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Long lasting symptoms or effects of interferon treatment
Hello, My mother completed HEP C treatment (interferon) approx. 2.5 years ago. She is now experiencing serious body aches and pain as well as depression. The doctor says is not related. Has anyone experienced these and other symptoms? If so, can you share information and advice? Thank you very much!
Hi s.f. I love that city. I'v been taking interferon and riba for 5 months with one to go. Same as you for the past 5 weeks or so sx come and go. Yesterday good day with just pain in leg. I'm sorry about your neck. Pain sucks.
I take tylenol if To much pain other wise i wait. Wait for better days. You know what though? I was afraid of losing these 6 months. The leaves have changed here on the island and winter is close. My kids are to be 6 months older and I am too. I tried to hold onto every moment of this tx because after all 6 months in this short life is a lot. My 7 yr old, if 6 seconds go by with out a sound or some form of stimulation, all he can say is "I'M BORED" TX makes me very frustrated
I take tylenol if To much pain other wise i wait. Wait for better days. You know what though? I was afraid of losing these 6 months. The leaves have changed here on the island and winter is close. My kids are to be 6 months older and I am too. I tried to hold onto every moment of this tx because after all 6 months in this short life is a lot. My 7 yr old, if 6 seconds go by with out a sound or some form of stimulation, all he can say is "I'M BORED" TX makes me very frustrated
One pill makes you larger, one pill makes you small.... Oh, yes aren't these lovely drugs? Have you seen the documenty Drug Years? It's really good. On VH1.
I didn't read your stats, or how long you have been on tx, but my experience with sx is that they change daily. I think I am doing great and then bamm, I am writhing in pain. It happened tonight, my neck felt so bad my face and features were distorted. I hate it! Luckily I got rid of it, only to wake up dripping wet from sweat at 1:30 am. Are you up too? Can you take something?
Welcome to our Jumanji game and forum!
I didn't read your stats, or how long you have been on tx, but my experience with sx is that they change daily. I think I am doing great and then bamm, I am writhing in pain. It happened tonight, my neck felt so bad my face and features were distorted. I hate it! Luckily I got rid of it, only to wake up dripping wet from sweat at 1:30 am. Are you up too? Can you take something?
Welcome to our Jumanji game and forum!
For me, I am glad to hear this talk and sorry if it bores anyone. I am aslo glad to hear peoples problems on tx. Like my leg hurting all night again. I never had this kind of pain before. I have heard so many others on here talk about hip and leg pains. Before coming on here almost 2 weeks ago, though having 2 freinds who did tx, I have been relived from alot of fear about what I have been feeling.
And all the post tx talk. This isn't fairy land. Reaility can be blunt. I need to know about the possibilities of continuing sx. There's nothing worst then thinking it's you or that you are alone. In the 70's there was that microdot acid, just that some little pill did the most incredible things to you. Or that small piece of paper. Take more then a few dozen {or hundreds}and you have been altered. I have my own little thought on tx about sx. It seems to bring out, well the best way to say it would be weakness'
And all the post tx talk. This isn't fairy land. Reaility can be blunt. I need to know about the possibilities of continuing sx. There's nothing worst then thinking it's you or that you are alone. In the 70's there was that microdot acid, just that some little pill did the most incredible things to you. Or that small piece of paper. Take more then a few dozen {or hundreds}and you have been altered. I have my own little thought on tx about sx. It seems to bring out, well the best way to say it would be weakness'
I ended up with a weird high iron condition on tx. My tx doctor was not on board for my bx. When he went back, there was no iron stain from the bx. He said "No prob. We'll call the other hospital, they have to keep extra tissue by law." He called, they sliced and dyed (like the rondo-matic) and viola - a new iron stain. It was normal, BTW, and feritin of 2K or so bounced back to normal after treatment.
Anyway, maybe your tissue is floating in formaldahyde somewhere.
Anyway, maybe your tissue is floating in formaldahyde somewhere.
HAHA! you sound like me! that is exactly what I told myself. give the tx a shot, and see if it would take my aches and pains away once the virus was gone! If i got svr, and pains remained, at least I had no hcv to worry about anymore. I also was afraid of loosing my thyroid (you can ask for an antithyroid antibody test). Some people had said that their aches went away with tx and once they got SVR, so why not try?
