Hep C Discussion Forum

Tig · Admin

RE: Just had fibroscan good news and bad

Canuck · Guru

Hey Jaggles,

Oh contraire - I do NOT think you hijacked ANYONE's thread, IMHO.

So many aspects of one persons experience, interest, concern is so easily interconnected/related to anothers, that is why we are all here.

I would like to read that "HRT-Fibrosis" thing from Tig too - but it won't open for me - says "error 403 - forbidden"?

I think it was "Loopy Lisa" who did some reading on HRT/ and about women, age, and our particular hormonal "make-up" etc., as it relates to having HCV in general. If you search her threads you may find what she was saying there. (Hey, where is Loopy anyway?, I'm missing you Loopy!)

Glad you've been to the gyny, and very glad she got you back to the rheumy. Leave no stone unturned. I have heard many "opinions"/advice and thoughts about women on HRT. The opinions are boggling, as far as whether HRT is a good idea, or not, for women period (with or without HCV)! I started off at 1.2 mg estrogen/2.5 mg progesterone, over time due to "opinions", I have been advised to taper down the estrogen to .9, then .6, then to .3, with pushing from many, to not take it at all! Menopausal symptoms have decreased over the years, allowing me to taper "some" but certainly (I feel) not enough to stay at .3 (comfortably), and believe me I have given these differing dosages very good long trials. Currently I am at .6, it is holding me better than .3, but not as well as when I was at .9 or more. But EVERYONE IS dif.!! Generally, I "feel" I do better on estrogen than without it.

What the heck is a "lady magnet" - sounds interesting. No idea what yer talkin about tho - never heard of such a thing! Whatzit? Will have to google this up! Unless you are just talking about the male persuasion!!

I agree with Phoenix, you are your own best advocate (and your own best friend), and you are doing very well on both fronts. Keep treating yourself with gentle care and pushing for what you need, it will come, although the chores are not easy getting there.

Did you inquire of Jeferries/Freeman about what is in their pipeline about the possibility of procuring your own epclusa outside of the UK??

Did they have any suggestions for docs/facilities in the UK to help oversee you, if and when you get your own drugs? Do you have any lines yet on whom you might go to in the UK for following and assistance when required?

C.

Jaggles · Senior Member

Thanks Tig biggrin

Tig · Admin

It has long been felt there is some protections afforded by HRT. There is a lot of information out there. Here's a technical article on it, dated but informative. Good to see you doing your homework.

HRT and Fibrosis - AASLD

-- Edited by Tig56 on Friday 9th of December 2016 09:29:17 AM

Jaggles · Senior Member

Thanks Phoenix, I am determined to stay strong bput that of course is challenged sometimes. I saw my gyneacologist yesterday and she is gong to refer me back to rheumatologist about my hand ( the vasculitus thing) and see if we can put me back on HRT..... I was better on it...but that depends on other things. I would like to g back on it for a year or so however am trying the lady magnet at the moment see if it helps....apparently women with HEP C benefit from HRT as the estrogen slows down progression?? thanks again every one xx

Phoenix17 · Senior Member

Great news about your daughter! Ah yes, Hep C with menopause. I went thru the same thing. Not fun, but you will get thru it. Listen to your body, it will tell you what it needs. Naps were my best friend. biggrin Good luck on getting the hep c drugs. You are your best advocate! One day soon this will all be behind you!

Jaggles · Senior Member

Thanks syd Canuck and tig....yes definitlay good news about my girl...I am going to keep pushing for tests...they misdiagnosed my hand for about 2 months and at that point I didnt feel right but was not ill..ILL....I got ill over a period of 8 weeks but the hand thing started it all off...conflicting advice and misdiagnosis but eventually found C...i have had to push non stop for tests etc...anyway...I'm now getting my head around it all and will be taking the other route. I checked with Greg and he sent me details , legislation / custom requirements and I can have them sent directly to me but only 12 weeks at a time for personal use ....it's my shining light at the moment and I'm saving up for it. I will of course have to find a consultant to oversee treatment. Someone on the uk forum said their GP oversaw theirs although I didn't think a GP could do that ? Once I see my consultant in January I will make a decision. To be honest I don't mind paying...just so sick and tired of being tired and irritated...dizzy with fatigue ....I'm also having Menopause symptoms from hell lol..its a constant clock watch for healthy food and snacks, rest time, bed time and work...will be glad to get shot of it. Anyway I will keep reading on here and I will remember lol....not to hijack other people's threads...thanks guys....I need feeding now and bed xx

