K8 I am in Spring Texas and when they were going to start my first treatment I held off until October just because of the weather here.
Redhead: Check
Riba: Check
Texas Sun: Check
Miserable!: Check
Yup no fun for sure and then to top it off, it didn't work!
That reduction and three weeks left will really make a difference on how you feel. Hang in there Sis!
Tig said
Jun 23, 2016
Hi K8,
You should notice a difference after reducing the Riba, might take a week, but you should feel better and the side effects won't be so prominent. Most often the benefit comes by way of increased hemoglobin or at the very least, it won't drop any further. The anemia caused by it is often the hardest to navigate.
I remember the summer heat in TX and you're doing the right thing by avoiding it. Never in my life have I ever seen an asphalt parking lot burn your feet right through your shoes! Heat and Ribavirin are not a good mix, but I'm not telling you anything, ha! Stay cool and stay hydrated.
Hard to believe you only have 3 weeks remaining. Where has the time gone? That's the hard thing to believe for many when they're preparing to start. Telling someone that the time will go by quickly is easier to say than accept, but see, it is going by and you're doing so well too. It's well worth all the hard work and effort you're putting into it too, but you know that. Won't be long and you'll be saying "had HCV", not "have HCV"! You're almost there!
Let us know when you hear something on your blood work. I suspect it's going to be great! Good luck
K8 said
Jun 23, 2016
Oh my gosh,
reading your emails make me feed so good. You do know what it is like and thank you, thank you.
I saw the DOC today and he did more than I expected. He reduced the Riba from 1000 to 600 mg. And only 3 more weeks to go.
The light at the end of the tunnel is visible. I feel better just knowing I don't have to take 5 pills of RIBA starting tonite. It is very hot in TX and I am finding it difficult to be outside (and breathe) even just going from air conditioned place to air-conditioned place.
The lower dosage will really help and I am staying in a as much as possible which is really interesting. I am usually a gal who is out and about town. I now try to limit my social activities including going to the store etc to 5 or 6 hours. Fun to say no, I can't do that - hmmmmm, embracing more and feeling a lot more courageous because of your support
Gracias, blood work done today, so I will keep you posted and hope I can be encouraging to others as you have been for me. Blessings
Loopy Lisa said
Jun 20, 2016
Riba is a complete nasty little bugger that does a very effective job. It is not whinging, it is feeling the effects of the medications, and that is what we are all here for, when you have a low point. Sometimes, I think a good cry is good for relieving frustration and getting out all the stress, it is hard to stay strong when you feel a little under the weather sometimes. I am giving you a large cyber hug and gently push you forward as you are near the end. You have done amazing, and think you have nearly completed this journey, and we are all rooting for you!
Shadowfax said
Jun 20, 2016
Hang in and yes, have that blood work ordered on Thursday so changes may be made if required. You are almost there. Yes you can and will do this.
my Sof/dak/RIBA combo finished in March. I did another 12 weeks with just the first two as RIBA was a sledge hammer for me. I completely understand how tired, achey, depressed and helpless you feel. Funny also that it all comes to the fore when you are messed around by medical staff. I developed a total phobia about the hospital where I did my treatment.
I hope it helps to hear that the worst of those RIBA symptoms do ebb away quite quickly. There's something still hanging around but it's a hundred times better for me now than it was back then. Hopefully too, it is an effective treatment - concentrate on how it will feel to be viral free.
Your haemoglobin levels shouldn't be allowed to drop too low so I hope you do get to see someone on Thursday and that he/she will lessen the RIBA dose if that's what's needed.
We are all here with you.
Syd
ps. I'm not purposefully capitalising RIBA - it does it all by itself!!!!
Canuck said
Jun 20, 2016
Oh K8,
I am SO sorry for how you are feeling - you have my complete sympathy. Horrid symptoms that are SO not fair. I get your conflict, being grateful for the drugs and being und by 5 weeks, but having to deal with these really nasty effects (yet again). How I wish people did NOT HAVE TO DO riba. But, it does work. Sympathy does not help, I know, but I SENSE YOU ARE a much stronger person (than how you are feeling right now) and that you ARE stronger than the riba and this virus. Riba and C WILL be NOTHING but past bad memories, that will fade in time, you WILL trump all of this, and you will have the rest of your life to finally live free in reward!
