Hep C Discussion Forum

Tig · Admin

RE: Help! Deciding when to start treatment (epclusa) during A levels

Canuck · Guru

Hey Goldencurls!,

Good for you!

Back in Feb. I wondered if you were going to go ahead with starting your epclusa right away, or delay your start.

Brave girl - it was a good decision.

Maybe you are proving to yourself that you are braver than you thought, and quite strong renough and resilient enough to handle all of this, sometimes we underestimate ourselves. (I did not underestimate your decision making, nor did I underestimate whether epclusa would work for you)! I am glad the school decision did not get "in the way" of your treatment decision, as the HCV has been getting "in your way" for quite some time now!

I am quite pleased you opted to get cured sooner than later, but I would have respected your decision otherwise, as we all wish for the "ideal" time to make the whole journey as easy as we can possibly create for ourselves. But I had a feeling that you might end up going ahead and opting for treatment now.

There is NO good day to have HCV, and ANY day (every day) is a good day to be getting rid of it!

That was a very important reminder from Observer re: copious, consistant water, it WILL minimize headaches or other things you may be feeling.

You are halfway through already!!! And already nicely UND - you gotter made girl! Keep up the water! I hope you are striving for a gal. a day.

Keep us posted on yourself, your labs, school and all. smile C.

Observer · Guru

Congrats on being UND

I hope you're drinking a LOT of water, it may help get rid of those headaches.

Sorry to hear of panic attacks. cry They suck.

Stay strong

A

GoldenCurls · Member

Hello everyone, just thought I would update this post. I am on my sixth week of epclusa and my VL is now undetectable!!! And here was me worried it may never go away. As for side effects, I am feeling the usual headache and tiredness but I have had several panic attacks. Of course that could be down to other circumstances. Thank you all for your advice earlier on!

GoldenCurls · Member

Very true Canuck, I had waited so long for this that I had almost forgotten about it and had accepted the symptoms as part of who I am as a person. I will ask for those when I go in to the hospital next week. I have had them in the past, but it was over a year ago. Thank you! I am very hopeful, and I do not think achieving bad grades will dishearten me too much as I am used to those anyway, and if I feel more human that is worth more than another year in college. I didn't have plans for uni in the next year so nothing will be too affected.

I am not normally this strong, in fact the smallest task is daunting. But i think because this is actually the reason for many of my problems in life, I just want to dive in and pray for change.
That is amazing! I am known among my friends (and teachers...) for being the one who is always sick. Many teachers have accused my sick days as being untrue, but I seem to always have an underlying cold, which sparks up again every month or so and lasts well over a week. I had no idea my HCV was causing this. I also have unbearable trouble with my digestive system, I seem to be sensitive to everything. these two things, along with tiredness, concentration, low mood, stomach pain and inner thigh pain have amounted to countless doctors trips. I really hope this all even gets marginally better afterwards.

-- Edited by GoldenCurls on Saturday 18th of February 2017 11:58:20 AM

EricChuckFar1 · Veteran Member

I agree with Canuck. Based on your posts you sound very strong indeed. Good motivation and confident nature are important the first few weeks, and you already have that!

Only thing I can say is that you may regret not starting sooner in the future. I know I was chickening out the first few days before actually starting, but as soon as I started, I was impatiently waiting for the end of the treatment! One immediate positive that I noticed upon completion was an immune-system boost. I got a cold two days before the end of treatment, and am already completely over it 6 days later. In the past years, my flu/colds would last 2 weeks minimum. Maybe that will be another motivator for you :)

Canuck · Guru

It is good you are accepting that your anxiety levels may not get any worse going forward - you might just be quite surprized at yourself in many ways in how you are about to handle all this. People often turn out waaay stronger and resilient than they think. In some cases it is the "fore' thinking that IS the most anxiety provoking.

You yourself, your Mom, your doc, freinds, teachers all know you better than we do, but we can ALL relate to what you are going through and preparing for in varying degress.

You sound very strong to me, very motivated, and you SHOULD be feeling excitied about being able to get rid of this virus with these drugs - this will also be one of the very best things you have ever done for yourself. smile

Life circumstances often get in the way of the plans we have layed out for ourselves, just remember NOTHING is insurmmountable. I just have a feeling you will get this all figured out, and come up with your best plan.

Good for us to know a few more details, thanks for sharing them. I wish your Mom could have had epclusa too. Good you have a doc who sounds reasonable and caring, good your F score does not sound like it is in the cirrhotic range.

If you go forward with treatment now, please think about what I said prior - your grades may end up being the same with or without drugs.

You should determine the consequence of delaying treatment, such as having to re-queue, and how long that re-queueing WILL take.

I hope you sail right through this, just like others have. smile C. PS - ask if you can have a fibro-scan (and an ultrasound) if you have not already had these, did they test your immunity levels for A & B?

GoldenCurls · Member

Thank you all for your replies! It is much appreciated. I'm starting to become excited to begin treatment!

