Hi Iris,hope your going ok ,and the fires are not near you ,where I live fires seem to be annual thing these days ,trying to quit cigarettes isn't much fun ,IV cut down a lot,it's hard when you walk outside and the air is so smokey from fires,how's your numbness going ? mine doesn't seem to be going away , I think my poor dr has put me in the too hard basket !!,lol ,he must be getting sick of my aches pains,wants me to do a stress test with heart dr to see if he can find anything,lol my mother had late diabetes when she was about my age so I did the diabetes test my number was 9nurse said bit high and may look into it, oh well guess if they keep looking they will find something,lol I consider myself lucky to be still on the planet ,take care of yourself ,best wishes to Tig 5 observer and every body else out there I'm just to lazy this morning so many Carring people take care hope fires not too close...
Harry said
Nov 2, 2019
Guru,thanks for your thoughts, yes it is a hassle waiting for appointments,for so called specialists only to find out ,you knew already maybe, The hep C people over here were all so helpful before I started treatment ,yes the virus is gone thankfully,but I find it really hard trying to find out anything about Poste treatment health problems,take care Guru,and yes excercises help
Tig said
Aug 20, 2019
Enjoy that daily dose of Caffeine, Brother! Without that, the day is always off to a slow start... I agree, you have to wonder about the attention paid by western medical problem solvers.
5-1-18 said
Aug 20, 2019
hi harry, i'm just sending so me good thots and prayers your way
Observer said
Aug 20, 2019
Harry, Im glad you got there and back safely. Sorry it was not the help you were hoping for, but not particularly surprised.
In my experience, western medicine relies far too much on one size/symptom fits all and in the box thinking.
I wasted so so so much time pushing for and waiting for specialists over the years. I have had some pretty drastic and life affecting auto immune symptoms but despite going to 3 immunologists (all with loooooooooong wait lists) never got a diagnosis or any helpful advice from any of them.
Chi gong was developed for healing and I find it has really helped me a lot. My balance is improved, my aches and pains are less and I feel energized....I also walk everyday...I have a lazy bulldog so its more of a saunter, but I do walk an hour in the afternoons and 20 minutes in the evening.
Do you enjoy swimming? thats super gentle and healthy exercise
Do you take magnesium glycinate? If not...you really should consider it..it is very very good for the nervous system.
I cant find the link I was looking for for the chi gong, but in searching I saw there are lots of videos and examples available on YouTube etc....
Anyhoo, take care Harry hope you feel better soon
Harry said
Aug 19, 2019
I'm sitting here having my morning dose of caffeine,thinking to myself why didn't the Neurologist check my reflexes or do any checks he did check the numbness in my fingers briefly,oh well his the specialist not me, just thinking he might have done a few tests on me , I'm starting to wonder about western medicine ,cheers all.Harry.
Harry said
Aug 19, 2019
Observer,chi gong going ok so far,ithink it really helps my anxiety, thanks everyone for info and kind thoughts really appreciate ,I get so much more info then my Dr gives,just communicating with people who understands helps heaps ,well my appointment with neurogist was yesterday ,drove the old Toyota up to Southport just over Queensland border about 130miles from home I think ,assured my wife I wouldn't need A co pilot ,we usually end up arguing about direction s anyway, think that was bit of a mistake as by the time I found the hospital and parking station I was a nervous wreck, not use to traffic lights and getting bipped
for going to slow trying to find street names ect ,and of course had sudden urge to find a toilet whilst stuck in traffic ! Well I finally saw specialist first question was are you always an anxious person ,lol he then explained that my neck had had a hard time and pinched nerves were more then likely causing my numbness, and that operating may cause more serious problems at my age also having emphasemia does not help,he also said that having the virus for so long hasn't helped even tho I never felt all that bad , regarding the DAAs he said ,they may have something to do with my symptoms as they are very strong and have a high success rate with virus (including Geno 3 )
He recommended gentle excercise ( chi gong maybe )maybe some gentle swimming
avoid
work that is too phisical, and to let him know if things get worse,so that was my specialist appointment finished he was good guy,but I didn't really find out anything that I didn't already know ,got to persist with gentle excercise try a healthy diet and hope things improve ,I was so glad to finally get home without any dramas or car problems ,all the best to all stay safe .Harry
.
Observer said
Aug 14, 2019
Harry Im so glad you are trying some chi gong ....
My favourite one is called parting the clouds...palms together as I slowly raise above head (with inhale) then hold/stretch then kinda trying to press against the air (sort of self imposed resistance)as I exhale and return arms ... its so gentle and you can do it standing or sitting or even lying down if you have insomnia...
I stumbled upon a link from some morning show many years ago that has a 3-5 minute wake up routine...its not really proper ancient chi gong but its a great stimulation based on chi gong that I do everyday while waiting for my cappuccino milk to steam...Ill dig around and see if I can find it for you and pm it to you when I do.
Harry said
Aug 13, 2019
Observer,been trying the chi gong so far I'm finding it interesting, I can see how it could be relaxing ,IV been trying one excercise ,it's a lifting arms and breathing thing any way will find out the proper name ,seems like a nice gentle relaxing excercise ,thanks will do some more looking into.
Cheddy said
Aug 10, 2019
Harry,
It sounds like you are onto something with the look into nerve pain. It makes sense to me that you could get significant relief along these lines.
Sorry you have to wait until September as you have waited a long time already, but it is good news that you are moving forward.
Hang in there, Harry.
