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Author Topic: New DX with V Low CD4 Count  (Read 4814 times)

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Offline Loa111

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New DX with V Low CD4 Count
« on: May 30, 2018, 12:28:52 pm »
I got the bad news re me being a new DX 3 weeks ago. Today, I went to get the results of my numbers etc.

From last October Iíd a cold than never went away, chest infections, short breath, low energy, had a rash on hip prior to this and not feeling my usual perky self. Long story short, I ended up in hospital for several days with pneumonia. Got a call to come back to see a different doctor a few days after discharge, and was told the unwelcome news. I was put on antibiotics (Co-T something]to stop an infections whilst awaiting my bloods to be processed, and got pills for the Thrush like white stuff on my tongue.

Today I went for my update...
I was very shocked and extremely worried to be told my CD4 count is very low CD 22!
Didnít get VL number but doc said ďVL is quite high as expectedĒ.

Iíve started treatment today on Genoya, 1pill daily. Iím opting to take it each morning after breakfast. Also told Iíll have to take those CO-T (something] antibiotics for several months.

Iím worried about my long term future with a CD4 22 count?

Thanks God I ended up in hospital with pneumonia as I probably would have never found out, itís very late as it is with a 22 count, and been about 5 years since I had one of those finger prick quick tests which was negative then.

Aside from CD count worry, Iíve been quite optimistic about the DX and going forward. Been lurking on here a lot and trying to focus on the normal lives people can have.

My wife took it ok, and weíve decided to tell no one else as Iíve a young family.

Iíve lost about 8 kilos over the past year. I do look a bit on the skinny side. Iím worried that low CD count...will I be able to gain weight back as the Genoya kicks in, and not have the skinny look anymore?

If the medicine works, can all this be reversed as much as possible?

Doc said the goal is to get me undectable.

Iíve always been fit, though stopped gym the last year due to lethargy lack of energy. Donít smoke, donít drink. Eat reasonable healthy.

Doc told me to not go to gym until the Genoya embeds itself over next few weeks.
My dream is to feel ok, and get some muscle on in the gym.

Iíve felt not too bad since the pneumonia cleared, though I do lack energy and lack that spark n pep I used to have.

How long should it be, assuming the meds work, that I will start to feel good and feel energy again?

Iím back to doc in 2 weeks, and they should have my resistance results then.

Since this is all new to me, Iím wondering and hoping maybe in future years n decades, thereíll be even better, more effective treatments n medicines which will do an even better job?




« Last Edit: May 30, 2018, 12:34:26 pm by Loa111 »

Offline Ptrk3

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Re: New DX with V Low CD4 Count
« Reply #1 on: May 30, 2018, 12:49:13 pm »
I'm sorry to read of your diagnosis, but glad for you that you have found these forums for support and enlightenment.

Now that you are on an antiretroviral regimen--and you adhere to it--you will be fine.

Your doctor is correct, your short term goal is to attain and maintain an undetectable viral load, which you likely will in several weeks.

A diminishing viral load will allow your CD4's to recover.  How fast your CD4's recover is an individual matter, some recover quickly, others more slowly.

What's important is that you reach a CD4 count of at least 200 and remain above that in order to greatly diminish the prospects of developing an opportunistic infection.

Don't worry about the past.  Focus on the future and your adherence to your retroviral regimen and your recovery will take care of itself.  You will gain weight and be back to your old self soon enough.

You can live a long and healthy life.

Yes, the future may well bring more advanced treatments.

For now, focus on the present and be mindful of the importance of adhering to your antiretroviral regimen.
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Online JimDublin

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Re: New DX with V Low CD4 Count
« Reply #2 on: May 30, 2018, 01:44:17 pm »
Hi

Sorry to hear of the diagnosis and that you have had a rough time and hopefully you will start to feel better soon.

As Ptrk pointed out the goal is to suppress the virus with the medication, once you are there and you continue to take your meds to suppress the virus,  the body can focus on better things like keeping you healthy and "healing" instead of having to deal with the slowly loosing battle its had to endure until now 

HIV simply is not a show stopper anymore with treatment and you can live a long, healthy and productive life.   

Jim
« Last Edit: May 30, 2018, 01:47:24 pm by JimDublin »
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Offline Tonny2

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Re: New DX with V Low CD4 Count
« Reply #3 on: May 30, 2018, 02:22:13 pm »

    ojo.     Hello there, welcome to the forums... Reading your post reminds me of my situation when I was diagnosed with AIDS, cd4 20, also hospitalized due to OCP, also lost ten kilos. Fastforwrd, regained my weight, cd4 638, cd4%35, UD for eleven years with same treatment...sorry for the short reply, using cell phone, legally blind. I hope my phone didn't write something else only what I dictated... You are going to be fine just take your medication ask order and take your antibiotics to prevent opportunistic infections. Recommendation go and see an opthamologist to check you retina, for cmv.... hugs

Offline Loa111

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Re: New DX with V Low CD4 Count
« Reply #4 on: May 31, 2018, 04:17:05 am »
Thank you for the replies, and it does make me feel a bit  better.

What really scared me yesterday, n still anxious , and it was almost as bad as hearing the original DX a few weeks ago, was finding out the CD4 22. Obviously an advanced stage. Of course, I've read on various sites that a CD4 <200 (and me with 2 OI's pnenmonia n thrush) is considered to be Aids. The ID doc did not say anything about this yesterday, and I didn't want to comment on my low CD4 as I didn't even want to hear the word! I nearly don't mind the Hiv but I don't want to have Aids!

I did some reading yesterday, and some sites seemed to give the impression that in some places, the word Aids is not used anymore due to the better treatments of today? Then I read other stuff that said, even if one gains undetectable and Cd4 recovers to over 200 and if their doing well, they will still be considered to have Aids.

I'm back to ID doc in 2 weeks time, I'm assuming they will draw more bloods. Also they will have my Resistance info by then.
What is that Resistance info for?
I'm really hoping n worried I do not hear that I am resistant to the Genoya medicine!

OR...

