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Avatar universal

post tx sides for the long term

Hi All,

It's been awhile since I've posted.  I saw a very long thread on this subject so decided to start a new one since that one was too old.  It will be 1 year in a couple of weeks since I finished treatment with SVR. I was one of those people who knew I had the virus for over 15 years but chose not to treat b/c I had minimal damage, no symptoms, etc.  I finally chose to treat if you can believe this, b/c I was dumped on the spot by a guy I cared very much for when the pre-sex discussion came up.  I decided at that point that I would treat and hopefully never have to tell anyone again and risk that rejection.

My experience with tx was absolutely horrible as many of you have experienced.  I lost my beautiful long curly hair, my skin tone, my mind, etc.  I couldn't wait for it all to be over so that I could be "normal" again.

This leads me to now - one year later . . . my beautiful long curly hair is a memory.  I am left with a volume of pencil thin wispy nothings on my head.  What has grown back is thin and then falls out again.  The dermotologist says the meds probably triggered female pattern baldness.  I am plagued with what the rheumatologist calls "fibromyalgia."  I hurt all over.  Some days I feel like I've been beaten up - badly.  I have no sex drive and other related problems and my OB says the meds maybe triggered early menopause.  Most days are just miserable. I feel ugly and tired depressed. I try to exercise but then I hurt for 3 days afterwards.  All my bloodwork is normal and no one can explain why I feel this way except that no one seems to . . .
45 Responses
Avatar universal
con't. . . know what the long term effects are of this tx.  Am I still glad I treated?  Honestly, no.  If these long term "side" effects are forever than I can tell you my quality of life has diminished significantly.  I'm not telling anyone they shouldn't treat, especiallly those who did not have the option.  I'm just sorry I did.  

-cbee
Avatar universal
Sorry to hear about all the problems your still having.  I hope that with more and more time you will get better to some degree.  I mean we did a wicked treatment for up to 48weeks or more depending.  Thats almost a year of your body fighting this ****.  It may be a slower recovery for your body to get back to normal.  At least I hope that is the case for you.  I have heard from a few that still had problems after a long time post treatment.  Good luck with everything.  Keep taking acre of yourself.

Steve
Avatar universal
That is horrible for you! I hope some of the folks that are done txing post with some news that may bring you hope. I cant imagine how you must feel.











Avatar universal
Chev say: he is having a very difficult time and is reticent in expressing himself because some that are, are being accused of evoking fear in tx'r.
-------------------------------
Thanks for bringing this up, as I have been accused of this myself. The point in bringing up these things is not to evoke fear in those that are treating but to help those still in the decision process make a decision that takes into account all experiences and all points of view. Hopefully your friend will feel comfortable enough to speak out but I certainly understand someone not wanting to put themselves in the line of fire. It is encourgaging for me and others that you and some others have had lingering side effects that eventually cleared up resulting in more health than pre-tx. But as you say, this doesn't happen to everyone.

-- Jim
119874 tn?1189755829
I, too, want to thank you for sharing your experience.  Those considering TX need to know all that they can--and these long term side effects are an important part of the equation.

Fear of those sides (and minimal damage) kept me from treating for 8 years.  Even with all my searching in advance, I could find very little hard information about the long term side effects.

I am sorry that you are having so much trouble.  I hope that your symptoms will improve with time.

Best wishes to you.
Avatar universal
I was feeling so crummy today and finally got the courage to post here again even though after I wrote the post was afraid I would be attacked for my honesty.  I noticed most of the responses were from folks who I know from this forum who were treating at the time too. I think we always supported each other in that we should not be judged for sharing our experiences. I know I couldn't have gotten through the tx without some of these people.  I learned things the docs didn't want me to know or didn't know themselves.  I learned what to do when my skin got rashy or my mouth dry, etc.  I also learned that it is not our jobs to promote or pursuage people to tx or not to - just to be honest and in sharing our experience we do so.  Once they made that personal decision being here to support them was what was important.  It is exceptional what people can do for complete strangers when they have a common cause.  Thank you so much for allowing me to share my experience.