I did get svr, ex geno 1a, but the aches did not go with the virus. Maybe the damage from chronic hcv is irreversible in some people. who knows?
see how tx goes for you, I was stage one grade two. You make sure that you have a good pain med and rescue drugs when breathing becomes a chore. If you are not a brain surgeon or a air comptroller having brain fog will not put anyone in danger. It does take a lot more concentration and the tx can be so mentally tiring, but it is doable and most people recover their pre tx life. Watch yourself carefully and insist on help when needed.
I did get svr, ex geno 1a, but the aches did not go with the virus. Maybe the damage from chronic hcv is irreversible in some people. who knows?
see how tx goes for you, I was stage one grade two. You make sure that you have a good pain med and rescue drugs when breathing becomes a chore. If you are not a brain surgeon or a air comptroller having brain fog will not put anyone in danger. It does take a lot more concentration and the tx can be so mentally tiring, but it is doable and most people recover their pre tx life. Watch yourself carefully and insist on help when needed.
Sorry you're still having lingering issues. It took close to six months for my post tx skin problems to resolve and I didn't treat as long or hard as you did.
Seeing a dermatologist is a good next step. Meanwhile, I'll share some non-medicinal skin care regimens that helped my itching.
(1) Use Cetaphil Mild Cleanser instead of soap.
(2) Shower in luke warm water, but not hot or cold.
(3) Pat dry with soft towel. Treat your skin like a lady :)
(4) If possible wear all cotton or silk clothing and preferably white and preferably loose. Wool and synthetics can be very irritating next to the skin. If you have to wear wool, wear a silk liner underneath. I practically lived in silk long Johns for stretches of treatment.
(5) Only use non-perfumed laundry detergent and rinse everything twice.
(6) Change pillowcases and bedding as often as you possibly can.
At one point I was changing pillowcases daily.
(7) Heavy moisturizes can sometimes clog the pores and be counter productive. Experimentation is the key and sometimes less is more. I found Cetaphil lotion and cream to be less irritating but everyone is different. If something isn't working, stop using it and move to another brand. The really expensive creams and lotions at women's cosmetic counters are some of the worst. I finally threw away my Creme de Nuit. LOL.
(8) Try relaxation, breathing or mediation. Some excellent tapes on the internet. Go to amazon.com and enter search words like "meditation", "relaxation", etc.
(9) Be patient. Your skin should get better but it may take more time.
(10) Lastly, and this is tricky -- try not to let your derm over treat. Of course you want relief, but the derms I went to treated my symptons the same as if I never had been on combo treatment. Truth is they don't know much about it. In the end, time will be your best healer as you start distancing yourself from the treatment drugs.
Hope this helps.
Be well,
-- Jim
Seeing a dermatologist is a good next step. Meanwhile, I'll share some non-medicinal skin care regimens that helped my itching.
(1) Use Cetaphil Mild Cleanser instead of soap.
(2) Shower in luke warm water, but not hot or cold.
(3) Pat dry with soft towel. Treat your skin like a lady :)
(4) If possible wear all cotton or silk clothing and preferably white and preferably loose. Wool and synthetics can be very irritating next to the skin. If you have to wear wool, wear a silk liner underneath. I practically lived in silk long Johns for stretches of treatment.
(5) Only use non-perfumed laundry detergent and rinse everything twice.
(6) Change pillowcases and bedding as often as you possibly can.
At one point I was changing pillowcases daily.
(7) Heavy moisturizes can sometimes clog the pores and be counter productive. Experimentation is the key and sometimes less is more. I found Cetaphil lotion and cream to be less irritating but everyone is different. If something isn't working, stop using it and move to another brand. The really expensive creams and lotions at women's cosmetic counters are some of the worst. I finally threw away my Creme de Nuit. LOL.
(8) Try relaxation, breathing or mediation. Some excellent tapes on the internet. Go to amazon.com and enter search words like "meditation", "relaxation", etc.
(9) Be patient. Your skin should get better but it may take more time.
(10) Lastly, and this is tricky -- try not to let your derm over treat. Of course you want relief, but the derms I went to treated my symptons the same as if I never had been on combo treatment. Truth is they don't know much about it. In the end, time will be your best healer as you start distancing yourself from the treatment drugs.
Hope this helps.
