Good to read that the Cabenuva injections are better suited for you even though the back pain is a part of it most of the time.
I had to fight against many doctors who thought i was just fooling them with my complaints of side effects months after starting the meds. It felt like an uphill battle most of the time. I get it though, most people react perfectly fine on the meds so they just assume that its your imagination or something else not related to the meds. I know just two other people over here in Holland who react just as badly to meds as i do out of 20.000 hiv patients here so its difficult to find support and understanding.
Even though Dovato seems to work out for me i'm still on high alert watching my body like a hawk for anything out of the ordinary. There is just no trust , for now at least. It helps that there are other people like me post their stories so i'm grateful for yours 🙏 thanks for that and have a great day !
Hi Jim,
Was just typing a reaction to byathread's post when i was alerted to your message.
Most of the Covid complaints are gone except for a burning sensation in my nose and my taste/smell is still gone. My doctor is going to call me today about that nose thing since that could be an infection.....but the taste/smell should return soon enough. I hope it does but with my luck i would not be surprised if i'm stuck with it 😒
Jim Allen:
--- Quote from: Quint1976 on March 02, 2023, 05:34:33 am ---Hi Jim,
Was just typing a reaction to byathread's post when i was alerted to your message.
Most of the Covid complaints are gone except for a burning sensation in my nose and my taste/smell is still gone. My doctor is going to call me today about that nose thing since that could be an infection.....but the taste/smell should return soon enough. I hope it does but with my luck i would not be surprised if i'm stuck with it 😒
--- End quote ---
Glad it's getting better and good luck with the doctor today. Hopefully, it's not an infection, and long term the covid issues keep subsiding for you.
Keep us posted and hugs.
--- Quote ---It felt like an uphill battle most of the time. I get it though, most people react perfectly fine on the meds so they just assume that its your imagination or something else not related to the meds. I know just two other people over here in Holland who react just as badly to meds as i do out of 20.000 hiv patients here so its difficult to find support and understanding. --- End quote ---
Glad Dovato is working out. Not trying to undermine your experience, but I also understand the Doctors position, plenty of clowns they have to deal with, not to mention the ones that claim silly things like HIV meds shrunk my legs or gave me herpes ;D So I guess that blinds them a bit to people with real issues.
TDF/TAF works fine for most, but I also know there have been more than two people in The Netherlands who have had extremely difficult times with TDF/TAF. Glad that finally switching away from it seems to be working for you. :)
Quint1976:
--- Quote ---Glad Dovato is working out. Not trying to undermine your experience, but I also understand the Doctors position, plenty of clowns they have to deal with, not to mention the ones that claim silly things like HIV meds shrunk my legs or gave me herpes ;D So I guess that blinds them a bit to people with real issues.
TDF/TAF works fine for most, but I also know there have been more than two people in The Netherlands who have had extremely difficult times with TDF/TAF. Glad that finally switching away from it seems to be working for you. :) --- End quote ---
I don't think you are undermining my experience Jim, you just have a wider field of view since you talk to more people than me. I respect your opinions so i hear what you are saying.
I am what they call a multi-responder when it comes to medications of all kinds. I always react in lighter or heavier ways so i'm kind of used to it. I get what you are saying in regards to the TAF/TDF but when you have a doctor who excluded many meds ,due to several concerns she had, your stuck with those combo's with the TAF/TDF. I've had horrible experiences with hiv meds, i'm an error in what are considered well tolerated meds for people. Those experiences are here to stay and i act on them. I am not a easy patient, i am a VERY difficult patient with good reasons to be one (which have nothing to do with meds) to protect myself.
For now the Dovato does its thing but i am only using it for 3 months now so anything is still open. Don't get me wrong i hope it does go well 😇
Quint1976:
Hi , back again with a little update…..
well i don’t know how to write this down in this message because i’m really depressed about my current situation but here goes… in one of my last messages i wrote that i’ve been dealing with some side-effects mainly the muscle and joint pains again. i talked to my healthcare provider about it a couple of times and in the end she said i only have two options. First i can accept that this is how it is and try and live with it, second choice i can stop taking the Dovato and live without meds since there are no viable options anymore. Since i could barely move about with having the muscles in my shoulders, back, legs and arms are hurting every day without stopping. Painkillers would also be a no go since my doctor thinks it won’t help all that much, especially not for my back.
After much debating i think i have no other choice than to stop the Dovato :-[ I told my doctor as much last week that i would likely stop and she was very annoyed by that choice. So much so that she basically said that it would be better to cut back on the check-ups to maybe once a year since in her words i am not a patient wanting medical help.
Anyway i am so down right now that i don’t know what to do anymore…why do i even bother
Jim Allen:
There are other treatment options, this is essentially only your second combination.
Anyhow, sorry to hear you and your HIV doctor have had a falling out and I presume it's the GP (Huisarts) that doesn't want to help with pain management, i wish you all the best.