Hep C Discussion Forum

Cinnamon Girl · Guru

RE: Panel have approved my treatment..Epclusa...yippeeee

Jaggles · Senior Member

Thanks Jill....lovely to hear from you....hope you are all settled ? Next time I post i should be in 'on treatment ' section biggrin xxxx

Cinnamon Girl · Guru

Great news, Jaggles!! Good to see the NHS came through for you eventually!

I always had my tx meds delivered to me as well, I`m glad to say. Saved a lot of worry about getting them on time.

Very exciting for you to be starting on your journey to a Hep C free future, I`m very happy for you! smile

Jaggles · Senior Member

Thano you Observer..... aim to kill xxx

Observer · Guru

Yay yay yay

So glad you are all set to slay your dragon.

A

Jaggles · Senior Member

Hahaaa Canuck your post made me laugh out loud...I can visualise your take on the blood mistake...that episode came and went lol....today first thing this morning, my phone is hot from GP calling (several messages left with GP and Hepatology dept Friday) all calling to find out what the hell going on...i guess the lab guy did get a scare and thought it sensible good practice to double check and I'm ok with that....Im getting my monies worth out of the NHS right now that's for sure....as for getting more blood for the future...overdressing, to the point of sweating like a nuns knee cap and strategically planning how much to eat and drink and wear for blood tests is the least of my worries. I'm looking forward to stroking my bottle but dont know how I'm gonna drink so much water...I've been practicing and feel like I'm drowning. Glad you said a 24 hour water plan as I've been trying to cram a gallon into the day time lol.....Tig........that image made me gag lol but I will learn to love my new best friend. I've ordered a half gallon sport bottle so all I gotta do is make sure I guzzle at least two during 24 hour period..

I've been awake all night, so excited for so many reasons. Daughter in America on honeymoon soon be home to the good news and my first grand child ( other daughter ) due in June....at least I can expect to be well enough to be her birthing partner.....I've got a wedding cake to make and my brain is wired lol.....my next post will be 'on treatment '

thanks you guys....you have been my virtual rocks for sometime...you really have xxx

eeeek biggrin

J xxx

Tig · Admin

No worries, Jags! You got this in the bag!! Good luck smile

Pay attention

Canuck · Guru

yay, yay, yay! So, maybe a Wednesday (or Thursday) start for your "day one"? If it's Thursday, then you will get to stroke, pet and admire that medicine bottle overnight. Best soothing pet you will ever own. Help, like a good big brother, in a bottle. Get your 24 hour per day "water" system lined up and ready.

I recall the trembly in-my-gut feeling, hearing the words over the phone "your in" (accepted into the trial), seeing the bottle for the first time, and then swallowing pill #1 - I felt so lucky and relieved, still nerves all the same.

Treatment was the best thing I ever pursued or did for myself.

Viens! I have none (to about one and half) that can be found, on my best days. If fasting for a next day blood draw, I HAD to make sure I was really well loaded up with fluids and fully nourished the day and night before the draw, I would bundle up (even in warm weather) with sweaters and coats (I looked stupid) but I arrived to the lab with warm and toasty arms, which tended to help. I really pounded down the water the night before that draw and especially the day and AM of, the draw, guzzled a TON of water, that too really helped. Made sure I was really caloried up the day before. Nothing worse than arriving for a draw, cold, on the dehydrated side, peckish/hungry. If you are well and truly a cold-bodied/cold-blooded person all the time, leave your house wearing/sporting your own heat paks tucked into your sleeves to arrive to the lab with warm extremities. The other tip, is to arrive not frightened, not in a panic, like ... just after being told they suspect you might no longer own any platelets in your body.

