Hep C Discussion Forum

mallani · Guru

RE: Travandrum India

sunbeam · Member

Thanks Pablo

I am a Londoner living on the south coast nr wareham, Dorset. Thanks for you help and advice. I'm on day 2 of week 4. I have an appointment for FBC test in the morning at my local GP. (country doctor) i don't think they have delt with this before ( When i did interferon+ribavirin 7 yrs ago) i had a HB problem after 9 months and had to cut the ribavirin.

The hospital you mentioned sound like an option or an on line one is a good idea,i did not know about this.

Best Regards Steve

Loopy Lisa · Guru

Hi, and welcome to you and your wife. I hope treatment goes well, you have a great combo there. I nearly was off to India myself and then got approved.

Everyone is great if you need anything or just to moan.

Anyway, just wanted to say YAY on the road to UND.

Happy weekend :D

Scruffy · Guru

Hi Steve and welcome

Maybe you didn't understand your doctor. My doctor who was a liver spec. sent me to a hematologist to have my hb monitored and treated while I was under his care.

Best wishes for your tx.

Pablito · Senior Member

sunbeam wrote:
How often should i monitor the HB ? My GP doctor has agreed to give me the test but he said he is not qualified to monitor it.

Me again. I just read this bit. I'm pretty sure what your GP meant is that s/he isn't specialised enough to interpret Hb in the context of rivavirin treatment. Any doctor can interpret a full blood count. It is most basic of medical tests; so it must be s/he meant they couldn't advise you around what to do if the Hb drops vis a vis reducing ribavirin.

Your NHS hepatologist should really be thinking outside the box here and not rigidly adhering to the rules. I know there is one hospital in London that has agreed to follow-up patients who go the generic route. I'll try and find out on Monday when I have my next appointment which hospital it is.

The other option is that you can use the Choose and Book rule and seek to transfer your hepatology care to another hospital (the Choose and Book system decrees that patients can choose which hospital they get their specialist care from).

The problem you face is getting into the system quick enough before your Hb drops. Like you, I went through interferon/ribavirin before so you should have a few weeks before your Hb drops to sort something. If you can't sort a private hepatologist the other option you have is telemedicine (i.e. an internet doctor). Again, PM me and I can recommend someone.

Pablo

Pablito · Senior Member

Hi Steve

Well done to you for taking the initiative. RE HCV, as the members have commented already, it's the EOT + 12 weeks viral load test that is most important, and if I read your posts correctly it sounds like your hepatologist will do the EOT + 12 weeks one. There is no reason they can't do VL tests during treatment really but s/he probably feels disempowered by your empowerment and won't do them for this reason...that and the cost.

Re ribavirin, again as people have already stated, it is very important that you have FBCs to check your haemoglobin to make sure you don't became anaemia; so I'm glad to hear your GP is doing these.

Going back to VL testing, it would be nice (but not necessary) to have them during treatment at, say, week 12 of 24 weeks. Why don't you ask your GP to write the form but you pay for the lab costs? They are very easy to interpret...any doctor could do it after 10 minutes of reading...perhaps send him an article about VL tests.

Where in the UK are you? If you are in a major city you should have no problems finding a private hepatologist. Again, thinking psychologically, you might have more luck if you book yourself in for a proper assessment rather than framing it as just seeing him/her to order a VL. It will be harder to turn you down in person than it is by phone via a secretary. They charge around £150 for an outpatient appointment. You'd need the initial appointment and a follow-up for the results. Unfortunately, unlike the US you can't get lab work done privately here without a a doctors letter. I think a VL test is around £300-500 in the UK.

If you are in London private message me and I'll give you the name of a private hepatologist, who'll be able to see you within a week.

Pablo

-- Edited by Pablito on Friday 3rd of June 2016 04:23:07 PM

-- Edited by Pablito on Friday 3rd of June 2016 04:23:55 PM

Linuxter · Guru

Hi Steve,

Welcome to the forum, ya came to the right place ... as Jimmy pointed out ... we're just one big family and will help see you through from start to finish and beyond.

