Oh man SD! Soooo glad to hear of your first quick UND with this regime!! That is just great!
Thnaks for doing your sig line and sharing more info, that helps for conversing purposes.
48 weeks must have been a long gruelling time, the ledi run must have also been VERY disappointing for you.
I am also sorry for all you have been through, and, what you still had to do to procure your current treatment, at F3 and 3rd (and last!) treatment they should have bent over backward for you. It should not have been so difficult!
Cutting edge does not always cut it - the right/effective drugs are the thing. I am glad they did the resistance testing on you, I am wondering if they did not do any resistance testing on you before.
Here is a fairly recent study (2016), as to good outcomes using only sof/simi for re-treatment of pts. failing prior NS5A based therapies (small numbers of pts. are in this study, but note the stellar results) AND they ONLY had 12 week durations of sof/simi alone!! You got 24 weeks!, plus the added umph of the riba, so this one should be in the bag! Note their sudy did recommend 24 weeks in some cases, which is exactly what you got! Now, this study did focus on 5A dac failures, but 5A's are 5A's (ledi included) . It would appear, based on your resistance report the comments on likely 5A's not recommended for you, that your simi regime is appropriate. Yes, there may have been other regimes that might have worked for you, but thee most important thing is the effectiveness, and your UND at 4 weeks is very telling.
https://www.ncbi.nlm.nih.gov/pubmed/26853230
I am certainly not up on resistance, yours, as listed in the area of 5A (L31/Y93) sound vaguely (commonly) familiar to me from my previous reading. Tig is waaay up on resistance tho.
If you cannot get good attention for your sides from your hep doc, then go (addtionally) to another doc (even a family doc/general practioner you know) who might be able to offer you something to help with the sides. He might even phone consult with your hep doc. The skin issues ... I have no idea if topical 2% hydrocortisone, or some kind of oral antihistimine might help (if you had extreme pruritis or skin discomfort/inflammation), it would have to be a very learned/considered decision to do so, given the HCV meds you are on. Adding any drug to a regime has to be weighed carefully, as they could be contra-indicated. Consult with a doc to seek some relief and ask what is safe/helpful/approved to take, and if you can safely take something or try something for some of your sides.
What are some of the laundry list of sides you have, aside from the photo-sensitivity you mentioned?
Your 4 week UND should be feeling VERY good, even if you are not. Hang in there. C.
Sunnyday said
Feb 8, 2017
Hey Tig & C,
Thanks for the encouragement and helpful suggestions. I'm receiving minimal support from my Doctor with reference to side effects.
These are the lab results for the NS5a Drug Resist test. Daclatasvir Resistance PREDICTED - A Ledipasvir Resistance PREDICTED - Ombitasvir Resistance PREDICTED - Mutations Detected: L31V, Y93H REFERENCE RANGE: HCV NS5a SUBTYPE: NOT DETECTED. Love to hear any light you can shed on those results
I realize this Rx is not cutting edge. It has taken eleven months, two doctors and three appeals to get this approved by my insurance company. Just got some good news yesterday... My four-week lab results show VL UNDETECTED. Feeling grateful to be off to a good start. I'll keep you posted.
Sunny D
-- Edited by Sunnyday on Wednesday 8th of February 2017 04:46:58 PM
Canuck said
Feb 6, 2017
Hi Sunny D,
I'm glad to meet you here, but I am so sorry for the sides you are having.
You may be a newbie to the forum, but you are not a newbie to treatment!
It is unfortunate, your first two attempts with the old regimes had sides, but that you are now also experiencing sides with this round.
I heard a story in 2015, from my hep specialist's facility, about a relapse pt. they had once, same as you, a GT 1a. Pt. had failed multiple goes (and I recall at least one of those goes included int/riba), they finally got him cured on the very same regime as you, sof/sim/riba. The pt. was quite an active advocate for getting people to treatment and so his story was "out there". Needless to say, everyone was pleased with his very good response to this effective regime.
The regime works, and if it is any consolation, this will be your last treatment and the last time you will have sides to deal with. You are already (almost) 25% of the way through!! Hang on, do your best to find ANY relief from the sides by availing yourself on the doc for specific advice/specific treatment (ANY helpful remedies he may be able to give you to assist you) or suggestions he can offer to help lessen some of these sides. As Tig spoke of, and as you probably know, keeping yourself FLOODED with water dilutes the sides quite a bit - very important. And he is right about doing everything you can to protect your skin from ANY aggravation. I implore you to keep in close consult with your doc to see if he can give you anything to assist in combating the sides. We will hope your skin issues may calm, more than they are now, becoming less uncomfortable, when we find the right things to combat it with. (BE SURE to be drinking LOTS of water firstly).