Be well,
-- Jim
Child just made me remember Balnetar Bath Oil. It gave me some relief from itching. I'd soak in it at night and then gently towel dry. You don't want to rinse it off with water. Only caution is to make sure you clean the tub after each use. If not, it will eventually stain the porcelin. Don't ask me how I know :) Most druggists do not carry it but some will order special. You can also buy it on the internet. It was recommended to me by a derm for psoriasis. The oatmeal soak as mentioned is also very good. Just try not to stay in the water for too long because ironically bathing in water can dehydrate the skin.
Balnetar: http://tinyurl.com/ycatk8
Balnetar: http://tinyurl.com/ycatk8
has your mother have these symptoms throughout tx and post tx? It sounds as if she might have started having the symptoms 2 years post tx? If so, it would be very hard to find a correlation bt her present symptoms and the meds she stopped taking two years ago. Hopefully is not parkinson's, but a good neurologist should offer some good suggestions and medications that can keep her functioning and improve her quality of life.
By all means read the threads that were posted above regarding lingering effects of HCV tx. This is an issue that has been finally getting some widespread attention, and there are many post-tx'ers out there complaining of similar problems after ending their therapy. I am over three years SVR and since one month after ending tx have experienced a range of neurologic, arthralgic, rash, and fatigue related symptoms. You will see descriptions in the posts listed, but please do be aware that this is a problem that others also share. An independent survey of post-tx patients was done in the past year and demonstrated that a large number of people feel worse after tx. I believe it was somewhere in the range of 35% of those surveyed. Many specialists in the medical profession are beginning to describe the pattern of post-tx problems that they are seeing, and a few are treating their patients with different medications. Rheumatologists seem to be getting a good bit of this spillover after tx, as well as neurologists, and GP's.
As you will see, there are few answers yet to this problem, and little acknowledgement of the problem within the HCV specific medical community. Although many HCV doctors used to tell patients that they would feel good in a few weeks or a month or two, I now note that many are saying that it might be a year or more before the post-tx 'hangover' symptoms fade. They are being dragged kicking and screaming into the realities of the post treatment experience for a good portion of us. It is impossible to know how long the post-tx sx might remain, and for some it really is only a few weeks or months, and for others a few years, and for yet others, no relief yet after more than a few years.
Keep in touch with this forum, and I am sure you will read periodic threads on this subject. Maybe you will even see some answers being found for these disabling, and nagging symptoms, in the coming years. For now, about all you can do is live very healthy, eat well, exercise, and see appropriate specialists to address the lingering sx.
Good Luck and stay in touch.
DoubleDose
As you will see, there are few answers yet to this problem, and little acknowledgement of the problem within the HCV specific medical community. Although many HCV doctors used to tell patients that they would feel good in a few weeks or a month or two, I now note that many are saying that it might be a year or more before the post-tx 'hangover' symptoms fade. They are being dragged kicking and screaming into the realities of the post treatment experience for a good portion of us. It is impossible to know how long the post-tx sx might remain, and for some it really is only a few weeks or months, and for others a few years, and for yet others, no relief yet after more than a few years.
Keep in touch with this forum, and I am sure you will read periodic threads on this subject. Maybe you will even see some answers being found for these disabling, and nagging symptoms, in the coming years. For now, about all you can do is live very healthy, eat well, exercise, and see appropriate specialists to address the lingering sx.
Good Luck and stay in touch.
DoubleDose
Hi, Elaine, thanks for asking, same old pains for the same old lady (ok, not so old), but such is life, pop a vicoprofen and go on. I hope you are feeling well and the cold does not make a dent in your bones! And your baby is doing as well as he can be.
colleges are stepping up their recruitment and we have endless letters to open and tons of websites to check. overwhelming. Apparently the CEEB has some search feature for colleges to find the type of student they want and they have been using it!
We want to stay in the east coast, but REED college just sent their stuff to her and they sound pretty good, except all the way in Oregon! it will come down to who offers the most money, because there are many good colleges and universities out there.
I can't believe how many there are in Mass and PA! Any input on other good affordable institutions is welcome.