Does it matter so much, assuming the meds work, if one becomes undetectable in time, and the CD4 count improves as the year(s) go forward, and one feels in good health with energy. That's what I am hoping for?

I am in my mid-40s now, and I want to live to be in my 80s at least, God willing.

Very keen to hear from other people on here who've had very low CD4 counts, and how things have improved for them.

Since I started treatment yesterday...

Took my first Genvoya about 3pm with food yesterday. No weird effects yesterday and I slept fine. Today is Day 2, so I'm going for a breakfast routine. Had bowl of cereal & a banana & coffee, and took Genvoya after, that was almost 3 hours ago, and again no weird side effects so far. I hope it stays like this! I was a bit anxious about possible side effects.

All this has been a lot to take in recently. I work for myself in a very competitive sector. I took a bit of time out the last few weeks to digest all of this, though on a very strict budget. This time out cannot go on much longer, so I need to try to get my head back into the work game. My focus has not been good recently, obviously! I'm hoping I can achieve this over the next week.   
« Last Edit: May 31, 2018, 04:26:13 am by Loa111 »

Online leatherman

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Re: New DX with V Low CD4 Count
« Reply #5 on: May 31, 2018, 06:25:13 am »
don't freak out about the words, because they're just words.

having a cd4 below 200 with OIs is technically AIDS or advanced HIV disease. If you need to get assistance to get access to health care and/or meds, that label (ie AIDS)  definitely makes that easier. If you need medical care for HIV or other issues, that label helps inform you doctors of how tenuous your health was at one time in your life.

Quote
the word Aids is not used anymore due to the better treatments of today? Then I read other stuff that said, even if one gains undetectable and Cd4 recovers to over 200 and if their doing well, they will still be considered to have Aids.
that's exactly right on both points; however "AIDS" is nothing more than "advanced HIV disease"

Quote
Very keen to hear from other people on here who've had very low CD4 counts, and how things have improved for them
from 1992 to 2004, I lived with AIDS. I had a very hard time with those earliest meds and it took me a while to recover from having PCP, thrush, a cd4 count of 5 and a large viral load (over 1 million)

I've now lived with HIV for nearly 33 years. While I may talk about my "AIDS years", I label myself as "having HIV" and never as "having AIDS". However that label helped me gain medical care and treatment for nearly 25 yrs. These days I'm 56, taking 2 pills a day (instead of 28 as I did during the last 90s) and healthier than many over mid-50 aged people I know. I go to the gym every day and the amusement park over 2 dozen times a season. Oh! and I got married to my husband 2 yrs ago this Nov.

Quote
Since this is all new to me, Iím wondering and hoping maybe in future years n decades, thereíll be even better, more effective treatments n medicines which will do an even better job?
welcome to the future! 1 pill a day with few if any long term side effects - that's Genvoya (and a handful of other meds).

Quote
I am in my mid-40s now, and I want to live to be in my 80s at least,
I'm in my mid 50s and since I didn't die from AIDS (last I was in the hospital was 20 years ago!!), I'm planning to live as long as my grandmother who turns 101 in August, still walking and talking with all her wits about her  :D :-*

it may take you a while to recover from a low cd4 (as soon as it's over 200, you don't have to worry about that again) and the pneumonia (I was hospitalized with it twice in 2 years. my recovery seemed to take forever; but looking back it really didn't take that long i.e. months not years); but here nearly at 2020, treatments are vastly improved and if you remain adherent to taking your daily meds, this time of illness will become a distant memory. :D
leatherman (aka mIkIE)

There's no rain, there's no storm, though the blue sky makes you wonder
Don't you fear what will come will come
And right now we're in the sun
Sure enough, seasons change
But don't let today get lost 'cause today the sun's on us
Today the sun's on us
- Sophie Ellis-Bextor

chart from 1992-2017
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Online JimDublin

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Re: New DX with V Low CD4 Count
« Reply #6 on: May 31, 2018, 06:29:25 am »
Quote
Then I read other stuff that said, even if one gains undetectable and Cd4 recovers to over 200 and if their doing well, they will still be considered to have Aids.

Its mostly just a label for reporting and in some nations & states for benefits claims in certain circumstances and reflects much more than that in treated HIV, so don't read too much into it.

Call it Advanced HIV, Stage 4 HIv or AIDS or as my father says a "touch of AIDS" it does not really mean much to you at this point anymore. You have started to treat your OI's and will recover, you have also started your HIV treatment that will suppress your HIV and allow you body to focus on healing and with this treatment and time to heal you can go on to live a long and healthy life.

Quote
Took my first Genvoya about 3pm with food yesterday. No weird effects yesterday and I slept fine. Today is Day 2, so I'm going for a breakfast routine. Had bowl of cereal & a banana & coffee, and took Genvoya after, that was almost 3 hours ago, and again no weird side effects so far. I hope it stays like this! I was a bit anxious about possible side effects.

The medication you mentioned you should expect no problems or side effects other than a few mild adjust days prehaps and generally this only effects a few. I'm not sure why your worrying about side effects, the main effect is life and if you were one of the few with issue you can switch there are plenty of combination so try to worry less about an issue you don't have ;)

Look at this, package insert from my pill yesterday:

Quote
Common  side effects may include:
upset stomach, mild heartburn, nausea, vomiting; bloating, gas, diarrhea, constipation;
dizziness, headache, nervousness; mild itching or rash; or ringing in your ears.

This is not a complete list of side effects and others may occur

 :o

Can increase your risk of fatal heart attack or stroke, especially if you use it long term or take high doses, or if you have heart disease.
Do not use this medicine just before or after heart bypass surgery (coronary artery bypass graft, or CABG).
May also cause stomach or intestinal bleeding, which can be fatal.  These conditions can occur without warning , especially in older adults.
signs of an allergic reaction: sneezing, runny or stuffy nose; wheezing or trouble breathing; hives; swelling of your face, lips, tongue, or throat.
Get emergency medical help if you have signs of a heart attack or stroke: chest pain spreading to your jaw or shoulder, sudden numbness or weakness on one side of the body, slurred speech, feeling short of breath.

