Thursday, 5 October 2017

The cause of my severe abdominal pain was the HIV drug Tivicay

Guilty
Although it's listed as a "side effect" in one out of ten people, that is some kind of side effect to put me in Emergency in agonising pain. Trust me though to have that happen. Haven't had much luck with these HIV drugs to date because of the side effects.

Another thing is a lot of these drugs are fairly new on the market, so if I end up in Emergency the doctors on duty have very little idea about them. In fact the registrar who was seeing me was going through my meds and commented on the two HIV drugs I was taking, saying that every time he came across someone on HIV meds it was a drug he'd never heard of. To get more of an insight they'd have had to get the Dr in charge of Infectious Diseases at the hospital to come and advise. Not much chance of that at nearly midnight.

So I saw my HIV GP earlier and explained to him that after a week off the Tivicay the abdominal pain was almost completely gone. He was really pleased we'd found the cause. I said the same thing to him as above, that that was some kind of side effect to put me in Emergency like that. Plus Emergency didn't suspect that the pain was caused by the Tivicay and I took it for another two weeks before deciding that it may well be the cause, in constant and unrelenting pain.

So the list of HIV drugs that I can't take has continued to grow:
  • Truvada - mixed with the prescribed painkiller Naprosyn  causing an allergic reaction with acute kidney failure.  
  • Kaleetra - caused my heart to almost stop, depriving my body of oxygen for a time inflicting more damage to my kidneys, along with an amount of brain damage
  • Maraviroc - caused extreme and dangerously low postural low blood pressure (60 over 40 when the ambulance got me) along with fainting, shortness of breath, and severe migraines.
  • Tivicay - caused extreme and unbearable pain in my abdomen along with extreme wind. Distended stomach
So now I'm up to Isentress. In the very early stages yet so can't tell as yet if it'll be OK. I don't like the two pills a day though as it's hard to remember the evening one. Dr says there's a new version coming out next year though that'll only be one pill a day. 

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