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At Least One Year Post Tx - Any Permanent Effects From the Meds?
I am almost two years post-tx and I am still virus-free -YEAH! Most of my side effects went away within the first few days to one month, following tx; however, I do have some permanent effects. The two that I am sure are connected to the tx are: Eczema (that started while going thru tx, most likely from the Ribivarin, and has turned into a chronic condition)and permanent hearing loss (I suffered hearing loss while in tx and, although it improved significanly, when tx ceased, it has never gotten back to 100% normal). I also have some food aversions that started in tx and continued post tx, as well and acid reflux symptoms. Almost one year post-tx, I was diagnosed with Fibromyalgia and antiflammartoy arthritis, (with similar symptoms to Rhemmotiod Arthiriits). Because they started one year post -tx and there is no definitive evidence that the meds caused it, I am not sure that thses condtions are for sure connected to the medications; however, my gut feeling tells me they are, and my Rummutolgoist has not ruled this out. The joint pain is by far the worse in my hands and wrists, although I can get it in various joints thoughout my body.
Do not get me wrong! The tx was 100% sucessful and because, I had Stage 3 liver damage, it has probably saved my life, and I would do it all over again in a minute! However, I am curious if anyone else is at least one year post tx and has any permanent effects from the therapy! What are they and has anyone had similar effects as I have? By the way, my meds were Ribavarin, of course, and Peg-Intron. I would appreciate your feedback
Do not get me wrong! The tx was 100% sucessful and because, I had Stage 3 liver damage, it has probably saved my life, and I would do it all over again in a minute! However, I am curious if anyone else is at least one year post tx and has any permanent effects from the therapy! What are they and has anyone had similar effects as I have? By the way, my meds were Ribavarin, of course, and Peg-Intron. I would appreciate your feedback
My permanent side effects are hearing loss and hypothyroidism. I was on Pagasys. Like you, I don't regret doing tx.
I'm just 4 mo. post tx. and was on peg-interferon and rebetol.
1a. I was just dx with fibromyalgia almost a month ago. The more severe pain is in my hands/wrists/shoulders/neck and upper back.
The less severe pain is just the rest of my body. I had a bad outbreak of eczema (sp) almost the whole time on tx. post tx it is very mild. I also have servere depression/anxiety. I also have cryoglobinmia (sp) I also have some hearing loss and my up close vision got worse.
My liver damage is stage 2 grade 2. tx was very hard. I am glad I did it.
1a. I was just dx with fibromyalgia almost a month ago. The more severe pain is in my hands/wrists/shoulders/neck and upper back.
The less severe pain is just the rest of my body. I had a bad outbreak of eczema (sp) almost the whole time on tx. post tx it is very mild. I also have servere depression/anxiety. I also have cryoglobinmia (sp) I also have some hearing loss and my up close vision got worse.
My liver damage is stage 2 grade 2. tx was very hard. I am glad I did it.
While I personally have NO lasting sides, I have seen many who do. A fair number of the women seem to have thyroid problems. Many folks seem to have RA stuff too. The hearing problems seem to happen to fewer folks, but often enough that it has gotten my attention when I listen to folks talk about the sides. Congrats on your SVR!
Continuing the last thread...............................
Cuteus......
NO....NO....NO.....You can't shorten your tx "time" by simply taking the shots closer together. hahahahahaha What you CAN accomplish by doing that is to increase your anemia and to also find yourself short on meds when it comes to the end of your tx. Tx is totally based on strength of the meds vs time in the saddle. .....Kind of like Sex.
LvedByGod.......
I used a Quest test that went down to 50. It was a TMA based test that reacted down to 5 but the results were shown as <50Iu/ml. They all use CPT codes for these tests. My CPT code for my test was 87522. It cost $300 before insurance. Mine was done at the lab in San Juan Capistrano,Calif. Here is a link to the test info on it....
http://www.questdiagnostics.com/hcp/intguide/jsp/showintguidepage.jsp?fn=TH_HCV_RNA_QuantTMA.htm
Remember though that just because you may show clear now, that doesn't mean that you should stop. I am with TnHepGuy and the others in that I believe that you should do the 48 weeks....or as close as you can come to it. Although many docs like to link the type 2's and 3's together, they are NOT equal in the way they respond. Time after time I have seen lower odds on the type 3's when I looked at the studies that seperated them. Plus you have several other negative factors goin on. My opinion would be to go as long as you can towards the 48....but keep a close eye on your blood counts and sides. If either start heading WAY south on you, Then would be the time to reassess the need to continue. Good Luck to you gal........
