Hep C Discussion Forum

Tig · Admin

United Kingdom - specific issues

Beetree · Member

Yes, I do understand all that. Nonetheless, I saw in an paper somewhere that the virus can lurk and not be detected in a normal pcr test. I've been reading averything I can find.

The haematology Consultant who was on the phone to me for about 20 minutes explaining all the possibles, suggested that another test might be worthwhile.

Maybe they forgot to reprogram the machine from SARS-CoV-2 !

Tig · Admin

If you have received a RNA PCR test for active viral load and it was NOT DETECTED, you have no chance of a low level infection. You're either actively infected or you're not. Once your test results indicate no active infection, then you're in the clear as far as that is concerned. You will forever be positive for the HCV Antibody, all of us Heppers live with that for life. It doesn't mean we have an active infection, just that we were exposed to it. The antibody test is always the first test performed and if it's positive, it leads to the RNA PCR Viral Load testing to determine an active viral load. The PCR provides a quantitative viral count and is the gold standard in determining whether you do or do not have an active infection.I personally have not ever met anyone that had HCV and cleared or cured it, by themselves or treatment, that have spontaneously reactivated or relapsed their original infection. It's possible to be reinfected if exposed to the virus again.

What can continue to occur, is the progression of some of the damage done. That said, things generally begin to improve. Not to say that things like joint damage (arthritis) can't continue to be problematic. If the virus resulted in joint capsule inflammation, which resulted in joint pain, clearing the virus can also improve or reduce that inflammation and you'll gain improvement in weight bearing and rotation with less discomfort. It tends to depend on how long the infection wreaked havoc on each individual.

I hope your Mother is feeling better. Here in the US, like you, we've gone to a lot more online consultations, they call it Tele-Health, Video Health, etc., etc. I have to go in to see my internist tomorrow and they have already checked with me 3 times to be sure I'm not coughing, feverish or been exposed to anyone with the COVID virus. These are some crazy times we're living in! Be well...

Beetree · Member

Thanks both.

Independent blood tests would be worthwhile I think. Good idea.

Somewhere I read than the virus can be active but below normal levels so not normally detected. So how WOULD it be detected then??

The Health Service is oppressed at the moment so I'll pause a while. My mother has just gone in with a UTI. They're coping well, but definitely busy! Local, normal consultations are by phone only.

So no other tests are upcoming just yet.

-- Edited by Beetree on Wednesday 8th of April 2020 09:24:57 AM

Tig · Admin

Hi Bee T,

Has your physician done any auto immune disease testing on you? You may have some underlying issue going on that warrants some additional testing.

Here's a link to a UK firm that may help you.

AutoImmune Testing and Disease

Observer · Guru

Oh darn it BeeTree. I would never wish chronic HCV on anyone but it must be soooooo frustrating for you to see a possible explanation and fix for your health issues and find out you dont have it. I totally empathize with your frustration of having symptom after symptom being dismissed by Drs and I really wish you had the result you had wished for.

Have they looked into possible liver damage from when it was active?

Beetree · Member

Thanks Tig, but, excuse me for not rejoicing. If the virus were "live" I could expect it to be cleared in 3 months and look forward to some improvement. It would have been the lesser of the two evils. Adding to that any attitude that I don't have HCV so there's nothing to compensate for, doesn't help!

As it is, I wake every morning after a night of sleep broken by neuropathy pains, and with those and parasthesia throughout my arms and legs. It takes quite a while to get moving. Joints are all sore though, especially arthritic legs. Walking more than about 50 metres is darned painful and needs a period of recovery. I can't use the big supermarkets, too far to walk.

A number of times I've seen a doc with some unexplained pain or other and had test results come back clear and been told to lose some weight and see how it goes. Or itchy skin, or crippling fatigue. You don't go twice if the first time made you feel like a whining skiver.

My mother has neuropathy, though not as bad as mine at my age. Her HCV was cleared a few years after contracting it.

True, a percentage of chronic cases go on to develop serious liver damage, though the figure I have is about 20% of the 80%, = 16%; quite low.

-- Edited by Beetree on Tuesday 7th of April 2020 06:39:00 PM

Tig · Admin

Hi Bee,

That's good news! You're one of the 20% that is fortunate enough to have cleared the virus spontaneously. It doesn't happen often and I don't know many that have enjoyed the same good news. That alone should make you happy. The issue of when you cleared it, is another story entirely. The question of your length of active infection comes into play when considering how much damage the virus may have caused. If you cleared the virus following the acute phase of infection, then damage would be negligible. That is typically the time frame that most people that clear the virus on their own, do. After 6 months of acute infection, the virus enters the chronic phase. That's when the virus has dug its claws in and stays on for the long term. That is when, if allowed to fester, the various forms of damage begin to occur. Arthritis, increasing liver fibrosis, auto immune diseases, chronic aches, pains and various other maladies start to build up. Not in everyone, but I feel the majority of patients with chronic HCV go on to experience one or more long term problems. Some resolve after the virus has been eliminated, others do not. We're all different in that respect and again, it depends on how long the virus attacked your body unchecked. Your itchy skin is certainly one of the problems many experience.