Well, that was a midnight-notification lab scare you did not need!! How weird they would phone you at midnight! I can only think they were just doing their "due diligence", relieving themselves of "liability" should you bleed to death overnight! Not on my shift somebody said! (They were probably imagining headlines the next day, "Only women in the world who lives with no platelets in her body - lab asleep at the wheel"). Being that your next AM draw showed that all was indeed well and normal, what a waste of worry that was! Kinda reassuring tho, that they even bothered to let you know that something "might" have been awry, even if they were dead wrong! I have a theory, night shift had a sandwich break, cake, cookies, then fell asleep, way too many calories, took a sugar nap. While napping he spun the tubes in the centrifuge and spun all the platelets right out of your particular tube, woke up and had to clean up all the platelets splattered all over the inside of the centrifuge (brother, extra work not needed on nightshift, sigh), he looks at what serum is left in your tube so feels obligated to push the button and run the further tests anyway. OMG!, somebody says, where is this womens platelets!! Not wanting to explain to the boss where your platelets could be, he just calls you in for a re-run instead. Like a well-oiled machine, everything running fail-safe in the system. Measure twice cut once? More like, test and test again, same result, outcome good.

Try not to worry, you are going to do well, you got the good stuff! I like the sounds of that "planning for a holiday". biggrin C.

Jaggles · Senior Member

Epclusa being delivered Wednesday biggrin

between 12 noon and 6pm ....not allowed to commence until I have called Hep nurse .......gulp.......finally there....it's actually happening .....here we go xxxx

Jaggles · Senior Member

Wow Canuck what an ordeal and yes lucky gal!!!me too biggrin I'm getting 12 weeks Epclusa with no additional as I'm not cirhotic ...

i had a scare last night as yesterday pre treatment bloods taken , which is always a mission as my veins never want to play ......last night at half past midnight the pathology dept called me to say my platelets were not good and they were concerned that if I had a bleed it might not stop...booked me into A&E thismorning to run more tests ...which turned out to be fine...however my veins were so bad they had to find one using ultrasound I think I'm dreading the bloods monitoring more than anything else.

as for the pain relief, yes I upped the paracetamol with the ora morph and it's helping a lot. I cant really try other drugs now as we know that what I'm on is ok to take with Epclusa so I'm happy to persevere. I intend on getting off the pain relief when treated, but if I have to continue for whatever reason will be quitting the opiates for sure And will look at the options you have mentioned. So long as I take meds with food I'm generally ok ...

mentally and emotionally I'm much more stable now I KNOW light at end of tunnel in sight and have no longer got the worry of convincing panel and professionaks why they should agree to giving me the RATIONED drugs....I'm determined to do some serious awareness raising when this is over because people need to know..they really have NO IDEA what we go through and how we suffer. For me, the worse thing was when they stopped HRT suddenly and I got ill from being chronic at the same time...nothing prepared me for the low mood emotional depressive manic **** that would emerge in a state of hepopause ....I'm a long way from that place right now and chatting with you and the others has helped immensely. Now it's a matter of days before I get my call to arrange delivery of epclusa ...

love the Hep family ...RESPECT xxx

-- Edited by Jaggles on Saturday 1st of April 2017 04:56:42 PM

-- Edited by Jaggles on Saturday 1st of April 2017 04:58:44 PM

Canuck · Guru

So, how is the sleeping and the pain control things going? Tinkering up the analgesia, did that help?

Don't you feel a tiny bit of psychological relief now, just knowing the epclusa will soon arrive? biggrin

For me it was that way, once I truly knew I was imminently going to get treatment there was relief, and then more relief came, when the first pill finally passed my lips.

Back to the pain control subject ... my partner may be a bit like you, unable to tolerate many of the very good common anti-inflammatories out there that happen to be pretty good analgesics as well. In his case, he's got an "semi-auto-matic 1 to 3 day self-destruct button" on his stomache with taking any decent anti-inflammatory from aspirin to naproxen, after that his stomache just fries.

He has trouble with most narcotics too, from codeine to morphine, but worse, in that within days his bowels just stop dead, do not want to work, period, no matter what, and just adds to the grief.

