My health as I live with HIV and am 61 is pretty good. I do not count the inconvenience of a fused ankle from an accident, Osteoporosis, Kienbocks and other hand problems as bad health, just annoying niggles but ones that I can live with. The same with my constant diarrhoea that many with HIV face. Apparently my lungs, liver, kidneys, heart etc are all in very good shape so far. But one thing I feel I can no longer live with if avoidable is continuous fatigue and for no explainable reason. I go to bed tired, I sleep OK, I wake up tired and indeed feel most of the day as if I have a drug hangover and all I take regularly is my HIV meds and satins and I have tried leaving the statins off which makes no differnce. It really affects my life. I am told it is probably due to one of the 3 HIV drug I take. 8 years on, while many other unpleasant side effects went in the first few months, this is getting worse But in the UK there is no viable alternative that I am willing to take as yet.. I am holding out for TIVICAY (dolutegravir) to substitute for one of my meds that I think is causing this. It may not work as a side effect of this one is insomnia and right now I sleep OK. I just feel tied all the time and actually more than tired, totally wacked out and to the point I cant concentrate to read, sew, do crafts, find concentrating to drive difficult and my brain scrambled and by early evening so tired I have to go to bed so I have little social life. I was in bed by 7pm last night, if I do stay up sometimes to go out past 9oclock, I cant function for the next two days and most things do not start till 9pm, normal insomnia may be preferable to this. I coed prety wel when I just had this for 3 years a few years ago and even worked then full time. Right now I could no more work full time than I can read or drive far. But it is not yet approved in the UK. There is no counter indications to its approval as in the US and other countries it has proved to be a well tolerated drug with very few side effects and many who switched in the US to it from Efavirenz, which I think is the culprit have said it is like a veil being lifted and they got their life back. The reason is mostly cost. Not that it will be that expensive as they have done a deal and no more expensive than what I take now but the NHS does not want to add another HIV drug to the approval list, mostly due to cost. Come on NHS, I know and fully appreciate that it is great Im still alive and it is purely down to the meds and appreciate how lucky I am to have them, and free, as in some countries you cannot get them at all still or others people cant afford them. But I have taken this drug faithfully for 8 years now and I need to change to see if it is this causing it. While Im alive, I do want a life, to be able to do at least some of the things I enjoy.
Posted on: Tue, 03 Jun 2014 09:50:01 +0000
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