Continuing the last thread...............................
Cuteus......
NO....NO....NO.....You can't shorten your tx "time" by simply taking the shots closer together. hahahahahaha What you CAN accomplish by doing that is to increase your anemia and to also find yourself short on meds when it comes to the end of your tx. Tx is totally based on strength of the meds vs time in the saddle. .....Kind of like Sex.
LvedByGod.......
I used a Quest test that went down to 50. It was a TMA based test that reacted down to 5 but the results were shown as <50Iu/ml. They all use CPT codes for these tests. My CPT code for my test was 87522. It cost $300 before insurance. Mine was done at the lab in San Juan Capistrano,Calif. Here is a link to the test info on it....
http://www.questdiagnostics.com/hcp/intguide/jsp/showintguidepage.jsp?fn=TH_HCV_RNA_QuantTMA.htm
Remember though that just because you may show clear now, that doesn't mean that you should stop. I am with TnHepGuy and the others in that I believe that you should do the 48 weeks....or as close as you can come to it. Although many docs like to link the type 2's and 3's together, they are NOT equal in the way they respond. Time after time I have seen lower odds on the type 3's when I looked at the studies that seperated them. Plus you have several other negative factors goin on. My opinion would be to go as long as you can towards the 48....but keep a close eye on your blood counts and sides. If either start heading WAY south on you, Then would be the time to reassess the need to continue. Good Luck to you gal........
I disagree totally on moving up or adjusting your dose of meds. There have been studies done in which there has been some emperical eveidence that suggests that one of the reasons for tx non-response or lack of tx success is due to patient non-complince with meds (meaning skipping doses, adjusting doses, not taking it at the same time each week and time of day, taking more or less than has been prescribed, etc). I am 100% conivinced that one of the reasons that I am still virus-free almost two years post-tx is because I was always 100% compliant with my meds. Please trust me on this...it is dangerous and unsafe to make ANY unauthorized changes in your medication dosing and timing. The reason that there are strict guidelines on this is because it has been proven thru emperical research that the proper dosing and timing (as prescribed by your doc)is what is likley to make tx a success. This is too serious (and the tx is too difficult) to mess around with this!
At Least One Year Post Tx - Any Permanent Effects From the Meds?
I TOLD YOU SO......but i was not being posative remeber?
I TOLD YOU SO......but i was not being posative remeber?
Allrighty then...back to the counting board.
I disagree that moving up the shot day will interfere with svr, i can see how dose reduction or skipping would but not taking the interferon a day earlier.
as for that webcast you sent us, scott, quite interesting that they have pegasys as been 46% effective in geno 1 as opposed to 42% for pegintron. the fact that a larger % present neutropenia more than anemia is intriguing also, since we get more QOL changes with the anemia. My neutrophils have remained stabled in the normal low range, I wonder if the ibuprofen is playing a role? thanks for the email.
I disagree that moving up the shot day will interfere with svr, i can see how dose reduction or skipping would but not taking the interferon a day earlier.
as for that webcast you sent us, scott, quite interesting that they have pegasys as been 46% effective in geno 1 as opposed to 42% for pegintron. the fact that a larger % present neutropenia more than anemia is intriguing also, since we get more QOL changes with the anemia. My neutrophils have remained stabled in the normal low range, I wonder if the ibuprofen is playing a role? thanks for the email.
