Hep C Discussion Forum

Dalila · Member

RE: Epcluser's Corner

Dalila · Member

Dear Canuck! I know that I am not cured. I was just suprisef that my got, gpt, ggt was so law after four days of treatmeant. I think it is important to have a doc I can trust therefore I have to look for someone. When I get migraine or headaches I useally take diclofanace or ibumectine. I do not take real migraine medication since I had very bad experiences with them. I have a chinese tcm doctor who puts herbs together for me. I do not know which ones. I am also doing acupunter and physiotherapy. The best think for my headaches and neckpain is swimming which I could not do the past days because I felt so bad. My homeopathic doctor gave me Gelsemium and Belladonna for headaches. Those medications do not help always but I useally do not get such heavy headaches like I experienced them just the last days. Useally my bloodpressure is nirmal but I will do some tests with a cadiologist within the next weeks. I think that the bloodpressure and the pain influences each other. I am still having headaches now and at the moment I am takeing medication for the bloodpressure. I used to try a treatment wirh ribavarin

Canuck · Guru

I'm so sorry to hear this Dalila!

Your liver panel is NOT normal BECAUSE you took epclusa for 4 days (I can not recall for sure, right here and now, but the prior enzymes you postsed I think were within normal limits anywayl ... so, it would be extremely doubtful you helped or cured your HCV or derived ANY benefit from only taking 4 days of any DAA out there currently available on the market. I do not want to you be thinking a "short" course might have helped you in anyway, in case you were thinking that.

I am glad you are going to regroup and try again at a later date, you WILL need the advice of a good doc you feel comfortable with and trust, doubly so, being that you started and then prematurely stopped a DAA treatment.

In the meantime, continue to educate yourself about epclusa and all the new DAA's - there is much to know, it is important you do so, and there IS much data attesting to how good epclusa is. (You had received one of thee very best DAA's BTW!) Believe me, there are many docs out there who are now just absolutely thrilled they have been given the ability to be able to prescibe epclusa.

These drugs are powerful and effective, and are NOT meant to be started and then stopped before the end of the prescribed course.

I am sorry for what you experienced and what has transpired. You get there eventually.

I DO hope you pursue and get to the bottom of your migraine and BP issues, keep in mind, that they may NOT be related soley to HCV therapy.

Please do keep conversing with us here. I hope we can be of some help to you now and in the future. I would still be interested to know your past history BTW (questions I was asking you about your BP/migraines/herbal remedies). smile C.

-- Edited by Canuck on Thursday 27th of April 2017 10:14:32 PM

Dalila · Member

I thank everybody for your advices. I stoped takeing epclusa. The problem we have in Austria is that there is obviously not much experience with Epclusa. Its been only on the market for four weeks. The doctors in the hospital think that I am stupid since I told them about my sideeffects. They say normaly there are no sideeffects. My headache is still terrible and I almost couldn' t work to day again. I cannot efford to loose my clients since I have noone to support me and I make money in my own business. The positiv thing is that I did a bloodtest and my liverparameter are totally normal although I took Epclusa just for four days. I decided to find a doctor whom I can really trust and who will take my physical problems seriously. I hope I find someone and then I will start the treatment before Christmas. At this period of the year I can take of one month from work and I will find the time to take care of myself. At the moment I am under to much existential pressure and this makes me sick too. Also I think that by december even Austrian doctors will have more experience with epclusa and then they can advise me better. Thank you all for your support. best regards Mary Dalila

Dalila · Member

Stoped Epclusa

Ruby Red · Senior Member

Hi Mary

Please don't get discouraged!! Yes headaches and feeling just down right crummy is what I experienced at the beginning of treatment as well. I just remembered there was a battle a foot in my body, a battle that was going to be WON, so experiencing some uncomfortable sides was ok with me and really expected. Epclusa is your warrior and a fierce warrior at that...not to be beaten...victory all the way!

One day I felt a feeling of euphoria, I had no pain which I had already been experiencing thanks to the dragon, no fatigue, no nausea...I felt GREAT!! This feeling came more frequent and the nausea, headaches etc came and went lasting only in short periods. Keep up with the water, that is definitely the key!

You've got this, hands down you are on your way to SVR!!