So far, College of New Rochelle, Wilson in PA, MCLA in Mass and Reed in Oregon got our attention. Harvard did too, but the fact that they ask for SAT II tests is a turn off. I feel that if the student takes the ACT, it should count for the SAT II. I have a feeling that Harvard will change this some time in the future, but not in time for us. They have instituted what they call the Harvard Initiative, where families with income less than 60, 000 are not expected to contribute towards the young person's education. Speaking of Harvard, did you hear about the paraplegic woman, recent graduate, that ran for the senate in NY? pretty impressive.
The whole process is so expensive, from taking admission tests and their fees, to exhorbitant application fees! Asking for SAT II is just another money making scheme, given the fact that colleges offer their own placement tests. ok, enough ranting. Are you sorry you asked? :-}
be well
colleges are stepping up their recruitment and we have endless letters to open and tons of websites to check. overwhelming. Apparently the CEEB has some search feature for colleges to find the type of student they want and they have been using it!
We want to stay in the east coast, but REED college just sent their stuff to her and they sound pretty good, except all the way in Oregon! it will come down to who offers the most money, because there are many good colleges and universities out there.
I can't believe how many there are in Mass and PA! Any input on other good affordable institutions is welcome.
So far, College of New Rochelle, Wilson in PA, MCLA in Mass and Reed in Oregon got our attention. Harvard did too, but the fact that they ask for SAT II tests is a turn off. I feel that if the student takes the ACT, it should count for the SAT II. I have a feeling that Harvard will change this some time in the future, but not in time for us. They have instituted what they call the Harvard Initiative, where families with income less than 60, 000 are not expected to contribute towards the young person's education. Speaking of Harvard, did you hear about the paraplegic woman, recent graduate, that ran for the senate in NY? pretty impressive.
The whole process is so expensive, from taking admission tests and their fees, to exhorbitant application fees! Asking for SAT II is just another money making scheme, given the fact that colleges offer their own placement tests. ok, enough ranting. Are you sorry you asked? :-}
be well
Hey, Scott, at the risk of sounding like a fool, I am glad I treated at stage one!
all: cata here is not clear in her post, it sounds like the symptoms started two yrs post tx, but maybe not. How much blame are we going to assign the meds and how much longer post tx? 2 yrs, 5, 10? When do we stop saying is tx related? If we get a new condition yrs post tx, how can anyone be sure that is tx related? no one knows one way or another, but the meds are the easy target for everything. one third feel worse than before tx, two thirds don't. whatever the symptoms or conditions, the tx is the same as those non tx related, there are no special therapies for joint pains due to hep c or tx, they are the same as those caused by most type of arthritis. Consult a rheumatologist and s/he will prescribe the same tests and basically the same meds as the other non hep c patients with similar pains.
all: cata here is not clear in her post, it sounds like the symptoms started two yrs post tx, but maybe not. How much blame are we going to assign the meds and how much longer post tx? 2 yrs, 5, 10? When do we stop saying is tx related? If we get a new condition yrs post tx, how can anyone be sure that is tx related? no one knows one way or another, but the meds are the easy target for everything. one third feel worse than before tx, two thirds don't. whatever the symptoms or conditions, the tx is the same as those non tx related, there are no special therapies for joint pains due to hep c or tx, they are the same as those caused by most type of arthritis. Consult a rheumatologist and s/he will prescribe the same tests and basically the same meds as the other non hep c patients with similar pains.
you are not truly going to based your tx decission on what you read on the internet, are you? you have to put in perspective the fact that everyone that is treating or have treated is not online to offer their experience with tx. Many that have no symptoms or mild sides have no reason to seek support boards. You have no idea what tx is going to bring for you, making a decission to stop based on what is said here, is not giving yourself a chance for a cure. Many people do not experience debilitating sides and it appears that at least two thirds are the same or better as before tx. Maybe you are reading the boards too much? I separated myself from the boards after the first month on tx, and did not come back until I needed support. Perhaps, taking a break for a while might help?