I definitely have full repsect for your training and expertise...and I am certainly not a doctor or a health or Hep C tx expert...this is only my opinion. I was told all of the points that I outlined by my own doc/specialist, so I suppose there is debate among professionals. Also, you mentioned in your post that the concern is really about the toxic effects; however, this is part of my point...the meds are toxic and the prescribed doses are the ones that have been proven to be less toxic...why mess with potentially more toxic doses, if it not necessary and MAY be harmful? In addition, you referred to studies being done with more frequent or higher doses; however, these are studies, some of which have not released their emperical findings, nor have all of these changes been approved by the FDA. With all due respect, I also struggle with a health professional suggesting that it is okay to change dosing without the patient's doctor's approval...this goes against all normal, standard health care advice. One last point (pls forgive me, I love a good debate ;-) The long-term effects of being treated with pegylated interferons have not been fully studied or documented yet, since it is a new form of the medication...who is to say that dosing changes many not have long-term effects that we do not know about yet? Thanks for your expertise and comments...you certainly have more credentials adn training than I do...but for the sake of our fun debate, I had to add my opinion! :-)
Wow,,,congratulations on being hep free and yes,,,,from stage 3,,,I know so much relief for you,,and the 100% on meds,,Good for you as I do know it can be hard especially being in it for the year,,,to always take on time and remember (haha that is the key with brain fog) LOL And,,,hey it worked for ya...right? I know some of the symptoms cropping up such as arthritis, fibromygia etc are concerns for all of us! Good Luck to you!
Chevygal,,,You are a sweetheart for always protecting everyone and guarding over us! LOL You are right though,,,80% is all you need and if 100% that much better! See,,,we are doing just fine! haha I know in beginning before I got the whole thing squared away on meds and finally started using pill box,,,there was a couple of times,,,,I flat couldn't remember if I took them or not and was scared if I took another dose,,,I would overdose LOL
Chevygal,,,You are a sweetheart for always protecting everyone and guarding over us! LOL You are right though,,,80% is all you need and if 100% that much better! See,,,we are doing just fine! haha I know in beginning before I got the whole thing squared away on meds and finally started using pill box,,,there was a couple of times,,,,I flat couldn't remember if I took them or not and was scared if I took another dose,,,I would overdose LOL
Hi guys! Thnx for all of your comments! I appreciate your thoughts and opinions. Please understand...I, in NO WAY, meant to use my comments about being convinced that my complinace with my meds was a key to my tx sucess as a scare tactic. To be quite honest, I stated it as my opinion only about my specific tx expereince. I did, and still do, believe it was important to my tx success, and my doc has voiced his opinion to me that he agrees that tx compliance is a key to success (although that, of course, is just his opinion). However, I never stated it as a health expert, nor did I ever represent myslef as a health professional; I expressed it only as my opinion as a patient. To be honest, I am unsure how that comment could be misunderstood as being a scare tactic...I only stressed..."please trust me on this" because I care and wanted to share my opinion about on point (of course, everyone has thier right to their own opinions). It is standared medical advice, at least in my expereince, to communicate with your doc or pharmisist about dosing changes, so to me that was a reasonable opinion on my part to suggest that pateints get their docs' approval. My comments about dosing changes was ONLY in the context of doing it against medical advise or without your doctor's approval, not with medical or pharmacy approval...so I am not sure how to respond to the comments about when it has been medically approved. Also, I was not talking about occassional changes of an hour here or there...I was responding to the comment of moving up the dose on a regular basis thoughout tx, with the hope that it will speed up the effects. This would be an extreme change in dosing. Sorry, if I have upset you guys...since I am long past tx, I only particiapte on boards to express my expereince and hope, in an effort to help others, so my intestions are good and pure. I will let this one go now and move on to more positive thoughts!
lol...the comments on speeding up the tx, was more of a jesting thing than reality...we have been kidding each other about having a "thing" for interferon. your point is well taken never to stop or adjust any meds without your dr approval.
as for taking everythng exactly on time(riba included) to be svr, I hope you are wrong as I too have suffered the consequences of fog and might have skipped a few doses.
ANy SVRs out there that were not 100% on time?
as for taking everythng exactly on time(riba included) to be svr, I hope you are wrong as I too have suffered the consequences of fog and might have skipped a few doses.
ANy SVRs out there that were not 100% on time?
Guys, I was NEVER talking about occassionally missing a pill or something along these lines...I did that, too! It is bound to happen. I was talking about generally following your doc's and pharmisist's instructions about dosing (inclduing following their advice if they instruct you to change your dosing). I was also talking about extreme dosing changes, not just changing days, etc., and only in the context of not getting your dos'c approval. This is true with any meds...not just Hep C meds. I did mention that one should not INTENTIONALLY miss doses of Interferon because that MIGHT leave open a window for problems; however, accidental mistakes happen to all of us during tx. I apologize again if I have upset some of you. I never thought that my comments would be blown so out of context...I was only trying to help. Please forgive me if I say that, as a new board member, I do feel a bit beat up. We should be able to express our opinions (as you can read, they are all over this board) without being attacked (and again, pls forgive me, but I do feel attacked). I have posted on many other boards and have even had people email me to be their tx penpals because they felt that I was suppprtive, so I am a lttile disconnserted that my comments and intentions have been so misuderstood.
