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.

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
Mnem

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:

https://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.

https://www.google.com.au/search?tbm=isch&sa=1&q=low+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.

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.