i am geno 1a stage 0-1 but have battled fatique for years and now that menopause is here it about stopped me in my tracks. BUT i was still able to push myself to get done what had to be done and enjoy some days. i started this tx thinking it would either work and take away my sore bones and tiredness or not work and i'd be back where i started minus a thyroid and a few hairs. am i way off base? thanks for talking to me - evy
good point i guess success stories are out enjoying their success. hmm that makes sense. proves i'm not thinking clearly
Hi everybody. I am a week shy of being 5 mon. post treatment. The itching, especially on my arms & legs is driving me nuts. It's not dry skin, I can assure you of that. I feel hot practically all the time unless I'm outside & it's about 60 degrees outside or I run the A/C down real cold. It's like a radiating from the inside heat. My skin doesn't feel particularly sweaty, more like a clammy feeling. I notice it mostly in the 12 noon to 6 pm time frame, when I exercise, get in the sun at all, shower, or get in an environment where someone is not keeping the A/C low enough or has the heat on too high. All of these things. Which means, I itch every day. Get too hot, every day. I drink plenty of water, so I'm not dehydrated. I believe this is all post treatment related. I feel nervous way more easily. I still do not have a lot of stamina. I can do something for approx. 2 hrs, if I'm active & then, I literally have to sit down. For example, shopping, housework, going out like to an art show, or something where you'd have to be up & on the go. If I'm sitting I can last for a longer period, but I still need to be half reclining after approx. 4 hrs. This is not just laziness because when I'm able to feel good, I'm trying to get a lot of things done. I still push myself to exercise, but when I do, I am done for the rest of the day as far as activity. I'm still having sleep problems & can't sleep but about an 1-1/2 without taking Ambien. The muscle aches (or possibly a fibromyalgia thing) & bone pain, is still a big issue. I really want this to go away. I don't know how much of this is related to the Hep & my not ever clearing & how much is related to all the treatments. I just know that it's worse now in the last 5 mon. I don't really have a rash that I can see, so that doesn't explain the itching either. I do notice when I look @ my skin closely there are more & more of these white dots (like a lack of pigmentation thing). I've got an appt. with a dermatol. in Dec. to see what she thinks. I don't see liver guy until Jan. 3rd wk. I don't think it's hormonal, I'm on HRT. Sorry to complain. Susan
yes, we all do what we feel we must, and what we can. If you believe that posting what you experienced in detail is a responsibility, then you follow through.
the funny thing is that when someone like me, in a thread where others are voicing every note out of tune, states that not everyone experiences those things and gives herself as an example, she gets accused of minimizing the other person's pain, and denying its existence. when in reality she is doing what the others are, stating her experience during and post tx. but because she is not experiencing the same things and saying so, she is chastised or at least if feels like that sometimes. what is it that they say... damn if you do...etc.
so, on with life!
the funny thing is that when someone like me, in a thread where others are voicing every note out of tune, states that not everyone experiences those things and gives herself as an example, she gets accused of minimizing the other person's pain, and denying its existence. when in reality she is doing what the others are, stating her experience during and post tx. but because she is not experiencing the same things and saying so, she is chastised or at least if feels like that sometimes. what is it that they say... damn if you do...etc.
so, on with life!
hi, sorry your mother is going through this and i also think there is a good chance it is related to the treatment. may i ask how old your mother is? best of luck to your mother
Thank you everyone. To answer your questions, my mother began seeing symptoms during her treatment but these have worsened after.
I hold out hope she will begin to feel better sometime. As far as joining the forum, she doesn't know how to use a computer nor speaks very good English. I will continue to educate myself and pass down everything I learn to her. Thank you everyone for your comments.
I hold out hope she will begin to feel better sometime. As far as joining the forum, she doesn't know how to use a computer nor speaks very good English. I will continue to educate myself and pass down everything I learn to her. Thank you everyone for your comments.
i am very alarmed. This is my 1st week. tho i have read a lot (I thought) this lingering sx is all new to me. My Dr. said the hep wasnt killing me. He said since my symptoms were so bothersome i should take the treatment. I had no idea the symptoms i start with may stay or get worse. maybe i should stop treatment. any opinions?
no Scott, you got me confused with someone else! I don't think it is all aging or the meds or hep c!
I don't say that the symptoms are not meds related, because no one can say that with certainty. The mention of ruling out other conditions with similar symptoms comes when the person states that these symptoms started months or yrs post tx. That is when things can get quite testy, nes pas?
I asked once here what would be considered post tx conditions that are tx related. We know almost for sure that something that starts during tx, that was not there prior to tx, and has continued post meds has a strong scent of being tx induced. Even things that start shortly after tx, maybe up to 3 months, we can make a correlation. But a yr or longer later?