Sydhanrahan · Guru

Hi Jaggles,

just wanted to share my happiness over your daughter's results with you. That's wonderful news.

i hadn't thought of the "bizarre" aspect of acquiring the disease and then treating it from similar non approved sources, but it's right. Also so unjust that after a life time of paying taxes and contributing positively to the community the gov can decide that it's just too expensive to save you. Makes me mad. At least here treatments have been government subsidised so I only paid for the first 12 weeks, not the second. The UK's attitude is very disappointing - no one should be suffering with Interferon now - and the success rate isn't high either, so as well as all the side effects, you stand a reasonable chance of still having hep c at the end. Did you ask Greg Jefferies if the drugs can be imported legally?

Good luck with it all - admiring your strength and positivity.

Syd

Canuck · Guru

Yes Jaggles, a lovely relief about your daughter. Now, just you to get sorted. You will be the number one priority now. smile

BTW, if you are worried about cryo, ask for blood tests, to be tested for it (if you have not already had blood tests for it, and been assessed for it), perhaps in their minds they have all already ruled it "not likely" based on their reasoning, ask the rheumo guy you saw, or your GP, or your hep doc, outright, to be tested for it, and/or find out from them what their reasoning is (if they have already ruled it out, that it is not a cryo thing) - then you may know better. Xrays of your hand/wrist/arm might reveal something else, or, the "presentation" of your symptoms may have painted a fairly definitively dif. pic in their minds right from the get-go - all you can do is ask for specific testing, and have them rule things in or out, and tell you how they arrive at their thinking. C.

Tig · Admin

That's fantastic! Don't worry, you'll get this sorted out and it will be a memory you can file in the GONE file. Congrats for your daughter's good news smile

Jaggles · Senior Member

Hey all, my daughter's bloods came back negative biggrin I cried with relief that it didn't get her too...so now all negative just got to sort me out ....

Jaggles · Senior Member

Hi Canuck, thanks for your continued support. the org that I work for does not provide us with any health benefits. We have a standard work based pension and death in service benefits but not health. I am gutted because about 8 months ago I got a quote for private health insurance and it wa only £30 per month...I declined and thought I would look into it further....months passed and then this....anyway , what ifs and had I's ...are no good now however, since talking to Greg Jeffryes in addition to a long chat with my the Hep C trust and reading up on Fixhepc ....I now know if I wait a while, which I can now I know my score, I will be able to take up the buyers club options.

I have just about enough savings to buy 24 weeks of sof / dac and knowing that there are good people out there....like you all on here...who know what i am going through and give support is so reassuring...I know I will be able to find a consultant to oversee it even though he said no before, I have been told by the trust that new guidlines for NHS consultants is to agree to oversee treatment sourced from other providers as it is saving NHS costs.. although must be licensed versions ....

I am going to wait until April and see what the new NHS financial year brings. It may even bring Eclupsa??...I have paid into this system all my life, as have my parents so I would ideally like them to give me the drugs I need if possible .........how bizarre that I mispent my youth taking drugs purchased on the black market and fought hard to break away and turn my life around ...now at 52 and I'm looking into options to do it again ....

.I know if I can beat Hep b, heroin detox and an abusive marriage I'm sure I will beat Hep C ....feeling positive today and that is because so many people Including you guys, are reaching out. eternally graetful.....I'm sure on the days when I wobble you will all be here. I will look for ways to give it back once i am cured. Today I will be celebrating my daughter being 30 .....her hep c test results are waiting for her but she doesn't want to know until after her bithday Party....I pray she has not had it passed to her because we are not sure when I got it. hep b was 1982 and she was born 86... so I know that it was only being discovered then and published 89 ....have a wonderful weekend all and take good care. Love and peace

-- Edited by Jaggles on Sunday 4th of December 2016 05:31:53 AM

Canuck · Guru

Jaggles,

Syd's right. She has good insight and experience. You can "think on things" and get it thought out/figured out. It is always good to consider info from all sources. The "no stone unturned" theory.

