Post Treatment Trouble

[Amber1430]

I am new to this forum, but I am relieved that others are experiencing the same side effects.  This gives me some hope.

I am 29 years old, but most days I feel 60+.  I am a mother of four wonderful children (ages 2, 9, 10, 11).  I work as an Accts. Rec. Manager.  I was fortunate to only have taken the treatment for 3 months before the virus was undetectable.  I completed a 6 month course, but during this time my blood levels took a dive from a high cliff.  I was put onto Neupegen treatments every other day to help raise my WBC, and my thyroid went haywire.  I am now going on 1 year post treatment and am having horrible side effects.  My vision has plumeted to the point where I have difficulty seeing the computer screen (hence the horrible typing!).  Also, my joints and muscles ache, and I am extremely exhausted all the time.  I cannot seem to get enough rest.  I am also becomming more and more forgetful, sometimes repeating things within minutes of each other.  My job is suffering and people are beginning to notice.  

The newest symptom is quite bothersome.  You know the feeling you get when your arm has fallen asleep right before the tingling begins?  I have been having episodes where my whole body feels this way.  Everything echos in my head as well.  Cognitively I know where I am, recogonize my surroundings, but can not seem to process the information.  I become extremely terrified.  These last about 5 - 10 minutes and getting longer and worse.  

I have an appointment with my doctor in about a week.  After reading through all of your wonderful posts, does anyone have any suggestions on how I should approach this with him?  I know most of you have said that your doctors seem to think that "it is all in your head," but I was hoping maybe someone had some advice.

Thank you for listening to my rather whiny post.

  

[Amber1430]

Thank you all for your wonderful suggestions.  I am still undetectable for HCV, and hopefully this will still be true after my doctor's visit.  My thyroid did finally recover, but I have not had it checked in several months.  I am the type of person who does not go to the doctor unless it is absolutely necessary.  I plan to have a full workup done, but this of course is out of my hands.  I appreciate all of your thoughts and suggestions.  I will definately try to change my diet to see if this will help.  

Happy New Year to all.  May this year be better than the last!

[GoofyDad]

I have some lingering problems like what you describe but much less severe. I raised them with my hepatologist (my new insurance prevents me from seeing him) and he emailed back that a few (maybe 3% - don't remember) have long term post treatment effects. It could also be that you have some other underlying issue - it's very easy to infer a cause & effect relationship where it may not exist. Try to get a full work up of everything.  

[Frank J. Perrotta]

It has been my experience that most specialist dont believe whats going on or dont know much about hep C treatment. Of course, the hep C gurus say that it could never be their treatment and blindly send you off to some other specialist who simply goes down the list of their test and send you away with a slip which often times shows nothing in the bloodwork.

I have had most luck with local PCP/GPs who seem to get the folk really messed up (hello, thats me) and are seeing more and more.

I guess I am rather lucky as one of my GPs had two liver transplants, used the treatment one mix before my newer mix and has had zero problems. His wife is a nurse and must have stuck herself and got C also. She treated (and "cured") but in the past five years is suffering neurological damage that is getting worse - and her husband, my doc, cant help her!!!

Sooooo, at least my docs dont blow me off...

[GSDgirl]

Hi, here is a link from the health pages which you might find interesting  

http://www.medhelp.org/health_pages/Hepatitis/Members-Comment-on-Side-Effects-of-the-Treatment-Drugs-During--After-Treatment-/show/530?cid=65

Good Luck

Denise

[Rockerforlife]

I believe watching what you eat ,especially if you have hep,is one of the most important things you can do,before ,during and after TX.


"The trouble with always trying to preserve the health of the body is that it is so difficult to do without destroying the health of the mind".  ~G.K. Chesterton

[speed502]

Although our tx may differ; I tx'd in 2000 w/Intron A 2b w/riba and don't know yours, I can relate  to your sx situation. Interferon 'fog and hangover', I first heard these terms back in some old posts by Jim (jmjm530 back in 2007) and it made me aware that others did have the same longer term sx. Mine were pretty miserable for about 3 yrs before becoming more sporadic as time went on. I got the same 'all in your mind' stuff often for years, as I would still have 'hangover' episodes that would last weeks. I may have to agree with Bobby1952. After some recent lab work my PCP noticed some test results were similar to diabetes. While not having diabetes, I started a 'diabetes based' diet and have felt more energetic and overall just... better. I don't know if this will help you out but know that you aren't alone with the sx. Best of luck to you.

Speed

[Bobby1952]

   I had troubles post treatment also. It is my belief that it is the result of the massive amount of inflamation that the Interferon causes. The only way I got it to subside was to start on a vegan diet. Vegan diets reduce inflamation in the body. It worked for me. Eat oatmeal, fruits, and veggies and stay away from meat. The sauturated fat causes inflamation.

   I know this sounds severe but it worked for me.

Bobby

[GreatBird]

Did your thyroid recover from tx? Have you seen an endocrinologist?

[mikesimon]

I would see an ophthalmologist about your eyes. Treatment can affect vision - I suffered a retinal tear during treatment..
Are you still undetectable for HCV?
HCV is associated with cognitive issues but my understanding is that they usually resolve with a sustained viral response - undetectable at 6 months post treatment or, as I prefer, undetectable at 1 year post treatment. What you describe is more severe than what I am accustomed to seeing. Usually it's described as "brain fog" or "forgetfulness".
People report fibromyalgia post treatment so that may be related to your pain and fatigue. I really don't know much about this "side effect' but many people do seem to suffer with fibromyalgia after HCV and treatment.
I suppose a PCP is the starting place but I think you'll do better with specialists - an ophthalmologist for sure and probably a gastroenterologist and/or hepatologist and a neurologist.
Good luck,
Mike