POZ Community Forums
Main Forums => I Just Tested Poz => Topic started by: Ruskidude on December 04, 2018, 09:42:42 am
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Hi all,
So I am recently diagnosed, less than one month. I was prescribed biktarvy almost immediately. I waited a little before I started as it's giving me a lot of anxiety, the status and idea of life long medication.
I have taken 3 doses so far and no major side effects. The first day nothing at all. The second day I felt like I was having a tiny bit of acid reflux and mild hot flashes. The following morning I noticed mild soreness in my legs. Nothing too bothersome. Later that evening when leaving work, I noticed slight soreness in my shoulders. The third dose last night, a little less acid reflux and a little less of the hot flashes. Both barely noticable. The leg soreness is still present. It's almost like I can't tell if it's in my hips and knees or whole upper leg. It's mild, but there. Almost like heaviness in my legs. Shoulder soreness seems to have subsided. Today while driving, I feel like I was a bit more sensitive to sunlight. Eyes slightly burning and skin felt sensitive.
I just want to know if any of this is normal? Or what others may have experienced? Any comments or opinions are appreciated!
Thanks!
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Sorry to hear about the diagnosis.
I've moved your thread to "Just Tested Positive" so you have an introduction thread as a new member. Perhaps you can fill us in on some details like what your labs CD4/VL are like?
I waited a little before I started as it's giving me a lot of anxiety, the status and idea of life long medication.
I have taken 3 doses so far and no major side effects.
Regarding the meds other than perhaps a brief settling in phase, if noticed at all, you should simply not be anticipating any issues/side effects.
Not uncommon is to be hyper-aware when newly diagnosed & starting meds, meaning too focused on every twitch or feeling?
Anyhow end of the day if you happen to be the odd one out and experience side effects, you can either manage them with help of your doctor or if not switch to a different medication that suits you, but don't be anticipating issues, worrying about it or expecting other peoples issue to be yours ;)
Do keep your doctor posted if you are feeling ill of course, like you normally would.
Take it easy
Jim
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I’m in the same boat. Dx early November and about to start Biktarvy. I have concerns too but my Dr. said it’s very good and she has been transitioning her other patients on to it.
She said two years on Biktarvy (3 drug combo) and if everything looks good, she would switch me to Juluca (2 drug combo).
I’ll keep you posted...
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two years on Biktarvy (3 drug combo) and if everything looks good, she would switch me to Juluca (2 drug combo).
Curious about this... Why would a switch to a 2 drug combo be made? Whats the advantages of
this?
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I’m guessing because it is two and not three drugs - less toxicity.
...snip
JULUCA is indicated as a complete regimen for the treatment of human immunodeficiency virus type 1 (HIV-1) infection in adults to replace the current antiretroviral regimen in those who are virologically suppressed (HIV-1 RNA <50 copies/mL) on a stable antiretroviral regimen for ≥6 months with no history of treatment failure and no known substitutions associated with resistance to the individual components of JULUCA. JULUCA should be taken with a meal.
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Thanks for all the replies. I didn't see this till now. Kept checking my email notifications and didn't get any so I didn't log back in. I didn't realize there is a notify me of replies option. Oops 🤷♂️
So today will be dose number 5 for me. I think I am hyper aware and just filled with anxiety. All of the side effects are truly minor and might just be psychosomatic. The body soreness went away as of yesterday. I still did have the feeling of being hot. Almost felt like a mild sunburn when brushing up against things. That only lasts for a couple hours after the dose. It's almost barely noticeable. My eyes definitely feel dry at times. That's started yesterday and a little today. And then I just get random mild nausea spells. Like I was driving and suddenly just felt a bit off. Again, I don't know if I should attribute that to the anxiety or biktarvy. I have noticed that for me taking it on an empty stomach seems to be better. I took it an hour after eating a couple times, once right after eating, and once when I didn't eat most of the day (because I was busy).
As far as labs, when first diagnosed VL 1560, CD4 720, CD4% 31, CD8 756, CD8% 32, CD4:CD8 1.0
I'm going in January to get labs drawn again. My doctor expects that I would be undetectable within a week after starting meds and surely in January.
