (they usually give morphine and rohypnol) so they popped it back in sober, so to speak. Big mistake!
Pablo

Morphine and Roofies?? I'm getting out the ladder and taking a dive onto my shoulder!! Just kidding of course. I've been in and out of pain management for years and it was controlled by various opiates. They did help a lot, but lost my doctors and insurance due to the new and improved healthcare in the US now... So I had to give them up and do understand the problems they can impart when trying to stop. Tramadol didn't work at all, so I'm back to gritting my teeth and taking the occasional OTC anti inflammatory, which has as much placebo effect as actual. I would enjoy resolving in some manner on a more permanent basis, but that's not going to happen unless they can transplant new spines. Rotator cuff tears and injuries are awfully painful, not to mention the hips and knees too, Tom and Pablo. Maybe we can figure out a way to share the pain. Maybe trading off now and then would help. Then again, we're probably accustomed to what we deal with on a daily basis. So something different might not be the best idea, lol! I keep seeing online orders popping up on my credit card, seems my wife is buying a fence to put around some pasture property. I think she has plans for me pretty soon!

I hope that the discomfort eases for you both and as your SVR's have time to percolate, you will notice improvements in your overall health and the arthrosis associated with HCV in many of us. We can only hope for the best of outcomes. Hang in there guys!

Pablito · Senior Member

Hi Keesostrom

I've had shoulder pain for 25 years, especially the right one. Old rugby injuries: multiple dislocated shoulders. To be honest, I don't even notice it anymore it's so chronic, but your post reminded me of it and of a strange, but transient, side effect I got early in my treatment (which also involved sofosbuvir) and that was that my shoulder got more painful. Complicating this is that we all spend so long in front of computers these days, which isn't great for shoulder pain.

In my experience regular pain killers don't do much for chronic pain. The only ones that work are opiate-based ones and they are to be avoided for people like me with a history of addiction. As an aside, the last time I dislocated my shoulder I was in early recovery and I was so full of 12-step ethos that I refused any medication in the ER (they usually give morphine and rohypnol) so they popped it back in sober, so to speak. Big mistake!

Pablo

keesotom · Member

FYI I was scheduled for a left knee replacement in 2008 The right is as bad. My hips are bad I have a torn rotator cuff. I try to live in the now and be grateful. I am working 30 hours this week, and I outwork all the young guys.

NRA4ever · Veteran Member

I'm not judging you. Hold your head up & take life one day at a time. I have chronic pain every day. I'm 3 inches shorter now due to my osteoarthritis. I hadn't measured myself in years. I almost fell out when I did it last week. My statement about going straight was aimed at druggies that are using for a totally different reason than you and I do. I have to take Tramadol often if I am active. My knees hurt so bad that a can barely walk. The joints are not bad. They are full of arthritis. I use ice packs & heat also. My knees are why I'm on disability. My study doesn't drop you if your taking drugs your doctor gave you. They frown on meth, cocaine & smack. One test with these in your system & your out.

-- Edited by NRA4ever on Sunday 29th of May 2016 09:10:22 AM

keesotom · Member

Go straight? Actually I have been going to narcotics anonymous for years. Do you live with chronic pain and PTSD as I do? I only have one judge and he is a loving God.

NRA4ever · Veteran Member

I agree. My joint pain is severe at times. To show how often I use pain meds I got my last Tramadol in November. I got 120. I just ran out this week. If your getting pain meds from your doctor I don't see why you shouldn't take them

Sydhanrahan · Guru

hi guys, just have to have my say here.

I really don't think you should be looking for some sort of hero status because you don't need or don't take painkillers. If there's something effective that reduces the level of pain a person is suffering, then surely it should be between them and their doctor whether they take it or not.

This sanctimonious attitude that some people adopt towards people who need help to manage their pain really irritates me. It's no more anybody else's business to judge than what sexuality a person is, who they vote for or what religion if any they follow.

Obviously if you're currently sticking illegal meds in your arm with a needle then treatment for now is a waste of time. But if your doctor has okayed something knowing the condition of your liver, then surely it's no business of the trials people or anybody else.

Am I making sense here or not?

Syd

NRA4ever · Veteran Member

My study has drug test every visit. They know I take Flexiril & Tramadol for my osteoarthritis. They said one bad test & your out. Anyone with HVC should be able to go straight 12 weeks to get well.

keesotom · Member

Im done with the psychologist

keesotom · Member

The attorney general came down hard on. The7 NY insurance providers. They cannot deny based on pot.

Tig · Admin

Hey, as long as your insurance provider and doctor don't block your medication authorization, and it's working for you, your psychologist will have to accept it. We have people here that have routine or random drug screens during treatment as a condition of authorization. One positive screen and they're done. Be sure yours doesn't have that same clause during treatment. Does NY state have a medical marijuana law or considering one?

keesotom · Member

Ok I am now on day 5 of harvoni....really minimal if any side effects. The first 3 days I cooked some excellent food with quality pot added. Wow- didnt even need tramadol... I have upped my nutrition -eating more fish, whole grains, lots of veggies and fruits, water. No one but my psycologist has had an issue with my pot use.