No doubt in my mind that some folks are experiencing troublesome symptoms, so far most dont seem to be terminal or extremely debilitating. Plus, most drs and scientists would do the same thing, postulate possible reasons for an event or condition, you have to rule out other causes before settling for combo tx as the only possible cause. Devil's advocate or scientific method oriented person, take your pick. No one knows what I truly believe....mystery becomes me. Kidding aside, even with the new drugs around the corner of 5 yrs, I would probably have used present tx, since living with the fricking virus was not mentally possible for me.
another thing about me, you probably noticed it, like you, I did not regularly mention every bit of side or pain I felt while on tx, to me there was no point, since talking about them day in and out, would not have brought any relief, so why mention them? same with post tx issues, I see no point because whatever ails me, will be treated no different than the folks that have had no tx or hep c. Listing my set of symptoms post tx, bring no reward for me or generates diferent approach from my providers.
I don't say that the symptoms are not meds related, because no one can say that with certainty. The mention of ruling out other conditions with similar symptoms comes when the person states that these symptoms started months or yrs post tx. That is when things can get quite testy, nes pas?
I asked once here what would be considered post tx conditions that are tx related. We know almost for sure that something that starts during tx, that was not there prior to tx, and has continued post meds has a strong scent of being tx induced. Even things that start shortly after tx, maybe up to 3 months, we can make a correlation. But a yr or longer later?
No doubt in my mind that some folks are experiencing troublesome symptoms, so far most dont seem to be terminal or extremely debilitating. Plus, most drs and scientists would do the same thing, postulate possible reasons for an event or condition, you have to rule out other causes before settling for combo tx as the only possible cause. Devil's advocate or scientific method oriented person, take your pick. No one knows what I truly believe....mystery becomes me. Kidding aside, even with the new drugs around the corner of 5 yrs, I would probably have used present tx, since living with the fricking virus was not mentally possible for me.
another thing about me, you probably noticed it, like you, I did not regularly mention every bit of side or pain I felt while on tx, to me there was no point, since talking about them day in and out, would not have brought any relief, so why mention them? same with post tx issues, I see no point because whatever ails me, will be treated no different than the folks that have had no tx or hep c. Listing my set of symptoms post tx, bring no reward for me or generates diferent approach from my providers.
as a newbee i think both sides are important. If i had not read someones horifying detail of the 1st shot i would have thought i was dying. and the upbeat comments help with the courage i'll need to hold still for shot #2;)
Just my two cents here about "read the old post" response - I really feel it is a kiss off kind of thing. Just because some folks are sick of certain subject matter doesnt mean it should be dismissed. This subject in particular has not been discussed enough IMHO. I find that each time this subject comes up, something is added to the understanding of post tx sides. I have found incredibly useful info in posts regarding subjects that seem absolutely beat to death. Those of us who are in the throes of certain aspects of treatment or post tx (like me) wait for these disucssions to see how others are doing, to chime in on our progress etc. Having said this, I have seen the same people answering the same questions over and over again never seeming to tire of it. Just keep it up, its like a nice mantra - soothing, reassuring and relaxing. Some of us hardheads (like me) need to hear the same thing over and over before it actually sinks in.
I agree with you 100%. I have almost NONE of the sides I had before tx. I could barely function normally. And those purpura things on the legs - had em - now there gone. Every aspect of my physical health is better - every one. I am almost ready to declare total normalcy here. Yes I have some very irritaing sides including this cloud over my brain but I would trade these ANY DAY for what I had before tx. I probably can say this because I see progress. I might be singing a different tune if sides popped up at 6 mos post or one year or were not gone after a year or two. But at 6 months, I am really feeling like a human being again physically and emotionally I feel like the weight of the world has been lifted. Thanks for your astute comments as usual.
Does it really matter where it came from, will we ever really know; at 46 I've lived a fast and furious life and I nurse alot of wounds; physical and mental. I think what we have to do is treat it for what it is; I have more aches and pains now than before I tx'd. I try to stretch out my pains, strengthen my weaknesses, and take joint support supplements. That's as good as it gets, there's no magic pill; if there were I wouldn't take it- think of what the sx would be. As for depression, if it's something you just can't come out of; get it treated. Many things may or may not be HCV or tx related; the point is if there's something wrong; plan a course to treat it, correct it, make it better - any which way you can.
Peace
Peace
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