So I work in the healthcare field. I know my labs are great, blah blah blah. But at the some time I'm so incredibly scared. Some of my fears are probably irrational and I just need to adjust to the new me, but it's not easy. Literally any twitch or feeling and I'm thinking it might be something. Like do I have lactic acidosis? Even though I'm not symptomatic...or have just one of the potential symptoms in a mild form. I just can't get these thoughts out of my head.
She said two years on Biktarvy (3 drug combo) and if everything looks good, she would switch me to Juluca (2 drug combo).
So I'm a bit curious about the switch too...and specifically why two years? Juluca can potentially have less long term side effects, on the liver and bone. Supposedly biktarvy as well.
I’m in the same boat. Dx early November and about to start Biktarvy.
When are you starting biktarvy? Why didn't you yet?
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Some of my fears are probably irrational and I just need to adjust to the new me, but it's not easy. Literally any twitch or feeling and I'm thinking it might be something. Like do I have lactic acidosis? Even though I'm not symptomatic...or have just one of the potential symptoms in a mild form. I just can't get these thoughts out of my head.
I think I am hyper aware and just filled with anxiety. All of the side effects are truly minor and might just be psychosomatic.
Yeah, pretty common being newly diagnosed, it can be a lot to mentally digest. Your only 5 days in so try to relax, not to focus on every twitch you normally would not have noticed and give yourself in a few weeks time to settle in.
You will be grand.
Jim
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Why two years on Biktarvy before switching to Juluca? Not sure - she’s the ID doctor, I’m an economist. ;) Guessing she takes a very conservative approach.
And she wanted all my blood work back before starting me on anything. And my insurance company required a mail order pharmacy for they “specialty drugs” so that had to be worked out.
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@Jim - thank you! I'm trying and I was a hot mess the first week, then almost forgot about the status...until I finally decided to take the first pill. I think that being a healthcare professional makes it even worse, paying attention to everything. I took my 5th dose yesterday and seems like I didn't have any side effects at all this time. Only thing is that I just feel slightly off. Like a little daze. But nothing too noticeable. I also had a crazy day in general yesterday and didn't get much sleep, so it might just be that.
@Texas - we sound like we're in the same boat. I got diagnosed the day after you (based on your profile). Also had to get the preauth and mail order pharmacy. So annoying! Just an FYI, if they make you try to pay a copay, use the Gilead card. It will cover the entire amount. My copay was over $800. It's free to register online. (If you didn't already know).
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Thanks Ruskidude -
Lucky my co-pay is only $150 - and the Dr. gave me the Gilead card so out of pocket will be zero the entire year.
Stay in touch, ok?
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Definitely! Keep me posted on how the meds are treating you. Yesterday was your first dose?
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Just my opinion, it sounds largely like anxiety. It seems like you went into it expecting something bad to happen and you're waiting for any negative thing to happen to attribute it to Biktarvy.
Since the Emtricitabine and Tenofovir have been known to cause digestive issues in the first week or so, I say give it a month and see how you feel.
I'm sorry that you received the diagnosis. It's a lot to adjust to all at once. Keeping a positive (no pun intended) mindset really does make a difference in coping outcomes.
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@mightysure- you're probably right. When I first found out about my diagnosis...I went from being totally fine to instantly sick. I developed a cold that same day. Headaches, shortness of breath, etc. Lost 10lbs in that week. It was all anxiety. I couldn't sleep or function. Was in like a daze all day. Sort of waiting to wake up from a bad dream. Then I sort of snapped out of it. Received the drugs and was terrified of starting them. I'm doing better today. Taking it one day at a time. Trying to keep myself busy with things so that I'm not googling various studies. It's just a lot to process. But yes, keeping a positive mindset is important. I'm trying my best to do that.
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Ruskidude -
I was thinking yesterday would be my first day but there have been hold ups with my insurance - they want ‘charts and labs.’ The Dr. was to send those over today via fax. Upon receiving they will approve and overnight the meds to me.
The waiting is killing me - I mean that literally! At least that’s how I feel. :(
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@texas- Yeah man, I know how you feel. I went through the same thing with my insurance. It was scheduled for overnight...and then I would get a call that they needed something else. Happened like 3 times. About 10 calls later, I had the meds. In the meantime, I was freaking out. Felt like the world is closing in on me.
It arrived in a discreet white bag, but once I opened it, it gave me terrible anxiety. I threw it in my drawer and sort of forgot about them (purposely) for almost 2 weeks. On 12/1 I finally took the first pill.