All doom and gloom !!![/b] Scary stuff, but its just over the counter Ibuprofen.!!!!

Causality of the side effects, did the drug cause the effect, or was it coincidence is not often listed, also preexisting conditions and other factors come into account. Not to mention that often they have to list all and any side effects reported. Was it 1 patient or all of them? did they each get all side effects or was it one or the other side effect or different combination.

Anyhow I survived and my headache did not  ;)

Ibuprofen sold over the counter to millions of people daily not a problem, does it include a big fat disclaimer, you bet it does. Can this bad shit happen? Sure, does it mean it will to me, I don't think so and apparently if i believe the list of side effects I risked my life on it. 

I'm not saying it does not happen side effects, but why worry about a rare issue you currently don't have and most likely will not in terms of HIV care, instead focus on better things and relax if you can a little  ;)

Jim

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Offline Loa111

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Re: New DX with V Low CD4 Count
« Reply #7 on: May 31, 2018, 08:30:29 am »
Thank you very much guys for the extra info. Your all a great help!
I feel a bit better now about the whole thing.

By nature I'm a total worrier...one who worries if there's nothing to worry about!
So per my normal worry pattern, this anxiety will pass over in a few days.

Despite all of this, my attitude is optimistic going forward, and I'm so grateful for the modern medicine & treatment. And the advice from all you good people.

I'm committed to treatment adherence, I eat healthy enough, don't drink nor smoke, and looking forward to feeling a bit stronger n more energy in time, so I can get back to the gym n fitness. In the meantime, rest and gentle walks. :)

 

Offline lightalltheway

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Re: New DX with V Low CD4 Count
« Reply #8 on: May 31, 2018, 12:48:52 pm »
Hello,

Welcome to the forum and I am sorry for your DX.

I want to tell you a short story about cd4 count, a worried young man just like you with as little as 2 cd4 count and obviously AIDS diagnosis, he collected his pieces and decided to beat the virus before it beats him up. 

He adhered and still to his medication, he established a good connection with his health care provider. Some days were so hard and lonely but some other days are stronger than ever. He is healthy now, his cd4 count is up reaching 200 in less than 2 years and he touched beneath just the surface of his skin. This guy is me and I hope you will read my story in my thread because rest assured, it will make you feel better.

And since we are alike, I am also a type of person who likes to be worried .. and I worry if there is nothing to worry about, please refer to this forum because it really helps in answering many of your doubts and questions.

Your resistance test will clarify which strain of HIV virus you do have and if your medication will work with it or not. Please keep us posted.

Light all the way,
Prince

Offline Loa111

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Re: New DX with V Low CD4 Count
« Reply #9 on: May 31, 2018, 04:40:42 pm »
Thank you for sharing your story Prince. Yes, it does make me feel better for sure and see there is hope for me.

I cannot wait until tomorrow morning to take my pill for Day 3 of my treatment. Each day I take that pill, shall be a day closer to turn things around God willing.

Offline Loa111

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Re: New DX with V Low CD4 Count
« Reply #10 on: June 01, 2018, 04:31:38 am »
Obviously this varies in individuals based on genetics, body type, etc...

But on average, I'm wondering how long it takes for the treatment to start to kick in?

What I really mean is on average, when would one expect to start to feel some energy coming back? And that dragging low energy sapping tired feeling to stop?

I feel like a kid waiting week for Santa to come, waiting for the meds to kick in, so I can start to feel a bit better.

Day 3 of Genvoya taken this morning with the antibiotic.  Focusing on building a good habit of adherence. Felt a bit gassy in the stomach yesterday afternoon, which was quite manageable. Had a yogurt to sooth it.

Online JimDublin

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Re: New DX with V Low CD4 Count
« Reply #11 on: June 01, 2018, 04:51:23 am »
Well my two cents on this are:

Things are simply not equal, apples and oranges. There simply is no fair average to give, how long it takes for you to feel better and bonce back, depends on the person, age, lifestyle, other illness, mental state, duration etc etc

However I would guess say soon enough, but wait and see.

You started treatment and you could be UD (Suppressing the virus) within weeks or this could take several months* and the body in the meantime will start to focus on dealing with other issues so far ignored.

Keep in mind sometimes as you start to suppress the virus and the immune system reasserts itself when its been very low you could feel worse at first before you start to feel better not because your HIV is getting worse but because the immune system re-awoken now has a job to do dealing with any issues or infections it has so far  ignored.

Jim 

*
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Online leatherman

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Re: New DX with V Low CD4 Count
« Reply #12 on: June 01, 2018, 06:04:40 am »
What I really mean is on average, when would one expect to start to feel some energy coming back? And that dragging low energy sapping tired feeling to stop?
that could be an issue from having pneumonia. sometimes full recovery can take quite a while

and as Jim mentioned, now that you're on meds (with your viral load falling and immune system recovering), your body could be once again fighting off other issues that it wasn't dealing with and that could be making you feel weak.

while HIV meds are incredibly good, you haven't even been on meds a week yet. When you consider that HIV has been damaging your body for a number of years (with that low a cd4 and that high a VL, you've probably been living with HIV for years, maybe even up to 10 yrs), it could take several months until you feel up to par. Recovery is always a "hard" time to live through. Feeling "half sick" is almost worse that being totally sick because you're so close to feeling better.  Be patient. I know that's easier said that done; but now that you're on meds, you will be getting better and you really will "feel" better too...eventually. :)
leatherman (aka mIkIE)

There's no rain, there's no storm, though the blue sky makes you wonder
Don't you fear what will come will come
And right now we're in the sun
Sure enough, seasons change
But don't let today get lost 'cause today the sun's on us
Today the sun's on us
- Sophie Ellis-Bextor

chart from 1992-2017
Isentress/Prezcobix

Offline Loa111

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Re: New DX with V Low CD4 Count
« Reply #13 on: June 01, 2018, 09:09:32 am »
Yes the pneumonia really knocked me down re tiredness etc. Before the DX came through the lung specialist told me it would take months to feel normal.