-cbee

Avatar universal
It seems to me the number one reason people who are recently diagnosed fear treatment is the fear of side effects, during or after. I have not seen anyone post here in the year I have been visiting say to anyone that post treatment sides don't exist, nor have I seen anything but compassion offered to those who post about them so I don't understand how someone got the feeling they couldn't post about them. Clearly they do exist for some people. How often does that happen is the question. How often do existing illnesses or disorders get "set off" by the tx? How many of those who have these issues have them but they are not related to tx? How many are due to having Hep C for decades rather than from the tx? If people post treatment were flooding back to their doctors with these issues and it was a common occurance it would be one thing, but they aren't. That is probably why there isn't much data on it, because it is rare. They do seem like common issues if you only go by what you read on this site. They are mentioned to practically every new visitor as if they are a common occurance. Doctors cringe at internet groups for this reason, many docs believe tx problems during AND after are overblown in groups like this. I know some will be mad at me for saying that, but that is verbatum what my doctor said when I asked him about post tx problems, ad others have aid their doctors said similar things. He said you do not see these kind of "post tx permanent issues" on a large scale and in his practice he put the percentage at 1-5% and added that many of those issues "cropped up"  but existed prior to treatment. He then asked "did you read that on the internet?"
This is not to say that even one person suffering with them should be left without follow up treatment or that they shouldn't study this issue more but the risks of HAVING HCV vs the risks of having these type of problems are not equal. It seems the majority who treat do NOT have that experience. If that fear is made to seem larger than it actually is then a new visitor might leave with the impression that the risk is larger than the reality and base their decision on fear rather than on more sound criteria. People with ongoing issues are looking for answers so more likely to be online seeking others in their position than people who do not have this problem.
Maybe if it was said to newly diagnosed people " in rare instances people have developed lasting problems" or something along those lines so unnecessary fear isn't created in people who are just finding out they have it.



Avatar universal
What then accounts for a significant number of hepatologists suggesting a watch n' wait strategy for those with little or no liver damage? If serious side effects are so rare, why wouldn't treatment be recommended to everyone by every doctor?

Your doctor is of course entitled to his opinion, but it is not shared by all doctors -- in fact the medical community seems split on the risks and rewards of treating those with little or no liver damage.

Compared to other boards I've visited, MH is pro-treatment, so I don't share your view that people here are made unecessarily fearful. I see post negative post tx experiences posted here like cbee's. and I also see others post they don't have any lingering sides. And then those like Chevy who say they had sides for a year or so, and now they feel better than ever. Hopefully, the more people hear, the better they will be able to make their own decisions.

-- Jim
107513 tn?1232286464
Funny, when I talked to my Dr before starting tx, the possibility of lasting and permanent sx's was one of the topics. Interferon is a STRONG chemical, and at the doses we are taking, it's bound to flare things up.
This forum is probably the most pro tx forum on the net, and at the same time, it also displays some of the most honest members around. Other forums, threads such as this would be zapped, disappear, etc. If you think that these things are not common, check out some other forums.. Hit up Delphi, etc.. Look for a lady named Tee. Granteehem to be specific.. She was a EMT paramedic, acquired HCV, treated, has cirrohisis, and is left with VERY real and lasting sx's from the interferon. There are many, many other members out there just the same. Yeah, not everyone get them.....But just as with the meds success, we're all playing the odds.
I was 26yrs old at the start of tx, now I'll be 29 in late July.. I feel as though I aged 10 yrs.. When I look in the mirror, I don't see the baby boy I was always called. I feel achey, joint pain, and my skin has aged as well. My mind is not as quick, and I have trouble putting together words and with basic comprehension. Articles and studies I use to be able to read and breakdown the first attempt, I now find myself rereading just to remember what was just stated. These meds are strong, and t5he sx's are real.. I for one am gonna listen to people out there experiencing and going through the same thing I am, not my Dr.. If you haven't noticed, Dr's are not always honest!!! Sometimes they fail to mention the little things, and this is done so very conveniently to cover there own.
119874 tn?1189755829
One more point about our doctors:  I think that hepatologists and lots of gastro docs who treat hepC aren't necesarily deceiving us.  They're just really into LIVERS.  They see what liver failure does to real people and they know it looks bad.  So...they're focused on our livers--but not necessarily our brains and hearts, etc.