In "desperation sobs" are a part of this, but you are already knowing, clearly, it is riba and NOT you that is the fault here - YOU are your own best strong and kind friend who WILL get you through this by enlisting every thing and thought, that you have learned prior, on how to cope yourself through this, minute by minute, and day by day as necessary. Under the circumstances, sobs are definitely reasonable, understandable and justifiable, given this trial, and unfortunately dodging/avoiding all the cruelties of riba is difficult if not impossible to avoid. No wonder you lost it when they postponed your appointment with the doc!! Steal yourself in any way you can until next Thurs. Carry on the rational talks you are having to have with yourself, this riba b**tch really is your cruellest best friend. I don't know her, but I hate her too.
You must be on another thread, I won't look for it all, at this very moment, but I do wonder HOW your labs ARE doing (and have been doing), platelets/hgb?? - you were hoping for a reduction ... from what dose of rib to what dose of rib? Do you think that will happen?
Pull out all your arsenal dear. Arm yourself with what you are already doing and know may help, your doc, us, your friends, family and these logical talks you are trying to have with yourself. Some people will never know what "hard" is, until you have had no choice but to endure peg or riba based treatments. I really wish riba, even though it obviously works, would go by the way of the dodo bird, in favour of other less potentially harsh treatment regimes.
Try what you know helps, and hang on, until Thurs and talk with doc. So sorry for you troubles. C.
K8 said
Jun 19, 2016
so I was counting on seeing my liver Dr last thurs in great hopes that he may lower the RIBA the appt was cancelled and I sobbed for a 1/2 hour! I see Dr this thurs which according to my calculations is one month until EOT
TX is 3 months long, started 4/25. I was undetectable at 5 weeks, next blood test on thurs. I become so weary & a state of inertia is something else. All very familiar from last time when I was on PEG/RIBA
Whining today - thirst is constant, irritable frequently, tideous thinking of myself & my treatment. hungry constantly and having to sit down after going up the steps, hard to imagine that I will be walking my favorite 4 or 5 miles again
Reminding myself that this is not me, but the drugs.
Grateful: undetectable, one more month tx, support of my friends & family, forum & the gift of having these drugs available, happy that I have appetite, grateful to be alive & trying to embrace this time!
K8 I am in Spring Texas and when they were going to start my first treatment I held off until October just because of the weather here.
Redhead: Check
Riba: Check
Texas Sun: Check
Miserable!: Check
Yup no fun for sure and then to top it off, it didn't work!
That reduction and three weeks left will really make a difference on how you feel. Hang in there Sis!
Hi K8,
You should notice a difference after reducing the Riba, might take a week, but you should feel better and the side effects won't be so prominent. Most often the benefit comes by way of increased hemoglobin or at the very least, it won't drop any further. The anemia caused by it is often the hardest to navigate.
I remember the summer heat in TX and you're doing the right thing by avoiding it. Never in my life have I ever seen an asphalt parking lot burn your feet right through your shoes! Heat and Ribavirin are not a good mix, but I'm not telling you anything, ha! Stay cool and stay hydrated.
Hard to believe you only have 3 weeks remaining. Where has the time gone? That's the hard thing to believe for many when they're preparing to start. Telling someone that the time will go by quickly is easier to say than accept, but see, it is going by and you're doing so well too. It's well worth all the hard work and effort you're putting into it too, but you know that. Won't be long and you'll be saying "had HCV", not "have HCV"! You're almost there!
Let us know when you hear something on your blood work. I suspect it's going to be great! Good luck
Oh my gosh,
reading your emails make me feed so good. You do know what it is like and thank you, thank you.
I saw the DOC today and he did more than I expected. He reduced the Riba from 1000 to 600 mg. And only 3 more weeks to go.
The light at the end of the tunnel is visible. I feel better just knowing I don't have to take 5 pills of RIBA starting tonite.
It is very hot in TX and I am finding it difficult to be outside (and breathe) even just going from air conditioned place to air-conditioned place.
The lower dosage will really help and I am staying in a as much as possible which is really interesting. I am usually a gal who is out and about town. I now try to limit my social activities including going to the store etc to 5 or 6 hours.
Fun to say no, I can't do that - hmmmmm, embracing more and feeling a lot more courageous because of your support
Gracias, blood work done today, so I will keep you posted and hope I can be encouraging to others as you have been for me.