Ruby

Canuck · Guru

Hi again Dalila,

I just noticed your other post in another area of the site, so instead of jumping around from one thread to another, I will just add to what I wrote here, to address your other post.

Tig answered your concerns well, and gave good advice about seeking the doc for advise/relief/remedy of these headaches, did the doc actually take your BP?, did you take your own BP?, how high was it?, have you a prior history of high BP?? Have you ever been treated for headaches, migraines or high BP before?? What is the "herbal" thing for headache that you have taken? Headaches are a common complaint, especially in the beginning or when underhydrated with most the the HCV drugs, migraines not so much - but what may start out as a simple headache for people on HCV drugs, when you also happen to be a known chronic migraine sufferer, could turn into a full blown migraine - how do you combat your migraines normally? How frequent were your migraines prior?

Yes, there are some "herbals" (and or prescriptions) that can interfere with HCV meds, so, be sure to ask your doc about what herbals or drugs you CAN use for your headaches. Did your doc not make any suggestion as what you could or should take for headache, especially if you have taken something for them before?

You also sound like you are under a lot of pressure, not feeling well AND being required to work, own business/self-employed/with no time off, that can only make you feel even more stressed out on top of not feeling well! Additional stressors (from all angles) can ONLY make ill-feelings, blood pressures and headaches worse!

Keep in mind, that you are only only your 4th? day. These are early times, this very well could be a "transition" period for you, something that will lessen, and that you will find you are able to tolerate the rest of your treatment time with way less of the symptoms you are experiencing now.

If the headaches or ill-feelings are not constant and "fluctuate" downward at times, you may well be able to credit that to the 4 liters per day of water per day that you have been trying to drink. Do KEEP up the water drinking, with all that peeing, that too will interfere with work, but keeping the water intake up is most necessary. I too, like Tig hope to see you get over this initial hump, and meet with some relief of what you are feeling, like many others do in the first couple weeks. Do ask what the doc wants you to take for headaches. Do have your BP's documented and followed.

Hang in there! C.

...

Canuck · Guru

Hi Dalila,

Welcome to the forum.

I'm glad you were able to get epclusa, it means you are going to have your hepc cured!

Sorry you are having these symptoms - PLEASE, PLEASE, PLEASE make sure you are doing what TIG and Jaggles advised you about - drink 4 liters of water per day, every day, without fail. Like most of the folk here who have taken epclusa, if they felt unwell, it seemed to be mostly in the beginning, and, many times could be greatly helped by MAKING SURE you are extremely well hydrated

Do not worry about something that is very rare, the B reactivation thing - there has been much paranoia and "talk" about it.

More so, you should be concentrating on far more likely things - like ... how you can make yourself feel better, right now, by drinking more water, like ... how you you are doing the very best thing you could possibly be doing for your health and future by doing what you are successfully doing right now, killing this hepc virus!

You will see, there ARE others here, who have taken or are on, various new DAA's, who are just like you, who had a hx of hepb and you can see we have had no problems with B reactivation - it is a rare thing. (Me, Jaggles, Shadowfax and there are some others.)

Docs are well aware of testing you for any co-infection, prior to HCV treatment, and would have made provisions for this - hep B, HIV, etc.

Jaggles is right about conversing with you doc about how you are feeling - when are your next appointments booked with him, when do you get your next bloods drawn?

Do try to write up a little signature line for yourself (you can see, like the ones we add to bottom of our posts) it very helpful info when we are having discussions over time - "how to's" are in that red link under Tig's sig. line. Things like your Fscore, etc.

It IS worrisome territory we wander into, having HCV, including getting past the fears and thru treatment, but nowadays the stats are speaking for themselves, how well we are being rewarded for our bravery, with far easier success, unlike the old days - near 100% cure rates. Concentrate on that, and what with with your water drinking and bumping heads with your doc, try to get yourslf feeling better. I am betting you will start feelin some relief of these things, shortly. smile C.