PS Scott, I am sorry but I thought that your were posting your credintaials in your post...I now realize they were your doc's. Sorry that I mis-read that.
PS Scott, I am sorry but I thought that your were posting your credintaials in your post...I now realize they were your doc's. Sorry that I mis-read that.
my horse is a gelding (casterated male)as are the majority of males...opps...male horses, with the exception of those used for breeding or wild horses....amerabrits is a mere, (female) so she could be 'breed' (awful word) at anytime should amerabrit want to do that ...usually its very good for a mere to at least be in foul once, but she still has many years for that ahead....
and yup, i groom the big guy myself, except to clean his sheath,( the gloves to do THAT go up to your shoulder) i'll pay one of the kids at the barn 5 bucks to and tell them its a good thing to learn how to do and be experienced at hahaha....but for the most part grooming is incredibly soothing, calming and healing, for both horse and owner and i love it and so do the horses....i feel sad for those that don't for whatever reasons groom their own horses.....they miss out on an incredible conection.....
and yup, i groom the big guy myself, except to clean his sheath,( the gloves to do THAT go up to your shoulder) i'll pay one of the kids at the barn 5 bucks to and tell them its a good thing to learn how to do and be experienced at hahaha....but for the most part grooming is incredibly soothing, calming and healing, for both horse and owner and i love it and so do the horses....i feel sad for those that don't for whatever reasons groom their own horses.....they miss out on an incredible conection.....
Holy ****!! I just made a side comment to Cuteus. I didn't mean to stir-up such a fuss.
Lighten up on Mystery Girl..ok? She is new and means well and is SVR. She must have dome "something" right,eh?
I made an error in my post to Cuteus. I tend to lump Neutropenia and anemia into the same catagory. Sorry about that. Rev is correct that increasing the peg by doing it earlier does NOT cause "Anemia". It "can" cause the white counts to drop though.
I think you all missed the whole point of what Cuteus was asking. She wasn't talkin about simply moving the shot day once or twice. The question was if we could "Continually" keep moving it up in an effort to stop earlier. THAT is a whole different thing!.....And NOT a good Idea.
That is where Mystery girl came in. I agree with her. Changing the doses and times on our own is NOT a good idea. If we alter our meds on our own ,and so cause our counts to drop, and then the Docs have to cut our meds or something, we lower our odds of clearing. She is completely right! Non-compliance is the #1 cause of failure in this. That can mean missing doses,delaying doses, OR altering our tx on our own. The best bet you all have is to stick to your schedules and doses and just cruise on through.
Hey MysteryGirl.......Commeere. Don't take all the "Flak" to heart. Do you remember what we(you and I) were like on tx? Our brains were "Fried"! Everybody that came at you on this is on tx now. They are "consumed" with tx and all that it entails....just like we were. They are all afraid....just like WE were. All it takes is one wrong word or a comment that is "percieved" to be against what they are doing and they are ready to freak out. It's the Riba.....Remember? Please don't take anything they say personally....It is seldom ever meant that way. I personally always tried to comply at 100%. I had a few failures but was probably 95% compliant....same time,same day,etc.
WE cleared.
All we can do is advise with our own experiences and opinions. If others choose to ignore our advice then so be it. To advise is not a scare tactic. It is genuine concern for our fellow heppers. If they take it that way it is not your fault.
Thank you for comming back to try to help the rest. That says a lot about your character.
Lighten up on Mystery Girl..ok? She is new and means well and is SVR. She must have dome "something" right,eh?
I made an error in my post to Cuteus. I tend to lump Neutropenia and anemia into the same catagory. Sorry about that. Rev is correct that increasing the peg by doing it earlier does NOT cause "Anemia". It "can" cause the white counts to drop though.
I think you all missed the whole point of what Cuteus was asking. She wasn't talkin about simply moving the shot day once or twice. The question was if we could "Continually" keep moving it up in an effort to stop earlier. THAT is a whole different thing!.....And NOT a good Idea.
