Aa
I'm new, thanks for noticing me
Hope y'all don't mind another newcomer. I was searching the web for all of the side effects of interferon and ribavirin I was unaware of until I was experiencing them, when I found this magical land. The knowledge y'all have and the support and concern you offer each other is truly impressive!
Honestly, I thought I would be able to get through this on my own, and I am still convinced I would if I had to, but I'm not so sure I want to anymore. Sunday I start week six... I wonder what new experiences I"ll have in store this week. Doctor called today, my red blood cell count dropped drastically, cut my riba back. So far I've been pretty lucky though, I think. My shoulder blade muscles have been in a knot for 7 days and I feel like a sore, exhausted pile of bones that dislikes food, but so far everything is tolerable.
The biggest issue I am trying to cope with is the fact that I cannot accomplish everything that needs to be done...I live by myself and hate having to ask anybody for help, I used to decline most help when it was offered, determined to prove to myself that I could accomplish any project, task, or challenge I encountered. I know I don't have the energy, strength, or clear-headed thinking to do it all, I just can't admit that to any of my friends or family yet.
Honestly, I thought I would be able to get through this on my own, and I am still convinced I would if I had to, but I'm not so sure I want to anymore. Sunday I start week six... I wonder what new experiences I"ll have in store this week. Doctor called today, my red blood cell count dropped drastically, cut my riba back. So far I've been pretty lucky though, I think. My shoulder blade muscles have been in a knot for 7 days and I feel like a sore, exhausted pile of bones that dislikes food, but so far everything is tolerable.
The biggest issue I am trying to cope with is the fact that I cannot accomplish everything that needs to be done...I live by myself and hate having to ask anybody for help, I used to decline most help when it was offered, determined to prove to myself that I could accomplish any project, task, or challenge I encountered. I know I don't have the energy, strength, or clear-headed thinking to do it all, I just can't admit that to any of my friends or family yet.
Welcome to the forum Keeping My Wings!
Well I'm sure you've read over and over how it's not a good idea to cut your dosage and usually at 10 we all (who've had anemia) have had to start Procrit or Epogen - please call your doctor today and find out what your hemo really is at and why he told you to cut your dose. A doctor should surely know that keeping your full dose of meds ESPECIALLY in the first 12 weeks is crucial.
If your doctor will not talk abouto Procrit others in here who've sometimes had that problem have gone to a hemotologist and gotten them to write the prescription. When you hear "Procrit" mostly you think of cancer patients however; you ARE on chemotherapy right now whether you realize it or not (chemical therapy = chemotherapy).
As Frijole said copies of all of your labs is mucho important. Make sure you get a copy of every single test you have and put them in a binder or something to keep them together. Post to us whatever info you have or if they haven't given you any WHEN you call the doctor now and say hey I need my full meds!!! ask them to fax it straight on over to you...
I am/was a geno 1A and 1B. 72 weeks of treatment SVR ten months post treatment.
This place saved my life (and most definitely my course of treatment) I knew nothing until I came here but slowly and surely learned more and more every day, read the important new studies that would come out and learn about my options so I could make the best decisions to heal ME and it worked!
Plus - boy oh boy it sure was great to have people who understood what i was going through...how I felt...all of that.
Good luck, Debby
Well I'm sure you've read over and over how it's not a good idea to cut your dosage and usually at 10 we all (who've had anemia) have had to start Procrit or Epogen - please call your doctor today and find out what your hemo really is at and why he told you to cut your dose. A doctor should surely know that keeping your full dose of meds ESPECIALLY in the first 12 weeks is crucial.
If your doctor will not talk abouto Procrit others in here who've sometimes had that problem have gone to a hemotologist and gotten them to write the prescription. When you hear "Procrit" mostly you think of cancer patients however; you ARE on chemotherapy right now whether you realize it or not (chemical therapy = chemotherapy).
As Frijole said copies of all of your labs is mucho important. Make sure you get a copy of every single test you have and put them in a binder or something to keep them together. Post to us whatever info you have or if they haven't given you any WHEN you call the doctor now and say hey I need my full meds!!! ask them to fax it straight on over to you...
I am/was a geno 1A and 1B. 72 weeks of treatment SVR ten months post treatment.
This place saved my life (and most definitely my course of treatment) I knew nothing until I came here but slowly and surely learned more and more every day, read the important new studies that would come out and learn about my options so I could make the best decisions to heal ME and it worked!
Plus - boy oh boy it sure was great to have people who understood what i was going through...how I felt...all of that.