Jaggles · Senior Member

Hi Mary

I had Hep B 35 years ago, it did nearly kill me and at the time my liver collapsed. When I got diagnosed with Hep C last year I was terrified that I would die this time. I asked my Hep Doctor if there was any possibility of Epclues reactivating the B but they told me this cannot happen as they checked and B is not dormant in me, they said it is done and resolved. I am drinking so much water as advised by Tig and Canuck and it really does help rid any side effects. I'm now nearly one month into my treatment of 12 weeks and starting to feel like me again. You should ask your liver doctor if there is any chance of B being reactivated .....and then make sure....drink drink drink water at any opporeunify. I hope you feel better and get some answers from your doctor to ease your mind as having this is enough to worry about. Eat lots of healthy vegetables and drink lots of water.

regards

Jayne

Tig · Admin

Hi Mary,

We have members that took Epclusa, one with Voxilaprevir while they were still in trials. Canuck and Shadowfax come to mind quickly. Hopefully they'll see this and respond. They were both successfully treated, without reactivation of their B status.

They will test you and watch your results accordingly. It wouldn't bring me to pass on treatment though. That's a conversation you should have with your doctor. We have some information here on the forum. You can use our search function above or review the home page for more discussions and links.

Dalila · Member

Hi, on the website of epcluse i sae that a sideeffect of epclusa could be that an old hepatitis B can be reactivatet again and that you can even die of it. I have had hep b as well many years ago which has been cured. This is very scarry to me. Had anyone else got a cured hep. b and is takeing epclusa? Thanks for the answer.

Tig · Admin

Hi Maria,

Welcome to the forum! We're a global forum with people from every corner of the world. I'm glad you found us.

My first concern is whether or not you are hydrating adequately. How much water are you drinking daily? If you weren't told, you should be drinking at least 4 liters of water each day. These new drugs make great demands on your metabolism and will dehydrate you. Start each day with with a big glass of water and keep a refillable water bottle with you always. Sipping on it all day will assure you stay hydrated. Just be absolutely sure you drink a full 4 liters each day. It's very important. When anyone comes here and mentions your symptoms, 9 times out of 10 it's due to inadequate hydration. Drinking soda or sugary drinks doesn't count! Headache, muscle aches and fatigue are common symptoms related to a lack of fluids when taking these medications.

When you're feeling better, why don't you introduce yourself in a new thread in the New Members section? Tell us a little about yourself. We'll be able to offer better informed opinions when we know more about you. You can add what you know to your signature line for reference. If you have any questions or need help understanding the forum, let me know.

Now get out there and drink a BIG GLASS OF WATER!!!!

Dalila · Member

Hello, I am new here. I am from Austria. I have got hep. C 2b for about 40 years now. There is no such forum in Austria. I am takeing Epclusa since three days and I feel terrible. I am haveing such terrible headaches wich do not stop. Also I am very very weak and my stomach does not feel well. Excuse my Englisch. Can anyone help me and tell me if those sideeffects will go away? Thanke you.

Jaggles · Senior Member

I wouldn't be concerned, but remember to mention it to your doctor next time in.

Hi Tig, yes I will be seeing Hep nurse next Tuesday so will tell her. Thanks ....you have put my mind completely at ease although I was not worried.

Thanks too Ruby ...yes wonderful things happening...

UP YOURS Dragon biggrin

Ruby Red · Senior Member

Phoenix

Such wonderful news!! Life is Good!!!

Ruby

Tig · Admin

Hey Jags,

You share a common story. There isn't a lot of discussion yet regarding the lighter stool color related to Epclusa, but their certainly is with Harvoni. Kinda leads me to think it's the Sofosbuvir (Sovaldi) that may be doing that. What I have read is similar in nature to yours, a day or two or three of lighter colored poo and then it's back to normal. The color of poo is secondary to the bile released by the liver and gallbladder. If something interferes with it and decreases or increases, you're going to see it in the bowl. I wouldn't be concerned, but remember to mention it to your doctor next time in.

Jaggles · Senior Member

Hi all ....so grateful to be posting here....now on day 20 of Epclusa ....got undetected at 2 weeks so still early days. I've been fine and drinking up to 5 litres day...had a bit of a scare day before yesterday as (too much info) stools were very pale ....I have been taking paracetamol and ora morph for joint pain ...had a bad headache so took full amount for couple of days and then got pains in lower ab ...stopped taking pain relief ....today stools normal colour again and pain gone.....and apart from sleeping a lot , hot flushes and joint pain I'm ok.......I've been reading your posts and lots of you carried on getting pain and fatigue all way through so I'm not too worried. 2nd lot of bloods being done next Tuesday so hope to see continuity...anyone else get pale beige stools whilst on treatment? Like I said they are ok now....what the hell can make them go like that ? I tend to worry as when I had HBV all those years ago...stools were like that...toilet talk ...I know but its relevant biggrin