I guess just get on with it, take my pill, and be optimistic for the future when I get out of this critical zone I'm in right now.


Offline Loa111

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Re: New DX with V Low CD4 Count
« Reply #14 on: June 03, 2018, 07:10:40 am »
Taking my Genvoya with total time precision after breakfast each morning. No
Weekend wake up late anymore, alarm 6am, banana n cereal n toast then genvoya n antibiotic pill before 630am.

Iím still a bit nervous n praying that whatever strain of this I have, that it is not resistant to the genyoya, or to any othe alternative options. Iím guessing the options might not be good if one was highly resistant?
Iíll find out week after next when I see ID doc again.

In the meantime if doing my best to come to terms with have such a low CD4 count  n being at such an advanced stage.

It must be natural to be a bit paranoid at this stage, for example Iím dodging people sneezing, coughing n hacking, washing my hands a lot, trying to push doors open without bare hand touching them, and examining ever blemish on my skin etc.

Anyway hopefully my resistance test results will bring favorable news.
I think Iíve got a blood draw in 2 weeks do be nice if thereís even a small indication of improvement after just 2 weeks on genvoya...fingers crossed!

Offline LeftyBowler300

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Re: New DX with V Low CD4 Count
« Reply #15 on: June 03, 2018, 10:07:55 am »
Hey, and welcome.

I was in the hospital for a week with disseminated histoplasmosis and a cd4 count of 8.

I was VERY paranoid, checking every mole, lymph node, pain and taking my temp constantly. Thatís normal, you care about yourself. Thatís good. The paranoia will subside over time once you realize youíre feeling and getting better.

A couple months after starting treatment I was already working out, playing sports and taking 1st place at bowling events; continuing my life as if nothing happened.

Aside from the occasional mild fatigue and stomach ache from some of my prophylaxis medicine (stuff Iíve just learned to ignore), I have no problem living the life Iíve always lived.

In January there was a pretty bad bug going around that caused bronchitis. Unfortunately I caught that beast, but my body kicked itsí butt better than some of my friends who were still sick after I had already gotten better.

Just take your pill and youíll be prosperous  ;)
« Last Edit: June 03, 2018, 10:31:43 am by LeftyBowler300 »
Apr 1, 2017 DX - CD4 8 , VL 820,000
OI's: Disseminated Histoplasmosis, Thrush, PCP
Apr 17, 2017 started Genvoya, Bactrim, Sporanox, Azitrhomycin
Jun 9, 2017 - CD4 42 (3%) , VL 100
Jul 17, 2017 - CD4 57 (4%) , VL 53
Sep 16, 2017 - CD4 57 (4%) , VL 130 - Ugh... wtf
Oct 20, 2017 - CD4 63 (5%) , VL 100
Dec 1, 2017 - CD4 56 (3%) , VL <20
Mar 15, 2018 - CD4 73 (5%) , VL <20
Challenge Accepted.

Offline Loa111

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Re: New DX with V Low CD4 Count
« Reply #16 on: June 04, 2018, 02:45:04 pm »
Thank you v much for your reply too LeftBowler.
Your story gives me hope and relaxes my worry n nerves a bit.

Praying treatment will go well in time and that I can have a long n normal life.

Offline Loa111

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Re: New DX with V Low CD4 Count
« Reply #17 on: June 25, 2018, 04:19:24 am »
A little update to let you all know how things are with me...

I'm almost a month on treatment now with Genvoya, and on Septrim due to my CD4 22. I think I am well over any little side effects from adjusting to the meds, and I don't notice anything different when I take them now.

I've total strict adherence to my meds, & taking daily within 5 minutes of the same time after some breakfast.

I think I can say that I am feeling a little better than a month ago, and I think I've a bit more energy now. Of course, I am hoping to see a much better improvement as time goes on.

I'm still on the skinny side, and my arms etc look so thin :(  however my appetite has returned better than ever, and I'm eating much more than I did for months (before I got the bad news of my Dx). So I hope sooner rather than later I will gain a few kilos back.

I've still got a few nagging after effects from the PCP which put me in hospital about 7 weeks ago (which led to my dx). I'm still coughing, hacking, phlegm & short of breath at times.  I mentioned this to my ID doc & I'm going to see the Pulmonry specialist in 2 weeks. So hopefully I will find out better news about his. I am on a variety of inhalers to help with this. I did read that it can take some people quite a while to get over PCP, up to 6 months? Can anyone share how long it look them to get over PCP?  The xrays show my lung is clear but as I said, still got those nagging after effects.

I'm back to ID doc in 2 more weeks, and hopefully results of my last blood draw, which will be for 2 weeks on treatment will be there. Hopefully there will be some improvement noticeable.

I think since it's only 7 weeks since unexpected Dx, and then shocking news of being advanced stage with CD4 22, I think mentally I'm handling all of this quite well considering. I'm trying to be optimistic as much as I can, and believe docs who tell me if I take meds correctly, that I will have a long like like anyone else.  Of course, it is a bit worrying being so early in treatment, and on Septrim, and I'm hoping my condition will be improved, stable and under control in the months to come.  Once I get a period of stability and know meds are working well, I'm sure the worry will decrease.

So thank you everyone for all your kind help to date, and I'll keep you posted on my 2 week blood draw results.

Offline MarkintheDark

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Re: New DX with V Low CD4 Count
« Reply #18 on: June 25, 2018, 07:55:10 am »
I'm late to this thread but welcome nevertheless @Loa111.

I'm what's called a pre-HAART (highly active antiretroviral therapy) survivor, poz 25 years and my CD4 - as low as 35 - has just broken 200 the past year on new therapy, UD (undetectable) VL.  I've taken Bactrim DS daily for years as a prophylaxis.  I hope I can ease your mind a bit, though it sounds like you're adjusting.

You have a few things in your favor.  You already have a healthier lifestyle, for one.  Believe me, I understand the frustration when, for example, your simply just not up to the gym.  If you're a fan of stretching routines (i.e., if you're a runner), I've found that's something I could do in the interim to regain the feel for my body.  I've found, too, rest and reducing stress have been crucial.

