Hep C Discussion Forum

Tig · Admin

RE: First injection today !!!

Paul B · Senior Member

Had injection #4 last night. As usual, not much in the way of symptoms. Have lost much of my energy, my elbow joints are a bit sore, some stomach discomfort, changed bowel habit and a bit flu like. Much of the time I would not even know I was on meds at all.

Anyhow, my nurse seems to think that will change when Victrelis is added next week. I am hoping that the impact will be less severe than what she seems to think. Is it going to be crap for certain ? Or is there a chance that I may continue to sail through ?

Paul B · Senior Member

pizzacake wrote:
I'm jumping in here because tonight (West Coast US) is also my first injection. I haven't given myself the injection yet though because I lost the instructions and I need to look them up on the Merck site. As I was looking for them I got distracted and thought I would check in with you all first.
All of your comments here are very informative. And I'm encouraged that you are feeling better, Paul, than the previous tx. I hope you continue to post your experience because I want to read more.
Not being able to run will also be frustrating for me. On the other hand I'm very grateful I don't have to do this treatment for a year like the 'old' days. I can always exercise later.
Paul, have you experienced any appetite loss?

Hey Pizza... hope your injection went well, first one is always the toughest.

I will be posting here for the duration of tx... about 48 weeks My appetite has not changed. Though I am consciously eating less as my exercise regime is virtually non existent at the moment.

pizzacake · Veteran Member

I'm jumping in here because tonight (West Coast US) is also my first injection. I haven't given myself the injection yet though because I lost the instructions and I need to look them up on the Merck site. As I was looking for them I got distracted and thought I would check in with you all first.

All of your comments here are very informative. And I'm encouraged that you are feeling better, Paul, than the previous tx. I hope you continue to post your experience because I want to read more.

Not being able to run will also be frustrating for me. On the other hand I'm very grateful I don't have to do this treatment for a year like the 'old' days. I can always exercise later.

Paul, have you experienced any appetite loss?

Paul B · Senior Member

So got my blood results today from what was taken prior to tx. My platelets have risen since my last test from 153 and my VL seems low ... though I am not sure. Anyhow... thinking positive !!

Next is the 4 week test.

Platelets : 171

HB: 174

Neutrophils: 2.5

ALT: 95

VL: 106,000 IU/mL

Viral Log value 5.02

-- Edited by Paul B on Tuesday 24th of June 2014 12:24:38 PM

mallani · Guru

Hi Paul,

You need to keep a log of your lab. values, particularly the Platelets, Hb, Neutrophils, ALT and of course your VL. I hope you had a VL before starting Rx- otherwise it's just guesswork. Cheers.

Paul B · Senior Member

Interesting business this Hep C. I am quite the medical researcher these days !

I am guessing that the Int/Rib that I am currently on would potentially be enough to clear the virus on its own (as it has for many in the past). The addition of Victrelis would then be the knockout blow.

So tomorrow I go in for my first test since starting tx (2 weeks ago). Will be interested in what my baseline readings are.

Other than a temperature increase and mild flu like symptoms for a few hours, a bit of a stomach upset, still hardly any symptoms. Having said that, I am feeling a bit weak and totally not motivated for exercise.

mallani · Guru

Hi Paul,

I managed to continue golf until the Victrelis hit at week 5. I has a CBC every 2 weeks until week 12. Starting Hb was 161, after 2 weeks 136, after 4 weeks 104 after 6 weeks 94, after 8 weeks 81. ( For our US friends, we use g/L over here). Try to do as much as you can, as I didn't push myself enough and ended up with profound muscle wasting. I'm happy to say, it's back to normal.

Older cirrhotics have a more severe anaemia, and feel the Sx more. Hopefully you will do better than me. Cheers.

Tig · Admin

Hi Paul,

Good advice fromJill! This Tx does indeed take it out of you and the drop in RBC's will definitely cause extreme fatigue and shortness of breath. My hat's off to you for your workout, even a small bit will help keep you fit and reduce the muscle loss. Concentrate on ridding yourself of the virus and maintain a slow, abbreviated exercise regimen, regardless of length and your body will benefit from it. There will be time in the future for your 200 Km rides, but now your energy needs to be on treatment. Have you discussed a routine with a trainer? They might have some good ideas to keep you fit during the weeks to come. Every little bit helps and once Tx is complete, I found the energy returns fairly quickly but you'll have to pace your return to avoid injury. The desire comes back fast, so you will never lose your desire! Good luck Paul...