Canuck · Guru

Phoenix,

That was a fair wait you had, to feel great about getting that EOT+12 UND! As, you has to wait all the way from your 4 week VL until EOT+12, didn't you?? So, that long-awaited but BRILLIANT EOT+12 UND almost takes the sting out of being subjected to the resp. tortures you have been having to put up with. I do hope that all that coughing stops for you soon. (I'm tellin' ya, it's all the fault of the little people, those walking fomites)! Do keep us posted on how you are faring, what things keep improving for you. Knock on wood (I have long learned now - to say that first!), I really, truly, do believe I have finally turned the corner on the ankle/pedal edema thing that I used to so persistently harbour. I hope it may it be the same for you in the near future.

Did you get any ALT/AST's with your EOT+12 VL?? They didn't provide you with many ALT's either throughout treatment, did they! I think you only priors were ALT/68, AST 48? Do let us know if you have any updated ALT's or other bloods as well.

So, your next VL and bloods will be at EOT+24? Has your doc planned your "follow-up" at 6 months, and beyond, will you get another fibroscan to see if you have improved on your 10 kPa's?

You responded so beautifully to the epclusa, from 22 million to a measely 36, in such short order, the death blow had been dealt out long ago at only 4 weeks into treatment, but still, we all know none of this journey is easy. Keep enjoying your rest and respite from that hep devil virus - keep celebrating how magnificently you have whooped his a**! biggrin C.

Phoenix17 · Senior Member

Thanks Canuck! It does feel great!

Canuck · Guru

Hey Phoenix,

Cheese, dem dare are some great numbers ya got yersef girl!

This is turning out to be my kinda party! Invitations and countdowns to this long awaited celebration bash has definitely been a long time coming, but we're definitely on a ROOOOOLLLLL now!

Phoenix, I know you are having a good time partying, but if you don't mind me mentioning, we can ALL see your UND-IES!!!!!!!!!!!!!

What could be a greater time than sharing this moment with you dear. biggrin C.

Phoenix17 · Senior Member

Thanks Jimmyk!

JimmyK · Guru

Hello to you as well and congrats!

JimmyK

Phoenix17 · Senior Member

Hello ! It has been awhile since I have been on here. Spent most of the last few months with upper respiratory problems. Getting over Bronchitis which I had to take a few days off from work, (which I never do) I hope everyone is well!

Oh ya,one more thing. Had my 12 week post treatment on Tuesday. UNDETECTED!!!!! How sweet it is!

GoldenCurls · Member

Hello all, I am having a tough time deciding wether or not beginning epclusa this week would be a good idea as my A levels are this summer.
I have made a thread in the new members area earlier, but thought I would write a quick reply here as i have been reading this thread. Thank you for all the great information! Sounds like there are very positive results for this drug, and very minimal side effects.

Tig · Admin

Hi Jen,

Thanks for the reply and update. I hope you get better pain relief with the new medication. Be cautious with it's use. I was on high doses of opioids for years. When I lost my insurance and doctors, I was left to wean myself off of them. It's not something I recommend.

I'm thrilled to hear about your able bodied and energetic helpers! At that age, their internal batteries never run down. I envy their ability to go all day and at bedtime they're out and stay out for 9 hours. I remember (sort of) what it was like, it was marvelous! Sounds like you have a wonderful network of people that really care about you. Enjoy it!

Keep in touch, we're here to help get you through this!

Ruby Red · Senior Member

Hi Jen

You are a strong woman and have proven it every step of the way....you've got this!!! The prize is so worth the journey rocky as it has been. You've got a positive attitude and that will get you through to the end@ High five Girl!!!

Ruth

Phoenix17 · Senior Member

Hang in there Sanuk! You will be glad you did. I know it's hard sometimes, but it won't be forever.

Canuck - My doctor blames everything on my little guys! Well... not everything biggrin I always thought that we should have something like the CDC has that when you are working with infectious diseases. You would have to go through a little room that sanitized you when leaving. The joys of working with kids! Feeling pretty good, but a trip to a nice warm island (as I am listening to snow plows outside) would even better!