Sticker said
Aug 10, 2019
@ Iris, you had me at marijuana brownie! Im guessing youre in California? Im super jealous that we cannot have access to cannabis here in Texas, it just seems senseless. I will spare everyone a discussion of politics or policy, just because Im in a red state doesnt mean everyone here sports a confederate flag and a MAGA hat, despite our differences we get along for the most part, there is still a great deal of hospitality and politeness to be found in the Deep South. If cannabis would aid Harry at all then i think he should have it.
@ Harry, Im discouraged that youre not getting answers to this assortment of maladies. I am ever hopeful that you will begin to feel better, its just discouraging that you are dealing with these things that are nagging you. I hope that there is some positive resolution.
Harry said
Aug 10, 2019
Hi Iris,sorry to hear of your numbness,I thought
I must have been the only one ( dam) seriously it's really annoying it kinda makes me feel bit unbalanced at times getting changed or showering have to be a bit careful! Strange my left toes similar to you ,the numbness in my right hand is bit of a nuisance I'm usually a bit clumsy but this makes me clumsier sick of dropping my coffee ect ,have you noticed any edema in feet or ankles ?and my toe nails seem bit wierd, wow I sound so petty sorry,but it can be helpful to compare with someone who has been through this trip rather then some young Dr straight out of med school who has read a few articles,I'm pretty mixed up get told different things all the time ,like this is normal for someone your age. ,or give it time your symptoms will go away even that I'm 9 MTHS poste treatment ,I see a Neurologist in acouple of weeks may help maybe with a few of.the symptoms I have ,I guess having the dam virus for so long hasn't helped ,I've also had pinched nerves ,I just don't know life sure is a mystery ,this forum is really helpful I have found a lot of Caring people who have been on same road .Really hope you are feeling better soon your not alone ,will let you know what the Neurologist has to say ok.take care.
Iris Dragonfly said
Aug 9, 2019
Hi Harry, I can relate very much to the numbness you speak of. We were on different drugs but it makes me wonder if these DAAs accelerate an already in place problem or what, But my three toes on the left foot are still numb, also experiencing overall weakness, been trying to counteract that with walking every evening, so far not much improvement, kinda feel like I'm crawling back to my self ever so slowly. Say, I wonder if you could get a marijuana brownie?, then you may get the rest you seek. Best wishes!
Iris
Harry said
Aug 9, 2019
Hi Observer,thanks heaps for info ,looking forward to looking the nerve excercise
up tomorrow morning (Saturday) sounds good,received fone call today I get to see specialist in 3 weeks , great news for me 6months was so long to wait ,plus it would be in the middle of summer ,thanks again for info will let you know how it goes ,enjoy your air con an take it easy . Cheers Harry
Observer said
Aug 9, 2019
Oh harry, I sure hope your Drs can get you into a neurologist soon. Pinched nerves ...poor you! Those are for sure going to cause numbness. I really hope you can get some help from the medicals soon.
Im not surprised the liver people dont think your problems could have been triggered or stem from the treatment...it seems like all the specialists only understand their own specialty..HCV affects and damages a lot of our systems but they all seem to think if the liver is fixed that is the end of our problems..It isnt.
Many of us have had our nervous system react to the DAAs. Time has helped most of us somewhat...
I do a type of exercises called Chi Gong .... very very simple ...its like tai chi but is used specifically for healing. You can google chi gong for nervous system and learn a couple of the exercises if you want to try it.
I am not a fan of the heat, I have fans and air purifiers running day and night. (I bought a nifty Dyson one with credit card reward points)
Anyhoo, thinking of you Harry and hope things improve for you
Harry said
Aug 8, 2019
Cheddy, thanks for your thoughts,found out I have bit of nerve damage in neck pinched nerves ect so that's probley complicating things a bit,plus I think it's normal to have few aches and pains when you get older definitely a bummer, maybe someone will invent a reverse ageing med !trying to get use to the fact that winter is nearly gone and soon will be hot,can't handle the heat very well these days ,saw on TV where you were getting heatwaves so hot ,even in Europe getting hot if that's a sign of what it's gonna be like here in Australia it's pretty scary,lol anyway thanks for your reply.cheers from Harry
Harry said
Aug 8, 2019
Hi 5, really glad to hear your hubby is feeling better ,I agree we have to be careful what we eat and put into ourselves, if it's time for me to do some physical work or carrying groceries up stairs (we live in a flood area ) I think it can put extra strain on ourselves especially after treatment,hope he keeps improving ,all the best to you both stay well. Thanks to 5, an Tig for your concern ,feeling better today yesterday we had a touch of early summer weather ,I forgot how hard it gets when hot ,makes having a nap when tired bit difficult,we don't have air con, tried a portable air con last year but wasn't really working very well ,so our electronic fans get a workout ,Tig I received news yesterday from Dr results from my x-rays came through I have couple pinched nerves bulging disc ,narrowing bla bla lot of big words anyway it could definitely cause some of the nerve an numbness im getting,drs going to try another Neurologist maybe not so long to wait . Anyway really glad the virus has gone ,I had Geno 3plus real high VL now noVL ,I can remember reading ora Dr telling me yrs ago don't worry to much about hcv most people don't get any effect mmm,I'm 66 yrs old grew in the 70s (strange days) so glad they finally seem to have this virus on the run.yes I agree I think it's taken a huge toll,just a slow burner,anyway friends hang in there thanks for the info,better mood today going to be nice cool day. Cheers,hope Hoodies doing well!
5-1-18 said
Aug 7, 2019
hey harry , finally my hubby is starting to feel mostly normal at just over a year and a half post tx.
he had so many problems, couldn't gain weight; then he finally started and his blood pressure went up. took bp meds awhile but that didn't help.
now he is eating fewer high sodium meals and also not doing aggressive exercise since that makes his body hurt. i always found that too much sodium makes my body hurt
it's kind of a living experiment to find out what makes things worse and then what makes them better.