The insurance can almost never deny you the meds. The doctor will do preauths, medical necessity forms, etc. You WILL have your meds soon. And truthfully a few days will not affect your health. Only your mental health from the waiting. Anxiety is a killer.
What worked for me was just keeping busy and going about my life the same way I did before my diagnosis. I went out with friends, hosted Thanksgiving, etc. I also found a support group that has people similar to myself. If you haven't tried something like that, I strongly recommend it. I made a few new friends and saw that life does go on.
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Thanks Ruskidude...I needed to hear that.
I don’t have a group - and haven’t told a soul aside from my Dr. I’m wrestling with that now.
The fear and anxiety breeds isolation - I get that. But it’s just so overwhelming.
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We sound very much alike. Disclosure is very personal. I have not disclosed to any family or friends, nor do I plan on doing so. Ever. I think it is completely unnecessary. Yes the support would be great, but at the same time...I don't want any pity nor do I want my family to worry.
When I first got diagnosed I swear I couldn't breath. I went to one of my colleagues so that they could listen to my lungs, everything was clear. Vitals were normal. Anxiety was insane. I started desperately looking for people to talk to. People that are living with this.
I have only disclosed to people that have the same status. Talking to people that have this, live with it, thrive with it...that's helpful and therapeutic. The face to face, to see that people are healthy and living a totally normal life. It was like a breath of fresh air.
We will be ok!
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Ruskidude -
I don’t think I’ll ever tell anyone either - my parents are passed, and my kids are grown for the most part but I have no intention of telling them ever.
I’m so thankful to have this outlet. Having folks like you to communicate with makes such a huge difference.
Luckily I have had board meetings today to keep me busy.
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I agree, this is helpful for sure!
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I'm on Biktarvy for almost 2 months now, no major side effects. A little tummy discomfort in the beginning, but nothing major.
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Almost all of my side effects (all minor) went away for the most part...except for my eyes. I feel like the medication is affecting my vision. My eyes feel sensitive, dry, and giving me a bit of a headache. Hopefully this will go away soon.
Anyone else experience this?
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;)
Glad you are starting to feel better and not overly concentrating on your body. Give yourself a few weeks and you will be taking the pill like a daily vitamin doze without a 2nd thought.
About the eyes ... Look what would you have done 6 months ago ? :) Treat it or see the doctor.
Jim
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Haha thanks Jim! I'm trying my best to adjust. I'm going to the doctor in January. I'm giving my body some more time to adjust. The eye stuff is annoying, but not unbearable.
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I took my first dose of Biktarvy this morning.
I’m ‘all in’ now.
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Day two.
I noticed zero side effects on day 1.
I read were the most modern meds start working immediately and can have a 1 log reduction in VL in a matter of days.
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Glad you started treatment, outside of any settling in you should not be expecting any issues. You have started the journey of "Pop a pill and day and live your life"
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Thanks Jim!
Know you make a difference!
And Ruskidude too!
You have all helped me so much!
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Ok - I have been on Biktarvy a week now - 7th does today.
No discernible side effects I can conclusively blame on the meds.
My dry annoying cough I got right after my exposure is all but gone.
I get a little tired in the late afternoons - but I think that’s more just coming to terms with everything.
Making progress!
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I have been on Biktarvy for 2 years now since I was on the study. I gained a lot of weight 30-40lbs or so and my cholesterol went up. I started taking statins as well during this time. My cholesterol was elevated before but I think it went up even more after diagnoses. My dr said some other people did not gain weight so he attributes my weight gain to not being active enough. Recent studies point to TAF as well contributing to weight gain. That said I also stopped going to the gym due to depression related to diagnoses (not that I went that much before but I did go more than now). My dr does not seem to think my depression is serious enough to warrant anti depressants and wants me to go to the gym instead but it is hard to start it again. I am looking to switch to doluetgravir and lamuvidine combo once that becomes available to eliminate TAF. Other than weight gain and tingling sensation that I described here on boards when I first started taking it I do not recall other side effects
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Day 9. All is good.
My cough has all but disappeared.
Rode my bike for the first time in three weeks - just 30 ish miles but felt good.
#livingapositivelife
#campagnolo
#tibikes