-- Edited by Phoenix17 on Wednesday 11th of January 2017 07:58:42 PM

Sanuk-Sanan · Member

Hey Canuck and Tig,

Thanks for the encouragement. Yup "eye on the prize" and "keep your why nearby" are my mantras! 17 days left!

I haven't done the saunas or baths. I'm now to a point where I don't have the strength either in my legs or arms to get in or out of a tub. My cardio every morning is getting dressed hmm but I was able to get better than ibuprofen analgesia. My oncologist (bless him!!) has RX'd me some of the good stuff. Of course constipation comes with the good stuff, but I'm ok with that for now.

The onc also checked out my magnesium and electrolyte levels and they are ok.

Oh yes, without helpers I'd be a mess. I have a 9 year old helper who will run his energetic legs and get anything I ask. The 6 year old will, too, just with a little less spunk. I'm doing bare minimum housework (thanks fam!!!). My boss is amazing! and right now my team is pretty much carrying and covering for me across the board, so I'm doing less than minimum there. I also have very good friends here in the community who will listen to me whine for a while, comfort me and then remind me who I am and what I have: loved by God and surrounded by his presence. Unfortunately in my pain and weakness I tend to forget these things. It's very good to have helpers around. I think I'll hug them when I get home.

Again, thank you for all the information and encouragement!

Blessings,

Canuck · Guru

Hey Sanuk,

I'm SO glad you finally got to see/talk to the hep doc, and that he LISTENED, and acknowledged how much h-ell you have been going through, and I DO hope he fills you in on what he researches (if he can shine any further light on it).

I hate these cures that have some kind of prerequisite "drag yourself dish-rag-like across the floor clause" in effect. Really unfair. I too had some profound weakness. Motivated and willing to endure what is served up to us, but so hard to take. Eye on the prize does help, knowing you ARE doing the right thing does help, having info and facts on hand helps, analgesia will "probably" help too, as will ANYTHING you can possibly think of to try. Like Tig was outlining with epsom salts and hot water - did you ever try any massage, hot tub, suana or steam room things? If you can bundle up and get a freind or cab to take you to these places, hot tub/sauna/heat/massage, that might aid some short temporary reprieves from pain. Did you make sure your electrolytes (magnesium) intake is good enough?

Did you manage to arrange any additional or optional (more effective) analgesia, when you need it, than just ibuprophen?

I went thru a bad spell a while back (nothing at all to do with HCV mind you) but it was tough all the same, losses that I could hardly accept or fathom, it was quite a struggle for me. I spoke of it with my 90 year old freind (he's gone now) but, he had been through some very hard stuff too in his lifetime, one of the things he said to me was "what doesn't kill you makes you stronger", which at the time I thought "nice" but maybe a little "ya ya". Well, since then I have thought of him many times, about his some of his actions toward me and reflecting on his life, and mine, and his words, in retrospect I look at those few words in a whole new comforting way now. There was much truth in those words. We have to find ways to releive pain and find bits of comfort.

Until things turn around a bit more for you, have you got a buddy you can rely on/call on for some of this or that?? That helps too. I am lucky cause I have a ready-built in heper. Enlist aid and support where you can. We want to help, virtually, as we can, but a helper in the flesh is VERY good too! I highly reccommend it, if you can arrange it. I told my driver, James, that this is what he signed on for! Such a dif being able to share the load.

Hang in there, I know you can do it, and you know you can and will do it, I just wish it was waay easier. Stay warm, pee a lot, try everything you can thnik of for relief. smile C.

Tig · Admin

Hi Jen,

I'm sorry you're suffering these side effects. The thought that you could be having an immune system reaction, seems entirely possible. That can cause some terribly painful joints. I had terrible time with hip pain after tx. The old Interferon protocols really had their own set of ugly sides. They are improving the incidence of them but they affect everyone differently.

Try some warm baths, with some epsom salt. That may give you some extra relief. Will your doc allow you to take an anti inflammatory, like Tylenol? I know it's not much, but might help temporarily.

The fortunate thing with Epclusa, when finished, they clear the system fairly quickly. You should be feeling better in the two week period your doctor mentioned. Just stay the course and keep taking that oral Dragon slayer everyday until they're gone!! You can do this...

