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Autor Tema: An introduction and a question about my diagnosis numbers  (Leído 3224 veces)

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Desconectado an92

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An introduction and a question about my diagnosis numbers
« en: Mayo 18, 2018, 01:34:22 pm »
Hello Everyone!

First I'd like to introduce myself, I'm a 25 year old man living in Switzerland.

I got a diagnosis earlier this week, although I was infected at least 5 years ago if not more.

I am dealing fine with the psychological side of this illness. The doctor told me that I can live a normal life span, and that the modern medications will work well. I am very blessed to have a very supportive husband (we have been together 5 years, and married for 1 year) who thankfully is negative. I am also blessed to have a wonderful job and a very supportive boss (in fact it was he and his wife that urged me to get diagnosed and on treatment). In general I'm a very positive and happy person, and not prone to depression. In fact, having this condition just makes me want to do so much more in life, and try even harder, to show to others that I can achieve everything I want despite having this condition.

I am due to see my specialist doctor on Tuesday to discuss my treatment, and hopefully start it next week.

Today I received my lab results, and I would like some input from more experienced members about my situation. How good/bad do you think it is, looking from the side? Bear in mind I've been infected at least 5 years, probably 6 or 7.

My Viral load PCR is 3585 copies/ml. Is that considered high/medium/low?

My Cd4 absolute count is 459.
But my Cd4 percentage is 18% (which I understand is low, how does this measure up with a reasonable cd4 absolute count?).

Everything else is within normal ranges. Except thrombocytes which are very low at 40, I have thrombocytopenia. The doctor said this is caused by the virus. Would you say in your experience this is correct?

My doctor said that I got diagnosed in time, and it is definitely not AIDS. I haven't had any opportunistic infections. In fact I've never been seriously ill.

Thanks for reading. I'm hoping to make friends here, and with time also be able to help others with their questions.



« última modificación: Mayo 18, 2018, 01:39:05 pm por an92 »

Desconectado CaveyUK

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Re: An introduction and a question about my diagnosis numbers
« Respuesta #1 en: Mayo 18, 2018, 02:35:56 pm »
Hi and welcome

Sounds like you are doing great and maintaining a healthy mental attitude to the diagnosis. That really is half the battle I think. There will be some ups and downs but if you can mentally anchor yourself throughout it then you will be fine and it's great to hear you have so many supportive people around you too.

Viral load is very low. Bear in mind some people are diagnosed with this in the millions. At the end of the day it doesn't matter in the slightest though, as within weeks of starting treatment you will have undetectable levels of the virus.

Some people try to extrapolate duration of infection from initial VL but it's impossible to do. Some peoples bodies naturally control the virus better than others. That said, there is research that 'controllers' can have additional health issues, which is why it's best to de-focus on that aspect, get on meds and get undetectable whatever the starting point.

Cd4% is a little low but nothing to panic about. My % at diagnosis was 16 with a CD4 of 160. That was a little out of whack too, as my percentage usually tallied with CD4 counts higher than 200. The percentage is often used by doctors if the actual count becomes a bit erratic (and it can fluctuate based on time of day, any other illnesses, exercise, smoking, eating...just about anything) as the percentage trend can show if there really is a concern or not, as this metric tends to be a bit more stable.

Either way, a CD4 absolute count of 459 is great news however you look at it.

I've never really heard of thrombocytopenia being related to HIV specifically, although that doesn't mean it isn't (It can sometimes be secondary to a 'viral infection' so I guess that could follow). I know it's pretty common and I hope your doc is keeping their eye on your platelet counts and treating or referring you as necessary.

Anyway welcome again. Some really knowledgable folk here so if you have any questions just ask.

Let us know how the treatment discussion goes.
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Desconectado JimDublin

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Re: An introduction and a question about my diagnosis numbers
« Respuesta #2 en: Mayo 19, 2018, 05:36:57 am »
Hi

Welcome to the forum, sorry to hear about the diagnosis.
Sounds like you are doing okay though and great to hear you have support from your partner.

Keep us posted on how you get on next week with your follow-up appointment and what treatment you start with. As for VL's and CD4 counts, look regardless the recommendation is to treat as the numbers are not a measurement of overall health or all the damage being done.

As for thrombocytopenia its was more common in the Pre-HAART era so before mid 90's and the early treatment days with older medications, the virus seems to in some people indeed cause this issue but its far less common issues post treatment era for people with well treated and suppressed HIV, also thrombocytopenia can happen to the general population as well regardless of HIV status of course.

Personally I would not stress about this, but instead focus on getting onto treatment for HIV and suppress it and just keep an eye on the thrombocytopenia with your doctor. I posted a basic lesson link below on thrombocytopenia for you.