-- Edited by 5-1-18 on Wednesday 7th of August 2019 06:17:11 PM
Tig said
Aug 7, 2019
Hey Harry,
I’m sorry to hear you’re still feeling so poorly. It sounds like you could use a caring and accessible doctor to get to the bottom of these issues. I believe there is something at the root of these issues that would provide you with some relief, if you could get the testing needed to find it. I can’t imagine having to wait six months for care and then having to drive 200 miles to get it. Especially when you’re feeling so poor!
I don’t think the Epclusa is solely responsible for each of your problems either, but it certainly could and should be included in the equation. Many people experience some increased joint and muscle pain following treatment, but it tends to be short lived and not chronic. If you have some inflammation that is adversely impacting the nerves in your arms and legs, it could be responsible for some of that increased numbness.
The old drugs I was on, did cause me some ongoing issues as well. Hearing loss, severe tinnitus and arthritis are just a few. When we start these treatments we don’t expect new problems to develop. The one thing to remember is, most of these lingering problems are temporary and will improve. Had we not gone through it, I guarantee you the liver damage would’ve continued to escalate from this virus and could’ve presented some serious problems down the road. They used to say we would probably die from something else and not from the Hep C virus. Then people started experiencing and understanding the myriad of extra hepatic manifestations the virus causes. Little did the doctors know, but the virus was manifesting itself in a dozen ugly ways. People were dying and suffering with symptoms previously written off to the unknown. They’re paying attention now and we have to keep knocking on their door to let them know these issues are real.
Hang in there, Brother...
Harry said
Aug 7, 2019
Hi all ,haven't heard anything from Hoodie lately hope going fine ,thanks for your concern Cheddy,5, everyone ect,finally got appointment with neurologist in qld about 200miles away,as long as old Toyota makes it, trouble is may have to wait 6 MTHS, still got the numb fingers also few toes edema in feet an legs still get really exhausted ,the liver people I see say no Epclusa wouldn't cause this (DAAs)hope there right ,my Dr seems to go along with what they say I don't think he has had much to do with hcv ,anyway hopefully the Neurologist will have some ideas, I know I'm sick of spilling my coffees and getting exhausted so dam easy, being a baby boomer I know I'm not young but when I heard I was cured I thought I would be feeling a lot better by now finished treatment about 8 MTHS ago ,I kinda wish that when I lost my hearing in right ear on 2nd week (lucky my GP put me on steroids for a week hearing came back )I thought maybe they would think this med may not agree with me seeing my hearing wasn't working ,and I may.have been better stopping after 2 weeks ,as I really did have more energy and felt better pre treatment , I'm not looking forward to summer heat a couple of.weeks away that's exhausting enough without extra exhaustion ,I'm really happy the virus seems to be gone ,just other symptoms are getting me bit concerned ,6 MTHS long time to wait to see specialist ,and no support from liver clinic that told me it would be a breeze doing treatment, maybe being Geno 3 and having a high viral load plus having virus for so long may slow healing process down.just always waiting still. stay well guys .
Cheddy said
Jul 20, 2019
Harry,
I don't what is going on! This is awful. I'm sorry you can't get better medical attention.
I'm just offering an ear and letting you know that I feel for you. As I recall, you have only a few clinics in your area? I just think you have to keep going, or go further away. You can't stop here in this unacceptable condition. As 5 points out, some solutions are more mysterious than others.
Very sorry, Harry.
5-1-18 said
Jul 20, 2019
harry, my hubby went thru the same thing with the doc; and yes he too felt they didn't believe him.
he just kept looking up tests to take for muscle diseases. they did a creatine kinese test on him and it was so high, along with other rhumatoid tests.
keep at it.
Harry said
Jul 20, 2019
Hi batman andanybody else who are having poste treatment issues ,I am getting really exhausted trying to be positive after treatment ,seems ever week there's a new problem,I've been up all nite with knee pain numb fingers feet, I'm sure my Dr thinks I'm making it up,she has a habit of ringing the liver clinic they assure her that treatment wouldn't have caused these problems my latest is bursitis in shoulders I'm really happy for the people who are doing well ,but I'm so k of thinking it will be ok will start feeling better tomorrow, when it just seems to be there an not going away I drink water eat well ect just waiting now 3mths to see neurologist hope he can do something ,now I'm looking at my feet ankles noticed they have swollen up a bit ,just can't wear socks,it's been about a year now since IV had decent nite sleep, liver clinic no support at all saw liver Dr pre treatment for about 6minutes told me how easy it will be , now I'm thinking I really did feel ok pre treatment,and I'm 66 yrs old now am I going to feel like crap for the years I have left ?don't mean to be so negative but haven't slept properly for so long ,I can't even play with my grandkids without getting short of breath,
JimmyK said
Oct 10, 2016
Welcome from me too.
Have you explored other possibilities of why you are not feeling well?
Thanks
JimmyK
Tig said
Oct 10, 2016
Hi Patrick,
Welcome to the forum. Sorry you're feeling so lousy. Can you tell us a little more about yourself? If you could tell us a bit about yourself it would help us provide some opinions and advice. Things like your genotype, treatment, recent lab tests and the problems you're experiencing. Did you achieve SVR? Let us know what's going on, we might be able to help.
chef guy said
Oct 10, 2016
ended treatment 5-18-15,wish i had never started it!!headaches are worsening,fatigue is far worse than before treatment,sleep is just a thought,and to top it off the clinic here in muskegon is rife with incompetence and baloney.had i known side effects were like this i NEVER would have taken harvoni!!good luck to you all!
coolheat said
Sep 5, 2015
Hi Tig, I tried to enter portal and it was an error page or something? Marsha
Batman said
Sep 3, 2015
Cinnamon G. Thanks Greg
Cinnamon Girl said
Sep 3, 2015
I like your attitude, Greg!
