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TOPIC: Still sick after cure!

Still sick after cure! 1 year 9 months ago #25164

  • Bern
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Hi out there!
I'm new to all this & desperate for answers...
I'm 12+ months clear of the virus but still sick.
Anyone out there in a similar situation?
I would appreciate any help, advice or just to know I'm not alone in this would be a bonus for me...
Please respond..
Bern
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Still sick after cure! 1 year 9 months ago #25165

  • DrJames
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Hello Bern,

I'm sorry to hear that. While it is possible that it is related to treatment, it's probably more likely to relate to there being something else going on.

This really requires a full and detailed consultation.

I guess the first thing is an outline of what you were like before treatment, during treatment and after.

Medical problems/

Medications/

What exactly is going on now?

Certainly, you do need a full set of routine bloods. Have any been done? Is so what, and can you share the results.
YMMV
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Still sick after cure! 1 year 9 months ago #25167

  • Bern
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Thank you Dr Freeman for your response.
My recent fibroscan showed F3 fibrosis (& M3?? Can't remember the other letter now...) & my LFT bloods still show elevated AST, ALT & Gamma GT enzymes. It seems that though virus free, my liver damage is still impacting my health. I also have PCT that getting rid of HepC didn't affect. I have a Bard Power Port in my chest for venous access as my high iron levels require frequent venesection & I have poor veins.
I was diagnosed with HepC in 2009 after suffering years of poor health :-
Chronic fatigue, chronic pain, weakness in limbs, confusion, etc, etc.
It seems that my foolish experimentation with Iv drugs (twice) gave me the virus in 1980 & I didn't know....
I understand that my liver is damaged but where do I go to prove that I am still sick?
I am currently taking 2 Targin 20/10 daily & between 2-6 Codeine 30 mg tablets a day to manage my pain. I have been on this regimen for over two years. My wonderful GP thinks my pain is coming from my lower back.
Other ailments that I have include depression, chronic fatigue & general malaise.
Basically, I am just as ill now as I was prior to successful DAA treatment in 2014/15.
Any thoughts Dr Freeman?
I would be grateful,..
Thankyou, Bern
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Still sick after cure! 1 year 9 months ago #25169

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Hi Bern,
Sorry to learn you feel poorly still after getting rid of the HCV. This makes me wonder if you might be taking other stuff that could be affecting your liver. Worthwhile for instance to consider these ones maybe: herbal medicines, alcohol, very high sugar or very high fat intake.
Hoping you get a break, you sound like you could certainly do with one #flower
Mnem
G2, infected maybe in 1971?
Diagnosed HVnon-A non-B 1980s, revised to HVC 1990's.
Treatment naive. Fibroscan & bloods all normal ranges.
Viral load 7million,
began Redemption trial4, 12-week generic Sof/Vel (Incepta) 2017. Week 4 UND, Week 12UND, SVR24
Thank-yous to my doctor for the script, to Jan at FixHepC for wrangling, and to Dr Freeman for courage.
Kia kaha e hoa ma!
Last Edit: 1 year 9 months ago by Mnem. Reason: clarity
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Still sick after cure! 1 year 9 months ago #25175

  • Bern
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Hi Mnem
Thanks for the reply.
I bought 24 weeks of Sofosbruvir & Daclatasvir in powder from from China. (Thanks to Greg Jeffries from Hobart...A true Legend!!!) High viral load, two failed interferon & ribavarin treatments (one lasting 48 weeks...Nightmare!) combined with Genotype 4 & I finished treatment in March 2016.
I am still clear!!
The trouble is that because these DAA's are so new, there is little or no info out there about how we cured survivors are medically post successful treatment. Particularly, there's nothing about Genotype 4 people....
So I am at a loss & foundering..
I do not drink, smoke, take illegal drugs or indulge in any dangerous behaviours. I am severely limited in any exercise therapies because of chronic pain (currently being investigated). I eat well & healthy. So, what's wrong with me??????
My liver is not Cirrhotic & hopefully my Metavir F3 rating will not progress further.
Surely I am not alone here???
Thankyou for replying...I am grateful for any advice..
Bern
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Still sick after cure! 1 year 9 months ago #25176

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Hello Bern,

So it sounds like your PCT is being managed. Here is a good overview of it just in case anything is not being done:

www.dermnetnz.org/topics/porphyria-cutanea-tarda/

PCT is not something associated with Hep C so we would not expect treating the HCV to change it.