Take it easy

Jim

https://www.poz.com/basics/hiv-basics/thrombocytopenia-low-platelets
« última modificación: Mayo 19, 2018, 06:45:28 am por JimDublin »
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Desconectado lightalltheway

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Re: An introduction and a question about my diagnosis numbers
« Respuesta #3 en: Mayo 20, 2018, 01:26:57 pm »
Hello,

Welcome to this forum, you will find all the support you may wish for.

I am sorry for your diagnosis, but I am very happy to know that you are surrounded by a bond of supporting groups from friends and family. This emotional element in your treatment journey is as important as the medical one.

Please let us know how it will go with your specialist, and what medication you will be on. What I can tell you is that medication in the new era are wonderful, so close-to-none side effects and will allow you to continue living your life to the fullest.

Light all the way,
Prince

Desconectado an92

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Re: An introduction and a question about my diagnosis numbers
« Respuesta #4 en: Mayo 23, 2018, 09:36:04 am »
Thank you for all the interesting and friendly comments and advice, I appreciate the time and effort you took to read my post and write your kind responses.

My Update:

I had my appointment with the specialist. She was very nice and spent three hours with me and my husband, discussing everything yesterday. She took a lot more tests, at least 10 more test tubes of blood.. to check for anything else that might be wrong in the body, and to check antibodies and immune response to other common diseases. And also to check for drug allergies and resistance. Those tests won't be ready until two weeks. Also I did radiology exams to check all my lymph nodes in the body etc. and chest X ray. I've had slightly enlarged lymph nodes in my armpits for the last four years (1-2cm) that are painless. But they haven't changed in shape or size for the past four years. Maybe they were like that all my life, who knows. Other lymph nodes in other areas are normal.

I asked about the divergence in my Cd4 absolute count and the percentage and she said that for the doctors in Switzerland, the absolute count is more important. However considering my low thrombocytes, she decided to start me on a "safe" therapy in the meantime. It's Tivicay and Descovy, two small pills once a day. I took the first dose of meds earlier today at lunchtime.

Once the results of the drug resistance tests come in, I will be able to consider switching to 1 pill a day if I want.

Desconectado JimDublin

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Re: An introduction and a question about my diagnosis numbers
« Respuesta #5 en: Mayo 23, 2018, 12:04:06 pm »
Hi An92

The statement of looking at CD4 counts with regards to treatment i presume is bizarre particularly so for Switzerland.

Anyhow not that it matters or is the focus you have started treatment and that all that matters, the treatment will start suppressing your HIV so you body and immune system no longer has to focus on a loosing fight.

Citar
she decided to start me on a "safe" therapy in the meantime
"safe" ... Yeah its 2018 treatment, and modern treatment with that,  particularly first-line treatments is indeed "safe".

With the Tivicay (dolutegravir) I've on this drug since 2014. It works well for me although I did switch more recently to taking it in the AM as it did give me some sleep issues when I was taking it mid-day, but it was an easy fix for me.

Keep working with your doctor and things will be okay.

Take it easy

Jim 
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Desconectado lightalltheway

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Re: An introduction and a question about my diagnosis numbers
« Respuesta #6 en: Mayo 23, 2018, 05:07:30 pm »
Great news that you started your treatment, although I did not understand your doctor perspective about CD4 count. Anyhow, it does not matter at this point.

Soon to notice that your more healthy, energetic and ready to face life from a different perspective.

As enlarged lymph nodes can be a cause of concern, please do not allow it to bother you at the time being and keep us posted regarding the results of your remaining tests.

light all the way,
Prince

Desconectado an92

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Re: An introduction and a question about my diagnosis numbers
« Respuesta #7 en: Mayo 25, 2018, 09:10:32 am »
Hello Everyone!

Thanks for the replies and suggestions.  8) 8) 8)

Now I'm really confused about what's going on.
I got new Cd4 results today.
In one week the Cd4 has decreased to 320 from 450, but the Cd4 percentage has gone up from 18% to 23%????? How can they move in opposite directions, and all in the space of 7 days?

Bear in mind that the second round cd4 test was done three days ago before I took my first dose of therapy, and on the same day that I was having a bad cold with 38 fever (which has now miraculously disappeared in 48 hours). Also I was having a herpes outbreak. My first cd4 test was unaffected by both of these factors.

New viral load is not yet ready.

Also they found some inflammation in the bronchi of the lungs. Don't really know how serious that is, but the doctor said we will just xray again in a month. She seems to think it could be from an old infection? I'm not coughing.
I had a 10 day flu in late December and had quite a thick phlegmy cough for a week after that, don't know if that would still show up as inflammation on the xray 5 months later.
Last year I also had a flu with cough after for a week or so before it went away.

Radiogram showed lymph nodes slightly enlarged throughout the body. But again this is nothing new, I've been able to feel the ones in my groin and armpits for up to 4 years. But that's by prodding and poking, you can't see them, and they don't stick out and you can't feel them if you just touch the skin normally.