Unfortunately, it really is up to us to weigh all the costs and benefits when deciding on TX.  For people with minimal to moderate damage, it's harder to do the calculation.

I find all information helpful.  I can scan the NIH website and read articles in the Journal of Hepatology all day.  That's no more or less helpful to me than hearing the experiences of real people (those with lasting side effects and those who feel better than ever) here.  Of course, you guys tend to be a lot more fun than the J. of Hepatology.

Alg.





Avatar universal
I've been slammed before by stating that people should be more afraid of the the current meds than the hepC. I'm one month post tx and compared to tx I feel pretty good, but death would also probably feel better than tx.
I stick to my guns when I talk about deciding to use these meds, they should be used only as a last resort. When there is definite, not suspected; symptoms and advanced liver damage due to HCV. Some people also tend to blamed everything from a bad attitude to hemmoroids to zits on HCV.
For the majority of those with HCV I believe they should live healthy and treat when a better course of tx becomes available. I had advanced liver damage and was showing obvious symptoms of liver disease, so for me it was a last resort. I am clear now but I would never re-treat with these meds, nor would I have extended tx. For now it's too early to tell but I have every intention to clear this junk out of my body and mind; and get on with a healthy life.  Peace
137025 tn?1217764741
Well, you are right about the long-term effects of tx, most docs do not have a clear picture of exactly what they are and who they will leave feeling worse than the Hep did.  But I think since the long terms effects of Hep are liver death and then people death, the medical community down plays the lasting effects.

I too feel like I aged 10 years from tx, took a year for my hair to come back and I am not even close to being as phsically strong as I was before.  It has been two years since I quit, I non-responded and still have fatigue, dry skin etc.  My attitude changed a lot this past two years, I think if you are trying to get back to where you were before tx, you will grow more disappointed as time goes on.  

But there is nothing to say that you can't walk every day, great for the butt, get tx for the early menopause and cut your hair shorter while you do minoxidil.  The point is, Hep C touched you, Interferon whammied you, and now you start over, just in a little different shape and size.  

Pissed me off a lot at first, but now I am better, I learned to take a lot of pictures after tx, it is what makes me happy.  Hiking used to make me happy, but I adapted.  What really sucks for me is now I get to do tx all over again and you can bet that I will be one rereading my own posts for inspiration once I start.  I will miss my hair and my puny muscles and my appetite, but if I clear this time, my life, however changed, will ROCK!!!  I do not want to have Hep C.  Tx sucks, but the alternative is unacceptable.  Hope the day gets better for ya.
Willow
Avatar universal
Sorry what happened and thanks for sharing your experience . I agree with you that the medical community tends to minimize post treatment side effects. Hopefully those with little or no liver damage will listen carefully when trying to make a decision. Someone in advocating treatment for all made a statement something like side effects are temporary but the virus is forever. I'm sure this rings hollow to those like yourself who are suffering. Yes, there can be worse things than having the virus and in some cases that is treating the virus. At 16 weeks post treatment, it's too early for me to make any personal judgements, but if some of my post treatment issues don't clear up, I will do what I never said I would and that is to second guess treating even as a stage 3.

-- Jim
Avatar universal
Just had to comment on this one folks. I treated 48 weeks and relapsed. It took a full year for me to come back fully to pre-tx state. Most recovery was fairly quick-hair,eyes,skin and energy but mental state-depression lingered-decreased slowly and sleep was weird for about 5 months post also. Now-two years post I feel healthier then pre-tx eventhough I've still got hcv. I feel for those with lingering sides but not all will have them. I am a 1a and fortunately stage 1 and grade 1 damage so I am waiting for (possibly) vx-950 for my next go-round.
I also would comment that the current crop of people on the forum are brave and humorous-with or without svr you are winners in my book.
Avatar universal
I hope your sides do pass at some point and I know full well the great risks of these drugs. My hopes and prayers for your complete recovery.
Avatar universal
very Good thread...i am worried about my recovery after trx...If the sx's from the meds linger and i age 10 years i will be pissed....thanks for the post & everyones comments.......Now let's hope we ALL achieve SVR and  Good Health
Avatar universal
Yes, my doctors didn't like Internet "groups" either.  I realized why when I had skin rashes, hair loss, vision issues, dry mouth, aches and pains, anxiety, sleeplesness, etc.  and he said that all those things were "rare."  None of those things were rare and the things I tried to alleviate the symptoms came from these folks here in this forum - not from the docs!  In fact the doctors were not happy b/c I was asking questions about things they didn't have answers for and blaming the Internet!  I live in Los Angeles, treated at Cedars Sinai and the liver clinic at UCLA, and sought advise from another specialist who only treats Hep C. These are supposed to be some of the best specialists yet not one of them told me about the long term problems I now have post tx.  I am very happy to have this forum.  Like I stated in my earlier post, it is important to be honest about our experiences.  My doctors (to the best of my knowledge) never treated for Hep C.  I'm very happy to have the opportunity hear from those who did.

-cbee
86075 tn?1238115091
Speaking for one who is deciding on treatment, what kind of treatment, etc...I for one am glad that there are those who honestly recount their experiences, bad or good or indifferent, here and at other boards...as a low damage hep c patient, I feel I need to learn all I can for a truly informed decision, don't look now but I probably have a lot riding on any ultimate decision I make...

I do realize that not all patients are like me, I have a friend Henley, who tells me I'm nutz! to go on boards like this, if you have to take the meds, might as well know as little as possible about all possible outcomes, etc....so you won't scare yourself to death, especially if youre the obsessive type of person that he feels we both are (guilty as charged, though I do try to work on it! ha ha)

I for one feel that it is probably impossible to quantify a lot of issues regarding this disease, the meds haven't been around a long time for a lot of data to be recorded on them, and I don't talk to a lot of patients who say that the drug companies or even their doctors followed up on their tx and post tx expereinces, the most Ive seen are a few studies on the subject, if there's "a lot" more statistical data out there, I maybe would of seen it by now, perhaps not...

I've said this before, but I've also attended a lot of hep c support groups, and a lot of the patients I met there never  venture out on hep c sites....and the ones who treated sounded a lot like the average of what you encounter on these boards...some had better experiences then others on treatment, some had long lasting post sides that were troublesome...some felt a whole lot better a month out of treatment and regained their prior lives relatively soon after, etc, etc...what's really weird, and I think Jim brought this up, it seemed like half of the geno 1's SVRed at these groups, just like it seems on these boards...

Since there's not a whole lot of data on many of these issues, I just maintain that it's all over the place, but whatever happens to you is whatever happens to you, to try to draw conclusions based on the existing data is a very difficult thing, I wish this were different...

I think Algernon brings up a good point, not every doc is going to be heartily enthusiastic about these drugs for a geno 1, how could they be with a 50% svr rate? It's all relative, compared to 10 years ago they are great...so if they have to prescibe a potentially very hard treatment lasting a relatively long time, which is effective 50% of the time, are they gonna say, "Hey, this stuff is going to kick your A$$!!!"

Of course they are going to try to put the most positive spin on it possible, cause it is the only game in town and that's all they have to offer us...of course they are hoping you do have the best experience possible under the circumstances...I would find it a little suspect that a doctor would quantify the percentages of long lasting sides as 1 - 5%...but maybe that is his/her particular experience in his/her particular practice...

And like Algernon says, a hepatologist sees people in ESLD all the time, sometimes I shudder in the lobby of my hepatologist, I've seen so many patients so badly off, it's really heart wrenching, if this is a doctor's experience, he/she is probably very likely to say "treat" in the hopes of averting this for any of his/her patients...who could blame them? Compared to these people some patient who is a grade 3 is doing darn good...

And to put things in perspective, many of us have known people who didn't treat, and were far the worse for it, at least I do...

