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Author Topic: Finally decided to participate  (Read 10926 times)

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Offline Dogman

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Finally decided to participate
« on: August 20, 2023, 07:50:51 pm »
Hi All,

I was diagnosed + Oct in 2022. I have been following the forums, and a couple of recent posts have struck a chord ( Charles M particularly ).

Initial DX
CD4 170
VL 100,000
Started Biktarvy 2 days later

3 Weeks Later
CD4 260
VL UD

6 Months Later
CD4 430
VL UD

Most recent 10 months after DX
CD4 435 Ratio 17%
VL UD

Have struggled enormously with the DX, having always known how to prevent it, do not know what I did to get it. I have never been unwell, I had no 2ndary infections, yet am filled with this sense of dread. Im late 60's, in pretty good overall health, cholesterol and weight have both gone up since being on the meds. Every time I look at my chart and see "Disease", my mind goes to "I'm diseased", even though I generally feel perfectly fine. I would love to talk to someone in a similar situation, I have no support system other than my doctor.

Offline leatherman

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Re: Finally decided to participate
« Reply #1 on: August 20, 2023, 08:42:45 pm »
welcome! sorry you had to find us but glad you did find us.

The first few years are always the most problematic because you have to deal with meds, maybe initial illnesses, and coming to grips with this diagnosis. I know it's a trite saying but things really do get better. Of course, I can get away with saying that because I have lived with HIV for 40yrs now. After a few years, you'll see that things did get better and that living with HIV wasn't in any way as horrible as anything you're imagining right now. You're going to find out that you're going to lead the same boring or exciting existence you already were. :)

Since you clearly caught this at an early time; you're in good health without illness from the HIV infection; and have already gotten cd4>400 and UD this quickly, you sure shouldn't be feeling dread. That's all excellent news! Not losing your health over HIV is a great thing! Any day you aren't in the hospital is a great day.

As far as feeling "diseased", try not to give HIV that kind of power. It's a retrovirus you acquired that you have to treat now. HIV doesn't make you not you; nor really changes much to your life. I mean I'm in my early 60s, you're in your late 60s, weren't you already taking some sort of medication or supplement every day? ARVs aren't any different than that.

If there's something specifically troubling you, let us know. There are plenty of people that have experiences and can chime in.
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Tonny2

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Re: Finally decided to participate
« Reply #2 on: August 21, 2023, 07:17:02 am »

           ojo.           Welcome to the forum… well, you don’t know how you got it, if you not do drugs sharing, needles so you got it Xavi and sex at some point in your life, maybe around five years before your diagnosis according to your numbers. Everybody’s different, some people shows opportunistic infections until your cd4 is very low in my case I had 20 cd4, i got PCP… you should be glad that you didn’t get to that point to deal with an opportunistic infection. I’m glad that your treatment is working now, you had to start learning how to live with HIV so you can live a normal life… you are not alone anymore, we are here for you. All here, we are leaving just with a virus which it’s under control when taken our “ vitamin” as prescribed… please keep us posted and best of luck
« Last Edit: August 21, 2023, 07:27:21 am by Jim Allen »

Offline Dogman

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Re: Finally decided to participate
« Reply #3 on: August 21, 2023, 02:50:01 pm »
Thank you Leatherman and Tonny2. I do appreciate your valuable insight and input. I have read both of your posts to others and your own stories in depth. Tonny2 - never done drugs of any kind and always thought I was being safe/careful but cest la vie. I am glad I didn't have any opportunistic infections as well, I dare say had I gone much longer undiagnosed the story would be very different. Thank you though for taking the time, it is appreciated.
Leatherman, thank you - your stories that I have read over the past year put a lot of things into perspective, and while I'm still struggling with my new reality, your words are of some comfort. I probably just need a good kick up the ass.
I saw my doc today for a general follow up, he has switched me to Dovato, which I start tomorrow, I am anxious, new drugs blah blah, as I tolerated Biktarvy pretty well, apart from minor facial fat loss, which being the nervous nelly I am has caused me a lot of anxt, I'm hoping the change may stop any further loss. Thank you again for your input and wisdom. I wish you both well, with much appreciation.