When your skin is upset and complaining, avoid adding ANY fuel to the fire, wear soft cotton, keep bathing to the minimum, cool/tepid/luke-warmish water only, avoid soaps, avoid hot water, try washing less often for min. hygeine only, do not aggravate your skin ANY further with frequent bathing, try not to dry out/strip your own natural skin oils, very gentle not-frequent bathing, only as necessary. You might even try some brief oatmeal tub soaks instead of a regular bath or shower, and washing your hands with big pinches of oatmeal instead of soap. Most people would not be allergic (or react) to a little gentle oatmeal, and some have found a patting wash with wet oatmeal way less aggravating to irritated skin than soaps, and more easily tolerated by upset skin. Big handfuls of softened-up regular rolled oats (by throwing them into a tubful of hot water in advance) for a bath I have found is good, just let the oatmeal steep in the hot tub water, when the tub water has cooled to lukewarm/tepid, then get in for a bath, or, for a problem area, say your arms are irritated, try wet softened or cooked oatmeal applied to a problem area as a wet "washcloth bag" of soothing skin poultice, just be sure to rinse bits/residue remaining on your skin off a little bit after a bath, and pat dry gently. You can experiment with different regular sized rolled oats and/or finer ground oatmeal, pre-cooked, pre-wetted, or dry and just wetted as you are washing with water. It IS messy stuff in the tub or sink, but I have done it and found it a soothing rx to the skin, I found it gentle enough for my face. Keep a strainer in the bathroom to collect some of the oatmeal before you pull the plug, it can clog up your drains! Careful with shampooing your hair too, minimize washing your scalp too much and pick something extremely gentle (likely baby stuff). Be wary of skin creams too, unless very inert, or are actually scripts from your doc or recommended by your doc. He might actually be able to rx you some different things to try, oral or topical, to aid in relieving your skin discomfort.
I have the same curiosities as Tig as far as your past treatment timelines, RAS/RAV testing, and, whether you are in North America? I cannot recall, off hand, anyone here recently being on sof/sim/riba. But I could well be wrong about that.
The triplet I did was brand new, but I too had a NS3/4A included in my triplet like you - except mine was "vox" and yours is simi - I have a feeling all the NS3/4A's can be a little hard on the system to take - but as a "generality", I really don't know this, for a fact. But, I have heard similar about simi, that it holds side potential, and, we all know some people do have a tough time with riba. Yet others on similar regimes to one another can have such different experiences with sides, some don't feel a thing or it is very mild for them, and the next person on the very same thing suffers sides! I hope some of your sides will lessen/become more tolerable.
Please keep us posted. C.
Tig said
Feb 5, 2017
Hi SD,
Welcome to the forum! I'm glad you found us. I moved your post to the New Members section, in case you were wondering.
I'm sorry you're having these side effects. It's no wonder you're having photosensitivity problems! Olysio and Ribavirin both cause that. I had a terrible time with Ribavirin and burned my scalp to the point of blisters. Be sure to avoid it, wear sunscreen when you have to go out, good UV protected sunglasses and a hat. I was burned through a full head of hair, so don't rely on hair to stop it!
Please set up your signature so we can have a quick reference to your history. I'm curious about your last treatments too. Did they test your RAS-RAV status before starting this time? If you had anything present, share it if you like. It helps us when replying. Most of us have set that up, if you need an example. Go to your Profile if you decide to.
Your treatment is going to present you with more side effects than Harvoni or Epclua would have. Olysio and Riba are known to cause some skin sensitivities, fatigue and anemia. Then you have the Sovaldi thrown in as another powerful weapon. Some days are going to be better than others, but you'll succeed, just stick it out.
It's imperative to keep well hydrated, at least one gallon of water daily, not a drop less! Water alone will reduce the side effects. Maintain a balanced diet and rest when your body needs it.
It seems like the finish line is a long way off, but it will go by quickly. Stay compliant and you'll be celebrating before you know it!
I have genotype 1a and have relapsed twice. My new treatment is 24 weeks of Sovaldi, Olysio, and Ribavirin. I'm on week five with a laundry list of side effects. Photosensitivity is probably at the top of the pile. This is proving to be more challenging than pegylated interferon/ribavirin. Has anyone been down this path? Any input would be appreciated.
