emotional well-being on treatment. PART 2

MANAGING EMOTIONAL SIDE EFFECTS ON HCV TREATMENT:

PART TWO. PATIENTS EXPERIENCES.

for broader over-view, please read Part One first. (There you will also find links to more background information and to support options) Many patients will experience at least some occassional milder mood changes; having a realistic understanding of wha to expect during treatment does help.* Some people will have more intense reactions or go through periods when they do; these articles are to help understanding for them as well as their family or friends. .

PERSONAL EXPERIENCES
Individuals stories, and thought to hold on to if ever you do “loose the plot” and wonder what the heck is going on with you. I did say “weird and vacant.” Vacant was how I felt when i was: volatile, anxious, confused, angry, neurotic and tearful. I add this note as a direct description of my own experience - and a sort of anchor, to help you remember; No blame, no shame: remember it’s the meds and chemical reactions, as well as normal human responses to illness and struggle. Hold on to humour and as many routines as you can, to stabilise and normalise your days. You will emerge, stronger, wiser and more resilient than ever ..... and I hope: virus –free. Here is what some other patients said when asked "what were the most difficult side effects of treatment?" (many patients have only mild reactions in this area: others experience it more, as did these people.)
"The mind stuff is certainly the worst. The feeling of being absolutely useless at everything I once took for granted; like being able to process information. This and the insomnia which makes it 100x worse.“bugs”
(note: due to secondary health issues, at one point this person had to choose whether to cease or to continue treatment, when chances of successful outcome were looking like they were seriously reduced. Despite having suffered the “Weird” effects, this person chose to continue: stronger than ever before and determined to fight the disease.)
"I have done two treatments, one without Ad’s and one with. I thought I was fine with the 1st treatment, but in fact I was not. The interferon had bought and booked me onto the crazy train - and I was not even aware I was going for the ride. The 2nd treatment, with Anti-Depressants, was still challenging- emotionally and mentally. ut at least I had a footing and base to keep things together.

Some folks do just fine without the Ad’s (but in my opinion ) they could be on the train and just don’t realize it. I have yet to come across anyone in all my time in Hep C circles, that wasn’t affected by the Interferon in some way mentally. For some these are just subtle changes; but for some these changes are drastic. Again this is just my opinion but I believe they are a very important component to treatment and should be started before Tx begins to get the full affect. I’m also of the mind that the pre-treatment stress and anxiety calls for anti-depressants, for some folks as a norm. (M. G.)"
(this patient did not clear the virus, but continues to support others through effective management of treatment, to maximise chances of full recovery.)

"The worst side effect is the mood swings caused by Interferon Alpha.Some experience full-on depression, but with me it was full-on anger and impatience .This manifestation didn't much hurt me, but everyone around me , like my family (my immediate one), who had to endure hell for the weeks when I denied I had an anger and impatience problem on treatment. .For the whole of my 2nd treatment , I managed the brain chemistry changes with Citalopram, and fluctuated between 20-40mg per day.However, my 1st treatment was different, on this treatment, I held-out until week 24 without an SSRI and my wife (carer) and daughter suffered horrifically. It was at week 24 that I was frog marched to the GP, by my wife, for some SSRI's , apparently I was a puppy-dog within 48 hrs of taking them .So why is uncontrollable anger and impatience the worst side effect of HCV Combined Therapy?Because, if left to go untreated (unmanaged) , it can destroy a long-term marriage, relationship between partners and destroy a parental relationship .In my case, it did not result in this terrible outcome to treatment. But I've heard enough patient stories to now realise that it happens very frequently" .Ross xxx
(note: 1st treatment did not succeed for this patient. Despite his experiences of mood reactions described, he chose to undergo treatment a 2nd time, in a commitment to clearing the virus. On 2nd round, happily he won the battle. For info re anti-depressants, please see links in Part One)
"Depression, Anger, Anxiety and generally being out of my mind. I got so emotionally unhinged at the end that I looked like and acted like those weird crazy people you avoid if seen in public. I knew it, but could not stop it. I just had to roll with it because I was not going to stop tx. This was with taking anti-d's. I shudder to think how horrid I would have been without, as I was horrid enough with them." Peek.
(note; this patient has done treatment twice and has elsewhere stated that had she not cleared the virus; would do treatment again, if she had to...Fortunately she is now post-treatment, virus free and recovering well. )

An overview of outcomes for people I have known through support forum and internet connection: Of those who have completed treatment and cleared the virus .... despite the more unpleasant aspects of mental or emotional sides .... none has said that they regret undergoing treatment.
Of those who unfortunately did not clear the virus, many have continued and done treatment a second time, even those who found emotional reactions challenging: they were prepared to ride these side effects through again in order to beat the disease.
Even where outcome of clearing virus completely was not successful; viral load and liver damage, as well as other Hep C symptoms, are likely to be greatly reduced in any event; thus minimising health problems and improving potential quality of life and longevity.

For those patients who did not clear, although there will have been initial feelings of anger and resentment at the experience of treatment; but the longer-term outcome, once they have recovered from intitial shock, is eventual acceptance. And recognition of the alleviation they will have achieved. And so, generally , without regret; but, instead, glad that they had undertaken treatment - and often waiting for an opportunity for re-treatment or new trials, in determination to be clear of HCV. I have read a comment by one person who was an exception to this trend; sadly this person had experienced other very complicated personal circumstance during and just after treatment.

This closing thought is offered as those making the choice to begin treatment, and to those experiencing he more difficult periods. Keep fighting ... HCV can be a very serious disease and so the battle is worth it. Wishing you peace, courage, as smooth a ride as possible, good support; and good health, good living!
xxx eva day

* please see separate article (to be posted soon) re studies showing how realistic expectations of treatment, before commencing, can make a great difference to successful management of treatment.

** also, to be posted in future; notes specifically discussing experiences of temporarily reduced concentration, general thinking skills and recovery of cognition, post treatment.