Sanuk-Sanan · Member

Hi all,

I saw the Gasto-Hepologist yesterday and told him about my sides and the severity of my sides (I can barely walk) he said he had never seen such serious sides and that he'll research it. He says I'm to keep doing what I'm doing (drugs are fine) for the next 19 days and that I'm on my way to clearing the virus. Keep your eyes on the prize!!!

He also said that because I've had my immune system "enhanced" through cancer treatment, it's possible that I'm having an immune reaction that was somehow started by epclusa. Of course the 64,000 dollar question is how long will this last and is it permanent. Liver doc says I should be feeling much better at EOT +2 weeks, but it will take a few months for me to get back to what ever normal is. But the reassuring thing is that he said these sides shouldn't be permanent.

To be honest, before I saw the liver doc I was a heap of despair. I was done. I was weak, in pain, and an emotional wreck. I have a bit more hope now-- especially as I should have better pain management in the near future. This makes a huge difference.

Anyway, here's my update. Fellow sufferers! This too will end. Let's keep our eyes on the prize!

Jen

Allison · Member

Hello Canuk, Your memory is quite good! Yes I finished on Dec. 1st. EOT was undetected, liver panel was normal. I am waiting until March for 12 week SVR. Thanks for asking!

Canuck · Guru

Hey ya Allison,

Saw ya posting around here, somewhere, just recently, just wondering how yer doing. I think you must have finished your pills in early DEC?? You were und at 4 weeks in mid-oct... then I kinda loose track. How about another update, maybe I just miss seeing some of your posts or I can't remember (which is very quite possible in my case!). Hope your doing good. C.

Canuck · Guru

Hi Ched, Phoenix and all,

Sheesh, it's been a little quieter round here for a wee while! (just in general, not just the epclusers corner). It's just that time of year I think. Glad to see you both posting again tho. It's always good to hear from folk.

Hey phoenix,

I wonder too (for periods) if something weird is up with my immunological abilities, but, the picture you paint of your work sounds about right, being that you are subject to "fomites" ... some people call them dears, little ones, joys ... times like this I call them mucousy infectious walking fomites. hee hee Makes you want to hose them down with alcohol washes every hour or so. My mainstay for colds and such are hot salt water gargles. Come to think of it, just about every comfort (or cure-thing) I take for common maladies seems to involve water!, and often hot (sometimes cold water), and salt! Thus my theory (or prescription) for what ails me right now ... is that I should be having a full body submersions in nice hot salty water, like maybe in Ha or Costa Rica, or Cuba, or ....

Hey, that was nice you met Pitka from Wisconsin, I was hoping she would meet up with you. smile C.

Cheddy · Moderator

Jen,

It's looks like you are getting lots of good advice here. I'm genuinely sorry you are suffering. Listen to these folk and make sure your doctor listens to you.

I just wanted to add that I had all kinds of aches and pains in my joints and muscles before SVR and I have been greatly relieved. Hang in there. It's such a great blessing to get through this.

All the best.

Cheddy

Phoenix17 · Senior Member

Sorry I haven't been on here much. I have spent most of the holidays sick with some sort of virus. One after another. Had the same thing 3 times. AS soon as I would start feeling better, it would get worse again. All upper respiratory.I do work with young children who are constantly coughing, sneezing on me, so it's not really surprising. Lot's of staff have been out with the same thing. I can't help but wonder if after Epclusa, my immune system is lower than normal. I do feel better now, and realizing that Epclusa was the best thing for sure.

I hope that you all had a great holiday and New Years!

Sanuk-Sanan · Member

Thanks Canuck! I'll talk with my doc about ponstan. Thanks.

Camping in HA! Sounds wonderful, Fortunately I have friends in Southern California where you can camp right on the beach in 70-50 degree weather in Dec. Amazing, I know! But it was just what was needed at the time: Good friends and falling asleep to the sound of the ocean waves. Sweet!

Have a very merry Christmas!

Jen

Canuck · Guru

Sanuk,

I really cut back on quite a few supplements when I started my trial drugs (not that I was taking tons of them or anything), I just pared it down to a minimum, and the doc had already condoned what I planned to take. I tried to stick with this minimum, but when I ran into trouble during treatment, I did get permission to re-start or increase a bit of them again, and, I made sure i was indeed getting enough magnesium, it may just be wishful thinking on my part, but I can't shake my theory that my ensured magnesium intake was helpful.