I was thinking the same as Syd, asking Jefferies to confirm the actual "logistics" for UK people sourcing their own sof/dac internationally. Also, perhaps he knows of docs in UK who will follow you when you are on out-sourced drugs. Perhaps ask him about accessing international Epclusa as well?

Exhaust avenues (within UK) for drugs better than int/riba, perhaps a better drug choice via your company health plan, or a getting into some upcoming trial, or getting a doc who will help you to be exempted from being forced to do int/riba or sof/riba and therefore being eligible for sof/dac within your own country. Who knows how long it will take UK to start doling out Epclusa. Failing all that, keep exploring (all the while) exactly "how difficult" it would be, to get international drugs and finding some UK doc to help follow you with it at this end as well

Like Canadian "bcfish" sourcing his own sof/dac, and UK "Razor Blade" sourcing his own Epclusa, and "syd" sourcing her own sof/riba/dac) they will all know valuable details which may end up helping you.

Take your time, the figuring and sleuthing is daunting. C.

Sydhanrahan · Guru

Hi Jaggles,

i live in Australia and when my liver really started to deteriorate last year sofosbuvir wasnt availabke here. My specialist wrote a prescription for Sof and Ribaviron which I sent along with the money to Greg Jefferies. The drugs arrived maybe two or three weeks later. I'm embarrassed to admit that I have never even written to thank him. reading his blog he sounded so sincere and so genuinely outraged that governments could be restricting treatment to people with a terminal disease, I just believed him. Also it helped having my well known and respected hepatologist advocating that path too. There is no doubt that he uses a trusted supply chain. I'd be more worried about whether you can get the drugs into the UK. Did you ask him that?

try not to panic - easier said than done I know, but it's not a decision you must make in the day or two. Read, think, take deep breaths and remember how lucky we are to have survived long enough to have options.

Take care,

Syd

Canuck · Guru

Good Jaggles,

Stay calm, keep exploring, DO find out what other good hep docs "might possibly" be available to you and willing to you help you (in UK and otherwise!), just in case things work out differently than you first thought, or better than you first thought!! You may end up getting help from docs in both AUS AND in the UK, at the same time!

Dare to dream. Take your time, be thorough, keep gathering your data, exhaust ALL options and sources of help. I know it can be overwhelming, but it will come together - it is just a matter of time (I know, I know, easy said, and hard to do!).

BTW - what kind of "employee health care plan" might you have, if any? - I do not know how it works over there in the UK, like ... if you have both (at the same time) "public" AND then "additional" employer health care plans, where the company plan provides for "extra or extended coverages" for drugs/dental and the like? If you have such an "employer plan", you could enlist someone else to make specific enquires for you, to see what the company health plan would cover for drugs (better than the public plan offers)?? Just a late thought ... I am probably just grabbing at straws here. I am thinking, if your company had such a drug coverage plan, you could possibly get "a choice" or lobby for sof/dac, over sof/riba? C.

Jaggles · Senior Member

Thanks tig56....I'm taking deep slow breaths...haha...already feelimg a sense of empowerment through talking to you all....much reading to do but first must walk my dogs on our beautiful beach...wishing you all love and peace today

Tig · Admin

Greg Jefferys is a well known advocate. Have you seen his blog? This is another one of his websites and may help you. He has helped a lot of people. You can reach him through his blog, which should help you confirm his identity. Try to relax, don't get overwhelmed. One step at a time...