How bad were your lymph nodes when you were diagnosed? Did they go down after you started therapy and how quickly?
« última modificación: Mayo 25, 2018, 09:12:36 am por an92 »

Desconectado JimDublin

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Re: An introduction and a question about my diagnosis numbers
« Respuesta #8 en: Mayo 25, 2018, 01:57:48 pm »
Citar
How bad were your lymph nodes when you were diagnosed? Did they go down after you started therapy and how quickly?

No, but large before starting treatment and went down quicker

Citar
In one week the Cd4 has decreased to 320 from 450, but the Cd4 percentage has gone up from 18% to 23%?????


Because it represents a % of the totally lymphocytes and the count could go up by 100 points in a single day .

Hmm ill post more when I'm at the laptop but you are focusing on something irrelevant

Jim
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Desconectado leatherman

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Re: An introduction and a question about my diagnosis numbers
« Respuesta #9 en: Mayo 25, 2018, 03:00:56 pm »
ill post more when I'm at the laptop but you are focusing on something irrelevant
let me help while your out and about Jim ;)


the cd4 test is simply a snapshot of your cd4 count at that moment. Cd4s fluctuate all day long, and by up to 100 points either way. Exercise lowers then raises your cd4 temporarily; while smoking will raise then lower the amount. It's wacky that way. :D

there is no treatment for raising cd4s. All we can do is remain virally suppressed, through adherence to daily meds, so that our cd4s are allowed to flourish without being used up by HIV

cd4s are a part of our immune system; therefore a cd4 count is not a measure of "healthiness" although the thinking is that more cd4s equals a more robust immune system. Being a quantitative measure not a quality measure though, the cd4 count does not reflect whether you have a strong/effective immune system. Some people with low cd4s are rarely "sick", while others with high counts can experience health issues. Having a high cd4 count does not mean you should feel well/healthy - that mainly depends on your food, exercise, and bad/good habits, although an immune system fighting off the germs does certainly help one to feel good  ;)

because the immune system you have is based on your genetics, there is no magic number of cd4s. what we do know is that when this count is <200, opportunistic infections can easily take hold. unless you had a cd4 count prior to your HIV diagnosis, there is no way to tell what your "normal" cd4 count should be. The "normal" range is considered 400-1200 (or thereabouts)

The CD4% is the percentage of white blood cells that are CD4 cells. In an HIV- adult the average CD4% can range from 24% – 64%. this is a much more stable number than the absolute CD4 count, and useful when a dramatic change (increase or decrease) is seen in the absolute count. (as in your case ;) )


with all that said, what you'll need to focus on is: are you virally suppressed ("undetectable", <20), and is your cd4 above 200.

if i left out anything I'm sure Jim or others will chime in.
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
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Desconectado JimDublin

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Re: An introduction and a question about my diagnosis numbers
« Respuesta #10 en: Mayo 25, 2018, 03:48:20 pm »
Thanks :)

OP I fully agree with what leatherman posted, and I hope his advice helps you. You would be wise to listen to him.

Jim
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Desconectado CaveyUK

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Re: An introduction and a question about my diagnosis numbers
« Respuesta #11 en: Mayo 26, 2018, 08:04:34 am »
Now I'm really confused about what's going on.
I got new Cd4 results today.
In one week the Cd4 has decreased to 320 from 450, but the Cd4 percentage has gone up from 18% to 23%????? How can they move in opposite directions, and all in the space of 7 days?

As others have said, they can fluctuate a lot and as long as you are >200 there isn't any cause for worry.

In some ways, the new set of numbers make more sense, as 23% is usually far closer to 320 than 17% is to 450.
http://i-base.info/qa/18/comment-page-1

Bottom line though is - don't worry about these numbers at all. Just focus on getting to Undetectable viral load, and everything else just takes care of itself.

Citar
How bad were your lymph nodes when you were diagnosed? Did they go down after you started therapy and how quickly?

I didn't have any noticeable lymph nodes at the point of diagnosis, and I haven't noticed them since (aside from when sick with a cold etc). Everyone is different although the worst thing you can do with lymph nodes is keep poking and prodding them, as thats the one recipe for making them sore and enlarged for longer!
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Desconectado an92

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Re: An introduction and a question about my diagnosis numbers
« Respuesta #12 en: Junio 06, 2018, 11:25:31 am »
Thanks everyone!
I was hesitant to reply until I had my first results, and now I want to share some good news (to maybe give others encouragement).

I've been on Tivicay and Descovy for 14 days now, and I've had my first tests done. VL will be available next week Monday.

CD4 up from 320 to 520.

Thrombocytes up from 31 to 61. Thrombocytes are still low, but out of the danger zone (below 50), and the improvement is very encouraging, means I can go back to the gym. Doctor said it can take more than 3 months for the thrombocytes to recover to normal levels (above 150) so there is no rush.

