Aa
Stopping at week 36
Hi, I can't do it any more. 24 weeks of Pegasys and Ribavirin and Gilead GS5885 and Gilead 9451. Didn't UND until week 6 which according to the trial protocols means I must continue Pegasys and Ribavirin for another 24 weeks. Now at Week 36. Still UND, but have spent the last two weeks vomiting and nauseous all the time. I can't go to work, can't do my research and write my book and the sx have been getting worse. Tried Maxolon and Zofran. No effect and just made me really sleepy or gave me blinding headaches. last night at 2 am I retching blood into the toilet and at that point I decided, enough. No more. I'm out. maybe with UND since W6, the TT allele, and the Gilead drugs, I'll stay UND, but if not, that's. Just the way life goes. I don't have serious fibrosis and I need now to get healthy again, get back to my career. thoughts?
I hate hearing that you feel so bad. I too was on the same drugs for the trial. Started with all oral with riba, 5885, 9451 and 9190. Add PEG and lost 9190 at week 8 due to relapse. Now on week 45 of 48, and never had any side effects worth mentioning. No nausea. I wonder if something else besides the drugs is causing this. It's not normal for these drugs to cause bleeding like you mentioned. I wish you the best. Keep us posted. Feel better.
My 'small bit of fat' ended up being a big glass of milk and half a banana sandwich.... just something to help the stomach lining. If I didn't at least have that my stomach/bowels would become a nightmare....
I can't congratulate you enough for making some progress and continuing the tx, and will be hoping and praying for the outcome xxx
I can't congratulate you enough for making some progress and continuing the tx, and will be hoping and praying for the outcome xxx
Hi-just saw that you may have found a solution to your side effects and may be able to continue with tx. That's such excellent news! Sounds like you have a very responsive doctor.
I'm so sorry you've had such a difficult treatment. There is a very real chance that you can SVR, even if you end of quitting. Of course, that is never preferable, but it sounds as though your hep is on board. Re: brittle bones, I was diagnosed with osteoporosis a few weeks ago, and saw a very well regarded gyno yesterday about this. She strongly recommended something called AlgaeCal and Strontium, said she's seen amazing results with her patients. I have ordered it online, which seems to be the only place to buy it. Once you've begun your healing post-tx, you might want to look into it. Absolute best of luck to you.
Wow, somehow I missed this whole thread until now, but I was so relieved by the positive turn it took at the end that I had to write and say how glad I am that you have found some relief! It sounds like you really went through hell! Congratulations to you and your very good doctor for finding a pathway back to a liveable life. I sincerely hope the rest of your tx goes much more smoothly and you live happily ever after in SVR-land!
here's hoping you get to feeling much better soon and that these weeks fly by.
on my 2nd SOC, i stopped at about 30 weeks (and was UND at 4) - but it came back. i too got too sick to go on- been waiting for new TX. I will be 60 so quality of life is an issue. thinking the RIBA is a major factor. I hover at about 14.6 hemoglobin and when it went down to 10 or 11. i was not able to function!
anyway best of decisions for you and great support here for you.
on my 2nd SOC, i stopped at about 30 weeks (and was UND at 4) - but it came back. i too got too sick to go on- been waiting for new TX. I will be 60 so quality of life is an issue. thinking the RIBA is a major factor. I hover at about 14.6 hemoglobin and when it went down to 10 or 11. i was not able to function!
anyway best of decisions for you and great support here for you.
I am so glad you are trouble shooting what it could be about your existing routine that might be contributing to how awful you feel. I hope so some changes and the temporary dose adjustment gets rid of your nausea.
I know we are supposed to take the Riba with a small amount of fat but somewhere along the way I guess I got out of the habit of doing that. So here I am taking all these different antihistamines and antiemetics to treat the sides and it could be because I am not eating. I think your doctor's theory about a "loop" makes sense. And maybe what you are doing could be considered breaking the cycle.
I hope you post again to let us know if this worked and how you are feeling. I know it must have been overwhelming feeling sick and not being able to focus and I am glad you feel more optimistic. ♫
I know we are supposed to take the Riba with a small amount of fat but somewhere along the way I guess I got out of the habit of doing that. So here I am taking all these different antihistamines and antiemetics to treat the sides and it could be because I am not eating. I think your doctor's theory about a "loop" makes sense. And maybe what you are doing could be considered breaking the cycle.
I hope you post again to let us know if this worked and how you are feeling. I know it must have been overwhelming feeling sick and not being able to focus and I am glad you feel more optimistic. ♫
Yes, I totally agree with your Hepa Doc, about the not eating food with Riba cycle, and nausea. I noticed this, very early on, in Tx. It is VERY important to take the Riba with food, the more nutritious, the better!
It was good detective work, on both you and your Docs' part, to figure out that yr week-end of traveling started the nausea cycle~
I'm glad that a solution has been found, good luck~
It was good detective work, on both you and your Docs' part, to figure out that yr week-end of traveling started the nausea cycle~
I'm glad that a solution has been found, good luck~
FYI: Hepa seems to think that we can get caught in a loop with the Riba and nausea. He tells me that if we forget to take it with food more than a couple of times in a row, the nausea and vomiting can start and this begins a loop: nausea and vomiting stop
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No -one here is walking in the OP.s shoes ,however it seems many here have given excellent advice as usuall that also seemingly correlates with what his doctor has advised.