The possibility of disability compensation from it has been difficult to prove. If your doctor is on your side and is willing to provide the documentation, then you're going to have a better chance of receiving it. Hep C patients and our problems, especially the long term issues, have been disregarded forever, in my opinion. Only recently have we been given the attention we deserved decades ago. We have had a long road to get where we are now and these new DAA's (drugs) have been a saving grace for all that get them. Testing and awareness of our issues remains important, as does access to these life saving medications.

Beetree · Member

It's come back that I don't have an active HCV virus.

That's annoying because I was hoping for some relief of symptoms on treatment!

Have had a long discussion with haematologist. QUestion s remain which I didn't get clear - which symptoms stay with you if you eventually beat the virus off?

I remember going to the doc with itchy skin. I was fobbed off so of course one doesn't go back, though it's been there for years. Is that something you'd only get with an active live virus? Dunno. And so on down the list.

All sorts of possibles - duration of live virus, false positive tests, false negative tests etc.

If it's accepted that my neuropathy is very likely from HCV, ie no diabetes etc., then I may get soeme form of compensation. ie no diabetes etc.

Because I've moved aroundn and will now be registering with a new center, I'll ask if they can repeat the test(s).

Although the forms say it's assessed on the balance of probabilities, it sounds more like you have to prove everything beyond reasonable doubt, now.

Observer · Guru

Well thats pretty awesome that she found your 42 year old diary ... good that you liked her from the start... I cant imagine how the rest of your lockdown would be if you had said something not nice wink

yes is was a bit of a nightmare trying to remember, list and date all the morphing symptoms my body went through ....luckily I have kids so a lot was...hmmmmm well so and so was 10 or 11 when I started having that symptom ...so I built a timeline like that...

smile

Tig · Admin

Hi Bee,

Here's some information from your NHS. Hope it helps you to decipher their code! As far as qualification is concerned, nobody will prescribe treatment until you have the RNA PCR (Viral Load) testing done. You will always be positive for the HCV Antibody, but ONLY when you have a quantifiable viral load (active infection), will you be prescribed treatment.

NHS Hep C Treatment

Beetree · Member

Thanks. Glad you got there!

24 years - pah!!

My wife Anne has been using lockdown time to withdraw boxes from frightening corners of the attic. She unearthed a diary of mine, from 1978. I don't even remember keeping one.

Inside there's an entry "met Anne, seems quite nice". We were both at university.

Then an entry about nosebleeds and Cryo Infusion, on April 3rd. 42 years to the day!

oh well, it wasn't such a bad day :)

Observer · Guru

Hi BeeTree

sorry I dont know anything about british compensation

In Canada there were a lot of hoops to jump through...had to access the medical/hospital files that proved I got it from the blood services (4transfused units) and Dr. and I both had to fill out pages and pages of forms...I had to recall and write down 24 years of ever changing (and worsening) symptoms...and I had to have a biopsy to determine level of liver damage.... I was at level 4 = cirrhosis

When you are at the specialists office be sure to ask him/her about any help to navigate the process...Im sure they would be able to steer you in the right direction

Beetree · Member

HI

Just diagnosed, haven't had the live-virus result yet, I'm still pretty ignorant ....

New words to learn: cryoglobulinemia I knew about, but not membranoproliferative glomerulonephritis.

Q1 ) I read that Sovaldi was too expensive for the NHS. Does anyone know if that's still the case?

Q2a) The compensation scheme...

I see the figure they're quoting is £18,000 pa. Is that The figure, or the max? If you have antibodies, and signs of symptoms, is that enough to qualify or do they cut it back according to what you're showing?

Q2b) About 10 years ago - so 2010, I had an operation in South Africa. All paid for in a private clinic, by travel insurance. It's my understanding that it's very unlikely that there would have been any problem with proper blood supplies at that date.
Has anyone had the compensation claim rejected because there has been foreign treatment? It was a herniastrangulation, and they didn't "cover" the bleeding condition with any clotting factor, but it bled a bit so they gave me 2 units of blood.

-- Edited by Beetree on Thursday 2nd of April 2020 06:01:30 PM

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