Re: analgesics - this is JUST small-talk, NOT advice!!

It's just me, but for some weird reason I have never found ibuprofen very effective for me, (curiously) aspirin worked better, next choice for me would have been tylenol, but I have heard that tylenol or ibuprofen has (so they say) been recommended to them before by their hep docs, despite a liver problem, if the relief derived from doses of drugs is deemed justifiable. (As far as I'm concerned none of the 3 are liver friendly, and the aspirin is especially not gastrically friendly either - could spell trouble for those with gastritis, varices, or long PTT!!). You would be limited to take what product the doc says, and what kind of inherant problems you already own would dictate avoiding one over another.

I have always avoided taking ANYTHING, period. But, when required (when I could not avoid it, and only for very good justifyable reason, injuries/surgery and such) I have had excellent pain relief from a stronger product called "Ponstan", the other name for it is "mefenamic acid" - but it is non-narcotic, non-steroidal "prescription" and designed for moderate to quite severe pain, a prostaglandin thing - unlike tylenol (limited to being only a 2 part "anti-pyrexic/pain killer", ponstan holds all 3 properties of being a "anti-inflammatory/anti-pyrexic/and pain killer" (like aspirin). Works like a charm, but would likely be overkill for many minor things, it too (like many inflammatories) is not gut freindly. But short term, arriving at the unfortunate apropriate "occasion", I found that drug very effective for bad pain.

Milder over-the counter would be my first choice, for anything severe, I can always count on Ponstan. Just by and by info on drugs I've tried.

Camping! - what the hell, did you camp in Ha or something!

Yes, good thinking, may-be sauna!, and/or hot tub, or the like, try some things, if and as you can. smile C.

Sanuk-Sanan · Member

Hi Canuk

Thanks for your response and empathy! Sure appreciate it!

Yes, doc says I can take OTC meds and I am taking them at regular intervals. This is what is allowing me to walk to the bathroom. Mornings are the worst until the advil kicks in.

I will add electrolytes to the water regiment. This is a good idea. Because of the Epclusa I'm not taking my regular calcium and vitamins. I've never been a suppliments girl, but maybe these are making a difference.

I hear you about the fresh air. I was camping a few weeks ago with someone who understood my condition and loves me anyway. Needless to say I wasn't much help doing stuff around camp, and there were no hikes on my agenda. But it was fun and invigorating. But now I'm back in the real world where it's cold And everything hurts.

I'll see what I can do about breaking the cycle. Maybe hitting the sauna at the gym would help, too.

Thanks again,

Jen

Canuck · Guru

Sanuk,

I was at my very worst during treatment as far as profound fatigue and physical inability (and other symptoms too), just those two heightened things (alone) complicated EVERTHING else, I had great difficulty "excerting" myself. Weakness, fatigue and pain together are very counter-productive. Breaking the cycle, even just a bit, in one thing "might" help you in tolerating the other things.

DID YOU ASK if you could possibly take a very mild dose of an over-the-counter type analgesic for the joint/muscle pain??? If your doc said yes, what, how much and when ... then you might consider doing so, just in the effort to try to elicit "a short break" in one of your symptoms. It is sometimes just too tough, when you have so many calidascoping symptoms all at once, one thing just making all the rest so much more intolerable.

You need to make sure you are drinking lots of H20, and good nourishing juices/drinks/foods full of electrolytes, make sure you are eating/drinking good sources of magnesium.

Keep moving! (as best you can). Breathe some fresh air, even if it is just a short visit to a cracked window for a while.

I know how debilitating these things are, especially when multiple/interacting things gang up on you all at once, and all the while you are trying to fit in all the sleeping and rest your body is demanding, as well as dragging yourself up to answer nature's calls, but you must keep trying to move about as you are able.

Keep trying to think of anything you can, to gain breif respites from these symptoms, such as heat/cold application, baths, massage, some stretching, and PLEASE DO ASK if you are allowed to take the occasional condoned analgesic when you really need one.

It will get better, but do see if you can take the occasional analgesic while this is "on". C.