Tig

Cinnamon Girl · Guru

Hi Paul, it must have felt good to get out on your bike again even though you found it hard going. It`s surprising how quickly the effects of the drugs do take their toll on our energy levels, and during treatment with peg/riba most people find they have to cut back on their normal exercise routines. Getting short of breath is a common side effect and I`m sure you`re right that the riba is reducing your RBC and Hgb levels. The best thing is to do what you can without making yourself overtired, a little exercise is always beneficial and it`s good to keep some muscle tone up.

Don`t worry though, your motivation will come back once your treatment is over I`m sure, and you`ll soon build up your strength again. It doesn`t hurt to push yourself a little but don`t overdo it!

Paul B · Senior Member

Went for my first bike ride today in three weeks. I had stopped just before I started tx as I had been pushing pretty hard and felt I had just gone over the edge. With the way my body has felt, it was always like I was on a knife edged and could stop cycling at any moment... in the end that is what happened.

Having said that, I was going pretty hard. 300kms per week average with many rides exceeding 100ks and even a 200km ride recently. On that particular week I clocked up 600kms. So most rides are 3-4 hours at hard pace.

So since tx began I have limited myself to about 3 half hour walks per week and a couple of very short weight sessions. Just something to maintain some level of fitness. I have intended to get back on the bike for some short sessions but have struggled to get motivated. Anyhow, today I finally got out there... and it was tough. I had no intention of going at my usual pace... hard take no prisoners. My intention was to take it easy but enough for it to be a half decent workout. And that is how I did it... but boy, it was tough. It was only 33 minutes and 15 kms but it felt like a challenge. The biggest issue was shortness of breath. And I got a stitch after only 5 kms. Can't believe I would have lost that much fitness in such a short time frame. Can only imagine it was due to the medication reducing my red blood cell count. Hope so anyway. At this rate, 48 weeks of tx is going to send me back to square one and I don't know if I would have the motivation to get back to where I was.

Cinnamon Girl · Guru

Hi Paul, you`ve got off to a very good start by the sounds of it, and you must really notice the difference from your past experiences with the old non-peg interferon! Most people find the first shot is the worst one for side effects and you`ve got over that with minimal discomfort.

Best of luck, and keep us posted...

Paul B · Senior Member

Day three and no sx, aside from a mild temp for a few hours on night one. I actually don't feel like I am on any tx full stop. Quite surprising given what I went through with previous attempts.

Tig · Admin

I agree that one of the hardest parts of the Victrelis protocol was the pill burden and having to pay strict attention to the dosing times and eating properly. It was such a relief after treatment ended to not have that constant demand. I found it a requirement to set alarms and keep accurate records of what I had taken a when. The days when my memory was at it's worst, I was glad that I had kept notes because there were times I wondered if I had already taken them or not. I found separating them by dose to be helpful, so I could easily see what I had taken and what was next. I had taken a dose of Riba and wondered immediately if I had actually taken them or was I thinking I had! These drugs really play with your mind!

Tig

mallani · Guru

Hi Paul,

The PegInterferon is much more effective than the old 3x weekly ones we did. The blood level is constant instead of going up and down. If you're really lucky you might be Undetected after the 4 week leadin. Then you probably don't need the Victrelis! Cheers.

Paul B · Senior Member

hrsetrdr wrote:
Hi Paul,

Good luck with the Peg Int, Rib, Vic triple tx, I see that you're no stranger to the Peg Int injections; I'm a bit surprised to see new Peg Int, Rib, Vic tx patients, as the 'oral only' treatments are the hot item these days.

No stranger to Int but not the Peg variety. My past two treatments were pre Peg, so I am hopeful that the new variety will work better. And of course, with Victrelis to come at week 4... assuming the numbers are working. Here in Australia, the new treatments have yet to be approved. However, my clinic nurse advised me that I am a priority case and that if tx fails, I will be high on the list for the new therapies. She suggested that while they may not be approved, there is the chance that the drug companies will release limited amounts through for special cases ahead of any official approval. So really, it is all positive at the moment.

-- Edited by Paul B on Wednesday 11th of June 2014 05:26:22 AM

hrsetrdr · Guru

Hi Paul,

Good luck with the Peg Int, Rib, Vic triple tx, I see that you're no stranger to the Peg Int injections; I'm a bit surprised to see new Peg Int, Rib, Vic tx patients, as the 'oral only' treatments are the hot item these days.

TazKat · Senior Member

Good luck... I got about 5 1/2 weeks b4 they tell me anything. & to me that has been pretty hard besides the dang meds.. but we are cheering for you!! smile

Isiscat2011 · Guru

Paul B wrote:
Will not know my viral load till my next appointment in a couple of weeks. At this time however, my ALT is elevated and my platelets are a bit low apparently (153). I know very little about the range so 153 while it may be low may not be too bad a base level to start. Anyone care to comment ? I know they will go lower as treatment continues, but does 153 give me much wiggle room ?