Yes, keep searching until you find the right doctor and the therapy that suits you best. I certainly understand what you mean about side effects, although sometimes we have to weigh up the pros and cons. Do keep in touch and let us know how it goes.
Good luck!
Batman said
Sep 2, 2015
Cinnamin girl, Thank you. Yes that Doctor took my money on the Prlo Injections. I will write him a note.
I'm seeing a new one that does deal with Fibro tommorow. If he won't look at me and listen I'll find another..
Yes your unsaid word were right Prolo ( For me ) is not a solution. My primary tryed to sell me cembalta but no, no more side effects for me. Thank all of ya'll for just being here. God has always brought me what I need. Part of that is ya'll. I'll let ya'll know. At my appointment half way through I'll ask the new Dr. what my name is if he knows it i'll stay. This can't be all gloom and doom.. Batman aka Greg.
Cinnamon Girl said
Sep 2, 2015
Batman wrote:
Yes, arthritis in my back has taken everything, Batman.
Suggestions on anything that can help Insurance doesent cover prolo injections and a year out still seems progresive. Help.
Myalgia post treatment is worse than the virus any advise from the experenced . I walk 1.5 miles 5 times a week..Batman aka Greg. Austin Texas
HI Greg, sorry to hear you`re in so much pain with arthritis and myalgia. You`re obviously doing all you can to keep yourself fit and active which I`m sure is the best thing to do.
I don`t know what to suggest regarding the prolotherapy injections, maybe someone else will be able to add something.
Hang on in there, I hope you find some help.
Batman said
Sep 1, 2015
Thank you.
Batman said
Aug 31, 2015
Yes the meds seemed to hang on I'm one year post treatment 0 viral count. The damage done seems progressive. I am 15 sober I exercise drink water and Gatorade. I am also 60 . I wish these companies would stand up with advise, Myalisia pain is my complaint yes a progressive side effect. If i could afford a commercial I would warn the public of the damage to your skeleton and attaching tissues. The best I'v got was can I transfer you to our legal department. I want advise from a Doctor not a lawyer. Any arthritic conditions be aware there can be severe side effects..... Besides that Mrs Lincoln how was the play......Any real Doctors out there?
Jaded said
Aug 31, 2015
I started having pain and fatigue at week 8 of 24 harvoni tx. I have always drank what I thought was adequate amounts of water so didn't pay much attention to posts I had read about drinking more water. At week 14 (about 10 days ago) I started drinking an extra 2 litres a day of water and sure enough my pain and fatigue have greatly diminished if not left (I don't want to jinx myself but so far so good). I realize now it's not always dehydration that's the issue as much as detoxing of the Harvoni drug...which has a long 1/2 life so will still be present after tx for some time. In any event...anyone who has or has had Hep C or not would benefit from better detoxing that extra water provides...so it's a good idea to keep up with it after tx I think. Just make sure you have adequate electrolyte intake in your diet to replenish what you flush. It's worth giving a try and wish I had done so earlier.
Batman said
Aug 31, 2015
Yes, arthritis in my back has taken everything, Batman.
Suggestions on anything that can help Insurance doesent cover prolo injections and a year out still seems progresive. Help.
Myalgia post treatment is worse than the virus any advise from the experenced . I walk 1.5 miles 5 times a week..Batman aka Greg. Austin Texas
Brian1412 said
Jul 28, 2015
I agree but lets wait until the. The results of the many people. Whom started treatment in the last. Year. What we are seeing now is a whole bunch of people whom are considered. Cured and a huge Tsunami. Of. Others heading that way and as the insurance companies get there act togethet there eill be another. Agsin there a ton of dsta and publications thst describe exactly the issues mentioned but still blamed on this life saving medicine
ALlL medicine will have some affect on some people:. One has to condider agae etc
Look at all the info as. Thst is yhe only way to. Get. The picture we all want: i cal tell you chemo is not easy but i am greatfull the bep protocol existed as without it i wouldnt be hete..
Barnacle said
Jul 27, 2015
I just thought I would check in here and say, one year post Tx my muscle stiffness and other aches and pains have all but dissappeared. I feel better than I have for many years. The itching, insomnia, and uncomfortable ache under my right side ribs is but a faint memory. Hep C and thoughts of my early demise were always in the forefront of my mind. I was never comfortable making long term plans because I was never sure what turns my health would take. Now I frequently forget I ever had Hep C.
For those still suffering from post Tx symptoms I can say at least in my case it does get better.
Batman said
Jul 22, 2015
Yes, arthritus in my back has taken everything, Batman
Greg D said
Jul 1, 2015
Continuing to battle very sore shoulder joints (generally at the top outside bone). Sometimes sharp, but mostly starts dull and rolls into throbbing pain within a period of a few seconds then slowly subsides. And it's even more of a 'pain' because I sleep on my stomach. I have to work the joints in the morning even to get the limited range of motion I have. Forget scratching my back because I can't get my arms there without throbbing pain...tree bark works well, but never a tree around when you need one .
Doctor mentioned acupuncture and/or physio as a possibility. Has anyone who did the riba/peg/interferon tx, or otherwise, tried this and if so, did it yield any lasting results?
On the positive side, the limited motion is helping my golf game!