Secondly, you started on your therapy immediately after your DX.  I could cite a million studies on what a difference that makes.

Third, yeah, the dam label.  Among friends who I trust I have "advanced HIV."  But my doc sticks with protocol and I don't mind, calling it AIDS.

Finally, let's talk numbers.  As a matter of fact, let's not.  Probably sounds odd to you so soon after your DX.  My point is that over time I found my best daily barometer was simply how do I feel?  Quite honestly, that took awhile.

HIV dx - 02/93
AIDS dx - 07/01
Rilpivirine/Cabotegravir guinea pig since 01/17

Online JimDublin

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Re: New DX with V Low CD4 Count
« Reply #19 on: June 25, 2018, 08:27:17 am »
Hi Loa111.

Glad to hear your doing well with the treatment and starting to feel better  :) Early days and things are already looking up, that's good.

You were quite ill and it can take time for your body to recover from illness but you are on the right path that's all that matters and glad to hear the appetite is returning.

Don't over do it, its not a race you know noxoxo rush and as said before your numbers are pretty much irrelevant at this stage, the only one that matters is your VL and keeping that suppressed by taking your hiv meds as you are already doing.

Hopefully in a few months you will be able to drop the  septrin (co-trimoxazole).

Take it easy and don't overthink things ;)

Jim
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Offline JosephP

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Re: New DX with V Low CD4 Count
« Reply #20 on: June 26, 2018, 11:56:40 pm »
 :) Hey Loa!

It does get better! Let the Genvoya do its work and your immune system will recover! Recovery seems to be the hard part! When you were getting sicker by the day, you didn't know why.. But now you have a dx and a route to get your body strong again! We all have had similar experiences, some people less than others, some people more. I was lucky and the only sickness I had was the feeling of tiredness constantly. I was treated for fatigue. Reduced the trips to the gym. Try to sleep more to no avail. Sent to an oncologist a hematologist. Doctor was suspecting leukemia, I had all the symptoms! All tests came back clear, except that there was something..No one ordered an HIV test! I found out by mere accident. I wanted to upgrade my life insurance; imagine the shock! And then I had a rapid, rapid weight loss and the sweats.. I will wake up soaked.. Then I felt extremely hot at all times.... I would put the A/C very low and still be hot... Stribild pulled me out of it... Within two months I was undetectable and have remain since.. And you will too.. You will recover.. and you will lead a normal life albeit with a small difference from other people: You and I have HIV! Non disclosing is fine. I have disclosed only to those that need to know.. Surgeon, dentist, doctor etc. Keep up the good work and you will see your recovery soon!
We are all dealing with this. And we will live long and productive lives!! AND, yes the Lord is my shepherd. Life is good... And thanks for the meds!

Offline Loa111

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Re: New DX with V Low CD4 Count
« Reply #21 on: July 12, 2018, 05:04:31 am »
Had my 2 month check in with ID doc yesterday since DX in early May. On treatment approx 7 weeks now,Genvoya & Septrin. I'm starting to feel better, so the treatment must be starting to kick in.

I've put on a few kilos, which nice though I need at least 5 more kilos so working on eating well & more.

The doc is happy with my progress. I'm totally strict with taking my meds. So far so good. I worked up the courage to ask what my baseline VL was, 272,000 VL.  Did a blood draw yesterday, & back in another 2 months, so hoping that my VL is reducing & that I am on a sure path to being Undetectable.

Doc said when my immune system gets strong, they will vaccinate me for several things, and also I'm to have a flu shot before the winter. Also they will test me as time progress to make sure there is no impact on kidneys or organs etc.

In general I am starting to feel normalish, but it's been so long since I felt 100% well, I've forgotten what that feels like! Perhaps over 1 year!

Mentally I am doing well, positive attitude. Certainly I still have an occasional shaky hour here n there, worry, hope I'll be ok n live a long life,the future, why me, how the hell did I get this, who, etc etc, but hey no use in worrying about things I cannot control.

I feel ready to start very light workouts now. Doc told me to go for it but take it easy. I need to get rid of these skinny arms!  :)
« Last Edit: July 12, 2018, 05:08:46 am by Loa111 »

Offline paintedroom

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Re: New DX with V Low CD4 Count
« Reply #22 on: July 12, 2018, 02:16:02 pm »
Hello Loa,

i was also in a similar position - Cd4 50,kaposi sarcoma and put on genvoya and bactrim.I had lost a load of weight too.Within a month i was undetectable and in another 2 months i had put back on the weight.That was over 2 years ago and now i`m over 200,off the bactrim and apart from taking my pill every morning,i hardly think of hiv..i know,i`m a bloody disgrace.
When i first washed up on these fine shores,i was an unholy mess mentally.The regulars here managed to put my stir fried brain to rest,although it might have taken a good few thwacks to do so.The reality is they tell the truth here and you can take that to the bank.All you have to do is play your part,which you are doing - take your pills every day(i`m still at 100%..he said smugly)and eat,sleep and exercise regularly.Its always good to hear those that are relatively new to this,are finding their feet again.

Best of luck,P.
Dx`d mid July 2016
8/8/2016 - CD4 50     VL 50,000
5/9/2016 -  CD4 150
13/9/2016  VL  undetectable.
March `17 - CD4 193   VL undetectable.
March  `18 CD4 214    VL undetectable
Genvoya

Offline Loa111

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Re: New DX with V Low CD4 Count
« Reply #23 on: July 18, 2018, 09:41:48 am »
Good news! My VL has dropped to 40!
Thatís down from 270,000 VL and only 6 weeks ish on treatment.
Thatís not considered UD yet where Iím located but Iím headed in that direction soon. 🙂

Only annoyance is my Liver enzymes are up n high. Gave blood samples yesterday n will give more in a month to monitor liver. So hoping nothing major there.