Offline leatherman

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Re: Finally decided to participate
« Reply #4 on: August 21, 2023, 05:56:00 pm »
he has switched me to Dovato, which I start tomorrow, I am anxious, new drugs blah blah, as I tolerated Biktarvy pretty well, apart from minor facial fat loss, which being the nervous nelly I am has caused me a lot of anxt, I'm hoping the change may stop any further loss.
What did your doctor explain as reasons for changing meds? It seems pretty silly to change to something else when the Dovato got you to UD within a month. Have you been having some sort of negative side effects? I only ask because after so many years of ARVs, I'm always of the opinion that if it isn't broke, don't fix it. ;) The best reasons to change meds are usually to reduce negative side effects, save money, or reduce the amount of pills. You seemed to be having super results with Biktarvy and really didn't need to change meds.

Also what did your doctor say about facial fat loss? Modern HIV meds, especially any of the one-pill-a-day regimens, just don't cause that kind of issue any more. Thankfully, lipodystrophy (excessive fat in the belly) and lipoatrophy (facial wasting) are issues left in the early 2000s. If you think you're really having some issue like that, I would suggest you definitely talk to your doctor about what might be causing that and how to go about measuring it and actually diagnosing it.
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Dogman

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Re: Finally decided to participate
« Reply #5 on: August 22, 2023, 03:47:10 pm »
Hi Leatherman,

The reason for the switch is because my current doctor believes 2 medicines in Dovato vs the 3 in biktarvy is better in the long run. He did say, he will take measurements after a month and if anything looks out of whack then I can go back to biktarvy. I did not have any side-effects from biktarvy, initially mild nausea and sleeplessness, but they went away within a few weeks.  You are correct, my results on biktarvy, despite my low CD4's, were met with a lot of surprise by the diagnosing doctor - he said he'd normally expect these results after 3 months, not 3 weeks. 

Regarding the facial fat loss, my first doctor (diagnosing doctor), when I noticed and told him about 2 months into my treatment that I had some loss in my cheeks, his response was "nothing I can give you will be any different", despite having told me when I started, that this wouldn't be a problem. Which is partially why I changed doctors at that point - there were other reasons. The facial changes aren't major, but certainly noticeable to me. What you've stated is what I've read everywhere, but I've read in drug.com forums/reviews a number of people experienced the facial changes and had posted about such.

I've re-read your replies and your forum entries, and hope like hell I can get to a place mentally that you say I will. Thank you.

Online Jim Allen

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Re: Finally decided to participate
« Reply #6 on: August 22, 2023, 04:31:01 pm »
Dovato, not everyone's cup of tea mainly due to DTG issues but hopefully it works out fine for you.
I've been on a combination containing DTG for years and it's been perfectly fine for me.

Quote
Regarding the facial fat loss, my first doctor (diagnosing doctor), when I noticed and told him about 2 months into my treatment that I had some loss in my cheeks, his response was "nothing I can give you will be any different", despite having told me when I started, that this wouldn't be a problem. Which is partially why I changed doctors at that point - there were other reasons

There is so much wrong about this. 2 months visual facial wasting on Biktarvy isn't going to happen. Sounds like patient insert package information that is written as CYA that hasn't had any cases on this combo and the doctor's response about this issue is lazy and sounds about as bad as doctors who still think shaking hands would be an HIV concern. ::)

Anyhow, moving on, don't look back and hopefully the new doctor does know their asshole from their elbow and DTG doesn't cause you any issues.  :)

Keep us posted and take it easy
« Last Edit: August 22, 2023, 04:37:11 pm by Jim Allen »
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Offline leatherman

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Re: Finally decided to participate
« Reply #7 on: August 22, 2023, 08:41:45 pm »
I've re-read your replies and your forum entries, and hope like hell I can get to a place mentally that you say I will.
So here's the deal.... twenty years from now you WILL be in a great headspace about HIV. I mean, 20yrs!?! Nobody stays f*ed up about HIV after dealing with it that long, right? Eventually, when you've been UD for decades and are just living your life, HIV will only take up about .02% of your life as you pop a pill each day (or less! That cabenuva is looking pretty good. And only 6 times a year? sure beats 365 pills a year.)

