pain

[rickyrocket1]

hi to every one well first day hasnt gone to bad since yesterdays start on the combination traetment too the ribvarin worse part so far more lethargic feel sick and terrible sleep last thing is dont know if its related but ive got the most awful trobbing pain same side of liver but in the back bloody terrible was wondering if any one knew what this is or do u think its totally unrelated many thanks ricky

[Tatjana]

rickyrocket1 I am on same treatment three weeks. The only side effect I have that you mention is the terrible sleep. I think also we all have different side effects? I have immediate contact if needed with specialist nurse. If you do, I suggest you make contact. It is better to be safe than sorry. Check it out now please.

[rickyrocket1 in reply to Tatjana]

hi and thanks i to have a hep c nurse and i agree thaat we do all get different side affects but the sleep thing is awful i think this down to the ribavarin do u agree ricky

[Bolly]

Have you been advised to eat a high fat snack or meal when you take the Riba? Its much better absorbed this way. If you cant manage a meal, then something like ice cream or peanut butter will give you the fat. It should also help with any nausea.

[Tatjana in reply to Bolly]

Bolly, for breakfast I have been eating a small banana forcing myself, because I do not get hungry until about 5 pm, then maybe a tiny snack and something I try to want to eat in the evening? You mention Ice Cream, thank you, I like some ice creams a lot. As far as I remember I ws told I must eat with or before Harvoni and Ribavirin in morning and before Riba in evening. I was told to leave minimum of 9 hours between tablets morning and evening. xx

[mousehold]

I have done all the treatments there are for hep C and in my experience all discomfort is related to the drugs. It is a terrible treatment, don't play it down, try to be brave or listen to people for whom it was 'a breeze'. There are no magic formulas to make it better it is just terrible and completely ubderplayed as far as I am concerned. I wish you luck as it is all worth it in the end ... the problem is getting to the end. People may say I am being alarmist or gloomy but I got really sick of having to pretend I was ok. I was not ok. But I am now - if you see what I mean.

[rickyrocket1 in reply to mousehold]

hi thanks for the reply do you mean the new treatment as well ie harvoni wth the riba also what about cutting the riba out i did 2 lots of interferon back in the day didnt work once and second time couldnt finish it so this is last stop saloon for me just this pain in my lower back liver side r r

[Tatjana]

Just received this by email. Off to my appointment now.

(copied and pasted)

NICE announce criteria for access to Daklinza, Harvoni, Viekirax and Exviera

The National Institute for Health and Care Excellence (NICE) have announced which of the new treatments will be made available by the NHS to people living with hepatitis C. The NICE decisions will widen access to a range of new all-oral, direct acting antiviral treatments beyond those patients with decompensated cirrhosis who were treated from 2014 under the Early Access Scheme, and beyond those with cirrhosis who were given access to new treatments earlier this year.

This is wonderful news for people living with genotype 1 and 4 of the virus. It was less welcome news for many of those with Genotype 3, who still await access to new treatments within the NHS.

The new treatments available are:

Harvoni, a combination of two drugs, ledipasvir and sofosbuvir. It is produced by Gilead.

A combination of two drugs Daklinza, daclatasvir produced by Bristol-Myers Squibb, and Sovaldi, sofosbuvir produced by Gilead.

Viekirax, is a combination of four drugs, ombitasvir, paritaprevir, ritonavir and Exviera (dasabuvir). They are produced by AbbVie.

All those with genotypes 1 and 4, should now be able to access the new non-interferon based treatments with shorter treatment times and less severe side effects.

Some people living with genotype 3, can access Daklinza and Sovaldi. None of the treatments looked at by NICE at this stage are for genotype 2, there are trials taking place for new treatments for this genotype.

The Hepatitis C Trust will continue to push for better treatments for all genotypes.

Patients who meet the criteria stipulated by NICE, now have the right to access these treatments through the NHS. The Hepatitis C Trust urges local commissioners and clinicians to work together through the newly established Organisational Delivery Networks (ODNs) to ensure that patients are given access to these new treatments on the ground as soon as possible.

You can view what criteria gives access to the new treatments by genotype by clicking on the links below:

Genotype 1

Genotype 3

Genotype 4

If you want any support or information on how to access treatment or are having any issues with your hospital, please call our confidential helpline on 0845 223 4424 or 0207 089 6221 or email [e-mail]

[rickyrocket1 in reply to Tatjana]

hi i got the same this mornig what i dont understand is im on the sovaldi daklinza with riba but im genotype 3 a so should i be on this many thanks rr

[rickyrocket1 in reply to Tatjana]

by the way good luck with your app this morning rr

[Bolly in reply to Tatjana]

Good luck with your appointment Tatjana

[art4949 in reply to Tatjana]

This is great news for all of us who have not been treated...hopefully, the NHS will begin rolling out treatment for all HCV patients regardless of whether they have cirrhosis or not. its been a real stressful time wondering when I would have treatment...even with Cirrhosis I have been waiting with no definite date for treatment...now the NHS has to use these new drugs and treat us all.

[art4949]

I hope your appointment goes well, Tatjana...!

[fenderjazz]

Hi Ricky, try to drink plenty of water. Gilead ( manufacturers of Harvoni ) recommend at least 8 glasses a day. I too am on same treatment and was getting a few twinges in my back, probably kidneys complaining a bit. But much improved with lots of water, but you will spend a lot of time going to the loo! Good luck.