We HAD to figure something out for him out of necessity - lots of Rx experimentation, but when he is in need of long-term or a decent length of a course of analgesic/anti-inflammatory, he can tolerate "Arthrotec" (don't know what they call it over there) - it is "diclofenac (200 mg)/misoprostol (50mg)" - the two components formulated together in one pill. The "misoprostol" portion is to protect the stomache and gut from the harshness and ravages of the "diclofenac" anti-inflammatory portion. Some slight burgling, gurgling for a few days, then he is able to carry on and take this "Arthrotec" fomula for a long time, as necessary, with good acculmulative affect and relief especially musculo/skeletal/joint. A lot of people take arthrotec for bad arthritis type pain.

Diclofenac also comes in a "topical form", especially handy for applications/treatment to specific limited joint-areas - great if only select joints are in pain, your knees, your elbows, a shoulder joint, a hip, or some "limited" portion of your body where joints are inflammed/painful. Local applications, right at the joint. But, of course not well suited to "all over" head to toe pain! He finds this too has it's useful place to as a tool in his limited arsenal of anti-inflammatories he can use.

Sometimes for short term, a one or two day sort of thing (covers up to quite severe/moderate pain, from dental to migraine, including skeletal) his gut can get away with taking couple days of repeat decent dosings of another anti-inflammatory/analgesic called "Ponstan" (or mefenamic acid). One of those prostogladin ones. Quite an effective pain killer.

Food for thought for when you may want to try something else, that is not narcotic based.

Yep, me too, I was dreading/preparing for having to go out of country to get my own sofa/dac, instead, I ended up winning a seat (of few) on a sof/vel/vox trial. You were "assigned" either 12 weeks sof/vel, or, 8 weeks sof/vel/vox - no "choice" involved, depended strictly on what Gilead was testing out and what your particular parameters measured up at - GT3, cirrhotic or non-cirrhotic, etc. Simple as that, as to why I got 8 weeks of the triple. I strove for it and lucked out, that's all. Lucky, lucky, lucky.

You are a lucky gal too!! biggrin C.

-- Edited by Canuck on Saturday 1st of April 2017 06:31:17 AM

Jaggles · Senior Member

So....Canuck ..I'm interested. How come the trial only given for 8 weeks.?...all those things you felt I feel them too...but was also willing to take part in trial or anything to feel like I'm doing something....anything than feel like I'm losing....like I could die from this....i was prepared to buy from greg Jeffrey's, or sell my house to buy it here....money and objects mean nothing to me over getting the old me back...for a while. I love Bowie too so a rewritten space oddity especially for you was lovely.....I think of him often and still cannot bare to take his CD out of the car....thanks for the analogies and the link ....you are a great writer wink ....

https://youtu.be/0JpAZh81FcI

Canuck · Guru

RC and I had a "play on words thing" going on for a while, knowing what a mad frenzied panic I had been in, trying desperately to get in my "Polaris" trial (which was a scary-short 8 week trial in itself, but of a new and "stellar" sounding drug triple - (sofa/vel/vox).

I was kinda going bestial desperate seeking/waiting and then "celestial" when I finally procured my life-saving trial seat for treatment!

We loosely bantered about analogy things ... like the "North Star" guiding my way, being sprinkled with "star dust", "Starry, Starry Night", "Twinkle, Twinkle Little Star", "When you Wish Upon a Star", etc., etc. RC re-wrote David Bowie's Space Oddity "Ground Control to Major Tom" for me!

I related to Sigourney Weaver's mental state in "Alien", where she, in sheer-terror-induced out-of-her-mind survival mode, is trying to hold it together long enough to don her life-saving space suit, and save herself from her alien foe, insanely muttering almost indistinguishable words to calm and resolve herself to the task at hand under extreme nick-of-time duress - a pale, sweaty, sick looking Sigourney - singing "...lucky,lucky,lucky..."!!

That is just how I felt, getting into my trial - panicked, LUCKY, exhausted! I didn't know (until tonight) that those breathless words muttered by Sigourney was an ad lib of her chosing, and that they were from a song!

I love Gilead!.