There are over 1 million patients in Egypt with GT4 treated with Sof/Dac so more is actually known about it than any other genotype. Most of this knowledge is in Arabic but in talking to them their observations are the same as mine.

For asymptomatic HCV patients (and these are very few) there is nothing to improve.

For patients who just think they are asymptomatic (ie relatively low fibrosis) there are good and unexpected improvements.

For patients with significant fibrosis, or other things that have damaged the liver, the improvements after treatment are real, but less, and the recovery is slower.

The fact that your liver enzymes are still elevated indicates either some damage that can't be undone, or an ongoing process like the haemochromatosis.

With chronic pain and narcotics, we observe that they stop working over time unless you escalate the dose. After a year you will be getting about zero pain relief from them and will simply need them to feel normal. It would be worth looking at weaning the codeine for a start (this just gets variably converted to morphine) and won't do much in the context of Targin.

There is a phenomenon called hyperalgesia where we see long term narcotics down regulate your body's natural endorphin production meaning you feel more pain than usual for any given pain.

Assuming your pain is low back related the best solution is exercises.

www.google.com.au/search?tbm=isch&sa=1&q...+back+pain+exercises

You will notice here that the osteopaths, physiotherapists, orthopaedic surgeons and neurosurgeons all say similar things.

Non narcotic pain relief includes non-steroidal anti-inflammatories, paracetamol (acetominiphen), tri-cyclic antidepressants, gabapentin, pregablin, TENS and heat.
YMMV
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Still sick after cure! 1 year 9 months ago #25184

  • Bern
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Thank you Dr Freeman.
I appreciate you taking the time to answer my questions.
I will ask my GP about Haemochromatosis...I thought you could only have one iron overload disorder but then, how would I know?? It's worth checking out (Thankyou!!) And, if my liver is too damaged to repair, it still is better to be virus free & not be facing future liver failure! I understand that for sure. I can live with these things...I was just hoping someone out there was having similar experiences to me. I am hugely disappointed that I can't find anyone.
I have had this pain for many years & have tried many things including:- Tens, Physiotherapy, Exercises, Heat packs, Anti-Inflamtories (both Non Steriodial & Steriodial), Ultrasound guided Cortisone injections in both hips (that was NOT fun!), & I attended theOpal Chronic Pain Clinic in 2016. Many types of pain medication & this has ultimately led me to my current narcotic pain management regimen. I understand that over time, my tolerance to these drugs means they have reduced capacity to be as effective as they were. My pain is still there & my GP is now sending me to a Rheumatologist.
I am still sick. Fatigued, unwell, tired all the time.
But, I do have good days so that's something...
Many thanks for your time.
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Still sick after cure! 1 year 9 months ago #25185

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Hi Bern,

Haemochromatosis and iron overload are the same thing.

Although the exercise program looks simple I find people who do it regularly have less pain than those who do not.

It sounds like you may not have tried the adjuvant pain relief modalities. Pregabalin, Gabapentin and Amitryptiline. These certainly help some patients.

I have never been a believer in vitamin B12 injections but some Hep C patients have noticed that supplementing this helps. A good multi-B supplement (we call that Berocca here) would be cheap to try.

At the Rheumatologist have a word about antimalarials. They are indicated for PCT (check out that Dermnet link) and Rheumatologists are familiar with them so probably happier to do a trial.

Codeine makes a significant number of people feel sick. It won't be contributing much to your analgesia so reducing it would be worth considering.
YMMV
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