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Re: New DX with V Low CD4 Count
« Reply #24 on: July 18, 2018, 11:13:40 am »
Good news! My VL has dropped to 40!
......
Thatís not considered UD yet where Iím located
that's excellent news! Are you still feeling better than you were? While recovery is a good thing, that "half sick" feeling sucks. With that viral load knocked down like that, things should continue looking up for you going forward.  :D

"undetectable" is a tricky word. (we've had other discussions about this https://forums.poz.com/index.php?topic=69190). For research/study purposes, a VL <200 is considered "suppressed" and a person is no longer infectious. For all intents and purposes, a VL of 40 is as good as 20 or 200 or "UD". ;)
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There's no rain, there's no storm, though the blue sky makes you wonder
Don't you fear what will come will come
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Today the sun's on us
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Offline Loa111

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Re: New DX with V Low CD4 Count
« Reply #25 on: July 18, 2018, 11:47:54 am »
Hi Leatherman, Yes thank you, Iím feeling much better than 7 weeks ago. Those little things like unexplained diarrhea, drained feeling have all gone thankfully. Iím putting on a few kilo gradually and I feel like eating well. Sometimes I still feel tired but hey since Iíve been through the wars n pneumonia etc, might take a little more time. I used to be fit re gym stuff but thatís all gone so starting back very easy to gym soon.

So yes I feel much better now!

With the VL reducing so quickly, hopefully with time my CD4 will improve.

Thanks for all your support everyone! Iím delighted with this news 😁


Offline Loa111

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Re: New DX with V Low CD4 Count
« Reply #26 on: August 08, 2018, 08:15:09 am »
Checking in with a little update as I want to let all those who supported me on here that I'm doing well & also good for new Dx people to see there is light, especially since I came from a very unwell late Dx.

So I'm feeling good in general. 2 1/2 months on treatment now.
Life has returned to normal which is great. I've had a liberating blessing in that I decided to not let this aliment define me or own me, a "to hell with it" attitude which is very freeing. That feels good. I think of this little problem less n less.  I'm taking my meds spot on accurate too. Have returned to the gym for light workouts a few times  week but taking it easy.  :)

Doc is monitoring my Liver Function as readings were high recently, so have to give a few extra blood samples in Aug before I go back to see him in Sept. Hope that will be ok & nothing major? 

My VL was 40 recently so I'm hoping in Sept to hear an improvements there. Hoping in several months to have CD4 recovered enough so I can stop taking Sephrin.

I do feel tired & drained some days, not enough to stop me working but enough to know it's there. I'm guessing since I was quite sick t Dx that this could be the meds doing their job & my system beginning to repair?



« Last Edit: August 08, 2018, 08:17:35 am by Loa111 »

Offline Tonny2

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Re: New DX with V Low CD4 Count
« Reply #27 on: August 09, 2018, 04:44:05 pm »


     ojo.     Hello loa... It is always nice to read a newbie with the right attitude. We all know how difficult it is to get an HIV / AIDS dx, we also know that when you newly diagnosed people, see how the ARVs are working after seeing their first blood work results, you guys start to feel better and more helpful. As I always say, discipline in taking your medications as prescribed and a good attitude towards life is the formula to a successful treatment. The medications wiill take control of the virus so you can take control of your life again. Take it from someone who has used this formula for the last 23 years of my life... Keep up the good work, please keep us posted and go and enjoy life, because there is life even after an HIV/AIDS dx... I hope that your liver issues get resolve...hugs.      ojo

Offline JosephP

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Re: New DX with V Low CD4 Count
« Reply #28 on: August 10, 2018, 10:49:02 pm »
Checking in with a little update as I want to let all those who supported me on here that I'm doing well & also good for new Dx people to see there is light, especially since I came from a very unwell late Dx.

So I'm feeling good in general. 2 1/2 months on treatment now.
Life has returned to normal which is great. I've had a liberating blessing in that I decided to not let this aliment define me or own me, a "to hell with it" attitude which is very freeing. That feels good. I think of this little problem less n less.  I'm taking my meds spot on accurate too. Have returned to the gym for light workouts a few times  week but taking it easy.  :)

Doc is monitoring my Liver Function as readings were high recently, so have to give a few extra blood samples in Aug before I go back to see him in Sept. Hope that will be ok & nothing major? 

My VL was 40 recently so I'm hoping in Sept to hear an improvements there. Hoping in several months to have CD4 recovered enough so I can stop taking Sephrin.

I do feel tired & drained some days, not enough to stop me working but enough to know it's there. I'm guessing since I was quite sick t Dx that this could be the meds doing their job & my system beginning to repair?

Genvoya is doing its work! Congratulations! Keep it up!
We are all dealing with this. And we will live long and productive lives!! AND, yes the Lord is my shepherd. Life is good... And thanks for the meds!

Offline Loa111

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Re: New DX with V Low CD4 Count
« Reply #29 on: August 26, 2018, 07:01:15 am »
Had a check in with ID doc the other day, as I discovered marks in my mouth which doc thinks is Hairy leukoplakia. He said to come back in a month so he can have another look and then decide if needs to send me to an oral specialist for further checking. Though he did say, sometimes Hairy leukoplakia comes when body is ďhealingĒ from an advanced case when the treatment is starting to do its work, and often goes away later. So fingers crossed this will be nothing too serious.

Aside from this, doc said Iím officially undetectable now which is great. My low CD4 has increase a little up to 50 from my 22 baseline level.

Told doc that Iím tired and fatigued some days or for a few hours during various days. He mentioned that the Septrin antibiotic can cause fatigue too, as well as body healing itself.

My liver test which was high recently has return to a normal level too, which they were monitoring and continue to check.

One good thing is at my clinic, there are doctors who are training to specialize in the ID field, so they always give me a real rigerious check over, and then of a anything unusual they get the head ID doc in for a double check. So getting real good attention which Iím grateful for.

Iím looking forward to the future when the fatigued feeling reduces or goes away, though Iím guessing that may take a long time.