WATER ... carry a bottle of water with you at ALL times ... you need to drink at least a gallon of water per day, can't stress that enough ... I know you've done Ribavirin before but water makes a HUGE difference in both helping the meds do their thing and keeping you from having drastic side effects ... I just wrapped up my Tx (treatment) in April with Sov/ Riba and water made all the difference.

Glad you are well on your way with Tx ... we can help with interpreting any lab results along with you going over them with your Doctors.

I've found water, nutrition and exercise all work together to help the Tx process. I made lots of Green Smoothies to help keep the toxins moving out of the body as well as providing nutrients to help the system in fighting the virus.

Check out the Green Smoothie Ranch for plenty of recipe ideas ... I highly recommend lots of Greens.

Wishing you the best,

Dave

sunbeam · Member

Thanks good advice

I am on 600 morning and 400 night time. good we will watch the HB every 4 weeks to start.

The dog is only borrowing the glasses lol

Ps my wife has seen the WATER comment. So it looks like i will have to now, she is always trying to get me to drink water. smile

Steve

see you soon got to go fix my van now.

-- Edited by sunbeam on Friday 3rd of June 2016 12:50:57 PM

JimmyK · Guru

Seems odd that a GP does not know how to monitor HGB counts but no matter so long as he is willing to order the tests.

Judging from your picture you want ideally to remain between 12.4 to 14.9. In that you are taking Ribo that 12.4 is probably going to drop some. I would draw a line somewhere around 10 to say 10.5.

Assumption is you are taking 1200mg a day on the Ribo. If your numbers drop below 11.5 I would attempt to contact / advise the prescribing Doctor. He may say cut down the Ribo (600 to 1000?)

If you posts the tests here we can then advise about when it may be a good idea to contact the Doc. I would again state if you can get the blood drawn every 4 weeks or so do it. post here.

Now your name as well as picture brings up another point.

The Sun is NOT your friend while on Ribovirin. Also your skin tone tells me you need to cover up while outside. You bust out in a RiboRash you will not have a fun time. And take those glasses off the dog and put them on yourself. Your eyes will thank you. LOL

Tig · Admin

That depends on your side effect symptoms Steve. Certainly one at week 4 is advised and a minimum of every 4 weeks through treatment. If you start to develop a drop in things like your hemoglobin and other symptoms of anemia set in, some doctors will do a CBC every two weeks. As far as a doctor not being able to monitor your lab tests is hogwash. If the results are poor, the monitoring is no different for you than anyone else. That's why a HCV specialist is advisable. Certainly with 24 weeks of Riba, you're going to witness some anemia. That's what it does, it's expected. So as I said, make some calls, even a walk in clinic may be able to direct you to a doctor or service willing to help.

sunbeam · Member

How often should i monitor the HB ? My GP doctor has agreed to give me the test but he said he is not qualified to monitor it. Yes WATER my wife is always trying to get me to drink it, I will have to give in to her smile

I haven't had any side affects from the ribavirin yet, but thanks i will be aware of it for i am only on week three.

When i did ribavirin+interferon i had to reduce from 5 tabs a day to 2 on month 9. Back then on that treatment i did not know if i was coming or going bleh

Thanks Jimmy

Steve

wmlj1960 · Moderator

X3

3-4 liters of good water daily without fail will be your best friend during treatment. smile

Tig · Admin

Hey Steve,

Yeah, what Jimmy said! wink

JimmyK · Guru

Sorry but one more thing not yet mentioned in direct response to your questions.

WATER

You must drink LOT's of water while on Treatment. Failure to do so and you are going to be sick as a dog.