Ro said
Jun 18, 2015
Rob,
I understand where you are coming from, but I also believe that it is possible that some medications exacerbate conditions causing increased effects of the condition..therefore as the pharmacist at Gilead told me, "side effects of the medication can include exacerbation of symptoms Of existing conditions" Too bad they do not list it in the literature, because it is a side effect.
Ro
Brian1412 said
Jun 18, 2015
Forlocos. Thst was the post i was looking for.the one with the link. About RA. My excperience with my hands going back a year or. Before diagnosed. My hands were ectremely painful. And i would have my girlfriend. Rub my knuckles for hours. Was about a year and one day it dissapered. I have not had the issue since. A few yesrs ago i even saw a specislist for RA.
So i absolutely. Would believe this could have beem hep c virus...not the pill. I also have a bad lower back from years of airplanes. Several others on the circus. The same w several having surgery. I have hsd c spine sugery. Have bone graft plates. I took 90 pills and not once did i have pain. In my neck .my back yes but it was not the pill. Same things. That were there for years before
I know first hand thst somones pain is there pain and i totally respect it... i just cant imagine this pill causing mass. Sciatica. Or degenerative. Disk problems so fast: if it were they pill they would certainly. Be all over the issue. As they are legally responsible. To do so. There is. The y already know they have in msny ways one of the biggest blockbuster drugs ever and another one right behind it: no way they would skimp or decive. They spent.
22. BIlLION. Dollars:
Lastly i stumbled. On another. Site associated. With some we all know and respect.in reading her post right at trial many members were posting their. Bad back on the pill. Days sfter taking it. They were at feverish pace declaring the pill. Was responsible. It read to more like a hopefully lawyer. Looking for a potential class action gig to me
For me the perspective. Was a few years. Back was when i started listing a whodt of issues. I had physically.he deadpanned. Me and finially he said....your not. 22 any more. He was right.
Again i am not questioning how people feel. I wonder how in the last 90 days. People are now saying there are issues with this med when there is yet firm evidence. And everything. Points to the opposite.this drug is working exactly. As they said it would
Peace
Cinnamon Girl said
Jun 18, 2015
basser wrote:
hi all.can relate to most of the post tx aches and pains. i keep reminding myself that this time last yr i was in the grip of the virus and could not imagine seeing this yr. tx was rough.and post tx has been bumpy. am feeling so much better this wk after being in hospital. just know that there is life after hep c. best of health to you all william
Hi William, just wanted to say I`m so pleased you`re feeling better this week after your hospital stay.
Take care, and all very best of luck. Hope you`re managing to get out and enjoy this lovely weather we`re having!
basser said
Jun 18, 2015
hi all.can relate to most of the post tx aches and pains. i keep reminding myself that this time last yr i was in the grip of the virus and could not imagine seeing this yr. tx was rough.and post tx has been bumpy. am feeling so much better this wk after being in hospital. just know that there is life after hep c. best of health to you all william
Tess said
Jun 17, 2015
Our bodies have been fighting the virus for a long time, and maybe other problems were being held back too, as collateral damage. Is it possible that once the virus is gone and the fight is over, our immune system relaxes - - and other problems that were held at bay during the HCV battle have a chance to surface? Just a thought...
Tig said
Jun 17, 2015
Hey BJ, Ro and All,
I saw your suggestion of a thread to present personal information/insight to Gilead (and others) on the Harvoni protocol. Just so happens that Matt started one yesterday and you might be interested in adding your two cents. It could be very informative to all interested.
While doing my clinical trial not many questions were asked during the trial to be submitted to the pharmaceutical company. While on the trial, I began to have stomach pain and it has continued to now--over a year later. I am having medical tests now for the pain. I do notice muscle pain I did not have before my trial. I had tests before being allowed on the trial. Most people that were allowed on trials were healthy. Since I had few symptoms of Hep C before my trial (like many seemed to have) I am hardly a copy cat of other people's pain. It may be that this group of drugs do cause symptoms post treatment for some people--and, oddly, the pain seems to be similar. These drugs are a new set of drugs and they may cause post treatment symptoms that were NOT recorded in the small group that did clinical trials. I did know that I was on a clinical trial--that the drugs were new--and that there was only a little bit of information regarding the use of the drugs or possible post treatment problems. Drug companies DO NOT have extensive data on new drugs either. If you watch commercials, you know that many widely used drugs are having post treatment symptoms that were not recognized in the early days of these drugs.
So, I do agree that ongoing symptoms should be reported to the drug company. Maybe they can find out why and eliminate the cause.
Of course, every symptom I have could be caused by old age but I am only one year older. No need to discuss the alternative to old age LOL.
SuziQ
Brian1412 said
Jun 17, 2015
I am certain Gilead. Knew exactly what they had in this medicine long before we came. And fast track by regulatory approval supports that. I am sure that there werent anything like "can cause cancer etc that we see on so many inserts
My opinion
Brian1412 said
Jun 17, 2015
I had joint pain before. I dont habe it now.. i had lowerbavk pain fron year's my hands are like newnow . Of airplanes. I still have lower back pain now. I had cramps in my legs before when dehydrated. I have then now when dyhydrated. I drank water they go away.
It is common. When being treated for some heavy. Things. Like lets say cancer and the dr says. You will have s little. Of blank condition. And it wasnt long everyone else did too
Many drs will tell you thst in med school , say they were lesrning about hives, the whole class would end up in vlinic and the all thought they had hives...
I dont know a pill that causes lower back pain. Unless kidneys. Bladder infection or something like that so i wonder how Harvoni could causes. It.? I have not hesrd or read that this was an issure. Anywhere.