Kidney and Liver tests are all normal, so the therapy is well tolerated. No results yet about drug resistance.

No side effects at all from the Meds. Honestly, it's like taking a vitamin, just have to make sure it's the same time every day (I set an alarm). I take them with my lunch at 1 pm. Sleeping 8 or 9 hours a night, no digestion or stomach issues.

Waiting now for my viral load numbers. (Initial test before treatment showed 3000, repeat test one week later the day I started treatment was 8000 - but it was in a different laboratory, so the real number is somewhere in between those two).

DO you guys think that from the above (limited) results I could assume the therapy is working? Until I have the VL next week.

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Re: An introduction and a question about my diagnosis numbers
« Respuesta #13 en: Junio 06, 2018, 12:07:24 pm »
Look I'm glad you're happy with the results, I mean that and I can recall the feeling when my CD4 count for the first time was over 100 and I even had a party when it hit 200.

I don't want to take anything away from your good news or feeling of relief, however the focus is the VL and its takes some people a couple of weeks and others months to become UD, its not a race as such.

Jim
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Desconectado an92

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Re: An introduction and a question about my diagnosis numbers
« Respuesta #14 en: Junio 11, 2018, 10:34:18 am »
Update:
VL after 2 weeks of treatment is 26. (down from 8000).
As I understand, less than 20 is undetectable?

So hopefully, my next test in 2 weeks will show that.

Still having some petechiae pop up on my arms, especially after flying two times this past weekend and going to the gym. Hopefully that will be gone in a few months.

Also, a bit of folliculitis on my forearm hair and legs. But also hoping it will go away soon. Treating it topically with surgical alcohol which works very well.
« última modificación: Junio 11, 2018, 10:36:48 am por an92 »

Desconectado JimDublin

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Re: An introduction and a question about my diagnosis numbers
« Respuesta #15 en: Junio 11, 2018, 11:01:22 am »
Congratulations on being UD.

From a treatment point of view maintaining anything under 50 is considered successfully suppressed.

Undetectable simply in short comes from a lab term meaning the levels of the virus is below threshold to measure for that test. Most test go down to 50 or 20 copies nowadays.

Its also called "Viral Suppression or Virally Suppressed".

From a transmission point of view, if your UD for 6 months than you can't sexually pass on the virus if you remain adhered to your treatment, in this context anything suppressed below 200 copies is considered UD

Jim

Normal I link poz.com lessons and we have a few but this one from avert explains it very well I must admit

https://www.avert.org/living-with-hiv/antiretroviral-treatment/what-does-undetectable-mean

https://www.poz.com/basics/hiv-basics/starting-hiv-treatment
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Desconectado an92

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Re: An introduction and a question about my diagnosis numbers
« Respuesta #16 en: Junio 12, 2018, 01:45:31 pm »
Thank you for the valuable information!

I'm glad to know under 50 is suppressed.

Another update and question: My resistance tests came back, and my doctor said I have a mutation which makes me resistant to Protease Inhibitors. Now, it is something that I 'inherited' with this virus when i got it.

Is it very bad to be resistant to PIs? They are an older class of drug aren't they? Do they generally have more side effects as a class?

The doctor told me not to be concerned, as the combination I'm taking (Tivicay and Descovy) is from a different class of drugs.

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Re: An introduction and a question about my diagnosis numbers
« Respuesta #17 en: Junio 12, 2018, 01:54:45 pm »
Far as I know there are plenty of drugs nowadays and you have now a combo that works. Your resistance is not something to worry about, IMO.   The thing is to take your treatment and re-establish a normal feeling life as a person who is successfully treating hiv.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Desconectado an92

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Re: An introduction and a question about my diagnosis numbers
« Respuesta #18 en: Agosto 31, 2018, 10:36:12 am »
I want to give an update after 3 months of treatment to give hope to others, who may be getting diagnosed and feeling lost!

After 3 months of treatment my Cd4 is up to 558 and 33%.
Before I started treatment it was around 320, and 18% which is quite a low percentage!

After 3 months of treatment my thrombocytes are up to 153, which is the bottom end of normal, but to me it is amazing, because before I started treatment they were a very low 40. I no longer have thrombocytopenia! So happy.

Viral load was UD at 1 month after starting treatment, I'm still waiting for the 3 month result, it should be available on Monday (I only took the blood test yesterday, so only some of the results are available). But I fully expect its UD as last time.

Still no side effects from my medicines.
Lymph nodes that could be felt in my armpits and groin have become smaller and normal.

I encourage everyone who has received a diagnosis to trust their doctor fully, let them take care of you, and make sure you take your treatment at the same time every day without missing doses!

Have a good weekend everyone!
« última modificación: Agosto 31, 2018, 10:38:52 am por an92 »

 


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