Related image

https://www.youtube.com/watch?v=8go0Obiwa6k

Jaggles · Senior Member

Thanks dear Canuck biggrin ...I like the idea of have pill...willl travel lol...i need a holiday but will wait a while yet, but is good insurance like you said. Also a nooner Epcluser sound good idea too. today the nurse called to say drugs have been ordered and I will get a call from delivery company to arrange delivery ...could be as little as 7 days ....I just need to get bloods done and call nurse before I take any....so my dear...I will post my first 'on treatment ' post ....I've waited a long time for that moment lol ...I will also look for those threads of other epclusian experiences...thanks again buddy xxxx wahooooo

Canuck · Guru

Hey Jaggles,

It helps to know what others do, but it's hard to guide yourself on what YOU should do, in comparison (the ultimate decision on your time of day dosing, etc. ends up being a very individual deliberation) - because there are just SO many personal variables! But, like JK spoke to, do pick the most convenient, safest time of day for you (considering your work/meal/sleep schedule) - you will figure out the best time for yourself when you consider all - (by "safest", I mean addressing the the priority concerns, that (1) it will be a time that you would never likely "forget" to take a dose, no matter how harried a day you might experience, and (2) ensures/allows for you being able to take it at the same time each day.

One fellow here never travelled without having a stashed/packed "spare emergeny pill" (with him) at all times (just in case he ever got separated from his main supply at home) - insurance, security, peace of mind - I thought that was a good emergency back-up plan!

"Have pill (and water), will travel"! heehee

6 of one, a half-dozen of the other. Murphy's Law can apply here - you can take it in AM and possibly feel it during the day at work, which seems to concern you ... or, you can take it at night, trying to circumvent this, and end up waking up possibly feeling something, which you can then take to work with you!! I kinda warm to the "taking it at night theory", but I never got to test that out myself. I had to be a "nooner" - I did the epclusian "lunch date" thing (as I was required to take mine with food, because of my third added drug, and lunch was my safest, most reliable bet).

Like Tig said, it's very true that Epclusa can be taken indiscriminately, on a full stomach, or, on an empty stomache, one way or the other it has no deleterious effect on the drug. There are not that many drugs that have to be taken on an empty stomache. But, for me, just on princicpal (insurance again) I (personally) tend to take drugs into my stomache/gut with some sort of food when possible.

As far as how one might expect to "feel" on epclusa ... it will be hard to use me or BetterLate as epclusian "comparables", as both of us had a third drug added, she with riba added, and me with vox added to our epclusa.

A few here (on Epclusa alone) maybe sensed some stomache things when they first started off taking it, I think, but GI-wise nothing too drastic I recall being reported. More, the first 2 weeks, were the little headaches-thing noted, and some of the feeling blah stuff - to which the good old water intake adage ... "a gal. a day, keeps the sides at bay" works! Dilution is the solution to pollution! Many of us have speculated that the feeling not-so-good (if it does happen when on treatment) may not necessarily all be considered the fault of the drug or sides per say, but of our bodies as well, having to deal with the death of the virus within us and the work required to resolve the event and aftermath.

Some prior epclusians, such as tkflex36, and webtomass had such a profound lack of being able to detect "sides", tkflex for example, thought he might have been given a placebo!! Many other epclusians too, have fairly minimal sensations of what might be considered "sides". Others felt some things during treatments, you have probably read most of our epclusians threads here. Most recently Eric, RubyRed, Phoenix, and so so many others now, have all done so very well on epclusa.

I am so glad epclusa came for us all. You will annihilate this virus in a short 12 weeks!

I hear ya Jaggles, about the marathon you have already run this last 7 months! C.

BetterLate · Member

Jaggles:

Yes...for me, Epclusa is easy - I'm almost 2/3 of the way through my treatment. Hopefully, the drug will be easier on you than the process of being approved for treatment was - ha! I take Ribavirin, too, splitting the daily dose between morning and night (hence the food) - this has caused (I believe) most of the side effects I've had. I have not missed any work, and nobody but my boss and husband know I'm on treatment (not sure if that's a great tactic, honestly, but I'm a pretty private person).

