Hiv positive - scared of meds

[SBnew]

So i was diagnosed last week, im in a comitted relationsship, so didnt even consider it. But he was infected before and didnt know. I have had hiv since march this year.

I am going in tomorrow to talk about medications and which ones i will get.
But i am scared of sideeffects - especially weightgain, since i lost over 20 kg in the past two year, second i have anxiety and previously had a depression, so scared it will make it worse or make my depression come back.

Guess i just need some reassurance 

[BubbaPat]

There are more meds out there than used to be.  The ones I'm on didn't make me gain weight.  I'm on one set and my partner is on another and we have the same doctor.

We are both also on Clonazopan... an anxiety/anti depressant. 

Talk to you doctor.  Make sure you tell them everything and make sure they listen.  I've been taking meds for 20 years now and I know of other on here who've taken them for longer.

They are just pills.  Nearly everyone takes a pill for something.

Keep doing what you doing, exercising, eating right, having friends... it'll all be good.

Bubba hugs!
Patrick

[Jim Allen]

Hiya,

Sorry to hear about the diagnosis.

I agree with Patrick.

There are plenty of combinations, so you can switch if you end up on something that doesn't suit you. I've been on my most recent combination of meds (Triumeq) since 2014 (i think) and it suits me fine, no issues for me, but I have had combinations that I could not manage before, so I switched.

Do make sure the doctor is aware of the depression.

How are you doing/feeling otherwise? Did you find out what your viral load & CD4 was after the diagnosis?

How is your partner doing? Have they started treatment?

[lightalltheway]

Hello,

I am sorry for your recent diagnosis. I know, it is not easy to digest. too much to think about at the same time.

I am here to assure you that you will be fine. All what you really need is be responsible about adherence when you start your medication. Dont worry about side effects, unlike past years, first line treatments are many and you can easily switch until you are happy and fine with your regime.

The mental health is also as important as your physical health. Depending on where are you based on the global map, try to speak with peer support, if available.

Finally, you are not alone. You can consider this forum as your virtual family, we do care about one another and everyone support in the way they can. So let me WELCOME you to our SPECIAL club.

Take good care of yourself now, and feel free to write us back. Oh, it is also so important to establish a good connection with your medical care provider, speak, ask, question, discuss. Life is yours, its your choice .. i decided to live happy and i hope you will, too.

Prince

[harleymc]

Hey SB

Hope this finds you well.

 As others have said, you try one combination, if that's not right for you try another, rinse & repeat.  I'm old school having been on various HIV medications since 1990, some feel rough, some feel good.

Definitely  get some assistance with the depression,  it no use having a long unhappy life. Again something I can relate to.

Take care

[SBnew]

Thank you for all of your replies!
Its nice to hear every positive thing 🙏🏼
I dont know anyone with HiV, so its all new and didnt know very much about it.
I was at the hospital today, im going to start biktarvy next sunday. Hope the sideeffects wont be too bad.
Im already on some meds for my anxiety, and there was a period with side effects so im kinda prepared in that sence. My cd4 levels were 553, so i guess thats good, mostly so high because i was recently infected.

[lightalltheway]

Great news!! happy for you. Dont think too much about side effects because they may fade away in couple of weeks. Give time sometime.

[Tonny2]

          ojo.          Hi am welcome SBnew…I’ve been taking meds for 28 years, I never thought about side effects, on the contrary, I always thought about the benefit he would bring to my life. I think about my medication, every time that I take it, as my vitamin, And lucky you that you have to take just one pill a day , I take eight pills every day, 8 vitamins. Just focos en n the benefits in taking that vitamin every day at the same time And ch for interaction,
I think you cannot take vitamins with it unless you take the medication with that vitamins with food. Check with your doctor… please keep us posted, you will be OK.

[leatherman]

I'm all about the data.

Check out the information ("package insert") of your medication. Any medication, not just HIV meds. Check out the data about side effects. There's always the list of general limited side effects (headache, nausea, blah, blah, blah) that usually stop in a short amount of time after your body adjusts (by raising the med levels in your blood, and lowering the level of HIV).