Greg Jefferys Blog

Jaggles · Senior Member

Syd....how can I be sure it is him and how do I know the drugs are safe and genuine? its such a big risk....I've been reading posts from all aver the world...thanking him and Freeman for their help...so many questions and now got to get ready for walk and work the dogs...this s gonna bug me all day biggrin biggrin

-- Edited by Jaggles on Friday 2nd of December 2016 01:54:26 AM

Jaggles · Senior Member

Thanks for your continued responses...you are all amazing ...i have been chatting via messenger to Greg Jeffrey's ...found him on facebook ...of all places .his face book page filled with messages from people who are now free of this damn thing......im up responding to him at 5am and he was straight up for helping me. Said he had just been chatting to,a guy about interferon / rib about how it damaged his liver....has offered to help me with sof / dac...Max 24 weeks but could take 12 he gave me his e mail address and costs ..kept to the point and no hard sell so I'm thinking this must be him right? I'm scared but going to call the trust today see what they say. If they will find me a doctor to oversee this it would be a quick turnaround...possibly? Very scary and don't know what to do...I know you guys can't tell me what to do ....wtf ... blankstare

Tig · Admin

Here are the current treatment guidelines, including the US and UK. They are quite similar however. The Electron studies had an arm of GT 3's w/wo cirrhosis that were treated with Harvoni and Riba. The cirrhotics didn't do well, but they had good results with the non cirrhotics. The downside is the Ribavirin. Regardless, I'm not aware of Harvoni being used for 3's. More Sovaldi/Dak and none of the Riba blues. I would prefer the newest DAA, Epclusa w/wo Voxilaprevir, that may take some time to be available. There are generic options now and these newest of new drugs are going to be made available (import).

One drawback of that route is the ongoing care, and testing I feel are necessary, they are sometimes hard to find. It can be done though. You should also be comfortable and confident when discussing treatment with your care givers. Too often, they wrongly assume we don't know that of which we are striken! Whoops, wrong! Let them know you want to be be part of your treatment plan, not just the subject of. We'll do our best to help you along the way.

AASLD HCV 2016 Guidelines

EASL HCV 2016 Clinical Guidelines

Pablito · Senior Member

I've attached a document which breaks down which DAAs are recommended by genotype.

Jaggles · Senior Member

Hi, sorry I don't type too well in a hurry...I got the print out from the scan but it doesnt have much info on it....I also meant to say that im a bit confused about Harvoni.....hep c Alliance told me it is a company licenced to sell athe same drugs as gilead, my consultant would not even consider it an option he would oversee or endorse, ....I have other people who say that it is not what I need .....I am a bit confused ...doh

thanks again to all for the wisdom and reassurance. I have e mailed the hep c trust today as the lady who is supporting me may be able to suggest who, where, what I should be doing next. im gonna leave no stone unturned and for sure kick up some dust about this....

thanks for the link Canuck, I am going to do lots of reading.

tired and irritable today ...feels like a long day....goodnight all

Shadowfax · Guru

Welcome Jaggles

I can only agree with everything said so far. You do have time on your side to find the best protocol for you and the easiest. I would just start asking and searching for someone who will accommodate you with the newer better choices.

Please do keep us posted.

Sf

Sydhanrahan · Guru

Hi Jaggles,

its hard not to get angry and panicky when you are confronted with a life threatening illness and told to wait until it gets worse before you're eligible for treatment.

I definitely think Canuck and Tig are on the money here- read and reread their advice. Sometimes the cure is as bad as the disease and I would join them in recommending that you don't leap on the Interferon/RIBA bandwagon too quickly.

Canuck and many others here speak highly of Epclusa. If its not possible to get it in the UK then consider the international option. I got my first 12 weeks through Greg jefferies - look him up on Google. It saved my life.

Hep C is comparatively slow acting and with a fibroscan to envy, you have time to quietly consider your options.

this forum is great place to find people who have walked the very same path before you.

Take care,

Syd

Ruby Red · Senior Member

Great to hear of your fibroscan results smile I must agree with previous posts. I would, for what it's worth, would opt OUT for interferon/riba. I'm sure you will be successful in finding a doc that would take a different look at the meds offered.

Chin up, you received some really good news 6.9

Ruby

Pablito · Senior Member

6.9 is the great news...you have time on your side. I'd give interferon/riba a swerve and wait to get on a DAA. Look into options outside of the NHS too.

Tig · Admin

Here's some good reading on what works and what doesn't.

Core Concepts GT 3

JimmyK · Guru

Jaggles wrote:
I have a printout from scan. so Harvoni not good for 3s .....xxx

Greetings, Welcome and if I may ask, can you clarify the above statement?