Tig · Admin

Hi B-Dave (you too regular Dave),

There's so much in the news now about the use of medical pot, I'm going to see if there is some information on hepatitic effect. That should be an interesting search.

If you give do some research (cough) Dave, do share your thoughts! Good to hear from you.

Linuxter · Guru

Hey Dave,

Good to see ya!

Glad your current meds are working.

Ya, Idaho is not likely to be following suite with Oregon and Washington on that, guess you'll just have to jog to the West to get any legal pot.

Sounds like SVR is agreeing with ya, I hope to be joining ya in that soon (mid July before I find out).

Take Care,

Dave

-- Edited by Linuxter on Saturday 21st of May 2016 01:25:18 AM

biminidave · Member

I'd love a shot a medical pot for my arthritis pain, but living in Idaho we'll be the last state to legalize it. My pain doc is my favorite guy sometimes. He knows about my SVR from Hep c and the possibility that too many meds of the wrong type could trash my liver beyond it's current state of "meh." He's got me on hydrocodone with NO acetaminophen, ibuprofen, or other liver toxic chemicals, and it seems to be working fine.

Thanks for bumping this post along some Tig.

Tig · Admin

They're getting very specialized in species cultivation now or should I say, have been for years. They have probably spent more time and effort refining marijuana agriculture than just about anything. I want to see more focus on it's medical benefits in general versus the concentration made on recreational use. When big pharm can make a profit on it, you'll see more interest inside the Beltway... jmho

The ultrasound looks good!

keesotom · Member

The name is coming from the parents- ICE- a powerful Indica, and Grapefruit- an excellent sativa.

Tramadol- Ok thanks for the heads up... nothing yet. Dr. says stretching and heat first( I was scheduled for a total left knee replacement in '09- the right ones no better)

no comment.

clinical History: Hepatitis C infection

COMPARISON STUDY: July 26, 2013

Findings:

The suprarenal abdominal aorta and intrahepatic IVC are poorly visualized.

The liver has a heterogeneous echotexture however there are no intrahepatic
masses or dilation of the intrahepatic bile ducts. The gallbladder is normal
with no gallstones, pericholecystic fluid, or gallbladder wall thickening. The
common bile duct measures 4 mm.

The pancreas is obscured by bowel gas.

Impression:
No gross right upper quadrant abnormality by ultrasonography.

Films reviewed and dictated by: JONATHAN T MARSHALL DO 04/11/16 1208
Signed by: <Electronically signed by JONATHAN T MARSHALL DO in OV>
Sign date / time: 04/11/16 1211

04/11/16 1208 XXX

confuse

[image edited to fit forum default display width]
-- Edited by wmlj1960 on Friday 22nd of April 2016 06:30:12 PM

JimmyK · Guru

Oh come on, you knew it was coming. JimmyTune.

Damn Hippies

Tig · Admin

Iced Grapefruit? Where do they come up with these names? I've seen some of them on those Marijuana dispensary documentaries and they just make me laugh. They HAD to have been high when they came up with them! The only iced grapefruit I've had was when I tossed a piece in my glass of Grey Goose, ha, ha. Those days are done. I would be such a light weight now. I can see Syd and I laying next to each other, paralyzed from the waist down, unable to speak and drooling...

Be sure and check the adverse reactions with any other medication you take with Tramadol. It can cause severe reactions with some anti depressants. Everything comes with a slew of precautions now. Drugs.com has a good resource to check interactions. I hope you get some ongoing relief from your pain and the associated problems. We all know how miserable life can be when those things stand between us and life we want to live.

keesotom · Member

Yea Tig LOL... Well here it is: Iced Grapefruit. It has worked amazingly well both on my anger/ptsd as well as chronic pain/lack of sleap. How good is it ? All that on no more than 4 hits on a pipe a day. It rapidly improves mood, focus and general happyness. For the first time in months I am able to sleap and nap well.

Well I explained all that to my counselor. While being cautious and looking a lil alarmed she did say that some states were certifying med Marijuana for PTSD. I still take my 15mgs lexipro, but no more muscle relaxants or sleaping pills. I have been just recently trying for tramadol as a more liver friendly alternative to 800 mgs iboprofin, which I take before going to work. I do need knee replacements, but am working on one thing @ a time.

But I hate to lie by omission @ N.A.

Even youths get weak and weary, and young men stumble and fall;

But those who hope on the Lord...will SOAR AS ON WINGS OF EAGLES>

Tig · Admin

Hey Syd,

I had a nose moment after reading your edible description, too! Canuck snorted, I sprayed coffee, it wasn't pretty.... Thank you for that special moment, lol! I see news reports here coming out of Colorado, which legalized edibles. The potency is apparently so high, people get lost in their homes. Certainly nothing like that old "ditch weed" kids had back in my high school days. Did you notice any drooling??? Ha, ha!

Canuck,

You can edit posts for 24 hours, but deletions require the assistance of a moderator. Here's some info that Jill posted on the subject.

Post FAQ

Canuck · Guru

oops, posted same thing twice! hm. nevermind! C.

Jeesh how the heck do you delete stuff, oh well!. C

-- Edited by Canuck on Friday 22nd of April 2016 06:24:08 AM

-- Edited by Canuck on Friday 22nd of April 2016 06:25:36 AM

Canuck · Guru

Oh syd, ... lol lol lol, belly laughing accompanied by snorting (no pun implied, as we were on the topic of edibles anyway) - catch my breath, recover .... can't help it ... lol lol lol .... you kill me!!!, AND cheer me up at 3 AM! C.

Sydhanrahan · Guru

Hi Thomas,

This is my 19th week on Sovaldi and I can barely walk because of the pain in my legs and hip joints. I do occasionally take paracetamol with codiene. I know it's nor ideal but either is turning into a cripple. Dr has approved a light dose.

I am lucky that I have never liked marihuana, so I'm not tempted to see if it eases my pain. To be honest, about a month ago some young family member made a batch of cookies. I was talked into one because I remember them doing very little to my head space when I was a youngen and because the melted peanut butter chips hanging out of them looked so delicious. Well the youngens scarpered off to do whatever youngens do when they go out and I hobbled off to bed where I realised that my brain felt as though it was made of spaghetti which had been lightly blended. No attempt at thinking got past three words long. I was lying there thinking "I hope rubbish"...Interfere treatment..... Genetically modified...rubbish.... Mutter ... Mutter.. Work legs?..... Full bladder.... Never again etc etc.

I would imagine that it wouldn't be okayed by your gastroenterologist, but if it works for you, it's worth being honest and asking him.

Syd

Tig · Admin

Yes, thank you for pointing that out, Jimmy. We do request all forum members to read our Forum guidelines upon membership here and any time there is a question regarding them. Our Admin Team member Cinnamon Girl (Jill) updated them recently and explains things well. I will include a link to that thread below and add additional notices as required.

We don't provide medical advice, but rather informed opinions. All medical decisions must be made between the patient and their healthcare provider.

Forum Guidelines - Required reading for all members

Thank you,

Tig56

Forum Owner/Administrator

JimmyK · Guru

Hey y'all.

Everyone here is an adult and conversations like this are normal.

At the same time and as adults it must be understood no one here is able to recommend any sort of treatment for any condition. Only your Doctor or a second opinion from another trained and licensed professional if you do not feel comfortable with the first is able to make that call.

Any opinion expressed here is the sole responsibility of the one making any such statement and does not reflect the position the Community as a whole here takes.

THIS FORUM, IT'S OWNERS, ADMINISTRATORS, MODERATORS AND MEMBERS DO NOT AT ANY TIME GIVE MEDICAL ADVICE AND IN ALL CASES REFER ANYONE HERE TO SEEK APPROPRIATE MEDICAL ADVICE FROM THEIR DOCTOR.

No Jimmy is not a killjoy. He is a Contracts manager trained in avoiding litigation. If I see something that in any way can be misunderstood with regard to the official position of this Forum I will make a kindly reminder.

Carry on y'all.

JimmyK

Tig · Admin

Hi Thomas,

You never know what their opinion on the use of medical marijuana will be. Hopefully he will be open minded and listen to you. What strain are you using to obtain relief? Rediscover? You just outed yourself, lol! I hope you get some relief and some answers. Chronic pain is no fun.

keesotom · Member

RE: Painkillers and treatment - medical marijuana

Tig · Admin

Painkillers and treatment

Tig · Admin

Hi Holly,

Welcome to the forum. Sorry to hear about the teeth, I can relate. You should be okay, but there is a mention on the literature that states Ritonavir and hydrocodone may result in higher Hydrocodone levels. So I wouldn't take more without clearing it. You should discuss the use of any meds with your doctor though. There are some meds that don't mix. Do you have any information on V Pak? I can provide you with some links if you need them. I'm going to send this before you leave. If we can help, let us know.

http://www.drugs.com/cons/viekira-pak.html

-- Edited by Tig56 on Sunday 10th of April 2016 02:59:25 AM

MsHolly1 · Newbie

I took two hydros with my vekira pak am I gonna be okay I just got teeth pulled

Liamc · Veteran Member

Thanks everyone for your input my doctor told me it is ok to take some panadine, so will pop a couple tonight.

mallani · Guru

Hi Liam,

Sorry about the shoulder pain.

Chronic or recurrent pains affect up to 50 % of the population. The usual remedy is to take some 'pills'.

We have to be careful if we have liver damage from HCV or are on treatments whose drug interactions are still not fully understood. Most pain 'pills' contain ibuprofen, aspirin or an acetaminophen or combinations of these. All can be toxic to the liver, even in moderate dosages, and some cause platelet inhibition. Only take these with the approval of your hepatologist. A few pills here and there won't cause serious problems.

Try other techniques. Heat packs, topical creams, massage and rest can all help. If all fails, grit your teeth and put up with it.

Onward to SVR. Cheers.

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