That is where Mystery girl came in. I agree with her. Changing the doses and times on our own is NOT a good idea. If we alter our meds on our own ,and so cause our counts to drop, and then the Docs have to cut our meds or something, we lower our odds of clearing. She is completely right! Non-compliance is the #1 cause of failure in this. That can mean missing doses,delaying doses, OR altering our tx on our own. The best bet you all have is to stick to your schedules and doses and just cruise on through.
Hey MysteryGirl.......Commeere. Don't take all the "Flak" to heart. Do you remember what we(you and I) were like on tx? Our brains were "Fried"! Everybody that came at you on this is on tx now. They are "consumed" with tx and all that it entails....just like we were. They are all afraid....just like WE were. All it takes is one wrong word or a comment that is "percieved" to be against what they are doing and they are ready to freak out. It's the Riba.....Remember? Please don't take anything they say personally....It is seldom ever meant that way. I personally always tried to comply at 100%. I had a few failures but was probably 95% compliant....same time,same day,etc.
WE cleared.
All we can do is advise with our own experiences and opinions. If others choose to ignore our advice then so be it. To advise is not a scare tactic. It is genuine concern for our fellow heppers. If they take it that way it is not your fault.
Thank you for comming back to try to help the rest. That says a lot about your character.
I has on 48wks of combo and unfortantely I relapsed after completeing 100% of tx. I was EVR and remained undectable thoughout tx. But as soon as the tx stopped I relapsed. I will start a clinical study in 4 to 6 months. I hope sooner. I have no regrets of doing the tx as my bx abit over 2 wks ago showed liver stage 1 and grade 0-1. So the tx did a lot of damage to the virus. I have a new doctor, a hepatologist this time and he's wonderful!
As for lasting sx I have fibromyalgia and tissue damage. I go to a pain center where I have a pain doctor and a psychologist that work very closely together. I am on morphine 3X's a day. My psychologist thinks my fibro and tissue damage are related to the combo tx I was on. My worst pain is in my shoulders and legs, knees ankles and feet. I am also being referred to a neuologist because I have numbness in my left hand...mostly my pinky finger, the tip looks chemically burned and my ring finger is also totally numb. The numbness travels up my hand into my wrist and a little further up. I've also noticed my eye sight isn't what it used to be. But like I said I have no regrets of tx. and I am going to do a tx again!
I wish you the best in yrs to come of a complete heathly life. I was told by my pschologist that the sx should go away in 2 yrs or so. He has been doing extensive studies on the lasting effects of tx. I will keep you in my prayers. Much love, Cindee
As for lasting sx I have fibromyalgia and tissue damage. I go to a pain center where I have a pain doctor and a psychologist that work very closely together. I am on morphine 3X's a day. My psychologist thinks my fibro and tissue damage are related to the combo tx I was on. My worst pain is in my shoulders and legs, knees ankles and feet. I am also being referred to a neuologist because I have numbness in my left hand...mostly my pinky finger, the tip looks chemically burned and my ring finger is also totally numb. The numbness travels up my hand into my wrist and a little further up. I've also noticed my eye sight isn't what it used to be. But like I said I have no regrets of tx. and I am going to do a tx again!
I wish you the best in yrs to come of a complete heathly life. I was told by my pschologist that the sx should go away in 2 yrs or so. He has been doing extensive studies on the lasting effects of tx. I will keep you in my prayers. Much love, Cindee
Hey girl, Just my 2 cents, but I would go the extended...ALLTHE WAY!!!! I feel like if MY dr.goofy had extended my tx I wouldn't have relapsed. I mean my bx last wk showed grade1, stage 0-1. I wonder what it would have shown if I had been extended on tx??? I wish you the best. You are my "angel". I love ya bunches, Cindee
hahaha Mysterygirl,,,,that is so funny that you thought Scott was the dr while he was listing his own drs credentials! I'm still giggling over that.
Scott,,,how many bathrobes have you itched through now??? 4? LOL
Indy,,,,Can I say more since I'm on tx or should I stay in my cage awhile longer and let my brain fry...LOLOLOL
Scott,,,how many bathrobes have you itched through now??? 4? LOL
Indy,,,,Can I say more since I'm on tx or should I stay in my cage awhile longer and let my brain fry...LOLOLOL
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