The arthritis. Hand thing. Along with past treatments of old,may jave some merrit..sounds reasonable
Also dont dissmiss ptst.. happens to cancer people quite often
Although for me and i am sure others who had a very easy treatment i could see this being a traumatic experience. To many
I think it is very importsnt to report obvious side effect issues to Gilead
Carefully for the people coming after us:
Just my opinion
Peace
fourlocos said
Jun 16, 2015
I made sure to report my leg and foot cramps to not only Gilead but the FDA. You can do so on their website. While it is better than during treatment I seem to have been left with restless legs at night often. Tossing and turning, so annoying. I am four months post treatment and I am better with the fatigue and achiness but have joint issues and things that I never had prior. I figure time will tell how it plays out. I am happy to have been treated and hope for a great future. Make sure to please report any and all issues Gilead and the FDA. I can't understand how Sovaldi can have a long list of side effects and Harvoni has two!
coolheat said
Jun 16, 2015
Sorry for repeat, operator error <I too wish there was a "like" button. Ditto>
-- Edited by coolheat on Wednesday 17th of June 2015 02:25:52 AM
Hi Iris,hope your going ok ,and the fires are not near you ,where I live fires seem to be annual thing these days ,trying to quit cigarettes isn't much fun ,IV cut down a lot,it's hard when you walk outside and the air is so smokey from fires,how's your numbness going ? mine doesn't seem to be going away , I think my poor dr has put me in the too hard basket !!,lol ,he must be getting sick of my aches pains,wants me to do a stress test with heart dr to see if he can find anything,lol my mother had late diabetes when she was about my age so I did the diabetes test my number was 9nurse said bit high and may look into it, oh well guess if they keep looking they will find something,lol I consider myself lucky to be still on the planet ,take care of yourself ,best wishes to Tig 5 observer and every body else out there I'm just to lazy this morning so many Carring people take care hope fires not too close...
Guru,thanks for your thoughts, yes it is a hassle waiting for appointments,for so called specialists only to find out ,you knew already maybe, The hep C people over here were all so helpful before I started treatment ,yes the virus is gone thankfully,but I find it really hard trying to find out anything about Poste treatment health problems,take care Guru,and yes excercises help
Enjoy that daily dose of Caffeine, Brother! Without that, the day is always off to a slow start... I agree, you have to wonder about the attention paid by western medical problem solvers.
hi harry, i'm just sending so me good thots and prayers your way
Harry, Im glad you got there and back safely. Sorry it was not the help you were hoping for, but not particularly surprised.
In my experience, western medicine relies far too much on one size/symptom fits all and in the box thinking.
I wasted so so so much time pushing for and waiting for specialists over the years. I have had some pretty drastic and life affecting auto immune symptoms but despite going to 3 immunologists (all with loooooooooong wait lists) never got a diagnosis or any helpful advice from any of them.
Chi gong was developed for healing and I find it has really helped me a lot. My balance is improved, my aches and pains are less and I feel energized....I also walk everyday...I have a lazy bulldog so its more of a saunter, but I do walk an hour in the afternoons and 20 minutes in the evening.
Do you enjoy swimming? thats super gentle and healthy exercise
Do you take magnesium glycinate? If not...you really should consider it..it is very very good for the nervous system.
I cant find the link I was looking for for the chi gong, but in searching I saw there are lots of videos and examples available on YouTube etc....
Anyhoo, take care Harry hope you feel better soon
Harry Im so glad you are trying some chi gong ....
My favourite one is called parting the clouds...palms together as I slowly raise above head (with inhale) then hold/stretch then kinda trying to press against the air (sort of self imposed resistance)as I exhale and return arms ... its so gentle and you can do it standing or sitting or even lying down if you have insomnia...
I stumbled upon a link from some morning show many years ago that has a 3-5 minute wake up routine...its not really proper ancient chi gong but its a great stimulation based on chi gong that I do everyday while waiting for my cappuccino milk to steam...Ill dig around and see if I can find it for you and pm it to you when I do.
Harry,
It sounds like you are onto something with the look into nerve pain. It makes sense to me that you could get significant relief along these lines.
Sorry you have to wait until September as you have waited a long time already, but it is good news that you are moving forward.
Hang in there, Harry.
@ Iris, you had me at marijuana brownie! Im guessing youre in California? Im super jealous that we cannot have access to cannabis here in Texas, it just seems senseless. I will spare everyone a discussion of politics or policy, just because Im in a red state doesnt mean everyone here sports a confederate flag and a MAGA hat, despite our differences we get along for the most part, there is still a great deal of hospitality and politeness to be found in the Deep South. If cannabis would aid Harry at all then i think he should have it.
@ Harry, Im discouraged that youre not getting answers to this assortment of maladies. I am ever hopeful that you will begin to feel better, its just discouraging that you are dealing with these things that are nagging you. I hope that there is some positive resolution.
Hi Harry, I can relate very much to the numbness you speak of. We were on different drugs but it makes me wonder if these DAAs accelerate an already in place problem or what, But my three toes on the left foot are still numb, also experiencing overall weakness, been trying to counteract that with walking every evening, so far not much improvement, kinda feel like I'm crawling back to my self ever so slowly. Say, I wonder if you could get a marijuana brownie?, then you may get the rest you seek. Best wishes!
Iris
Oh harry, I sure hope your Drs can get you into a neurologist soon. Pinched nerves
...poor you! Those are for sure going to cause numbness. I really hope you can get some help from the medicals soon.
Im not surprised the liver people dont think your problems could have been triggered or stem from the treatment...it seems like all the specialists only understand their own specialty..HCV affects and damages a lot of our systems but they all seem to think if the liver is fixed that is the end of our problems..It isnt.
Many of us have had our nervous system react to the DAAs. Time has helped most of us somewhat...