Thanks!

JimmyK

Canuck · Guru

Try to stay as strong as you can. DON'T panic, you can be mad, that is actually more helpful at times, than feeling sad about the unwanted state of affairs, we do understand what you are going through - it IS a very difficult time to go through. IT WILL work out! Keep going at it methodically, enlist the aid and advice of all your "experienced" health and hep c professionals around you, to help you seek the best regime you can find for yourself. I have a "feeling" (but I have no idea really) that you might have a wee bit of time/leeway on your side. But that is a discussion for you and your docs to have. You have to heed the best guesses and advice of your doc(s).

Sorry if I overwhelm you will info. Just concentrate on looking for the best drugs you can get. Let that be your main pursuit, whether the drugs are found by public system, trial or international.

Don't fret about your 6.9 zooming. Fibroscans are only one single "indicator" of how you are doing, ALL your tests (together) show your doc a better picture of you and how you are doing, from bloods to ultrasounds and physical exams. It's good you had a fibroscan done tho, now everyone might know (a wee bit better) where you might be standing.

Here is an excerpt from a fairly current USA body re: treating GT3's (Epclusa or Daklinza):

Genotype 3 Treatment-Naïve Patients Without Cirrhosis - Recommended
Recommended regimens are listed in groups by level of evidence, then alphabetically.

Daily daclatasvir (60 mg*) plus sofosbuvir (400 mg) for 12 weeks is a Recommended regimen for treatment-naïve patients with HCV genotype 3 infection who do not have cirrhosis.
Rating: Class I, Level A
Daily fixed-dose combination of sofosbuvir (400 mg)/velpatasvir (100 mg) for 12 weeks is a Recommended regimen for treatment-naïve patients with HCV genotype 3 infection who do not have cirrhosis.
Rating: Class I, Level A

These choices were impossible for me to receive, given my circumstances (treatment naive), and living in my particular location (my Province) in Canada. They would not have made these regimes available to me, even though these drugs ARE approved (in theory) for use in Canada, and even though these drugs would have been better for me as far as effectiveness and sides! I had to find a trial to get better drugs than the sof/riba that was my first and only offer!

I hear ya!, about the strength required, you will wax and wane, but you WILL find it in you to exhaust all your avenues and do the best you can for yourself, and THAT is all we can do. Hang in there. Keep at it. smile C.

Jaggles · Senior Member

I'm starting to get what you are saying...taking in so much info....thank you thank you thank you so much....it is confusing at times but it's beginning to make sense. I aked for copy of my bloods notes yesterday but the printer was not working and she said ( the scan nurse) she will send in post. I have a printout from scan. so Harvoni not good for 3s .....I will be looking into options and sources and wait as long as I can ....I will use my negotiation and coordination skills to try and get a better deal with drug of my choice. If I have paid into system all my life, working hard...i know they have a duty to offer me the best treatment available ...its so tough fighting any battle when you have little strength. Yes really relieved about scan and remarkable that my liver was 6.9 because it certainly has had tough time lol...just hope it doesn't deteriorate before I get treated. Gotta go work now but will be back later ... thanks again Canuck and tig xxx

Canuck · Guru

Hi again Jaggles,

Sorry to hear of your disappointments, about what they seem to be "potentially" prepared to offer you for treatment drug choices. It does seem to be very limited/restricted in the UK and here too in Canada.

This is partly why I wished you to try to limit your attention to the immediate steps ahead of you. This may be the greatest obstacle to face you in treatment, how to obtain the best regime you can.

You've mentioned Harvoni, a couple times now, and i am not exactly sure why, but (as I said to you before) as a GT3 (in my book) Harvoni is not for you.

Personally (as a GT3) my preferences for drug choices (in preferred order) would be: Epclusa, Epclusa with VOX or sof/dac. My next "tail-end" choice would be sof/riba, dead-last would be interferon/riba. Most people find the riba based (and interferon) regimes hard to take. The cure rates for the other daa's I have mentioned are of higher success rates, better tolerated with less incidence of sides. There are other regimes out there, but my first three choices are what I would prefer.