Jimmy

JimmyK · Guru

I am going to base my position on the following statement:

"My NHS doctor has agreed to give me a blood count test, so i can monitor my hemoglobin (HB) Reference range 13-16 g/dL I have started treatment at 14.7 g/dL the wonderful Indian doctor told me if i drop below 10 g/dL to reduce the ribavirin. and my NHS doctor has agreed to give me liver function blood test. But refuses to give me a viral load test at 4 weeks saying he is not qualified and he would be responsible for it."

The CBC's ( Blood Count) and Liver panel are in my opinion the key requirements. If your NHS Doctor has agreed to monitor these then personally I believe you are covered in the critical areas you need to be.

Make sure you pursue these and take advantage of them, in particular the CBC's that monitor the hemoglobin in 4 week increments if at all possible. Push for that and post results here. We will advise if you need to look into things further based on the results.

We will not advise outside of required contact with your Doctor.

Example only now: If we see your hemoglobin drop we will NOT tell you stop or cut back on the Ribovirin. We will however tell you to contact your Doctor if we see anything of concern and help steer your valid questions and concerns to you licensed Physician.

Regards

JimmyK

Tig · Admin

Hi Steve,

Looks like the guys have addressed your questions. I want to ask if there is a possibility of finding a different liver specialist? Will the NHS allow you to search for a physician? Any Gastroenterologist, Infectious Disease specialist or even a GP with some interest will be able to provide care or at least proper monitoring as you go through this. Were it not for the Ribavirin, the side effects would be minimal, but Ribavirin demands attention. As mentioned, the Hemoglobin levels are important to monitor closely. If you haven't been on Ribavirin before, it can deliver some side effects that are unpleasant, fatigue, skin maladies and mood changes. Be aware of that and stay close to us here. We can help you address some of these issues, but you have to seek the help of a qualified physician during treatment.

So my advice is to keep searching for a doctor that is willing to help you. They swore an oath to do no harm and help their patients, denying you care because your NHS didn't supply you the medication, when they wouldn't, isn't reason enough to refuse you the help you need.

sunbeam · Member

Thanks Mike

Well done it's been a long road, I love to here about SVR's.

Steve

JimmyK · Guru

Steve you are part of a family here no worries. There is a huge base of informative people right here. We are happy to help in any way we can.

Again, Welcome and forget being alone, you're not. wink

sunbeam · Member

Thanks Jimmy

I don't feel so alone with the situation now. Knowing you guys are there, Doing all this and not being a heptologist.

Thanks for all your help, I will keep posted at each stage.

Steve (Sunbeam)

wmlj1960 · Moderator

sunbeam wrote:
.I am looking through all my test results to try to find what EOT+12 is ? i'm on a learning curve with all this. can you tell me?

EOT + 12 = 'End of Treatment plus 12 weeks'. After treatment, if the virus is going to return, then it generally will do so within 12 weeks after you have completed your treatment. If your RNA PCR viral load test result remains 'Undetected' at 12 weeks post-treatment then you are considered cured = SVR (Sustained Viral Response).

More abbreviation definitions are here:

Forum abbreviations

-- Edited by wmlj1960 on Friday 3rd of June 2016 11:03:23 AM

JimmyK · Guru

sunbeam wrote:
Got it! End OF TREATMENT after 12 weeks, SVR

wink

sunbeam · Member

Got it! End OF TREATMENT after 12 weeks, SVR

JimmyK · Guru

No problem. If you can do 24 weeks of Ribavirin it won't hurt anything provided Hemoglobin does not drop to the danger levels. That can be quite debilitating.

In all cases follow your Doctors recommendations. I was just curious in that you are doing the full 24 week regiment.

The ION studies are here ----> http://www.drugs.com/pro/harvoni.html#S14

When pre treated folks go to the 24 weeks (yours truly) the rates are incredible for SVR.

EOT = End of Treatment.

SVR ( undetected ) at that point tends to indicate cure. Prior to that point it remains probable but not certain.

So testing for the RNA Q factor at EOT + 12 is the main goal. Keep an eye on the CBC testing and are they doing Liver Panels for you? (ALT/AST etc)

Don't sweat the VL count but watch the others and you will do fine.