Try to channel any stress and anxiety you're feeling into hope. It is a great relief to be able to DO something about the diagnosis other than worry! And yes, this group helps a lot (so does deep breathing and water)! You've got this!

Jaggles · Senior Member

BetterLate wrote:
I take my Epclusa at 10 pm every night. I work a very weird schedule and don't eat much during the day. I find that 10 pm is the only time I am ALWAYS at home (I know, sad) and have had at least a half-hour to eat something before I take my dose!

Thanks better late...that makes sense, some days I work until 9pm (it's not sad biggrin )

but i am always home by 10 even if traffic was bad. My fear is probably 'what if' as my mind risk assesses the possibility of NOTmaking it home ever...i would have anxiety....I might have to consider 7:00am....hmmm....but you sound like you are doing ok on it? This makes me happy xx

Jaggles · Senior Member

Thanks Jimmy....I need you all to hold my hand too....and Tig ...I was planning on sleeping through it so would like to avoid sides (if any) during day so I can continue to work ok...long hours and emotionally draining job at times. The Hep has made me very sensitive and emotional....I'm Such a happy confident person normally but can honestly say it has turned me into a snivelling **** at times....I can't tell you how happy I am to feel that the end could be a possability and so soon now. The past 7 months have been horrendous...the diagnoswas bad enough but then you find out more and more stuff ....having to communicpâté with so many different people, using the art of persuesion to get the right level of support...I'm drained...but ready or the fight now...and with great gusto lol...and with a little help from my friends ....my Hep family got me here so will never truly be able to thank you enough.

ok...cool....I'm going to sleep now...gnite yoll xxxxxxx

BetterLate · Member

I take my Epclusa at 10 pm every night. I work a very weird schedule and don't eat much during the day. I find that 10 pm is the only time I am ALWAYS at home (I know, sad) and have had at least a half-hour to eat something before I take my dose!

Tig · Admin

Well, I hate to tell you this, but Larry and you are now an item here. Don't leave the name on your phone, someone might get jealous, ha, ha!!

You can take Epclusa whenever you want. There's no requirement to take it with food, but if you have a sensitive stomach and normally eat before taking medication, you should structure the time around a meal of choice. As long as you stay adequately hydrated, you shouldn't experience much in the way of headaches, etc. Some take it at night before bed to sleep through anything like that. It's not real frequent though. Canuck can offer some information on her schedule when she checks in.

JimmyK · Guru

Glad you are happy.

My preference on a once a day regiment was to set my alarm for a wake up call that fits the 84 days. I landed on being the 5:55am guy and the rest is history. Well Hep C anyway! ;)

Whatever you choose make sure it is convenient and will not be forgotten. You want to stay consistent and with my Job I knew 5:55 am was perfect for me and my Wife. Good time for an alarm and being consistent is part of being in compliance.

All the best and we want to walk this with you!

JimmyK

Jaggles · Senior Member

Lol...you are all awesome!!!! Thanks soooo much for all your comments and support ....hahaaa Jimmy I didn't notice those sentences strung so close together ...a little ambiguous I think.....but ...I meant....what is a good time to take Epclusa? Bed time or morning ? Advise please biggrin and Larry....well he's just metaphor.....love to you all ....yippeeeeee

JimmyK · Guru

What?

Tig · Admin

That's great news, Jags! It won't be long now and you'll be hopping the Express to SVRville. Get ready for an easy ride to a Hep C free life...

Leave it to Jimmy to pick up on your sentence, he's good at that! I'm glad he's on our team wink

PS: Is that Larry the Lab Tech or have you been hiding romance? Don't fool with the family, lol!

Canuck · Guru

Huh? WHO'S LARRY??!! I got the rest of it. Oh well, I'm happier than Larry then! biggrin C.