Offline kentfrat1783

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Re: New DX with V Low CD4 Count
« Reply #30 on: August 26, 2018, 07:33:57 am »
Hi,

I haven't read every post and reply in this thread but have skimmed it so I'm sorry if I duplicated something. 

I too started with a low CD4 count at "2" but in May of 2017 but as of about 3 months ago I was up to 106 and I was UD in about 3 months.  I didn't even know that I was positive until I got pneumonia and they couldn't understand why it was so bad.  Well, they figured out quickly why it was so bad at is was an OI. 

I was seeing an ID specialist in this area but didn't feel like he was the best for me.  I'm sure he is a good specialist but with how low I started I felt I needed more specialized treatment.  I now drive to the Cleveland Clinic every few months (if not monthly) to see specialists.  I never knew that specialists could specifically specialize in HIV/AIDS (such as a psychiatrist). 

It is very normal for the doctors to check all of your organs to make sure that the Rx's aren't doing anything odd.  I don't think any of my blood tests started at a normal level but as time goes on things are starting to get back to a semi-normal level. It does sound like things are starting to get back to normal with you but still have a few issues to deal with. 

Just remember to ask your doctors questions and don't feel silly for asking anything.  I even asked my new doctors some questions and they actually giggled a bit but it wasn't too me but my past doctor.  They were shocked he even had me doing that as it was old thinking or at least shouldn't have still been going on past a month leaving the hospital. 

Also, don't worry too much about little blips in your test results.  Look at it over the long haul.  I'm just wishing you the best and hope you have a nice day.

Kenneth
08/28/2018 - CD4 166 (15%)  VL - <20
05/08/2018 - CD4 106 (11%)  VL - <20
03/05/2018 - CD4   90 (10%)  VL - <20
12/11/2017 - CD4   60 (  8%)  VL - The hospital forgot to run
09/07/2017 - CD4   42 (  6%)  VL  54        (1.70)
05/11/2017 - CD4     2 (  1%)  VL 169,969 (5.23)
OI's: PCP
Dx`d May 11, 2017
Location: USA

Offline Loa111

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Re: New DX with V Low CD4 Count
« Reply #31 on: September 20, 2018, 04:01:32 am »
Another visit to ID Doc yesterday. All is going ok in general. Still undetectable which is great. CD4 still very low just 35 yesterday so a long journey to travel here.

They're keeping a close eye on things because my Liver Test is at higher levels than it should be. Extra bloods given for more testing. Doc thinks it might be worth looking at changing my meds, I think he was meaning the Septrin, as thinks this might be effecting my liver levels. So might be up for a meds change next month, not sure if he means to change me from Genvoya too. Let's see what happens.

Also told him I'm still feeling tired somedays, wondering if it is the Septrin, which it might be or  so as some of you guys explained too, the tiredness just comes with the territory for now until my immune system recovers which is going to take time, maybe a year, maybe more, maybe less, who knows! Just keep taking the meds  ;D

I have to go back in another month for further testing. So fingers crossed all will work out to be ok. 

Offline Loa111

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Re: New DX with V Low CD4 Count
« Reply #32 on: September 20, 2018, 06:44:00 am »
Just got a call from Clinic, they want be to go back & change my meds tomorrow.
Putting me on Triumeq to replace the Genvoya, and something else to replace the Septrin as they think both might be effecting my Liver.

Ugh! Could do without this. Hopefully the Triumeq will settle in well for me & no weird effects for first few weeks.

Offline CaveyUK

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Re: New DX with V Low CD4 Count
« Reply #33 on: September 20, 2018, 05:28:50 pm »
Look don't worry about it ok?

Triumeq is a great combo and contains Dolutegravir which is a cracking drug where most users report little to no side effects and the best aspect is that the combo doesn't contain a booster. What that means in reality is you no longer HAVE to take your meds with food and secondly that there are far fewer other drugs which it interacts with or boosts to unwelcome levels.

Both are great combos, but you are effectively jumping from one great combo to another - with a few up-sides along the way.

As for your CD4's, I know it's hard but try not to get too down. As your VL is undetectable, the body will build CD4's up at it's own rate and this can sometimes be annoyingly slowly. You will also see fluctuations due to a multitude of mundane reasons (time of day, if you have a bug of some sort, exercise done...the list goes on) which can be dramatic enough if you start with 600 and see a 500 reading one time, but if you are down in double-digits then it can be unnecessary alarming.

Some docs believe that switching regimens can sometimes see an initial bump in CD4 cells (not sure if there is any scientifically proven basis for this or not, as logically speaking there shouldn't be - but it is seen sometimes), so perhaps this is part of the thinking.

Fatigue could also be for many reasons, including all the ones you mentioned plus others. I know several people (HIV-) who have had glandular fever and once recovered they say it has taken them anywhere between six months to a year to feel back to normal in terms of energy levels - illnesses take it out of you. Now, you've not only had a nasty bug, which is thankfully being nicely suppressed now but it's a huge shock to the system and your body is getting used to medications too, along with the multiple clinic visits and anxiety that they bring. It's no wonder you could be feeling tired, even without any other problems!

I always say this and it may sound hollow but I mean it... In a few years time when your CD4s are back up to a respectable level, you are off the antibiotics and you wind up seeing the clinic every six months (like a dentist), you will look back on these early days and be amazed at how all-consuming it was. For most of us, HIV is a pretty mundane and small part of our day-to-day existence, thanks to the advances in modern treatment and stuff like U=U becoming proven.

So hang in there and keep us all posted. You are doing great and your thread will eventually serve as a help to others in a similar boat in future.
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Offline Loa111

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Re: New DX with V Low CD4 Count
« Reply #34 on: September 21, 2018, 04:47:22 am »
Actually Cavey when I went yesterday they changed plan and decided to put me on the 2 separate pills of Tivicay and Descovy.

From what I've read on there, Tivicay and Descovy seem to be a decent combo too, with the advantages you mentioned above, either take with food  or no food, and not as many complications with other drugs (not that I want to be on anything else!).