Oh man SD! Soooo glad to hear of your first quick UND with this regime!! That is just great!
Thnaks for doing your sig line and sharing more info, that helps for conversing purposes.
48 weeks must have been a long gruelling time, the ledi run must have also been VERY disappointing for you.
I am also sorry for all you have been through, and, what you still had to do to procure your current treatment, at F3 and 3rd (and last!) treatment they should have bent over backward for you. It should not have been so difficult!
Cutting edge does not always cut it - the right/effective drugs are the thing. I am glad they did the resistance testing on you, I am wondering if they did not do any resistance testing on you before.
Here is a fairly recent study (2016), as to good outcomes using only sof/simi for re-treatment of pts. failing prior NS5A based therapies (small numbers of pts. are in this study, but note the stellar results) AND they ONLY had 12 week durations of sof/simi alone!! You got 24 weeks!, plus the added umph of the riba, so this one should be in the bag! Note their sudy did recommend 24 weeks in some cases, which is exactly what you got! Now, this study did focus on 5A dac failures, but 5A's are 5A's (ledi included) . It would appear, based on your resistance report the comments on likely 5A's not recommended for you, that your simi regime is appropriate. Yes, there may have been other regimes that might have worked for you, but thee most important thing is the effectiveness, and your UND at 4 weeks is very telling.
https://www.ncbi.nlm.nih.gov/pubmed/26853230
I am certainly not up on resistance, yours, as listed in the area of 5A (L31/Y93) sound vaguely (commonly) familiar to me from my previous reading. Tig is waaay up on resistance tho.
If you cannot get good attention for your sides from your hep doc, then go (addtionally) to another doc (even a family doc/general practioner you know) who might be able to offer you something to help with the sides. He might even phone consult with your hep doc. The skin issues ... I have no idea if topical 2% hydrocortisone, or some kind of oral antihistimine might help (if you had extreme pruritis or skin discomfort/inflammation), it would have to be a very learned/considered decision to do so, given the HCV meds you are on. Adding any drug to a regime has to be weighed carefully, as they could be contra-indicated. Consult with a doc to seek some relief and ask what is safe/helpful/approved to take, and if you can safely take something or try something for some of your sides.
What are some of the laundry list of sides you have, aside from the photo-sensitivity you mentioned?
Your 4 week UND should be feeling VERY good, even if you are not. Hang in there.
C.
Hey Tig & C,
Thanks for the encouragement and helpful suggestions. I'm receiving minimal support from my Doctor with reference to side effects.
These are the lab results for the NS5a Drug Resist test. Daclatasvir Resistance PREDICTED - A Ledipasvir Resistance PREDICTED - Ombitasvir Resistance PREDICTED - Mutations Detected: L31V, Y93H REFERENCE RANGE: HCV NS5a SUBTYPE: NOT DETECTED. Love to hear any light you can shed on those results
I realize this Rx is not cutting edge. It has taken eleven months, two doctors and three appeals to get this approved by my insurance company. Just got some good news yesterday... My four-week lab results show VL UNDETECTED. Feeling grateful to be off to a good start. I'll keep you posted.
Sunny D
-- Edited by Sunnyday on Wednesday 8th of February 2017 04:46:58 PM
Hi Sunny D,
I'm glad to meet you here, but I am so sorry for the sides you are having.
You may be a newbie to the forum, but you are not a newbie to treatment!
It is unfortunate, your first two attempts with the old regimes had sides, but that you are now also experiencing sides with this round.
I heard a story in 2015, from my hep specialist's facility, about a relapse pt. they had once, same as you, a GT 1a. Pt. had failed multiple goes (and I recall at least one of those goes included int/riba), they finally got him cured on the very same regime as you, sof/sim/riba. The pt. was quite an active advocate for getting people to treatment and so his story was "out there". Needless to say, everyone was pleased with his very good response to this effective regime.
The regime works, and if it is any consolation, this will be your last treatment and the last time you will have sides to deal with. You are already (almost) 25% of the way through!! Hang on, do your best to find ANY relief from the sides by availing yourself on the doc for specific advice/specific treatment (ANY helpful remedies he may be able to give you to assist you) or suggestions he can offer to help lessen some of these sides. As Tig spoke of, and as you probably know, keeping yourself FLOODED with water dilutes the sides quite a bit - very important. And he is right about doing everything you can to protect your skin from ANY aggravation. I implore you to keep in close consult with your doc to see if he can give you anything to assist in combating the sides. We will hope your skin issues may calm, more than they are now, becoming less uncomfortable, when we find the right things to combat it with. (BE SURE to be drinking LOTS of water firstly).