Then look at the facts about the percentages of patients who have negative long term side effects. TBH I'm not a betting man at all, but when there's only a 1-5% chance of a side effect I NEVER assume that I'm going to be in the small percentage. Sure it "might" happen but when the odds are 95% that I'm NOT going to have a negative side effect, well that's a good thing! And that's not even just being hopeful. With a 95% of NO side effects, that's damn near a sure bet!


I believe a lot of living with HIV, and life in general for that matter, is about your attitude. I've survived a house fire, the loss of two long term partners, 3 burglaries, nearly dying in a hospital several times, 38 yrs with HIV, 30 yrs with meds, and over 25 different meds through the years. I didn't make it through that because I was awesome or something; but I did muddle through all of it and what I found out was that unless you're dead, then somehow you actually WILL pull the strength out of yourself to get through the tough times. Consider how you are feeling right now. You  do realize, don't you, that this time next year everything you're feeling and worrying about (no matter HIV, meds, or any of situation in your life) will all be a distant memory of things that happened to you and that you got through. For all our worries, life doesn't care and things keep moving on - and so do all of us.

Finally (i know, i know. i write too much. I talk too much so be glad you're not here in person. LOL) try to be practical about the things that worry you - like these meds. You take the meds, and if you have a side effect (like throwing up or headaches), you take care of those symptoms and see what happens after the next day's dose. If you're still feeling negative symptoms from the meds after a week, then simply call your doctor and see "these aren't' working for me. what's next that I could try?". When you find meds that work well and don't make you sick, I suggest people stick with what works; but when the meds aren't working out, try something else.

[leatherman]

My cd4 levels were 553

the number to really consider is the HIV Viral Load. As long as that is Undetectable then your CD4s will be able to recover and that number will be whatever it's going to be for you because of your genetics. As long as your count is >200 you're not in danger of any opportunistic diseases and there's no reason to care about your cd4 number.

I mean, there's actually nothing we as patients can do to change our CD4 numbers. No drugs or treatments. Of course living healthier (eating right, exercise, etc) will help bump the cd4 number up; but whatever peak your cd4 will get to is based on the genetics your parents passed to you.......and adhering to daily HIV meds to keep HIV from destroying your cd4s. 

I told you I like being practical. Since I really can't affect my cd4 counts except by taking my HIV meds, I take my HIV meds. As long as I remain undetectable, cd4 counts are not something to worry about. It's just another number to know (and as variable as) my weight, my temperature or my blood pressure.

[daveR]

It was 6 years to the day yesterday that I was diagnosed. I had the same apprehension as you are having now about the medication. I am still waiting for the adverse effects to take hold. You will be fine with whatever they give you.
I would be more scared of what happens not taking meds.

Dave

[SBnew]

So i was diagnosed a month ago, and started biktarvy two weeks ago.
I have a history of depression, mostly from hormone treatments in the past and i am on sertraline for anxiety.
I feel like crying all the time, feel depressed and scared of it getting worse.
I dont feel like going out and i am just not in a great place.
I have accepted my diagnosis and i was finally looking forward to getting rid of all my symptoms.. but now i just dont feel joyful.
I am scared to Call the doc and tell them, if i then need to switch to another drug, because i get very anxious when trying new meds.

Does the depression get better with time?

[Jim Allen]

Sorry to hear about the depression & anxiety.

Without treatment, depression will not go away and if you feel the depression is getting worse definatly talk to your healthcare provider. Don't wait.

As for the HIV meds, some can make depression worse, for Biktarvy it would be fairly rare enough compared to some other meds. Although, many things, including just being diagnosed with HIV can make depression worse. I presume the HIV Doc was aware of the preexisting condition, but do make sure to inform them how you are coping so they can keep it in mind.

If they feel that the drugs could be playing a part and isn't manageable, then they offer you an alternative combination. It happens. Most of us living with HIV long enough have been on a combination at some stage that didn't suit us and therefore have moved on to something that did.

https://pubmed.ncbi.nlm.nih.gov/32235038/