Now with that in mind (the whole "in 20 yrs you'll be cool about HIV" thingie), why shouldn't you start feeling better about things sooner rather than 20 yrs later?  ;) How do you think you'll feel about things a decade from now? What about 5 yrs from now?  ;) Heck! What do you think you'll be thinking about your life taking ARVs this time next year?  ??? So I say if you're going to for sure be feeling normal about all this stuff in the future, you might as well start working towards having that kind of feeling ... now. :)
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Charles.M

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  • Posts: 46
Re: Finally decided to participate
« Reply #8 on: August 23, 2023, 08:41:17 am »
Welcome to the forum, it seems that your treatment is going very well. Personally I am currently happy with Biktarvy and it seems to suit you as well. I have no wasting issues on it, in fact I have gained 6 lbs in three montyhs on it. I hope in the near future to swithch to Cabenuva just for the convienice of bimontly shots vrs daily pills. So far still no OIS except minor thrush which is long gone. I do get alot of itching on my face not sure if it is the imonyBiktarvy or the Bactrim? I suspect that my CD4 are now above 200 and hopefully will be off the Bactrim.

As far as support groups, places or people to call other than this site I have found none. In my area (New England) they pretty much don't exist. The only reach out I got was from a state DIS guy who was just filling in blanks and completely useless for any kind of help or support.

Perhaps it the newness for me as i wish I had a person or group to vent with and talk to. I imagine that more seasoned folks try to get on with thier lives and keep HIV involvement in thier lives to a minimum, I get that. This site has been the only place i have been able to turn for support and i appreciate it very much. Jim, leatherman and Tonny among others are a great source of inspiration and knowledge, I can't thank them enough.

Being a straight guy on here is a little odd at times but in the end we are all the same  and sharing the same DX. I have attended the monthly video chat twice it is a place to start and I reccomend it, reach out to Jim for invite next month. Unfortunately for me this past Saturday meeting I had some technical issues with PC and missed most of it.

If you are looking for someone to talk to I am quite open to it, you and I are on very similar paths and likely have similar issues. PM me if you wish

I am glad to see you on the mend numbers look really good, God bless.
« Last Edit: August 23, 2023, 08:43:44 am by Charles.M »
05/22/23 INITIAL DX
05/26/23 CD4-72/VL-63,400
06/06/23 STARTED BIKTARVY
07/05/23 CD4-NT/VL-63
08/08/23 CD4-163/VL-21
09/15/23 CD4-NT/VL<20
10/17/23 CD4-162/UD
12/25/23 CD4-149/UD

Offline Dogman

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Re: Finally decided to participate
« Reply #9 on: August 23, 2023, 04:16:16 pm »
Dovato, not everyone's cup of tea mainly due to DTG issues but hopefully it works out fine for you.
I've been on a combination containing DTG for years and it's been perfectly fine for me.

I hope so too, only two days in, but so far so good. The test will be in a month of course.

There is so much wrong about this. 2 months visual facial wasting on Biktarvy isn't going to happen. Sounds like patient insert package information that is written as CYA that hasn't had any cases on this combo and the doctor's response about this issue is lazy and sounds about as bad as doctors who still think shaking hands would be an HIV concern. ::)

If I told you everything about this Dr ( supposedly a specialist ) I think you'd be horrified.

Anyhow, moving on, don't look back and hopefully the new doctor does know their asshole from their elbow and DTG doesn't cause you any issues.  :)

New Doctor and the center are set up specifically for us, couldn't ask for more caring, more thorough and empathetic people.

Keep us posted and take it easy

Thank you all the best to you as well.

Offline Dogman

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Re: Finally decided to participate
« Reply #10 on: August 23, 2023, 04:20:07 pm »
So here's the deal.... twenty years from now you WILL be in a great headspace about HIV. I mean, 20yrs!?! Nobody stays f*ed up about HIV after dealing with it that long, right? Eventually, when you've been UD for decades and are just living your life, HIV will only take up about .02% of your life as you pop a pill each day (or less! That cabenuva is looking pretty good. And only 6 times a year? sure beats 365 pills a year.