JimmyK · Guru

Jaggles wrote:
Ok....saw Hep nurse today for Pre assessment....going onto Epclusa in about 2 weeks. Drugs are being delivered to my house ...they save about 8k on VAT by doing it that way...I will be on it 12 weeks . I'm so happy I could poo ....can anyone recommend a good time to take it ? I know it must be exact time each day. It couldn't have come at a better time as I'm getting sicker faster now...all muscles and bones are hurting but I can deal with it now I have the goal in sight. My next post will be in the 'on treatment' section ....Happy as Larry ...love to you all xxx

Very very happy dance for you!

Ok now the folks here will tell you I can be a handful and I tend to like to have fun. I believe it helps while on treatment to take a real happy approach to it.

That said I have to "make an observation"

"I'm so happy I could poo biggrin ....can anyone recommend a good time to take it ?"

Now when you isolate that sentence, and forgive me it is something they trained me to do in my job function.. The above sentence, by itself is,

wink

JimmyK

Jaggles · Senior Member

Ok....saw Hep nurse today for Pre assessment....going onto Epclusa in about 2 weeks. Drugs are being delivered to my house ...they save about 8k on VAT by doing it that way...I will be on it 12 weeks . I'm so happy I could poo biggrin ....can anyone recommend a good time to take it ? I know it must be exact time each day. It couldn't have come at a better time as I'm getting sicker faster now...all muscles and bones are hurting but I can deal with it now I have the goal in sight. My next post will be in the 'on treatment' section ....Happy as Larry ...love to you all xxx

Jaggles · Senior Member

Thanks Better Late....it's very kind of you...xx

BetterLate · Member

Hurray!!! This was such good news to hear! I know it's been a frustrating wait, and am so glad that things are finally moving forward!

Jaggles · Senior Member

Aghhhhh thanks jimmy k, Wendyo and observer.....hasn't sunk in yet...but I feel that one less thing to worry about has already helped my shoulders go down. I'm still a little afraid of what lies ahead but I am a fighter... thanks everyone your spirits inspire me xxxx

JimmyK · Guru

What great news for us here to start the day off with. wink

It is hard to watch when you know folks are hurting and afraid. The daunting nature of not knowing is indeed the hardest pill to swallow in this entire ordeal. Just ahead now victory is in sight.

JimmyK

wendyo · Guru

Woo Hoo works. So glad you got answers and results. Let the journey begin!

Observer · Guru

Yipeeee

I knew you would get there!

I'm so pleased for you my friend and I can't wait till you slay your dragon.

A

Tig · Admin

Congratulations Jags! That's fabulous news, we are all so happy to hear this! We have watched as you fought to get to this point and you did it, with your friends here. I never grow tired of seeing spirits lifted and the smile return to every Warrior's face.

I have no doubt, you will be successful. Pack your bags, it's about time to board the Epclusa Express, Track 1.... Keep in touch!

Canuck · Guru

Yaaaaaaaay!!!!! Finally. That's JUST what we needed to hear. !! Oh, I am so glad you do not have to wait any longer to (at least) know it is not far away now. I recall well the little (a lot really) flood of relief in just hearing those words "you're in". Knowing, helped a lot, relieved a certain type/level of the stress I had been going through, quite a bit. Hope in a "word". Ah, it won't be long now girl!. Hope you do sleep good tonight, the building excitement will now be added to the rest of it!! Good going, well done. biggrin C.

Jaggles · Senior Member

Finally.... I am happy to announce that NHS have approved my treatment ....Today the hep nurse said that she is arranging an appointment for me for about 2 weeks time for pre treatment tests and she confirmed it's going to be Epclusa ...I cant tell you the relief I am feeling..ive cried on and off all afternoon, tears of joy and relief. It's been a long journey...I'm half way there now...I feel like the hardest bit is done...all the harassing, the obsessing can stop..so,soon I will be starting my "on treatment" post...today the universe truly had my back ....to be honest, this site has been a godesnd....I can't thank you lot enough for the guidance, honesty and wisdom....you played a big part in leading me along

i plan to sleep a whole lot better tonight

love and peace

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