Good luck, Debby
Welcome to the forum. You will find a world of information here, both what you're looking for and also sometimes TMI ( Too much information ). I am just finishing my 48th week. did my last shot on Friday night and have this week of Riba and I am done. Looking forward to it all being over for a while. And praying for the SVR.. I am Geno 1a, and 2/2 . This was my 2nd time around. Went thru 6 mos treatment 14 years ago.. And relapsed. So hoping its gone for good this time. I am sure you will meet alot of new friends and lots and lots of support. Don't be afraid to ask..
Welcome, keeping. Glad you found this sight. I found it invaluable during treatment. I usually check the threads every couple of days but don't often post, but since you have already had your riba reduced, thought I would speak up.
First I would suggest you get copies of all of your reports. From what you have said about how you feel, you probably have hemolytic anemia caused by the ribavirin (most of us get it). This was my worst side effect during treatment. Do you know what your hemoglobin was before treating and now?
It is not a good idea to reduce the ribavirin dosage as it can reduce your chances to clear the virus. There is a better way to deal with the anemia, and that is to add a drug called Epogen or Procrit. Unless your hemoglobin is below 10, I would try to get this added to your treament now. You might ask your GI to consult with the hepatologist ASAP. Another option is to ask for a reference to a hemotologist (blood doc to) who would manage your blood work. I just hate to see you reducing your chances of SVR. You want to do this only once if possible.
frijole
First I would suggest you get copies of all of your reports. From what you have said about how you feel, you probably have hemolytic anemia caused by the ribavirin (most of us get it). This was my worst side effect during treatment. Do you know what your hemoglobin was before treating and now?
It is not a good idea to reduce the ribavirin dosage as it can reduce your chances to clear the virus. There is a better way to deal with the anemia, and that is to add a drug called Epogen or Procrit. Unless your hemoglobin is below 10, I would try to get this added to your treament now. You might ask your GI to consult with the hepatologist ASAP. Another option is to ask for a reference to a hemotologist (blood doc to) who would manage your blood work. I just hate to see you reducing your chances of SVR. You want to do this only once if possible.
frijole
Hi Keeping,
Glad you found the forum. I also want to thank you for your response to my injection injury question.
The forum has been a blessing to me.
I also kept everything internalized and went thru a very hostile period, wanted NOBODY in my life and totally isolated. When someone I was not well acquainted with asked me how I was doing, I was ready to slap him silly. When I started talking to my closest friends & therapist, that began to change. Also doc has prescribed trazedone and lexapro which is a great help.
I have lived alone for 19 years and prefer to keep it that way thru tx. & probably rest of my life!!! I also hated to ask for help but my friends and the folks on the forum are very understanding. With friends& family it is adjusting visits and activities according to my physical and emotional status at the time. It is annoying but workable. I enjoy being self-sufficient and have become even more so since tx began. If things don't get done, ohwell, because eventually they will get done - on my time. One of the perks to living alone!
Take care, Jenn
Glad you found the forum. I also want to thank you for your response to my injection injury question.
The forum has been a blessing to me.
I also kept everything internalized and went thru a very hostile period, wanted NOBODY in my life and totally isolated. When someone I was not well acquainted with asked me how I was doing, I was ready to slap him silly. When I started talking to my closest friends & therapist, that began to change. Also doc has prescribed trazedone and lexapro which is a great help.
I have lived alone for 19 years and prefer to keep it that way thru tx. & probably rest of my life!!! I also hated to ask for help but my friends and the folks on the forum are very understanding. With friends& family it is adjusting visits and activities according to my physical and emotional status at the time. It is annoying but workable. I enjoy being self-sufficient and have become even more so since tx began. If things don't get done, ohwell, because eventually they will get done - on my time. One of the perks to living alone!
Take care, Jenn
Welcome aboard. As far as "getting everything done". It's not gonna happen. Some things you are just going to have to let go of.
Good luck to you.
Mouse
Good luck to you.
Mouse
Thank you all... Knowing that there are folks who not only understand what I am going through but are also willing to hear about it lifts a massive weight off my shoulders. When friends ask how I'm doing I give them the 'not bad' or the 'pretty good' with and occasional 'little sore'. I was keeping everything internalized without realizing how much stress it was adding.
I know that I am geno 2, not sure if its a or b although I wanna say a. Haven't paid attention to any of the details, I'll work on finding all that stuff out, guess I should have been a little more attentive. I do know I'm scheduled for a 24 week treatment with my last shot on Easter Sunday. My shots are interferon alpha-2a 180mg and my riba got dropped to 600mg from 800mg.
I know that I am geno 2, not sure if its a or b although I wanna say a. Haven't paid attention to any of the details, I'll work on finding all that stuff out, guess I should have been a little more attentive. I do know I'm scheduled for a 24 week treatment with my last shot on Easter Sunday. My shots are interferon alpha-2a 180mg and my riba got dropped to 600mg from 800mg.