Thank you LM, I am taking your valuable advice onboard.

Now with that in mind (the whole "in 20 yrs you'll be cool about HIV" thingie), why shouldn't you start feeling better about things sooner rather than 20 yrs later?  ;) How do you think you'll feel about things a decade from now? What about 5 yrs from now?  ;) Heck! What do you think you'll be thinking about your life taking ARVs this time next year?  ??? So I say if you're going to for sure be feeling normal about all this stuff in the future, you might as well start working towards having that kind of feeling ... now. :)

You're 100% correct - I'm working on it and trying not to focus so much on it.  I did speak to a therapist where I go who went down a similar path, but the insight in all honesty, isn't as valuable as I've found on here. Thank you

Offline Dogman

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Re: Finally decided to participate
« Reply #11 on: August 23, 2023, 04:32:59 pm »

Quote
Welcome to the forum, it seems that your treatment is going very well. Personally I am currently happy with Biktarvy and it seems to suit you as well. I have no wasting issues on it, in fact I have gained 6 lbs in three montyhs on it. I hope in the near future to swithch to Cabenuva just for the convienice of bimontly shots vrs daily pills. So far still no OIS except minor thrush which is long gone. I do get alot of itching on my face not sure if it is the imonyBiktarvy or the Bactrim? I suspect that my CD4 are now above 200 and hopefully will be off the Bactrim.

My wasting is very minor, and I cannot say I was unhappy with Biktarvy, it worked quickly with minimal to no real side effects. The switch is because my doctor stated there are no long term studies on the effects of 3 medicines, and in his opinion, less medicines for same outcome is better. I will see how I go on the new drug.  I mentioned the injections to him, he doesn't believe insurance will cover it, with the cheaper option of pills. I have good coverage, so will bring it up with him and maybe discuss with insurance. There's something really wrong with having to get "approval" from a non-medical person at an insurance company.

My CD4's started off just below 200, so yes, I received the "official" diagnosis too, and like you had no OI, just a very minor furry problem on my tongue, which has now gone. I was well over 200 within a month, and close to 500 after 8 months, where it has remained. My CD8's however have started to drop, and so my CD4/CD8 ratio has improved - which is good.  I'm sure you've read on here, and my Dr. told me not to focus on the CD4 number unless it's gone off the rails.

Quote
As far as support groups, places or people to call other than this site I have found none. In my area (New England) they pretty much don't exist. The only reach out I got was from a state DIS guy who was just filling in blanks and completely useless for any kind of help or support.

I don't want to go to a support group, personal choice. I had literally just gotten home from being diagnosed was in an awful state of mind, and the state was calling me as well.

Quote
Perhaps it the newness for me as i wish I had a person or group to vent with and talk to. I imagine that more seasoned folks try to get on with thier lives and keep HIV involvement in thier lives to a minimum, I get that. This site has been the only place i have been able to turn for support and i appreciate it very much. Jim, leatherman and Tonny among others are a great source of inspiration and knowledge, I can't thank them enough.

Yes, I have read this particular forum (and the others) ad nauseum since my diagnosis - it's very humbling to read what others went through or are going through. It's the only place, other than my medical that I've had any support, and I am grateful for it

Quote
Being a straight guy on here is a little odd at times but in the end we are all the same  and sharing the same DX. I have attended the monthly video chat twice it is a place to start and I reccomend it, reach out to Jim for invite next month. Unfortunately for me this past Saturday meeting I had some technical issues with PC and missed most of it.

I'm sure it took some guts to post, hell it took me a year and I'm gay, but the common denominator and reason for this place isn't sexuality.

Quote
If you are looking for someone to talk to I am quite open to it, you and I are on very similar paths and likely have similar issues. PM me if you wish
Thank you - very appreciative and humbling.

Quote
I am glad to see you on the mend numbers look really good, God bless.
I wish you success on your new journey as well. Thank you again.
« Last Edit: August 25, 2023, 08:38:15 am by Jim Allen »

 


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