Am I undetectable, or aren't I???

I went for my regular 28 week check last Thursday & got some bad news.

2 weeks ago, whilst at the Manchester get together, my nurse phoned and told me that my 24 week PCR was undetectable. I was naturally relieved & we all celebrated.

However, at my appointment last week, I was told that my 24 week result may be positive after all, but my nurse isn't certain. Sandra (my nurse) had read my result to me off of the computer screen & reckons it could be that she read my 3 month result by mistake as this was undetectable, but that the 24 week result was actually positive at the time she gave me the result. She said that although she knows she can be dippy at times (her words, not mine), she was sure she gave me the correct result. If she isn’t to blame, then it’s got to be that the laboratory technician entered an incorrect result & then went back into the system & changed it. Because Sandra is unsure, I had both qualitative & quantitative PCRs done again last Thursday to find out one way or the other if I’m undetectable or not.

Shropshire PCR tests have to be sent to Birmingham & results usually take 2 weeks, but with Christmas fast approaching, I may well have to wait for the result until my next appointment on 3rd January. Nice Christmas present for me eh? (Not!)

Our PCT policy is to withdraw treatment from people who are detectable at 6 months. So if this latest PCR comes back positive, they may well make me stop treatment. Sandra can argue that my taking steroids during treatment might have adversely affected the outcome & that I should withdraw the steroids & stay on treatment for a further 48 weeks to give me a fighting chance, which would in effect mean me doing 72 weeks treatment in total (just as I was beginning to see the light at the end of the tunnel too!) If that argument fails & my treatment is withdrawn, then I can either try registering for upcoming trials in Birmingham or wait another 4/5 years for new drugs to come out on the market.

The scariest thing about this is that I have no idea how this is going to affect my arthritis or what treatment I'll be able to have for it. I've noticed it worsening lately, particularly in my hands which are worrying me more than I'd like to admit. I'm due to see my rheumatologist on Friday 14th December. I shall tell him about the problems I have with my arthritis & the Hep C treatment & will tell him that he’ll just have to find a drug I can take to treat my arthritis. Looking at it logically, whether I end up continuing or discontinuing treatment, I need to have treatment for my arthritis, which is my foremost concern. After all, it’ll probably be the arthritis that effects my life more than the Hep C & may even end up killing me, which the Hep C probably won’t.

When I walked into clinic & Sandra told me to sit down, I just knew something wasn’t right. Nothing could have prepared me for this news though. It came so unexpectedly that I broke down in tears in the clinic. I guess I'd never contemplated treatment failure - I was going to do the treatment, clear the virus & then start long-term RA treatment, simple as that!! In all honesty, you I couldn’t have approached such a severe treatment any other way.

I was on my own in clinic & was planning to go straight to work afterwards as I had a big presentation to make to all the staff. Sandra did ask if I wanted her to call in sick for me – but going home & moping would have been the worst thing for me to do. So instead, Sandra left clinic with me & took me off for a coffee & chat. I went to work, never told anyone about my bad news & just threw myself into my working day. Surprisingly, my presentation went very well & I found being at work quite therapeutic & distracting from my personal thoughts!

I only told one person that day. Steve is a treatment relapser who I've met a few times now. As my luck had it, it turned out that he was working in Wales that day & so, he made a special detour on the way back home to drop by my office for a coffee & chat - how nice of him was that? It did me the world of good talking to him – he helped me start getting my thoughts into perspective & by the time I got home, I felt calmer but had an absolutely splitting headache (maybe through the stress of the day!)

I decided that I would take a couple of days to think it all through before telling anyone else as I just didn’t feel that I could face all the questions & sympathy that soon. Instead, I took consolation in the Hep C forum that I use. Everyone was nothing short of brilliant with me & all of them helped me find my optimism, which had evaded me with Sandra’s words. Some of they're comments made me cry – but then I think I needed to release a bit of pressure build up in my heart & mind.

I don't often think "why me?" as that's not my style (never has been) but sometimes, like then, it's so hard to keep a positive attitude. I've had to fight so hard for the last 15 years to hold on to my health & my sanity with the arthritis & sometimes it seems like the harder I fight, the higher the mountain gets!!

I can deal with not clearing the Hep C - that isn't my biggest concern. My arthritis is my main concern, always has been. That's why I never pondered over treatment, because I was told that if I don't clear the Hep C, I wouldn’t be eligible for RA disease modifying drugs (DMARDs). My life expectancy with arthritis isn't fantastic anyway & without DMARDs, it may well reduce, so this has brought home a sense of my own mortality, if you can understand that?? I know my arthritis is worsening - I can feel it every day - so you see why clearing this bloody virus is so important to me.

It’s been 6 days now since the bad news & I’m definitely starting mentally to get back to being my old self now. I've always been quite an optimist, love a challenge, but always try to set achievable goals & try to find something positive in every situation - and amazingly, I have done this time too……

I am hoping for the best scenario i.e. that it's all a mistake & nothing will change, but am preparing for the worst at the same time. I'm not wasting time thinking about how I'll treat the Hep C if I'm taken off treatment (I'll face that one if my results come back positive). Instead I'm concentrating on what can be done for my arthritis as this is my primary concern.

This has led me to start researching some possible treatments that I can take whilst HCV+ / on treatment & it although there’s precious little research available, it does appear that there might just be one or two possibilities. So I shall print off the research I've found & take it to the rheumatologist when I see him on 14th December. I will have to tell him what’s happening with my Hep C & have every intention of refusing to leave until he at least agrees to try me on some kind of treatment!!I have a 15-year long relationship with my rheumatologist; he knows I'm not a drama queen & don't exaggerate things, so when I tell him how bad I am, I know he'll believe me. My problem will be convincing him that it's the arthritis & not the treatment that's to blame. But then irrespective of that, I'll need to start RA drugs sooner or later anyway, so why not sooner??

I have since talked to my family & a few friends about it & got a good, supportive response & think I've come quite a long way in the past 6 days. The optimism is coming back as I've started to look at the situation more logically & put things into perspective. I've got lots of other things going on in my life at the moment which are keeping me busy, so not much time for self pity anyway (not that I want to visit there anyway!!)

I'll phone Sandra next week & see if she can chase up my result for me - even if I'm positive, at least I'll know what I've got to deal with then!