Post treatment Hep C symptoms

Hello everyone, this is my first time posting here and would be grateful for your thoughts.

I recently(5 weeks ago) finished a 6 month course of Interferon/Ribiviron. Before treatment, I had been having quite heavy symptoms of fatigue, muscle ache, brain fog and memory problems, and chills for 2 years which I had treated as several different illness' (M.E and depression). These symptoms continued throughout treatment and still persist now.

The virus reacted well to the treatment and the viral lode went down. The specialist doctor assured me before treatment that I would be back to normal in no time, though this has'nt happened. The nurses there have been very nice but have been unable to give me any information about when I'll get better or even if I will.

Has anyone else had similar problems and how did it go? Any help would be great, thanks. Brengunn.

[gimpy7474]

were u able to get rid of dx with treatment?

[brengunn]

Sorry, what is dx? All my bloods are clear for the moment but I've yet to have the last blood test. Just the symptoms persist.

[desrt]

http://www.medhelp.org/posts/Hepatitis-C/Long-term-side-effects-of-interferon/show/866107?page=1

[brengunn]

Thanks for that, but as I had the symptoms before I started the treatment, I'm sure its not interferon side effects.

[HectorSF]

So you cleared the virus. You have no detectable virus as of now.

How damaged was your liver before starting treatment? What stage of fibrosis did you have? 0-4.

What do you mean by "chills".
Feeling cold, especially in the extremities, hands and feet?
Have you had your thyroid tested?

Hector

[curiouslady1]

Your symptoms are fairly non-specific and could be related to a host of problems from hypothyroidism to anemia to fibromyalgia to heart and circulatory problems to depression to you name it.  I would say your best shot is to ask your doctor.  

[brengunn]

Well, my liver was tip top, liver function was only slightly raised above average. All the tests I had seemed to point at a perfectly healthy liver despite the Hep C.

That is why, even though I knew I had Hep C, I spent a couple of years, variously, on anti-depressants and having counselling then onto full body acupuncture and finally Chinese and western herbal remedies. My family doctor thought it was something else as my liver was fine.

When I first got ill, I had bloods done for all manner of things, for thyroid and lymes disease and anemia and all were negative. My GP was a bit non-plussed I think. I fairly exhausted the avenues there but the specialist said it was Hep C, for sure.

My bloods are clear of the virus now but I'm still awaiting the 6 month test.

The chills are just general coldness in my core rather than my hands and feet. If I can say this, a bit like if you were sick for smack. That may not help.

Any ideas would be appreciated as I'm right at my wits end.

[willbb]

LFT (if you mean the AST and ALT enzymes) are not a good indicator of how damaged or not the liver is..only a biopsy and /or fibroscan or fibrosure blood test can give that indication. Sometimes blood markers :     Albumin ,bilirubin  platelet levels and the IR can be  indications of  advanced fibrosis
.Although your symptoms may or may not be related to the functioning of your liver .......you have treated and done all you can at this point in that regard. and good luck on obtaining anSVR.