I do a type of exercises called Chi Gong .... very very simple ...its like tai chi but is used specifically for healing. You can google chi gong for nervous system and learn a couple of the exercises if you want to try it.
I am not a fan of the heat, I have fans and air purifiers running day and night. (I bought a nifty Dyson one with credit card reward points)
Anyhoo, thinking of you Harry and hope things improve for you
hey harry , finally my hubby is starting to feel mostly normal at just over a year and a half post tx.
he had so many problems, couldn't gain weight; then he finally started and his blood pressure went up. took bp meds awhile but that didn't help.
now he is eating fewer high sodium meals and also not doing aggressive exercise since that makes his body hurt. i always found that too much sodium makes my body hurt
it's kind of a living experiment to find out what makes things worse and then what makes them better.
-- Edited by 5-1-18 on Wednesday 7th of August 2019 06:17:11 PM
Hey Harry,
I’m sorry to hear you’re still feeling so poorly. It sounds like you could use a caring and accessible doctor to get to the bottom of these issues. I believe there is something at the root of these issues that would provide you with some relief, if you could get the testing needed to find it. I can’t imagine having to wait six months for care and then having to drive 200 miles to get it. Especially when you’re feeling so poor!
I don’t think the Epclusa is solely responsible for each of your problems either, but it certainly could and should be included in the equation. Many people experience some increased joint and muscle pain following treatment, but it tends to be short lived and not chronic. If you have some inflammation that is adversely impacting the nerves in your arms and legs, it could be responsible for some of that increased numbness.
The old drugs I was on, did cause me some ongoing issues as well. Hearing loss, severe tinnitus and arthritis are just a few. When we start these treatments we don’t expect new problems to develop. The one thing to remember is, most of these lingering problems are temporary and will improve. Had we not gone through it, I guarantee you the liver damage would’ve continued to escalate from this virus and could’ve presented some serious problems down the road. They used to say we would probably die from something else and not from the Hep C virus. Then people started experiencing and understanding the myriad of extra hepatic manifestations the virus causes. Little did the doctors know, but the virus was manifesting itself in a dozen ugly ways. People were dying and suffering with symptoms previously written off to the unknown. They’re paying attention now and we have to keep knocking on their door to let them know these issues are real.
Hang in there, Brother...
Harry,
I don't what is going on! This is awful. I'm sorry you can't get better medical attention.
I'm just offering an ear and letting you know that I feel for you. As I recall, you have only a few clinics in your area? I just think you have to keep going, or go further away. You can't stop here in this unacceptable condition. As 5 points out, some solutions are more mysterious than others.
Very sorry, Harry.
harry, my hubby went thru the same thing with the doc; and yes he too felt they didn't believe him.
he just kept looking up tests to take for muscle diseases. they did a creatine kinese test on him and it was so high, along with other rhumatoid tests.
keep at it.
Hi batman andanybody else who are having poste treatment issues ,I am getting really exhausted trying to be positive after treatment ,seems ever week there's a new problem,I've been up all nite with knee pain numb fingers feet, I'm sure my Dr thinks I'm making it up,she has a habit of ringing the liver clinic they assure her that treatment wouldn't have caused these problems my latest is bursitis in shoulders I'm really happy for the people who are doing well ,but I'm so k of thinking it will be ok will start feeling better tomorrow, when it just seems to be there an not going away I drink water eat well ect just waiting now 3mths to see neurologist hope he can do something ,now I'm looking at my feet ankles noticed they have swollen up a bit ,just can't wear socks,it's been about a year now since IV had decent nite sleep, liver clinic no support at all saw liver Dr pre treatment for about 6minutes told me how easy it will be , now I'm thinking I really did feel ok pre treatment,and I'm 66 yrs old now am I going to feel like crap for the years I have left ?don't mean to be so negative but haven't slept properly for so long ,I can't even play with my grandkids without getting short of breath,
Welcome from me too.
Have you explored other possibilities of why you are not feeling well?
Thanks
JimmyK
Hi Patrick,
Welcome to the forum. Sorry you're feeling so lousy. Can you tell us a little more about yourself? If you could tell us a bit about yourself it would help us provide some opinions and advice. Things like your genotype, treatment, recent lab tests and the problems you're experiencing. Did you achieve SVR? Let us know what's going on, we might be able to help.
ended treatment 5-18-15,wish i had never started it!!headaches are worsening,fatigue is far worse than before treatment,sleep is just a thought,and to top it off the clinic here in muskegon is rife with incompetence and baloney.had i known side effects were like this i NEVER would have taken harvoni!!good luck to you all!
Hi Tig, I tried to enter portal and it was an error page or something? Marsha
Cinnamon G. Thanks Greg
I like your attitude, Greg!
Yes, keep searching until you find the right doctor and the therapy that suits you best. I certainly understand what you mean about side effects, although sometimes we have to weigh up the pros and cons. Do keep in touch and let us know how it goes.
Good luck!
Cinnamin girl, Thank you. Yes that Doctor took my money on the Prlo Injections. I will write him a note.
I'm seeing a new one that does deal with Fibro tommorow. If he won't look at me and listen I'll find another..
Yes your unsaid word were right Prolo ( For me ) is not a solution. My primary tryed to sell me cembalta but no, no more side effects for me. Thank all of ya'll for just being here. God has always brought me what I need. Part of that is ya'll. I'll let ya'll know. At my appointment half way through I'll ask the new Dr. what my name is if he knows it i'll stay. This can't be all gloom and doom.. Batman aka Greg.
HI Greg, sorry to hear you`re in so much pain with arthritis and myalgia. You`re obviously doing all you can to keep yourself fit and active which I`m sure is the best thing to do.