Sanuk-Sanan · Member

Hey Jimmy K

I have, sort of. Getting into see my dr is a real pain in the tusch - so much so that at my lsat oncologist's visit, my oncologist has had to call him and talk with him about my sides. Based on that my onc ordered blood work (CK and lipease) and it's come back normal. My legs, strength and general fatigue are anything but.

I will try again to get through the telephone maze that is their receptionist's telephone system, though usually the problems is that they dont' return my call. If need be I'll go through my onc again. I think need may be as I can barely walk!

Thanks again for listening to me complain!

Jen

JimmyK · Guru

Jen have you discussed how you feel with your Doctor?

https://www.drugs.com/sfx/epclusa-side-effects.html

JimmyK

Sanuk-Sanan · Member

Hi All,

Thanks for dancing with me over the UNDETECTED results. This is very, very good news.

I think over all I'm handling the drug better, that is to say I haven't had the strange 15 seconds of nausea or headaches in awhile. And this is good. But the fatigue and joint/muscle pain is still kicking me in the butt. I can barely walk, and when I do I walk like someone with no knees or ankles and whose leg muscles are on fire. It's not a pretty site. Oh and don't ask me to go up or down stairs. That just isn't happening...

I'm drinking quite a bit of liquids (water, coffee...) and the only thing it's doing is causing me to get up and painfully move to the bathroom. My doctor's been unresponsive at best with this, so there's no help there. So if you have any advice, please let me know.

Finally, how long did it take for you to feel normal after taking Epclusa? I can hang in there another 5 weeks knowing there's an end.

Thanks again!!!

Jen

Canuck · Guru

ehem Razor,

smile Hmm ... maybe Tig is "on" to something here, when he said ... "Enjoy your time in the mountains. Don't push it too hard though" ..., and I was previously asking you if you were taking as good a care of yourself as you possibly can, and those reminders to rest, avoid stress, keep drinking water, and not to forget you are recovering from an infection, and an arduous treatment, that perhaps something as simple as "copious" amounts spicy indian food might affect you, and ... like how (no matter how satisfying what you are currently wishing to do and complete within timelines), that it might be a bit much?? You sound (maybe) like some other high performance guy I know, who thinks many things are a little expendable if it crimps his production style (my partner's name will not be mentioned). His last inclination is to treat himself with the utmost tender loving care - he finds it boring, until he has to submit to rest due to esophogeal reflux, inguinal hernia or such! Rome wasn't built in a day (nor in 3 weeks). Treat yourself really good during recovery. wink C.

Ruby Red · Senior Member

Thank you so much RB

Enjoy the mountains and all the positive thoughts and plans it entails!!

RR

Ruby Red · Senior Member

Sanuk

Music is in the air when we hear UNDETECTED!! Sweet as sweet can be!! Congrats!!!

RR

Ruby Red · Senior Member

Canuck

You're right :) Epclusa means UNDETECTED!!!

RR

wendyo · Guru

For Canuck and Sanuk:

https://www.youtube.com/watch?v=THh1pPWEoWs

makes me laugh every time I see it even though that was not a funny movie.

EricChuckFar1 · Veteran Member

Woot woot! Congrats Jen! Seems like you are about a week ahead of me on this treatment. I promise to follow your good news with good news of my own, but for now let's march on! :)

Razor, hang in there. I imagine things will start improving very soon. Enjoy the mountains!

Canuck · Guru

Sanuk!!!!!

Wonderful!! THAT'S the way we do it! Hooping it up right along with ya! 4 weeks in, and yer KILLIN' IT!!!

So glad for you.

Yes, do fill us in on how you have been feeling. Details, details!

(For the life of me I cannot relocate that funny video Wendy had, of that talking "black dog" that instructs all us epclusian what to do!!) ... biggrin So, being that I can't find that clip, I will just "interpret" and show the final outcome of his instructions ...

Nula, null, naid, nulle, nulis, null, nul, nula, nulla, nic, nol, noll, cero, sero, zewo, kore, odo, efu, sifir, so khong, hen, hyna, qnn ... zip, zilch, nix, neg, nil, N/A, none, nada ... zero equals zero ... in any language! All us epclusians are goin' UND!

Yay Sanuk!

Hep C Discussion Forum

Legal Disclaimer: