Long term side effects of interferon

Hi everyone.  I went through interferon treatments in 2010.  I only could do three injections before my white blood count fell too low to continue the treatment.  I did still clear the virus after those three shots.  I have been cleared for two years now.  I have not felt right since my treatment and am wondering if anyone else had such a small dose of interferon with lasting side effects?  I am tired all the time and get sick way too often. Two weeks ago I had my two year screening to make sure I had still cleared the virus and I told my dr. who ordered a complete blood test.  My thyroid levels came back low at .17 so I went back in last week and they were back to normal.  The only other oddity in my blood work was my red blood count is low.  Last year at my screening my white blood count was low, but came back normal this time.  I am waiting on new blood work results to come back.  I did not realize the lasting effects of interferon until I was searching for reasons my thyroid would be off.  Are there any recommendations on diets or supplements to take to "feel better"?  I kinda feel crazy like it's in my head or something but after reading other peoples posts I do not think I am alone!!  Thanks!!

[Dee1956]

Hi I am amazed that you got to UND with 3 injections, great job.  There may be other people who can help.
Good luck

[fretboard]

Three injections and you have reached SVR?  Wow, good for you but is your doctor certain it was the injections that helped your body clear the virus?  

As far as your question goes, there are some people who report serious longterm side effects from the interferon.  I suggest you look in the archives, there are many threads on the issue.    

[ceanothus]

Wow, I've never heard of anyone clearing the virus so quickly, that's incredible! Many of us have endured multiple lengthy treatments without achieving SVR, so at least in that particular way you are very fortunate. Im sorry you are not so fortunate in other ways and are having ongoing problems. While there are some cases of very long term side effects from interferon, including known risks to thyroid function and some reports of long term fatigue or autoimmune problems, I haven't heard of long term blood abnormalities. I suspect you may have other unusual things going on, and would encourage you get a consultation with a good hematologist to try to track down the cause of these blood abnormalities. Come back and let us know when you do learn more, okay?

[cjc81]

Thank you I will check the archives.   My dr. assumed I was able to clear it so quickly since I had a very low viral load to begin with.  I am not sure what else could have gotten rid of it.  Very thankful for my miracle!!  

[orphanedhawk]

If you're not seeing a specialist, I suggest you do so. It seems odd to have these particular problems related to interferon tx and especially to have problems after such a short duration of treatment.

I agree with ceanothus, you may have some completely unrelated issues.
Whatever the cause, it would be good for you to find out.

As far as diet goes, I'd stick with a standard, fresh, healthy as organic as possible, regime, and regular exercise.

[cjc81]

Thank you for your insight.    I am native american and go to a type of clinic so my treatment has been monitored by a general physician.  I have never been to a specialist and am not sure if they will send me to one.  I did just get a call from his nurse that they are ordering more specific tests, so hoping for answers.  I didn't realize how uncommon it is to clear the virus so quickly until I tried to find other people who had low doses of the interferon.  I am very grateful and would gladly take the fatigue..etc. over having the virus back!!  I will keep you and others who are having a harder time in my thoughts and prayers.  Thanks again and good luck to you!!!

[cjc81]

Thank you.  I was hoping it was from the interferon so at least I would have answers.  I try to eat as much organic as possible, but could use better exercise.  Appreciate your response.

[cjc81]

Also, I had the genotype 3a, which he thought maybe helped since it is supposed to be easier to clear

[ceanothus]

I'm glad to hear they are ordering more tests. If they don't find something that very clearly identifies the problem do ask for a consultation with a hematologist. I don't know the rules governing your clinic, but even if they aren't required to provide a specialist for you, they should at least provide a referral - although you might be stuck with paying the bill or with the task of finding assistance with covering the charges. It may be less than ideal but it could be pretty important to get to the bottom of this, and it's naturally going to be more important to you than to them, so try to stay active about it.

Thanks for your kind thoughts and prayers, and I'm sending you mine too!

[Idyllic]

"My thyroid levels came back low at .17 so I went back in last week and they were back to normal. "
________________________________________

If your TSH returned to normal then do you mean why was it .17  in your two year screening (two weeks prior)?  Is this the first time that has happened? What was your TSH on your prior labs? Did your doctor order a complete thyroid panel?


I agree with Pooh in that lifestyle, proper diet & nutrition as well as decent sleep, exercise and being reasonably within your weight class make a huge difference with how energetic we are as well as navigating our way through life in general.

Having said that, you know your body and how you felt prior to treating compared to how you feel now.  It sounds as though you are wondering if what is happening to you is physiological and not necessarily situational or psychological. If this is the case (and the above factors related to lifestyle are in order) then I encourage you to have a complete physical and perhaps whatever additional labs/exams and/or evaluations your doctor deems necessary to get to the bottom of this. Maybe one finding can point you in the direction of a specialist.

I hope you post again when you receive the results of your next labs.

[Dee1956]

I am really sorry for your experience.  I had similar occurence.  I treated in 2008 and it took close to two years for me to recover.  That being said, I did relapse so had all these symptoms and I blamed it on the treatment.  In hindsight I guess it must have been the treatment and then relapsing that really caused me to suffer so much.
I have been trying to find things to help me recover from this second treatment and have discovered a vitamin called NADH, it has really helped me quite a bit to get rid of the brain fog, have more energy etc.  I would suggest that you do search for it online.  There are many sites.  It has helped me and a few of my friends.  It takes a few days to over a week to notice improvement.  I will try to find the site that has the best info and send it to you
Best of luck to you

[Dee1956]

p.s. I do agree that it would be a good idea to get checked out for the symptoms as if they are new however it can't hurt to try nutritional supplements, vitamins, etc.
Are you sure you are still clear of the virus?

