New Member Introduction

[Kamara]

Hello All, I am new to this forum so would like to introduce some of my journey. I was diagnosed over 20 years ago and started treatment approx 10 years ago. I changed medication combination twice due to significant side effects and then due to drug changes. Recently I changed from Sustiva+Raltegravir to Dovato.
Having experienced at least some degree of nausea, very low moods&fatigue daily in the past many years, i had accepted it as part of my life. I continued working full time etc. ...BUT, having been on Dovato for about three weeks now, I haven’t felt any of these! I hadn’t forgotten what it feels like to feel ‘well’
I hope it will continue working.

[harleymc]

Welcome.

Glad your new meds are treating you well.

[Kamara]

Thank you.

[leatherman]

Having experienced at least some degree of nausea, very low moods&fatigue daily in the past many years

now, I haven’t felt any of these! I hadn’t forgotten what it feels like to feel ‘well’

Glad to hear your new meds are doing so well for you.!!

Did you ever talk to your doctor about those side effects? Those are all related to Sustiva* and probably should have caused a med switch much earlier. Of course, it's all water under the bridge now; but it can be a reminder to others to always talk to your doctor about side effects. Most people have few side effects these days with so many different meds on the market.


* in disclosure, I had to stop sustiva after just 9 months back in the late 90s because the side effects were so devastating to me. I didn't have any other options for a while after that; but I learned to keep mentioning  side effects and to stay on top of learning about new meds. While the old adage is to not fix what isn't broken, the opposite is just as true: if it's broke, fix it

[Kamara]

Hello leatherman,
Thank you for your message and sharing your experience. In hindsight, I should have mentioned it to my team more directly. I think I had accepted these side effects because on previous medications, I was affected far worse i.e. efavirenz and it's horribly psychological effects and then I think ritonavir with which I had medically induced jaundice so was asked several times by people why my eyes were so yellow....then I switched to sustiva and raltegravir and decided to stay on it.
you are right in that it's important for others to be open with their teams and not just accept the side effects as normal. I am now keeping an eye out for anything out of the ordinary. Not having nausea is truly amazing!
Take care

[leatherman]

I was affected far worse i.e. efavirenz and it's horribly psychological effects and then I think ritonavir with which I had medically induced jaundice so was asked several times by people why my eyes were so yellow....then I switched to sustiva and raltegravir and decided to stay on it.

efavirenz = sustiva

Sustiva was really bad for me as was AZT and liquid/gelcap versions of Norvir.
thank goodness that are so much better medications available these days. I'm on Prezcobix and Tivicay these days and couldn't be happier. Glad your change is working for you!

[OneTampa]

Welcome Kamara.

Positive now over 35 years.

AZT was awful for me.

Been on low dose Sustiva and tolerate better for over 20 years.

Had a few other challenges but moving forward.

Best,

OT