Hope you can get to the bottom of what is going on...
Will

[curiouslady1]

~~~~The chills are just general coldness in my core rather than my hands and feet. If I can say this, a bit like if you were sick for smack. That may not help.~~~

Indeed!  Don't exactly know what you mean by "counseling" but it sounds as if you might want to explore psychotherapy services with a bit more depth.  If I were in your shoes I would go to Tavistock Clinic and ask them what might be available.  In any case, good luck.  

[curiouslady1]

In Hampstead.

[brengunn]

No, I don't think so, I don't think there is any thing wrong with my mind.

I spent time with a psychologist type, and she dug around in all my nasty little secrets and came up with diddly. I took two different types of anti-depressant and neither worked.

I tried both the psychotherapy stuff and the drugs, even though I did'nt think there was a problem with my head, I done it just to rule it out.

I probably do need one now though as I've gone completely doolally!

[ninjamonkey]

Well since you are done with treatment I say wait for your 6nth test if symptoms still persist have your Dr start looking again if they don't have the its the hep c to rely on then they may look in other avenues. If you haven't checked inti fibromyalgia I would I have that and I have the sane symptoms you do but I also have hep c so I can't be sure.  Like I said though more teat after your 6 month.

[frijole]

brenngunn -  you are funny -- and I understand your analagies.  However, 5 weeks out is not much and although you did have many of those symptoms of fatigue prior to treatment, what you are experiencing now still can be from the treatment drugs.  I would have to look for the information on the internet, but it takes a very long time for the ribavirn to get out of your body.  I know I had neuropathy (numbness in fingers and toes) for a good 6 months after treatment, but I am glad to say it did all go away.

Now it is possible that you may still have the fatique - in fact you probably will,  If your liver was "tip top" as you say, and you have not convinced me of that, it is highly unlikely that it was causing your fatigueand other symptoms.

frjiole

[Aaron57]

Frijole is on the $ ,

Riba takes apx. 6 months to clear out of our bodies after Tx ..

Hope it will get easier as time rolls by ...

Cheers

[brengunn]

Thanks frijole,

"If your liver was "tip top" as you say, and you have not convinced me of that"     A liver biopsy will be dispatched to your house post-haste!

"highly unlikely that it was causing your fatigue"

That's what I assumed, so did my doctor. I have since found out that symptoms like mine can occur without any noticeable liver damage. I can't really go into any dept about my liver because my brain won't hold that kind of info at the moment. The nurses have not really tried to tell me to be honest, it would be like trying to explain complex mathematics to a donkey. Completely futile.
  
I hate the fatigue with a passion but the brain fog is worse. I'd like to be able to read a book where I hav'nt forgot the first page by the time I get to the tenth.

[Livinontheedge]

Neuropathy  You Say ???   Really !  And can this happen during any time of tri tx with INC ???

[Mary4now]

All I can say is during treatment I could not vacuum my whole house 1100 sq. ft. at one time, 2 weeks after treatment, it was doable, 2 months after treatment vacuum, and wash floors,
as far as the memory goes I think that has been going for a while now....
good luck

[Trish77]

What is unclear from your posts and responses is if you had a biopsy prior to treatment and what stage of liver damage you were pegged at.  That shouldn't be too hard on the brain, it's a line on a biopsy report.  

It's too soon post-treatment to be expecting to be symptom free.  Some joint pains hang around for awhile after treatment - or begin after treatment in some cases, the difference being you had yours before treatment onset.  Have the docs looked at fibromyalgia or arthritis in various forms such as rheumatoid or osteo?  You're young but it's possible.  I do hope things will clear up.  Your doc may not have been totally correct though.  Good luck with this.

Trish

[brengunn]

I never had a biopsy because all the other signs were that my liver was healthy. I don't know what stage my liver was pegged at, they told me it was fine and I accepted that.
I'm not really expecting to be symptom free at this stage, any improvement would be a blessing as it would point towards a recovery. But there has been no improvement at all. I was virtually housebound before treatment and the same is true now.

[Diane12855]

I've been off of the tx for 6 months now. My first 3 months after tx were pretty rough but then it started getting better. My doctor couldn't offer any help either. It doesn't matter which drug caused the sx, you just have to understand that your whole body has been through a major shock, and each and every cell is trying to get back to normal, so it will take a while.

I finally had to accept that all I could do was to treat the symptoms and wait for it all to clear out of my system, and it did.

Hang in there.
Diane

[Dee1956]

Hello, I hope that you are UND/SVR
5 weeks is not very long, it takes at least 6 months or more to start feeling better.  The body has been through a big shock and it takes time before things begin to level out.  I would say it took me about a year or more but I relapsed so you should do much better
Good luck
Dorene

[brengunn]

Thanks Dee1956 and Diane12855,

Its the not knowing that really gets me down. Its quite scary thinking that life may be nothing more than confusion and an aching body and being unable to work. Really all I'm looking for is reassurance that, yes, I will get better.

But I'm quite keen to talk to someone who had symptoms which predated the treatment, to find out how they're doing, post treatment. Please leave a comment if you have had this experience.

Brengunn

[mikesimon]

I treated for 3.5 years AFTER I underwent liver transplantation.
I stopped treatment in June 2004.
I feel good - I knew that I would! So good - so good cause I got cured.

Mike

If I had a month or so I'd describe how I felt before SVR. Maybe later.

[frijole]

Mike you crack me up.  I can hear that song in the background!  Life is good, eh?

livingonethe edge -- I think the neuropathy is from the interferon, but it is fairly common.  Perhaps with triple therapy there won't be as much of it - as i don't think it starts until after week 24.  There was one member who had it severely long after tx was over and found out she was low on Vitamin B.  so I got tested for that but I was not low on Vitamin B.  It is just one of those things that happens over time --  I treated 56 weeks.  I think it was a good 6 months or maybe even a year before I realized it was finally gone.  It is possible for it not to go away.

brengunn -- If you can just get copies from your doctors, you can post the results here word for word -- then you don't have to worry about the comprehension part -- and we will spit our opinions back to you.  But I am just not able to determine the shape of your liver, and if you are cirrhotic ( which you could be even with normal liver enzymes) your liver may not heal totally with a successful treatment.

[JasmineT]

I have a had been struggling with memory, fatigue,etc. Too for sometime as well as other symptoms.  I had gone to the doc a number of times with stomach issues and complaints.  No diagnosis.  About 6 months prior to a diagnosis, I had found a common thread by searching the Internet that pointed to maybe some liver issues, like toxin build up or something.  I did a liver detox (bought at whole foods).  Not suggesting you do this.  I did not know I had hep c at the time.  I also started taking omega 3 supplements, drinking lemon water, and doing a few other liver healthy changes)  The detox actually helped me lot.  Not perfect but of course I have hep c so that would be a factor.    Just thought I would share this in Case it helps with ideas.  Hope you find your path to health.

[brengunn]

Thanks everyone for commenting, I'll do some more digging.

[nygirl7]

It's hard to know if it's your liver without a biopsy.  People can have normal liver enzymes yet have later stage liver damage.  Have you been tested for your thyroid since before your treatment, the interferon wiped out mine and I take synthroid to replace the hormone but still suffer from the chills that go down into my core too. But I have vast liver damage too.....