Here is a site that has a lot of information, I don't purchase from them
www.nadh.com

Again hope you start to feel better.

[MeWithC]

Did you reach SVR?

[Willy50]

I would use the board search engine and search out threads about post tx symptoms, since the great change in your health seems to be tied to that; pre TX and post TX.

In such threads you will also get some rebuttal, or suggestions; have you had your thyroid checked?, panel for vitamin / mineral deficiencies ?
Quite often vitamin D and B are low, mineral deficiencies (not uncommon that fighting a virus may cause depletion or depletion will mean other body systems malfunctioning. Sometimes bringing these up to recommended levels means your body can start assimilating, processing and rebuilding.

And so these type threads may cause you to consider numerous pathways of cause or cure; not merely blaming treatment.

So far as treatment goes however, it has been my observation that not all people are affected the same.  Some people seem very intolerant to certain drugs; others not.  I would not rule out treatment.  Further, most of the people with post TX sides seem to have somewhat normal labs leaving doctors puzzled as to why patients seem sick.  

There has been very little inquiry into this phenomena, actually there is denial that it exists, but you notice that the medical community is racing trying to limit exposure to the current drugs/ drug regimen.

I do not have any answers, but suggest looking for lab inconsistencies, vitamin and mineral deficiencies, and possibly seeing if you could see a specialist for fibromyalgia.

Yes..... sick people also get depressed.  You may have symptoms of depression or PTSS.... but......
..........one also may argue that treatments for these may include drugs with their own set of side effects, which could make it harder to diagnose the underlying issues, cause new issues, or simply mask the issues.

It is a tough issue with few clear answers; start with things that they can test for and rule out.

Finally....... many people do recover from post tx issues over time; it just takes time.  Stay the course; watch your diet, get exercise and realize that sometimes one must press on in spite of or through depression, pain or lethargy.  Sick people can kind of also atrophy, which brings it's own set of issues.  I wish I had more answers......

willy

[cjc81]

My dr. had never tested my thyroid before.  He only did it this time because I complained of being tired all the time.  He did order a thyroid panel for this week.  I suppose that yes I am wondering if this is physiological or psychological.  I am not depressed and I am fairly healthy so it makes no sense to me to just not feel right.  I have gotten some good tips on things to try so I will start there and wait and see what the dr. says.  Thank you for the support!!

[cjc81]

Yes I am still clear of the virus, and thank you so much for the NADH suggestion I will order some and try it.  My mom has an autoimmune disease and her dr. recommended the vitamin for her.  I hope you begin to feel better too.  Did you clear the virus with you second treatment?  Will keep you in my prayers!!

[cjc81]

I am really confused now.  I got one set of bloodwork back and a few things are off.  I went in today to do more bloodwork and asked for a copy of my HCV results.  They ran three tests.  The first two are the same they have run for the last two years and show not detected.  There is a third test a COBAS they have never run before.  It shows HCV RNA detected.  There is a long side note stating the amount they are testing for is lower than the normal amounts tested and that this is a new test. It also says that there is not enough for a Genotype to be determined.  I went back in to my dr.s office and the nurse told me I will always have a small trace in my blood.  I came home and looked it up and I think she is wrong.  Does this mean that I still have it?  I have not done anything to risk being reinfected.  

[Idyllic]

Whoa! Dobbin....

Be sure to post EXACTLY what it says on the third test. I mean word-for-word. There is particular test (Cobas or taqman or something like that...I think)) where the wording can easily misinterpreted.

Be sure to post your thyroid panel when you receive the results.

[cjc81]

OK so here is what it says:
Please note: the guidelines for the use of new anti-HCV therapies (boceprevir and telaprevir) recommend using a test method that detects plasma viral nucleic acid levels as low as 10 IU/mL.  This assay has a lower limit of detection of 7.1 IU/mL for genotype 1 and conforms to the recommendation.  Quantitation of plasma HCV nucleic acid levels below 43 IU/mL (the lower limit of Quantitation for this test) may not be linear, and in this circumstance are reported as "<43 IU/mL HCV RNA Detected".  This test was performed using the COBAS (R) AmpliPrep/ COBAS(R) TagMan(R) HCV Test Kit.

Then on the next page it says we were unable to obtain a genotype from this sample.

I hope I am reading this wrong.  I go to the Native American clinic so I can't just make an appt.  or stop in and talk to my dr.  The waiting list for an appt. is 6 months to see a dr. so I have to deal with a nurse.  I am transferring my care to another clinic where I have an appointment next Friday, so hoping to have better luck.  

Please if anyone knows what this test means let me know!!  Thank you so much in advance.

[Zorro15]

If you have gone thru treatment. For your hep c , cirhosis, please let me know how effective, how long, side effects , etc your experience was. I have had hep c for over 30 yrs now and have cirhosis . Mt dr wants to treat me with interferon and the other drug but after reading up on it, i am very fearful. Can anyone enlighten me on this matter? Thank you !!

[pooh55811]

Welcome to the forum.

This is an older thread about side effects. Many people do not see or respond to the posts tacked onto an older thread. You will get many more pertinent responses to your question if you will go to the top of the page and click the orange bar (post a question). Then put in a subject title, such as "cirrhosis and treatment questions" or some title that mentions cirrhosis and treatment. People will see it and respond.

When you repost your question please give us a little more information such as your Genotype, your age, and if you have any complications from the Hep C or cirrhosis (such as fluid in the abdomen, low platelets, varices, confusion, etc.). Also do you have any other diseases which might complicate treatment. I am assuming you never treated before since you are asking about side effects of Interferon.