JimmyK

-- Edited by JimmyK on Friday 3rd of June 2016 11:00:01 AM

sunbeam · Member

Hi JimmyK

The HEP doctor in India thought it best because I have had hep for 22yrs plus, and had previously unsuccessfully done interferon for a year 7 yrs ago.

I think he gave me the best he possibly could, defiantly the most attentive doctor i have ever seen, he was seeing me between doing liver transplants.

I put my trust in him.

I am looking through all my test results to try to find what EOT+12 is ? i'm on a learning curve with all this. can you tell me?

Thanks for your interest and help ,

Sunbeam

JimmyK · Guru

By the way. Ledipasvir Sofosbuvir does not produce Breakthroughs. At 4 weeks most are UND and it is a great moral mind boost but only indicates the stuff is working.

Just curious now. In that you are doing 24 weeks, why did you decide to add the Ribavirin? I could see it possibly with the 12 week course but just interested in your reasoning.

Thanks

JimmyK

JimmyK · Guru

To be honest with regard to the Viral load, only the EOT + 12 counts. If they will monitor hemoglobin that is more important right now given the Ribavirin.

JimmyK

sunbeam · Member

Hi Tig

Thanks for getting back to me.

The only problem i am having is the monitoring by a physician ! My NHS doctor has agreed to give me a blood count test, so i can monitor my hemoglobin (HB) Reference range 13-16 g/dL I have started treatment at 14.7 g/dL the wonderful Indian doctor told me if i drop below 10 g/dL to reduce the ribavirin. and my NHS doctor has agreed to give me liver function blood test. But refuses to give me a viral load test at 4 weeks saying he is not qualified and he would be responsible for it. It would need to be done by a heptologist and my NHS heptologist of 22 years said they are not allowed to monitor me because they did not supply the drugs. So i have rung his private practice several times after a couple of attempts the Secretary phone me back said she would speak to the heptologist and call me back, that was three weeks ago now! I do feel like they just don't want to know!

What is the norm for viral load monitoring start of treatment in India it was 1023347 lU/mL . Do i need to have one at 3 or 4 weeks into treatment ? They said they were happy to give me one 12 weeks after treatment.

Just RED TAPE. I feel so much more able to deal with everything since i have been on the treatment,Before i could not even go on the computer for more than 5 minutes without being totally exhausted.

JimmyK · Guru

http://hepcfriends.activeboard.com/t62115233/links-to-hep-c-related-web-sites/

Tig · Admin

Hi Steve,

Welcome to the forum! I'm glad to hear you got your treatment medications in hand and have got the ball rolling. You got started at a good time, you're right on the cusp of cirrhosis. You shouldn't have any problem clearing the virus with a 24 week course of treatment. You'll be Hep free before the new year! That's a great way to start 2017.

We have members that have either been to India and received their medications, or have mail ordered them through an advocate in Australia. It takes some testing and the right paperwork, but it's still accessible for many and that's what counts. It's vital that people are followed by a physician.

If you would like to add your genotype, protocol and some data to your signature line, it will help people understand where you stand. You can see what we have in ours and decide if you would care to do that. It helps when replying. You can find a link to the instructions in my own signature.

Keep us informed and I look forward to following your progress.

sunbeam · Member

Hi everyone,

I have just returned to UK from KIMS hospital Travandrum, I am 57 geno type 1a for 22 years, My liver stiffness Kpa is 12.4.

I have returned with Generic HEPCVIR L (Ledipasvir Sofosbuvir)+ribavirin) Total cost of round trip was £3,500 for 24 weeks treatment.or £2,700 for 12 weeks.

This is a three week trip, you have to have a viral load test before prescription which takes 10 working days.

The Hep fog lifted after just a few days and i am brighter and feel better than i have done for years. I am half way through my third week today and have a big smile.

I have been to India many times and have contacts there, who can help, I have a step by step guide if you want help. Good Luck

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