Welcome to the forum. I live alone also. Don't lower your riba too much for the first 12 weeks. You need to hit that virus hard. As your Dr. about Procrit. I did work full time for 33 weeks. Then I retired. My home got dirty the first 33 weeks on tx and I called in help and had 2 ladies clean it. It was well worth it to have everything nice and clean. After that I could keep it up. But it does make you feel bad to see a mess but be too tired to clean it up. I wouldn't turn down any help if it was offerred. Fortunately my side effects usually weren't too bad and I got a lot of help and support here.
Take good care.
Take good care.
Hi, and welcome to the forum, where all your questions can be addressed - tho maybe not all answered :)
Treatment can be rough, especially if you have to go through it alone. I too live my myself, and am a very private person. As Wyntre says, try to do the tough things on the days before your shots, when you feel the least bad. Drink lots of water. THentry to get up the courage to tell one friend or one neighbor or one relative that you are taking chemo for hepatitis, and that it is very debilitating, and that you hope to be able to count on their help and understanding if you need it at some point in treatment.
This forum can be very helpful with practical advice and support, and someone no doubt will have gone through a similar thing to whatever it is you might be experiencing at that moment. But sometimes a real, living, actual, physical person has to be there to help if it all gets to be too much.
Really hope your treatment goes well for you!
Mark
Treatment can be rough, especially if you have to go through it alone. I too live my myself, and am a very private person. As Wyntre says, try to do the tough things on the days before your shots, when you feel the least bad. Drink lots of water. THentry to get up the courage to tell one friend or one neighbor or one relative that you are taking chemo for hepatitis, and that it is very debilitating, and that you hope to be able to count on their help and understanding if you need it at some point in treatment.
This forum can be very helpful with practical advice and support, and someone no doubt will have gone through a similar thing to whatever it is you might be experiencing at that moment. But sometimes a real, living, actual, physical person has to be there to help if it all gets to be too much.
Really hope your treatment goes well for you!
Mark
Glad you found the sits, too.
TX can be brutal althugh there are a few people who seem to sail through ubscathed. (I'm not one of them).
I'm on week 49 of 72 and there have been some horrendous weeks and some that weren't so bad. Mostly it's a couple good days here interspersed with a lot of time where my main exercise involves the remote!
Sorry your HgB is dropping. Mine has never gone below 11 during the past year but I've still had SX 'coz iof it including weakness, dizziness, SOB. It can be scary.
BTW: I live alone, too, and i try to pace myself as much as possible, doing major stuff like grocery shopping, laundry, on "good" days..
Welcome,
wyntre
TX can be brutal althugh there are a few people who seem to sail through ubscathed. (I'm not one of them).
I'm on week 49 of 72 and there have been some horrendous weeks and some that weren't so bad. Mostly it's a couple good days here interspersed with a lot of time where my main exercise involves the remote!
Sorry your HgB is dropping. Mine has never gone below 11 during the past year but I've still had SX 'coz iof it including weakness, dizziness, SOB. It can be scary.
BTW: I live alone, too, and i try to pace myself as much as possible, doing major stuff like grocery shopping, laundry, on "good" days..
Welcome,
wyntre
Hellp there! Your story sounds exactly like mine. I am alone...been running bsck & forth between Kentucky & Missouri ...where each of my 2 kids live, and thhhe treatment was a rough one. 48 weeks, was doing good...then went belly up. Now I am on Infergen & ribo, & have till Dec 5th to see how it's doing. It is hard...and if you need some support, I have free long distance, & you can call me anytime & I will call you back & be there for you. It's hard, but time does fly. If you're interested...email me. Same user name, only at hotmail. & I will be there with you the whole way, You can do this!! LipStick1959
Welcome to the forum!
It's 5:45am my time..so just a quick hello and tell you i'm glad you found this site. This place has definately made txing more tolerable.
If help is offered...be grateful for family and friends. There is no shame in that, my fellow warrior!.(when you are ready...)
So, tell us your stats and whatnot. what treatment (tx) you're doing...how much reduction in riba and stuff like that... I am once again gonna attempt some shut eye. BTW, I am geno 1a...txing for 36 weeks?...somethin' like that.........
Peace Out.
Y
It's 5:45am my time..so just a quick hello and tell you i'm glad you found this site. This place has definately made txing more tolerable.
If help is offered...be grateful for family and friends. There is no shame in that, my fellow warrior!.(when you are ready...)
So, tell us your stats and whatnot. what treatment (tx) you're doing...how much reduction in riba and stuff like that... I am once again gonna attempt some shut eye. BTW, I am geno 1a...txing for 36 weeks?...somethin' like that.........
Peace Out.
Y
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