When your skin is upset and complaining, avoid adding ANY fuel to the fire, wear soft cotton, keep bathing to the minimum, cool/tepid/luke-warmish water only, avoid soaps, avoid hot water, try washing less often for min. hygeine only, do not aggravate your skin ANY further with frequent bathing, try not to dry out/strip your own natural skin oils, very gentle not-frequent bathing, only as necessary. You might even try some brief oatmeal tub soaks instead of a regular bath or shower, and washing your hands with big pinches of oatmeal instead of soap. Most people would not be allergic (or react) to a little gentle oatmeal, and some have found a patting wash with wet oatmeal way less aggravating to irritated skin than soaps, and more easily tolerated by upset skin. Big handfuls of softened-up regular rolled oats (by throwing them into a tubful of hot water in advance) for a bath I have found is good, just let the oatmeal steep in the hot tub water, when the tub water has cooled to lukewarm/tepid, then get in for a bath, or, for a problem area, say your arms are irritated, try wet softened or cooked oatmeal applied to a problem area as a wet "washcloth bag" of soothing skin poultice, just be sure to rinse bits/residue remaining on your skin off a little bit after a bath, and pat dry gently. You can experiment with different regular sized rolled oats and/or finer ground oatmeal, pre-cooked, pre-wetted, or dry and just wetted as you are washing with water. It IS messy stuff in the tub or sink, but I have done it and found it a soothing rx to the skin, I found it gentle enough for my face. Keep a strainer in the bathroom to collect some of the oatmeal before you pull the plug, it can clog up your drains! Careful with shampooing your hair too, minimize washing your scalp too much and pick something extremely gentle (likely baby stuff). Be wary of skin creams too, unless very inert, or are actually scripts from your doc or recommended by your doc. He might actually be able to rx you some different things to try, oral or topical, to aid in relieving your skin discomfort.
I have the same curiosities as Tig as far as your past treatment timelines, RAS/RAV testing, and, whether you are in North America? I cannot recall, off hand, anyone here recently being on sof/sim/riba. But I could well be wrong about that.
The triplet I did was brand new, but I too had a NS3/4A included in my triplet like you - except mine was "vox" and yours is simi - I have a feeling all the NS3/4A's can be a little hard on the system to take - but as a "generality", I really don't know this, for a fact. But, I have heard similar about simi, that it holds side potential, and, we all know some people do have a tough time with riba. Yet others on similar regimes to one another can have such different experiences with sides, some don't feel a thing or it is very mild for them, and the next person on the very same thing suffers sides! I hope some of your sides will lessen/become more tolerable.
Please keep us posted.
C.
Hi SD,
Welcome to the forum! I'm glad you found us. I moved your post to the New Members section, in case you were wondering.
I'm sorry you're having these side effects. It's no wonder you're having photosensitivity problems! Olysio and Ribavirin both cause that. I had a terrible time with Ribavirin and burned my scalp to the point of blisters. Be sure to avoid it, wear sunscreen when you have to go out, good UV protected sunglasses and a hat. I was burned through a full head of hair, so don't rely on hair to stop it!
Please set up your signature so we can have a quick reference to your history. I'm curious about your last treatments too. Did they test your RAS-RAV status before starting this time? If you had anything present, share it if you like. It helps us when replying. Most of us have set that up, if you need an example. Go to your Profile if you decide to.
Your treatment is going to present you with more side effects than Harvoni or Epclua would have. Olysio and Riba are known to cause some skin sensitivities, fatigue and anemia. Then you have the Sovaldi thrown in as another powerful weapon. Some days are going to be better than others, but you'll succeed, just stick it out.
It's imperative to keep well hydrated, at least one gallon of water daily, not a drop less! Water alone will reduce the side effects. Maintain a balanced diet and rest when your body needs it.
It seems like the finish line is a long way off, but it will go by quickly. Stay compliant and you'll be celebrating before you know it!
Heres some reading material: Sov/Oly/Riba
Greeting,
I'm a newbie to this forum.
I have genotype 1a and have relapsed twice. My new treatment is 24 weeks of Sovaldi, Olysio, and Ribavirin. I'm on week five with a laundry list of side effects. Photosensitivity is probably at the top of the pile. This is proving to be more challenging than pegylated interferon/ribavirin. Has anyone been down this path? Any input would be appreciated.
Sunnyday