Hope you are well..
Will
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No -one here is walking in the OP.s shoes ,however it seems many here have given excellent advice as usuall that also seemingly correlates with what his doctor has advised.
Hope you are well..
Will
No one on this site is walking in your shoes. 36 weeks is a longtime. Do what you feel you must.
Wow. Scary indeed. Great to hear the nausea and vomitting has subsided for now. Hope you'll be able to complete tx to give you the best chance for SVR. You'll soon be into the single digits and the weeks will click away. You're not too far from eot. You certainly wouldn't be the first who's had to stop early due to major complications if that has to happen. Wish you the very best carring forward.
Hi i went thru 2 treatments so i know how you feel,anyway this is not about me but you,you will be in my prays.It seems like your riding the fence hu?You know your own body better then any dr.,i wish you the best of luck and anything else that will help you! :)
So happy that you are finding some solutions to stay on course with your treatment. I had some severe nausea issues a few times but found my way with the support of this team. I really am rooting for you that all will work out on your hard fought journey to freedom. The very best wishes :)
Try eating applesauce with your riba if you can't manage anything else, I got anorexia so bad during the incivek part that it was all I could get down with the riba, the 20 grams of fat with the incivek would put me over the edge as far as food went. The applesauce was light and kept me from getting sick from the riba. Good luck and so glad you're feeling better.
Update: missed 3 doses of Ribavirin with hepa's approval. Nausea and vomiting eased almost immediately but not entirely gone.
FYI: Hepa seems to think that we can get caught in a loop with the Riba and nausea. He tells me that if we forget to take it with food more than a couple of times in a row, the nausea and vomiting can start and this begins a loop: nausea and vomiting stop us from eating so the Riba is even more damaging, so we eat even less, Riba gets even harsher, more vomit less eating, more Riba issues. This could be what happened to me as I was out of town for a long weekend 2 weeks ago and it was hard to time the Riba with proper food.
So missing three doses yesterday and early today seems to have broken the loop. I'm now back on a reduced Riba dose. Still nausea but manageable and no vomiting. Decent food stays down!!!! Yay! Had my 37th Pegasys injection today too, took reduced Riba, ate a decent meal and feel, well, not okay, but kinda like I felt before the nausea started.
I am so very grateful to you all for your good advice, your kindness and patience during a very scary time for me.
FYI: Hepa seems to think that we can get caught in a loop with the Riba and nausea. He tells me that if we forget to take it with food more than a couple of times in a row, the nausea and vomiting can start and this begins a loop: nausea and vomiting stop us from eating so the Riba is even more damaging, so we eat even less, Riba gets even harsher, more vomit less eating, more Riba issues. This could be what happened to me as I was out of town for a long weekend 2 weeks ago and it was hard to time the Riba with proper food.
So missing three doses yesterday and early today seems to have broken the loop. I'm now back on a reduced Riba dose. Still nausea but manageable and no vomiting. Decent food stays down!!!! Yay! Had my 37th Pegasys injection today too, took reduced Riba, ate a decent meal and feel, well, not okay, but kinda like I felt before the nausea started.
I am so very grateful to you all for your good advice, your kindness and patience during a very scary time for me.
I can't help but wonder if you are actually allergic to the meds.
If you have little to no fibrosis, stop !
The only reason I would do tx is to keep my liver healthy.
If you have little to no fibrosis, stop !
The only reason I would do tx is to keep my liver healthy.
I spent the day retching yesterday with a stomach flu for one day and night so hard I fell down a few times. I cannot imagine doing that for weeks on end. I wish you the best telecat........sometimes you know best. I have problems with my esophagus too - it's no fun at all.
It sounds to me as if you have already treated too long.Best wishes to you on your recovery from these meds and Svr is still possible for you. Why not? Proctocol is simply an average that worked! So sucess IS possible on the lower end of the curve!
That's what I thought. We lowered the Ribavirin from 600 BD to 400 BD, but without relief. I'm waiting to hear if we can lower further and also decrease Peg.
cant you just take less dosage of the riba and peg? at this point that should be ok shouldnt it? Anyboby?
Little to no fibrosis? Hepatologist tells you to quit? I would follow his advice.. The all orals sound promising and it sounds like you have time to wait for something better. I wish you all the best and hoping for a quick recovery.. Who knows.. you might stay UND.. Sending positive thoughts your way!!
What he means is that the sx are tearing up my body so much that he's worried something really major will happen. For example, the constant dry retching which must be witnessed to be believed is placing a lot of strain on both my heart and on the blood supply to my esophagus. The Pegasys has damaged the bones in my pelvis and my upper chest.They have become very frail, as though osteoporosis has set in, except it has not.
I hasten to add through, that my medical team agrees that I am having one of the worst experiences with sx they've ever seen. As you know, most people have it a bit easier than I have.
Anyway, I've missed one full dose of Ribavirin and the nausea and vomiting has already eased off a bit. I'm waiting for the hepa to call and chat about possible solutions other than ending treatment completely.
I hasten to add through, that my medical team agrees that I am having one of the worst experiences with sx they've ever seen. As you know, most people have it a bit easier than I have.
Anyway, I've missed one full dose of Ribavirin and the nausea and vomiting has already eased off a bit. I'm waiting for the hepa to call and chat about possible solutions other than ending treatment completely.
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