So I'm glad for the people who are gung-ho pro treatment, cause they provide good insights and bring up some very valid issues, they help people who are treating stay on course and stick with it, and feel better for it, this is a pretty pro-treatment board, yet many keep an open mind for everybody and it's great to see people help each other out so such a trying ordeal....

And I'm glad for the people who are more cautious about treatment for low damage patients, cause they bring up some really valid points as well and point out the fact that these are very stong drugs so don't just jump in willy nilly, really research, etc., before you jump in, if you decide to treat with these drugs at all....all these people help us decide what is right for us individually...along with our doctors...
119874 tn?1189755829
TX is a process.  Being diagnosed, deciding whether and when to TX, then possibly THE TX, then post TX experiences (SVR or not).

This board is extremely helpful to folks deciding to TX and who are on TX.  It's great that people feel free to post about every weird and scary and miserable detail of ther SXs while on TX--and the rest of us can help with support and advice based on our experience.

Post TX is part of the TX process.  By this point, most of us feel like we're part of the Forum family--this may be the only source of support for many.  We should all feel free to talk about what's happening to us post TX--whether it's good or bad.  Sometimes post TX folks need support and advice. And sometimes they give us hope.  They all help us on our journey.

Avatar universal
I think you have to be careful describing people as
"fearmongers" because they are relating their post treatment experiences and/or expressing their heartfelt thoughts on treatment decisions based on both their own experiences and those of others.

How can you call these people fear mongers and at the same time state emphatically that lingering post-tx side effects are "rare"?
Isn't this a reverse (and just as bad) form of fear mongering in a sense? In other words, misleading people by stating things as fact that aren't born by any facts? On what basis do can you so emphatically make that claim that lingering post tx sides are rare?

If it's so rare, then I guess all of us posting about our post treatment side effects are hypochondriacs?

-- Jim
Avatar universal
I know its important to beable to talk about all the sx pre-tx, during, or after,......
Personally, I feel frightened by the prospect of post tx sx.
It was not something that was ever discussed, and like the typical ASS U ME I assumed, stop tx, sx stop too. Very naive of me I realize.
As I looked into the mirror this morning I thought about all I had read, I would be lying if I didnt say I am scared. Fear can be healthy though,........
What keeps me going is "the light at the end of the tunnel"
But isnt that what keep all these others going? It seems like a cruel joke,....what they are going through.
Yes,.....talk about it, my gosh, talk about it!!!
I will deal with my own fear,.........sometimes fear can be healthy.
132578 tn?1189755837
True lilmoma , fear can keep us in line. If I had a little more fear 30 yrs ago I might not be in this pickle. (did I say pickle)

As for the post tx sx , I would have to guess the vast majority of us HCV never considered there would be in lingering problems from the treatment. It never crossed my mind untill my tx was underway , not that it would have made any difference. I guess I thought as long as I'm being scared during tx , a little more fear cant hurt me. WRONG. My fear has never been of tx , but what happens when its over. Am I going to get my body and mind back in one piece? Probably . But we are all different.
( I beginning to hate that phrase)

Take care.
137025 tn?1217764741
All the colors of the rainbow flag in this thread, I like the variety of experiences and answers here.  This is a place to talk of our experiences with Hep C or that's what Google told me.  I'm not very good at "packaging" my responses, just to keep a specific "tone" of chat going on, especially when it comes to having Hep C, experienced various degrees of side effects and then failing to respond.  

Please don't tell me I can't be my "wordy" self while I am here, like parents, I understand wanting to protect newbies, but we cannot.  And how dangerous is it when we take it on ourselves to educate them with our opinions, rather than our personal experiences.  And if my experiences with tx were less than perfect, I need to be able to express that also.  

You all rock, like I've said before, all the true faces of the dragon.  Hope your holiday is dandy.
Willows
132578 tn?1189755837
Here Here.
We all came here and continue to come here looking for the truth , good or bad. The worst thing that we could do to/for these new posters is not give them the truth and to allow them to set their course for an outcome that will be very difficult at best . We have to let them know , and remind ourselves , that the light at the end of the tunnel might be a train.

"Other than that , how did you like the play Mrs. Lincoln?"
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