Chris - that is interesting. I think I would not mind if I had one and not the other - at least I would feel something was being fixed! (trying to keep positive) aww

Tig - It has been a long time since I was tested for my fibrosis levels. I will know by Monday the results of yesterdays bloods. However I do know that they won't be adding another drug to it. (three years ago they said it was dormant enough to wait until this 'magic' drug became available.) I'm really surprised and excited to hear about how mellow the sides are! my doc did say 98% effective, which was a big positive.

Jim - thank you. I was thinking, I may have to repeat my A levels anyway, if I continue how I am regardless of drugs. It does seem silly to not cure myself ASAP after these years of waiting.

eric - That is amazing! exactly what I wanted to hear if I'm honest - I would hate to get to next year and wish I had taken it sooner. Again, with anxiety, I don't think I could get much worse - but I have amazing friends who would support me. I am uncharacteristically positive about this! The vouchers are for the US only, but I am exempt from prescription charges anyway on the NHS as I am still in full time education. Will definitely be drinking lots of water. The app is such a good idea. Thankyou!

Canuck - Thank you! I thought I'd be waiting another couple of years for this rumoured drug. I received a call from the hep department of the hospital the other day to come in immediately to discuss treatment.

My mum was on a clinical trial a few years ago as she had cirrhosis. She did not have epclusa. Ribavirin (and something else I cannot remember). Tablets and injections. it was a hard time, seeing her hair fall out and she got awfully sick (which is why I was so apprehensive upon hearing how little side effects this new drug could possibly have). But she defeated it!!

My mum's doctor was the head of department, and seeing how much this illness was distressing me and affecting my education, along with my absolute phobia of needles, put me on the urgent list for epclusa.

Yes, I am sure there will be a certain date. On the phone, she said come in to discuss and should you say yes, we can start you in the next week. In the consultation she was saying how it is up to me to decide whether I want to be on the drugs during my exams - and that the sooner I start, sooner it's over and less exams affected. She was very lovely, her husband an English teacher, so she empathised with me regarding my problems with exams. she said 'it sounds like you can't get much worse' hmm She said that some people experience no sides, but some people react badly and there is no way for her to predict the outcome. I am aware that once I start I cannot stop, genetic resistance etc, so I sought to find case studies and weigh up the pros and cons.

I do not think I will have to re-queue, just decide another, later date eg September. The issue isn't loosing the treatment, just whether it will affect my results negatively or positively. I'm not close to cirrhosis, as they were fine to let me continue without for another while. I am heavily leaning towards going ahead with it.

My school (along with most here) do not let you re-sit your final year, as the year below mine is already full to the brim. I would have to find a college centre elsewhere that allows people to re-sit exams. however, my subjects are available in many exam boards, and to find a college that provides all three subjects in the same board would be extremely difficult. Add to that the added pressures of coursework and biological experiments which cannot be brought forward and must be re-done. I had hoped to take next year to work/take part in a year long apprenticeship before uni. However, I think I may need to consider retaking as my main option, and good grades and the ability to do my original plan will be an added bonus if all works out well.

Thanks again everyone. Glad to hear of your successes, it is very inspiring. I will be sure to keep you updated.

T x

Canuck · Guru

Hi GoldenC,

Welcome here. I am very glad to hear you are being offered treatment, and VERY glad you are being offered epclusa!

I am a fellow GT3a, who was cured on epclusa (but had a third drug added, as I was in a trial). But being that you are in the UK, I believe you are lucky now to even be offered epclusa over other drugs - I would jump at the chance and say YES to epclusa!

Now, if I am understanding your situ, you are feeling pressured to say yes (within 4 days), but are worried about the timing of treatment because of studying for exams.

When are the exams over??? What would the consequence/outcome be if you asked your doc to treat you right after exams?? Would you have to "re-queue" and how long would that wait be? You have likely had HCV fo 18 years, and being that it was diagnosed 3 years ago, generally, delayed treatment is never a good idea.

Are you very sure that by saying yes (in 4 days) really means you will start on a "for sure" certain date (dictated by your doc) which will co-incide with your study prep for exams?? First, I would CLARIFY this with your docs office, what the (for sure) "start date" will be - just to be sure you are not in error about the treatment start date.

Did you mention to your doc your fear of sides affecting your ability to study for exams? You already mention fatigue, fog and headaches now, perhaps nothing will really be much worse for you on drugs.

In the overall interest of your health one should never postpone treatment, you have had it for 18 years, which IS a good long time, but, not knowing what your doc is privy to, about your condition, such as fibrosis/cirrhosis levels, (or how long they may make you "re-queue up again", for epclusa in the UK) I could never say you have wiggle room and could wait. This 4 day "ultimatum", take it now ... or .... what??? - what would the consequence be if you asked your doc if your health was good enough to post-pone the start date - perhaps you will loose your "place in line" and your tretament may get delayed far beyond the end of exams - an unknown.

