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Author Topic: Latest ID Visit  (Read 704 times)

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Offline dml1964

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Latest ID Visit
« on: January 10, 2019, 02:45:49 pm »
My latest visit went very well. Still undetectable for about 15 months now, cd4 continues to slowly rise, it is up 159!! Liver enzymes are slightly elevated but nothing to worry about right now. I am feeling great and I rarely even think about this anymore, I take my pill daily and move on about my life.

Offline Jim Allen

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Re: Latest ID Visit
« Reply #1 on: January 10, 2019, 02:47:07 pm »
 :) Great update and, glad to hear you are feeling great.

Jim
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Offline LeftyBowler300

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Re: Latest ID Visit
« Reply #2 on: January 10, 2019, 04:52:16 pm »
That's awesome! Is it the HIV medication elevating the enzymes or are you on any prophylaxis?
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
Nov 5, 2018 - CD4 104 (7%), UD
Jan 26, 2019 diagnosed with HIV-associated DLBCL with 6cm mass near liver w/ abdominal fatty tissue involvement
6 rounds of RR-EPOCH
2 rounds of high dose methotrexate
11 Lumbar punctures with intrathecal chemo
June 5, 2019 - Complete Response/Remission

Offline dml1964

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Re: Latest ID Visit
« Reply #3 on: January 10, 2019, 05:24:57 pm »
I am still taking dapsone daily and aztiromycin once a week. This may be the issue  only time will tell.

Offline LeftyBowler300

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Re: Latest ID Visit
« Reply #4 on: January 10, 2019, 10:33:22 pm »
I am still taking dapsone daily and aztiromycin once a week. This may be the issue  only time will tell.

I'm surprised you're still on Azithromycin at >100 CD4. My doc took me off (couldn't be happier. It did a number on my stomach)
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
Nov 5, 2018 - CD4 104 (7%), UD
Jan 26, 2019 diagnosed with HIV-associated DLBCL with 6cm mass near liver w/ abdominal fatty tissue involvement
6 rounds of RR-EPOCH
2 rounds of high dose methotrexate
11 Lumbar punctures with intrathecal chemo
June 5, 2019 - Complete Response/Remission

Offline dml1964

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Re: Latest ID Visit
« Reply #5 on: January 11, 2019, 08:19:40 am »
I hate the azithromycin myself, it gives me stomach issues pretty bad. She said she wanted me >100 for 6 months before taking me off it. My last 2 tests were 119 back in September and 159 this week. Next test will be in may. I would like to get off everything and only be taking 1 pill a day, my biktarvy. I also think next time I will start being seen every 6 months instead of 3-4 months. I was in pretty bad condition when all this started.

Offline Loa111

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  • Posts: 182
Re: Latest ID Visit
« Reply #6 on: January 11, 2019, 12:24:33 pm »
Great to hear you are progressing. I am envious of your new CD4 count, it is nearly double my most recent count lol  ;D

I had inflated Liver readings too, I am on prophylaxis too. So they changed me from Septrin, then to Dapsone, and now they have me on some other prophylaxis shit which is liquid based, take 2 spoons of it after food. Good news is the liver readings dropped back to normal. (Also changed to from Genvoya to a different med, just in case that was the cause).

I cannot wait to get off the prophylaxis, hoping my CD4 will be recovered enough by the end of this year. Just dislike have to shovel antibiotics into me each day, and it will be one thing less to think about once I can get off it.

 


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