153 is actually considered within normal range although it is just on the border. Interferon is well know for decreasing platelets but this doesn't happen to everyone. Mine started at >200 and dropped to <50. Your doc has some handy tricks up his sleeve for combating low platelets, such as reducing Interferon dosage, prescribing medication, or even giving platelet transfusions, so there is nothing to stress about at this point. Platelets can actually drop to around 10 before the condition becomes potentially life threatening. Just keep a good eye on them. If they do get low talk to your doc and remember not to make any fast moves or play with knives. :)

Paul B · Senior Member

Yep... alarms set on my smartphone. Determined to never miss a dose !! So the morning after the first day of treatment and how different to 1998 when I did the non peg Int/Rib. On that occasion I recall being as sick as a dog after every injection (3 times a week). This time could not be more different. I went to bet 10 hours after the injection and symptoms had been evident over about 2 hours. Forehead temp was up and body was a bit cold, plus a moderate headache. I went to bed, fell asleep, woke up a few hours later and temperature had normalised !!! I have felt much worse than this on the rare occasion I have had the flu. So essentially, the side effects were minimal compared to my past experience.

I am very surprised... and very grateful that I did not have to experience the unpleasantness that I know is so prevalent with this treatment. Hopefully, as I get further in, my experience will continue to be favorable, though I realise that it is likely that I am not going to sail through this as easily as last night.

Will not know my viral load till my next appointment in a couple of weeks. At this time however, my ALT is elevated and my platelets are a bit low apparently (153). I know very little about the range so 153 while it may be low may not be too bad a base level to start. Anyone care to comment ? I know they will go lower as treatment continues, but does 153 give me much wiggle room ?

Feeling blessed to be on the road to recovery !!!

Tig · Admin

Hi Paul,

Everyone has described things very well. I was on the same treatment as you and Malcolm is right, it can get difficult. My suggestion is something most here have done, that is to set alarms for all of your medication times. I used my smartphone and it worked very well. It's absolutely vital that you don't miss a dose and you want to take them on time as well. Funny thing, I set my alarm to sound like a cricket and to this day when I hear a cricket, I reach for my phone! I hate crickets now and hearing them, makes me feel like I need to do something!

If there is anything we can help you with, please don't hesitate to say the word. We're here for you Paul and really can relate to what you're going through. Eat a healthy diet, hydrate well and you should do fine. Make sure when you start the Victrelis that you have food available, because they do recommend you take it with a snack or a meal. Also, like Interferon, they recommend you keep Victrelis refrigerated. Good luck!

Tig

mallani · Guru

Hi Paul,

The action of Interferon and Ribavirin is still not fully understood. They attack the virus on several fronts, stimulating the immune response, preventing the entry into cells, preventing the use of hepatocyte tissue and interfering with the replication path. You will be getting a VL done after the leadin and the hope is to see at least a 2 log drop in VL. Trials have shown Victrelis (Boceprevir) is most effective on a lower VL. The ideal result is to be Undetected after 4 weeks of Victrelis (i.e. after 8 weeks of Rx). Some patients take longer. As the VL drops, the liver inflammation decreases, and the enzymes levels ( like ALT) drop. The standard VL tests for the Victrelis triple are 4, 8, 12 and 24 weeks. Let us know how you go. The blood counts are done with the VL tests or more frequently if required. You will develop anaemia and your platelets and neutrophils will drop. The degree of anaemia and the other drops vary from person to person. Good luck and don't forget to take the pills on time- it gets hard .

Paul B · Senior Member

So what is happening inside my liver now ? I imagine that the nasty little Hep C virons who have been having a wow of a time destroying the liver will suddenly be under attack and losing ability to wreak their havoc. With the Victrellis to follow landing the killer blow by blocking the ability to replicate. Reasonably accurate metaphor ?

Loopy Lisa · Guru

Hi Paul,

Good luck, my first injection was nerve wracking and nothing happened. A few people on here also had no reaction as well. I did get red marks on the injection site and those took weeks to disappear, but they do eventually. Eat well, drink plenty of water and relax as much as possible. :)

Cinnamon Girl · Guru

Well done, Paul!! Taking the first shot is always a bit nerve wracking!

It`s not the same for everyone but you might find you develop some `flu like` symptoms over the next few hours so best be prepared for that with some pain relief pills just in case. Drinking plenty of water also helps with the side effects, keep yourself well hydrated.

Take it easy and let us know how it goes...you`re on your way now so best of luck!! biggrin

Paul B · Senior Member

So I just had my first shot of Interferon. Rib tonight and hopefully Boceprivir in 4 weeks time.

-- Edited by Paul B on Tuesday 10th of June 2014 07:53:59 AM

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