These ultimatum and consequence questions you need to sort with your doc and with yourself.

Off the cuff, I would say go ahead and do epcusa, right away if need be, as treatment is always better sooner than later, AND it is true, you might NOT get ANY or few interfering sides, or, you "might" get some, some people don't get any, some people get some, it is hard to guess.

Your grades sound very important to you, but consider this, on drugs or NOT on drugs, your grades may end up the same. These are all unknowns. Only you can weigh the risks and rewards here.

Generally, I would advise to let health trump, and should what you fear happen and you think treatment affected your grades, can you not re-write/challenge or otherwise have another crack at it by some process of sitting for exams at another future date?

I do appreciate your concerns, let us know how you are thinking this through, or (if between you and your doc) you come up with a way to address your trepidations.

BTW - did your Mom get her 3a treated and cured yet??

I am glad you came here, and I will be very happy to see you get cured on epclusa. smile C.

EricChuckFar1 · Veteran Member

Hey Tara,

Welcome to the forums. I just recently finished epclusa without any major side effects. I opted to wait 2-3 weeks after being approved due to a 2 week long trip I had planned outside of the country. Didn't want to risk side-effects during the trip. However, in hind-sight I should've started before the trip to finish the treatment even sooner.

I was also tempted to wait until January before starting treatment -- this way I wouldn't double pay insurance deductibles etc (One deductible for 2016, another for 2017). I am glad I didn't wait, because the treatment finished that much sooner! Just be sure to drink plenty of water. I used an app on my phone to track how much I drank (always aimed for 3-4 liters or 100-124 fluid ounces). During treatment I had light headaches throughout, but nothing that affected my ability to work.

Biggest issue for me was anxiety, especially early on when I was first diagnosed and also the first few weeks of treatment. But the folks here helped me tremendously and I've had smooth sailing since. My confidence went up a lot once I got my first UND result.

One more thing I should mention is that the makers of Epclusa offer a coupon that pays for most of your out-of-pocket costs. I'm not sure if this is only in the US or outside as well, but it is worth a mention (if you didn't know already).

Good luck Tara. Just remember, be confident and know that you will defeat this thing very soon. You got this!

-- Edited by EricChuckFar1 on Thursday 16th of February 2017 06:33:11 PM

JimmyK · Guru

Welcome,

It would be wise to first seek the cure and then with a new lease on life go forward with life plans.

If you hydrate a lot you should have no problems.

Again, welcome.

JimmyK

Tig · Admin

Hi Tara,

Welcome to the forum! You have a great opportunity to get cured and on with a healthier life. Many of the problems you cited are known to occur as a result of HCV. Doing it now will stop the virus from causing further damage.

Genotype 3 responds extremely well to Epclusa. Do you know what your fibrosis level is? That determines whether or not they add another drug to it. Success rate for this regimen is 95%+ and the side effects profile is low. If you're sensitive to medication, this may be the ticket for you.

The sooner you get started, the sooner you'll be recovering all of those lost items. The improvement in clarity was big for me. I'm happy to hear the NHS is giving you this opportunity. Take it!

Tell us more when you get it. I'm glad you're here. smile

EPCLUSA PDF

Lchris1 · Member

Welcome to the forum! Glad you are able to get started on treatment. you'll find a lot of knowledge and support here. Others will be along shortly and will be helpful. I experienced an increase in fog during tx but at same time, less fatigue. It'll get better after treatment, prayers with you..chris

GoldenCurls · Member

Hi everybody,

Newbie here aww apologies in advance for lack of understanding within this topic. I have been reading some of the articles in the treatment sections about the newly released epclusa drug, which I am being encouraged to start through the NHS. However, I am working against the clock and in four days need to make my decision. So, I hoped starting my own thread would help me find information personal to my case.

I am 18 years old in my final year of a levels (UK). I was diagnosed at 15, with genotype 3a. My mother had the same GT so we assume I contracted it during birth - hence why I cannot remember a time living without the exhausting brain fog and fatigue we must endure!! disbelief

Following a recent diagnosis of phonological dyslexia, 4 months prior to my exams, it's no surprise that my mock grades and general achievement are very poor (it has never been good- only in primary school did I excel above my peers when the work was natural ability, and an obvious decline was noticed as the work became harder and relied more on independent learning, memory and attention).

My question is this: would it be wise to start epclusa in the next week, to finish just before exams start?

this would mean i would be in the prime time of revision while in full swing of the drug therapy. I am very sensitive to medication, do get migraines, am very prone to anxiety and depression. I want to make the best decision possible, and the docs will only tell me what's on the packet - 'headaches and fatigue' - which i pretty much get anyway. I have read cases where people feel better halfway through, etc.

Thanks in advance! biggrin

(more details including my VL to be confirmed - had blood tests earlier today)

-- Edited by GoldenCurls on Thursday 16th of February 2017 08:02:51 AM

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