Blessings
Riba is a complete nasty little bugger that does a very effective job. It is not whinging, it is feeling the effects of the medications, and that is what we are all here for, when you have a low point. Sometimes, I think a good cry is good for relieving frustration and getting out all the stress, it is hard to stay strong when you feel a little under the weather sometimes. I am giving you a large cyber hug and gently push you forward as you are near the end. You have done amazing, and think you have nearly completed this journey, and we are all rooting for you!
Hang in and yes, have that blood work ordered on Thursday so changes may be made if required. You are almost there. Yes you can and will do this.
SF
Yes you can K8!
Hi K8,
my Sof/dak/RIBA combo finished in March. I did another 12 weeks with just the first two as RIBA was a sledge hammer for me. I completely understand how tired, achey, depressed and helpless you feel. Funny also that it all comes to the fore when you are messed around by medical staff. I developed a total phobia about the hospital where I did my treatment.
I hope it helps to hear that the worst of those RIBA symptoms do ebb away quite quickly. There's something still hanging around but it's a hundred times better for me now than it was back then. Hopefully too, it is an effective treatment - concentrate on how it will feel to be viral free.
Your haemoglobin levels shouldn't be allowed to drop too low so I hope you do get to see someone on Thursday and that he/she will lessen the RIBA dose if that's what's needed.
We are all here with you.
Syd
ps. I'm not purposefully capitalising RIBA - it does it all by itself!!!!
Oh K8,
I am SO sorry for how you are feeling - you have my complete sympathy. Horrid symptoms that are SO not fair. I get your conflict, being grateful for the drugs and being und by 5 weeks, but having to deal with these really nasty effects (yet again). How I wish people did NOT HAVE TO DO riba. But, it does work. Sympathy does not help, I know, but I SENSE YOU ARE a much stronger person (than how you are feeling right now) and that you ARE stronger than the riba and this virus. Riba and C WILL be NOTHING but past bad memories, that will fade in time, you WILL trump all of this, and you will have the rest of your life to finally live free in reward!
In "desperation sobs" are a part of this, but you are already knowing, clearly, it is riba and NOT you that is the fault here - YOU are your own best strong and kind friend who WILL get you through this by enlisting every thing and thought, that you have learned prior, on how to cope yourself through this, minute by minute, and day by day as necessary. Under the circumstances, sobs are definitely reasonable, understandable and justifiable, given this trial, and unfortunately dodging/avoiding all the cruelties of riba is difficult if not impossible to avoid. No wonder you lost it when they postponed your appointment with the doc!! Steal yourself in any way you can until next Thurs. Carry on the rational talks you are having to have with yourself, this riba b**tch really is your cruellest best friend. I don't know her, but I hate her too.
You must be on another thread, I won't look for it all, at this very moment, but I do wonder HOW your labs ARE doing (and have been doing), platelets/hgb?? - you were hoping for a reduction ... from what dose of rib to what dose of rib? Do you think that will happen?
Pull out all your arsenal dear. Arm yourself with what you are already doing and know may help, your doc, us, your friends, family and these logical talks you are trying to have with yourself. Some people will never know what "hard" is, until you have had no choice but to endure peg or riba based treatments. I really wish riba, even though it obviously works, would go by the way of the dodo bird, in favour of other less potentially harsh treatment regimes.
Try what you know helps, and hang on, until Thurs and talk with doc. So sorry for you troubles. C.
so I was counting on seeing my liver Dr last thurs in great hopes that he may lower the RIBA the appt was cancelled and I sobbed for a 1/2 hour! I see Dr this thurs which according to my calculations is one month until EOT
TX is 3 months long, started 4/25. I was undetectable at 5 weeks, next blood test on thurs. I become so weary & a state of inertia is something else. All very familiar from last time when I was on PEG/RIBA
Whining today - thirst is constant, irritable frequently, tideous thinking of myself & my treatment. hungry constantly and having to sit down after going up the steps, hard to imagine that I will be walking my favorite 4 or 5 miles again
Reminding myself that this is not me, but the drugs.
Grateful: undetectable, one more month tx, support of my friends & family, forum & the gift of having these drugs available, happy that I have appetite, grateful to be alive & trying to embrace this time!
whew thanks for listening. I know you understand.