Monday, 21 April 2008

A Mixed Bag

Well the last week or so has been a bit of a mixed bag of news and events. No significant sides from the meds apart from a degree of fatigue, general lethargy and a overall feeling that my body is becoming saturated with these chemicals. The riba rash was becoming a bit of a problem but a visit to the GP resulted in steroid cream, anti-histamines and a general moisturiser. I've used the steroid cream once and then just the moisturiser...seems to have done the job.

On tuesday, I found out my genotype at long last....Genotype 3. In many aspects this has got to be good news; certainly a lot better than the geontype 1 I had been preparing myself for. Firstly if all goes to plan the treatment length will be only 24 weeks...worst case scenario is that I dont obtain UND by week 4 and then I'm 99% sure my consultant will increase treatment length to 48 weeks. Secondly, genotype 3 is often reported to be easier to treat than genotype 1. I have my doubts here and believe this is an oversimplification. Genotype 3 is certainly easier to treat if you get the magical UND by week 4. If you dont and have borderline cirrhosis like myself then you may as weel be looking at a genotype 1. I guess there is little point worrying about all this at the moment; just have to wait for the 4 week PCR.

My blood chemistry is the other critical aspect at the moment. I've just had a long conversation with my consultant before he jets off to Milan (43rd EASL conference) and he has left me in no doubt as to the precarious position I'm now in. I have begged and begged for rescue drugs but unfortunately these have not been forthcoming yet. I think he will eventually prescribe them but he would rather try a slight dosage reduction first. A point I vehemently disagree with.
The bloods of most concern are my haemoglobin and neutrophils. My haemoglobin levels have dropped to 9.5 but despite these low values I feel surprisingly OK. A little bit faigued by the afternoon and down-right knackered by mid evening but still living a fairly normal life. I have few other side effects from the anemia (no high pulse rate or palpitations) so neither myself or my consultant are too worried. He has recommended that I drop my riba dosage to 600 mg/day to which I replied "bollox". I have voluntarily reduced to 1000 mg but am not going to drop further until my haemoglobin drops below 8.5; at which stage I will lower only to 800 mg. Of more concern are my neutrophils levels which have dropped to 0.75. This is getting close to the danger zone but more worrying is the fact that they have got so low in only 3 weeks. Another week or so and they could be down below 0.4.

In the absence of being given rescue drugs I am going to have to play a fairly dangerous balancing act here. I think I may get my bloods drawn a day early this week so that I have the results before I have to do my next interferon injection. At least then, any action I take will be an educated risk. My consultant has recommended that if my neuts stay above 0.7 then to take the full 180 mcg interferon injection. If they fall to between 0.5 and 0.7 then to cut my interferon dose to 135 mcg and if they have fallen to below 0.5 then to skip an injection. I dont think I have much choice but to push these limits a bit lower. In fact I think I will inject the full amount; the only exception being if I fall below 0.4 and then I will really have to think about things long and hard.

My 4 week PCR blood will also be taken this week and the results are going to be critical. My consultant is totally on the ball and understands the importance of these results both in future treatment management and the possible use of rescue drugs. He says we can have the results with 10 days....now I assume that will be 10 working days!

Well, no apologise for the boredom level or lack of humour in the above. Decisions made in the next few days regarding dosage and tx management may have a profound effect on my future and chances of SVR..... and thats all I thinking about at the moment.

3 comments:

Changedit said...

Hey Chris, keeping my fingers crossed for no more drops in your bloods. It's annoying to hover around those levels and have to do a balancing act. I am sure though, between you and your consultant you will make the right decisions.

Good luck
Fishy xx

Chris said...

Thanks Fishy....fingers crossed hey
chris

Anonymous said...

Your levels are still copable with and you're not doing too badly at all. Hang in there Chris, don't let if get to you before you need to. Like I said, my neuts were 0.4 and they didn't even mention rescue drugs. I did lower my meds and I still got undetectable at 12 week PCR. And I'm geno 1.
We're rooting for you hun

Bean xx