I don`t know what to suggest regarding the prolotherapy injections, maybe someone else will be able to add something.
Hang on in there, I hope you find some help.
Thank you.
Yes the meds seemed to hang on I'm one year post treatment 0 viral count. The damage done seems progressive. I am 15 sober I exercise drink water and Gatorade. I am also 60 . I wish these companies would stand up with advise, Myalisia pain is my complaint yes a progressive side effect. If i could afford a commercial I would warn the public of the damage to your skeleton and attaching tissues. The best I'v got was can I transfer you to our legal department. I want advise from a Doctor not a lawyer. Any arthritic conditions be aware there can be severe side effects..... Besides that Mrs Lincoln how was the play......Any real Doctors out there?
Yes, arthritis in my back has taken everything, Batman.
Suggestions on anything that can help Insurance doesent cover prolo injections and a year out still seems progresive. Help.
Myalgia post treatment is worse than the virus any advise from the experenced . I walk 1.5 miles 5 times a week..Batman aka Greg. Austin Texas
I agree but lets wait until the. The results of the many people. Whom started treatment in the last. Year. What we are seeing now is a whole bunch of people whom are considered. Cured and a huge Tsunami. Of. Others heading that way and as the insurance companies get there act togethet there eill be another. Agsin there a ton of dsta and publications thst describe exactly the issues mentioned but still blamed on this life saving medicine
ALlL medicine will have some affect on some people:. One has to condider agae etc
Look at all the info as. Thst is yhe only way to. Get. The picture we all want: i cal tell you chemo is not easy but i am greatfull the bep protocol existed as without it i wouldnt be hete..
For those still suffering from post Tx symptoms I can say at least in my case it does get better.
Yes, arthritus in my back has taken everything, Batman
Continuing to battle very sore shoulder joints (generally at the top outside bone). Sometimes sharp, but mostly starts dull and rolls into throbbing pain within a period of a few seconds then slowly subsides. And it's even more of a 'pain' because I sleep on my stomach. I have to work the joints in the morning even to get the limited range of motion I have. Forget scratching my back because I can't get my arms there without throbbing pain...tree bark works well, but never a tree around when you need one
.
Doctor mentioned acupuncture and/or physio as a possibility. Has anyone who did the riba/peg/interferon tx, or otherwise, tried this and if so, did it yield any lasting results?
On the positive side, the limited motion is helping my golf game!
Rob,
I understand where you are coming from, but I also believe that it is possible that some medications exacerbate conditions causing increased effects of the condition..therefore as the pharmacist at Gilead told me, "side effects of the medication can include exacerbation of symptoms Of existing conditions" Too bad they do not list it in the literature, because it is a side effect.
Ro
Hi William, just wanted to say I`m so pleased you`re feeling better this week after your hospital stay.
Take care, and all very best of luck. Hope you`re managing to get out and enjoy this lovely weather we`re having!
hi all.can relate to most of the post tx aches and pains. i keep reminding myself that this time last yr i was in the grip of the virus and could not imagine seeing this yr. tx was rough.and post tx has been bumpy. am feeling so much better this wk after being in hospital. just know that there is life after hep c. best of health to you all william
Our bodies have been fighting the virus for a long time, and maybe other problems were being held back too, as collateral damage. Is it possible that once the virus is gone and the fight is over, our immune system relaxes - - and other problems that were held at bay during the HCV battle have a chance to surface? Just a thought...
Hey BJ, Ro and All,
I saw your suggestion of a thread to present personal information/insight to Gilead (and others) on the Harvoni protocol. Just so happens that Matt started one yesterday and you might be interested in adding your two cents. It could be very informative to all interested.
http://hepcfriends.activeboard.com/t60384058/reflections-on-harvoni-before-during-after/?w_r=1434588149#lastPostAnchor
Brian
While doing my clinical trial not many questions were asked during the trial to be submitted to the pharmaceutical company. While on the trial, I began to have stomach pain and it has continued to now--over a year later. I am having medical tests now for the pain. I do notice muscle pain I did not have before my trial. I had tests before being allowed on the trial. Most people that were allowed on trials were healthy. Since I had few symptoms of Hep C before my trial (like many seemed to have) I am hardly a copy cat of other people's pain. It may be that this group of drugs do cause symptoms post treatment for some people--and, oddly, the pain seems to be similar. These drugs are a new set of drugs and they may cause post treatment symptoms that were NOT recorded in the small group that did clinical trials. I did know that I was on a clinical trial--that the drugs were new--and that there was only a little bit of information regarding the use of the drugs or possible post treatment problems. Drug companies DO NOT have extensive data on new drugs either. If you watch commercials, you know that many widely used drugs are having post treatment symptoms that were not recognized in the early days of these drugs.
So, I do agree that ongoing symptoms should be reported to the drug company. Maybe they can find out why and eliminate the cause.
Of course, every symptom I have could be caused by old age but I am only one year older. No need to discuss the alternative to old age LOL.
SuziQ
I made sure to report my leg and foot cramps to not only Gilead but the FDA. You can do so on their website. While it is better than during treatment I seem to have been left with restless legs at night often. Tossing and turning, so annoying. I am four months post treatment and I am better with the fatigue and achiness but have joint issues and things that I never had prior. I figure time will tell how it plays out. I am happy to have been treated and hope for a great future. Make sure to please report any and all issues Gilead and the FDA. I can't understand how Sovaldi can have a long list of side effects and Harvoni has two!
Sorry for repeat, operator error
<I too wish there was a "like" button. Ditto>
-- Edited by coolheat on Wednesday 17th of June 2015 02:25:52 AM