Also told me to stop Septrin immediately. They are going to try another antibiotic instead, though I had to give blood samples yesterday to determine what antibiotic will be suitable. So I've a week or so break from antibiotics....yes!  8)

Obviously all the sudden med changes are due to the ongoing high Liver Test results.

So other than that, i'll get on with being strict with taking my meds, recovering & healing & hopefully enjoying life!  :)

Offline CaveyUK

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Re: New DX with V Low CD4 Count
« Reply #35 on: September 22, 2018, 06:45:43 am »
Thats a great combo.

I'm on Tivicay and Truvada (well, a generic version of Truvada now) and it's absolutely fine. Two pills instead of one is no problem, especially as the tivicay pill is so tiny and I've not encountered any problems whatsoever. A small percentage of people have sleep disturbance on Dolutegravir (Tivicay) but in most cases this can be resolved by adjusting the time the drugs are taken. In my case, I've not encountered that so I take my pills fairly late at night.

I've asked about moving onto Descovy (which is basically Truvada version 2.0), but because in the UK Truvada is now available in generic form it isn't cost effective for the health service, so I have been told that whilst all my lab numbers - kidneys etc - are fine they won't switch me, but the moment anything changes they will. Bit annoying, but I guess it's one of the things you live with to have a 'free' health service!

As for the antibiotics, I started on the equivalent to Septrin (I started at 160 CD4) and didn't have too many issues - some dry patches of skin and a bit of itchiness, but this calmed down over time. That said, I had a huge dose of doxycycline for another issue and had all sorts of problems with muscle pain and whatnot, so I can see how antibiotics can cause problems for some people. I hope whatever they switch you onto works out, as with a low CD4 count they are really important to give some peace of mind that you have protection against some of the nasty infections that could happen.

As I say, it's a pain in the first year after diagnosis but it really does settle down and keeping the right mental approach is crucial in ensuring you do everything in life you would have done anyway, and it seems like you have that aspect nailed :)
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Offline JosephP

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Re: New DX with V Low CD4 Count
« Reply #36 on: September 24, 2018, 10:55:21 pm »

Obviously all the sudden med changes are due to the ongoing high Liver Test results.

So other than that, i'll get on with being strict with taking my meds, recovering & healing & hopefully enjoying life!  :)

Nice to read your thread and see that you are doing great! You will get there. I, myself, was on Genvoya for over two years and then my liver enzyme went up. Out of the blue, my ID doctor switch me to a newer version of it; Biktivar (I think that's how is is spelled!) and after six weeks on this new med liver function returned to normal! This med can be taken with or without food which is a godsend.. I don't have to plan dinner around the 'pill'! Sometimes you are not hungry and I had to force my self to eat just to take the pill.. Now, I pop it up in my mouth at 7:30pm and forget about it...For 24 hours..
Keep the good work and you will see 80 or more! :D :D
We are all dealing with this. And we will live long and productive lives!! AND, yes the Lord is my shepherd. Life is good... And thanks for the meds!

Offline Loa111

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Re: New DX with V Low CD4 Count
« Reply #37 on: October 03, 2018, 10:22:04 am »
Back to ID doc today. It's been 2 weeks since I've been changed to Tivicay and Descovy, and nearly a week since my antibiotic was changed to Dapsone.

To be honest the last week and this week was not good at all, I felt a lot of fatigue, a nagging lethargic feeling where I just want to sit down and do nothing, to the point it's been effecting my work. Just cannot focus at all on work when I feel like this. (Not good when you work for yourself freelance! And not good for ones finances!). I told the Doc about this, so he said to give the body a chance to get used to the new meds, and with all the med changes this can happen.

Normally mentally I'm positive about the whole thing, but the last few days I've been feeling frustrated, and cranky. Going to the clinic so much is like a full time job! lol! It's not so far from my home but going there, still it wastes almost a full business day by the time I get to see the doc, and then have to wait again to give more blood samples.

The hospital I go to is a training hospital, and often when I go, there's another trainee doctor totally unfamiliar with my case whom I have to enlighten.Normally I don't mind this, but even this was pissing me off today! LOL...rare for me to be this cranky. Of course, the boss ID Doc comes in then for a few minutes to check everything.

As I mentioned before, the meds change is due to my liver enzymes being high, and liver inflammation, so doc is hoping the meds change will fix this. I hope it fixes too!  :)

So I'm back in 2 more weeks for another check and to give more blood. I am grateful they are taking such a strong interest in me, and taking such good detailed care of me.

I've also had a lot of dry flaky skin since I started treatment, so doc gave me a shampoo to treat this. He said this is from my weakened immune system, and should clear up in time.

I didn't even ask what my CD4 was today, but hey lets see how it is in 2 weeks time.

Also they're going to give me the Flu Jab and a Pneumonia prevention shot too in 2 weeks time.

Rant over!  ;D I'm sure I'll return to my normal cheery self very soon.

I am looking forward to when the times comes when I recover a bit more, and then can go every 3 months to clinic, and then every 6 months.
« Last Edit: October 03, 2018, 10:24:43 am by Loa111 »

Online JimDublin

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Re: New DX with V Low CD4 Count
« Reply #38 on: October 03, 2018, 11:45:19 am »
Yeah the first months, year even can be laced with upset as ypu body heals etc.

Sorry to hear about the skin issues, my all time favorite hate is viable issues, I know that sounds very vain of me.

Hopefully the medicated shampoo does the trick

Jim
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Offline baylav

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Re: New DX with V Low CD4 Count
« Reply #39 on: Yesterday at 10:34:33 am »
Apologies to all, I do hope to dedicate one whole month to this forum. I am a survivor like so many this forum helped me. I was sucidal and I thought the end was my next day. But gladly and luckily I stumbled on this forum and it helped a lot. My cd4 was 20 or so. When I was diagnosed last year. Now I am
Up numbers good. And regarding the weight just take your meds and donít eat too much I have regained lost weight and added much more now that I am trying to loose. 😊. Itís been a smooth ride and I hope you too will enjoy every single bit of it.

Thanks again to everyone that helped me during my trying times. God bless you all and reward you. Iím out but not for long.

 


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