Concentrate on how you can get better drugs than interferon/riba (I am actually surprized that that is what they offered, and that that's all that they offered you thus far, even sof/riba would be step up from that (in that the sof/riba success rate is better for 3's than interferon/riba)! Many 3's HAVE been cured on sof/riba in the past, but it pales knowing there are even more effective and more easily tolerated daa's out there for us now. As a 3 I would rather do sof/dac over sof/riba, but in a "public" system it is hard to even get sof/dac out of them. I would wish for epclusa and failing that then sof/dac (these are just my opinions/ideas/prejudices, please just take them with a grain of salt).

Please do some research and reading, find out all the "standard" regimes you could "possibly" get from your doc(s) and your public system, then explore and exhaust every means available to you to obtain better drugs - start searching for trials, (learn from others who are knowledgeable with your system) what are the exceptions in the public system that would make it necessary for you to be "exempted" from having to do riba, etc. Leave no stone unturned, enlist local advice from every helpful person (docs or otherwise) that you can find in your country as to finding any available/possible trials coming up that may offer better drugs, how one can possibly bypass riba, to even sourcing international generics (sof/dac) via another country and finding a doc in the UK who will do your care and monitor you while you are on your own purchased drugs. I think epclusa will take even longer to come to ready-market in UK as it is doing here in Canada. I think that is why bcfish was pushing you to explore sof/dac via Australia like he did - he being a 3 in Canada, just like me, was faced with extremely limited drug choices (his being interferon/riba and mine being sof/riba offered) - neither of us could get sof/dac here as a first choice!!

It is great your fibroscan only shows 6.9 kPa's, being cirrhotic does not help a body or treatment in anyway, and cirrhotics present "pressure" to get treated sooner than later. You are going to have to determine (with your docs) how sick you are, how long you "might" be able to wait for a better treatment choice, and judge if "waiting" is actually going to get you any better drugs (via the public system). I was F3 and then F4 and told by another hep doc NOT to wait!! - he pushed me to start the 24weeks of sof/riba right away that I had been offered, I feel "I pushed the envelope" by waiting a bit longer to finally succeed in getting into my trial instead, where I received better daa's.

It is a poor overloaded public system that makes people wait until you are over 9 kPa's or to reach F2 to still only be offered a less than the ideal drug choice.

Keep methodical, enlist aid and advice, keep sussing it out how to get the best drugs you can. C.

Tig · Admin

Hello,

That's great news regarding the fibroscan results! That's very positive. Did you get any of those blood test results? They would be helpful.

I can't tell you not to accept the 6 months of Interferon and Ribavirin. If I had a healthy enough liver and could afford to wait awhile, I would wait, personally speaking of course. That treatment has a success rate of 65% for genotype 3's and the treatment side effects can be gruesome. If you were cirrhotic and had serious complications, I would be more apt to recommend it. I had to go through it and it's no fun at all. I don't know much about the NHS, but I have heard finances are strictly regulated right now. You may be able to wait awhile under your doctors guidance and then try again in the near future when the funding is better. It works the same way here in the US. Consider it if you can...

That's still a great fibroscan!! You can't be upset with that, yahoo!

Jaggles · Senior Member

They also said a big no on the Harvoni route.....really anti Harvoni....even though I told them the Hep C trust would advocate for me they would not endorse that option. They said drugs next year are likely to be much cheaper for NHS ....what kinda deals are these arses doing....messing around with people's lives like this it's so frustrating....

Jaggles · Senior Member

ok....so I got a 6.9 score...said my liver is normal....the down side is they will only offer me generic ...interferon with ribv for 6 months. I would only be offered Daa if score was 9 or above.....they said I can wait and see if the new financial year in April sees NHS giving new drugs for G3 apparently but I could be waiting a long time. Don't know what the hell to do now....seeing consultant next in January...do I take the generic and 50% chance of beating it or hang on for a while and see what is on offer later on? Will I cope with work on the generic? This ****in stinks....sorry...I'm so pissed off but relieved at same time....thinking I should hang on for a while if I can....what do you think?

Hep C Discussion Forum

Legal Disclaimer: