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Author Topic: One year down, many more to go  (Read 3453 times)

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Offline daveR

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  • Posts: 290
One year down, many more to go
« on: June 25, 2017, 02:22:43 am »
Good day BM's,

June 25th 2016, a day I will never forget. The word positive written not just once but 3 times in the end on my HIV test form. But here I am 1 year later and still healthy. Just had my blood work done, original diagnosis was VL of 21800 and a CD4 of 330 at 31%. Started on Truvada and Edurant. After 10 weeks the VL was in-detectable and has remained there. My CD4 peaked at 960 at 36% around October but numerically have been in decline and currently stand at 660 but still 36%.
Now even though I know those figures still leave me in the relatively normal range along with the non positive population there was still something about seeing the number drop. I think it was more to do with my own high hopes of it actually increasing. Still happy with them though. The amazing thing was my other figures. Since 1993 the doctors here have been telling me to change my lifestyle or die a young man due to my cholesterol being between 220 and 265 every year and my fasting glucose levels being rarely blow 110. I checked them 3 months ago and found them to both be in normal range and again on my last test a few days ago they were still there proving it was not a fluke reading. It has taken a major change to my way of living though, no alcohol, junk food, sweets, chocolates or any other of life's small pleasures. Plenty of fresh fruit and vegetables, steamed fish and chicken. Add to this a 3 times a week full body work out with energy burning compound moves and some cardio, plus a whole lot of will power and I achieved something that I thought was impossible. Just goes to show I was not trying hard enough before.

I am still on genuine Truvada at the moment but my ID doctor suggested this time that I make the move to generics, they do not sell them at the hospital I use but she offered a letter for the Red Cross in Bangkok valid for one year. I didn't take her up on it this time as I was nearly out of pills so I took 3 months of the real stuff and plan to start the generics when this batch of pills have finished. May even move my treatment to Bangkok after reading posts from others on here. My doctor just took the blood and then emailed the results to me, no discussion. Nothing actually stops me going back to see her but it just seems unprofessional. 

As for any major health issues due to the virus or meds, I can say I have had none. The stomach issues I had at the beginning passed after 5 weeks, I do get periods of lethargy and it takes a fair bit of will power during these to get to the gym but I manage all the same. The lethargy seems to be more after lunch when I take the meds, may just be a mental thing as it is periodic. I have had one ear infection this past year which cleared itself so nothing untoward there. All in all health wise I am very pleased.

The only downside to life so far is I lost my job in the oil industry due to cuts a few weeks back. It will be all but impossible to find a new one internationally as I don't know many companies that do not ask for an HIV test. Just one indication of the bias and stigma surrounding this condition, even with the U=U philosophy slowing coming out. I think it will be may years before we can fully integrate back into society with out any discrimination. Just one of lifes curve balls that has to be hit back.

Take care
Dave

Offline Tonny2

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Re: One year down, many more to go
« Reply #1 on: July 01, 2017, 12:53:58 pm »


         OJO         HELLO DAVE...CONGRATULATIONS ON YOUR FIRST ANNIVERSARY, YOU WILL BE CELEBRATING LOTS OF THEM, ESPECIALLY WITH THOSE NUMBER, 36% IS GREAT, ABSOLUTE CD4 THEY ARE LIKE A YO-YO, DO NOT WORRY, WHAT IT IS
IMPORTANT, YOU ARE UNDETECTABLE!!!...GLAD YOU HAVE YOUR CHOLESTEROL AND GLUCOUSE UNDER CONTROL, I GUESS THERE ARE MORE DANGEROUS THAN HIV ITSELF, GOOD FOR YOU, KEEP DOING WHAT YOU HAVE BEEN DOING...SORRY ABOUT THE LOSS OF YOUR JOB, I HOPE YOU CAN FIND A SOLUTION SOON...HUGS AND AGAIN, CONGRATULATIONS                                                                          OJO

Offline JosephP

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  • Posts: 318
  • Keep looking FORWARD... Dx'd 8/10/2013...
Re: One year down, many more to go
« Reply #2 on: July 01, 2017, 06:33:14 pm »
 :) ;) Yeah, Dave... Keep on adding years... I am going on 4!  :D :D
Today January 20, 2020, I have taken 2378 pills of my ARV since first pill. This means 79 bottles of 30 pills of ARVs at an average of $3950 per bottle or $313,103 USD for my treatment. I have a compliance of 99.83% taking my meds and only .17% (or 4 pills) non-compliant. Of these four pills two I forgot completely, One I lost and one I didn't have with me while traveling! I became UD 3 months after treatment start   ***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 daveR

  • Member
  • Posts: 290
Re: One year down, many more to go
« Reply #3 on: July 03, 2017, 01:22:27 am »
@Tonny2
Thanks, I am sure things will work out with the job. I think life is not supposed to be easy even though I wish it was.

@JosephP
Thank you, you keep on going too and I will being dragging myself along a few years behind you.

Dave

Offline daveR

  • Member
  • Posts: 290
Re: One year down, many more to go
« Reply #4 on: December 03, 2017, 02:45:34 am »
Another six months has passed, more blood samples given. I see no point in starting a new thread but would still like to document my progress in this thread.

Eighteen months in, still taking Truvada, genuine, and Edurant. Missed only one Edurant pill in all that time and always taken with a large meal at the same time plus or minus thirty minutes.
Viral load still undetectable, CD4 dropped by 20 from 660 to 640 but the percentage increased from 36 to 37%. I am more than happy with the figures. I have so far never felt sick in anyway that could be attributed to the HIV.

I did stop going to the gym and have seen my fasting glucose and cholestrol rise to outside the ideal range again, nothing major but I have just rejoined a gym and startted making the effort to reduce the numbers again. Looks like this health and fitness thing will be a life time requirement, I just need to strike a happy medium as my previous routine just wore me down physically and caused to many joint pains. Going to start of intense to get the figures in place then try to find a more restfull maintenance routine.

All other blood work was good except the creatinine levels, slightly elevated. Readings at diagnisis priot to taking meds was 1.06, went up to 1.2 after 6 months which was past the limit at the hospital I use. They have an upper limit of 1.17. I managed to get it down to 1.15 for the next 2 tests but now it is back up to 1.18. Just out of specification. I have to admit I cut back my water intake so this may have impacted it. I also use Nasonex nasal spray for sinus issues, 4 months now. I did a check for drug interactions and found none with my meds but due to the elevated creatinine levels I did a quick google search and found that Nasonex has been shown to increase creatinine in people over 50 using it for 1 to 6 months, levels dropped to normal after longer use. I am going to continue with it, increase my water intake again and check again in 3 months. I thought it was worth a mention as I have seen a couple of posts lately with people who's creatinine levels have increased. It may be worth checking any other medication you are taking to see if that is the culprit, I was very surprissed at the nasal spray.

Good luck and all the best
Dave

Offline leatherman

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  • Google and HIV meds are Your Friends
Re: One year down, many more to go
« Reply #5 on: December 03, 2017, 06:39:24 am »
CD4 dropped by 20 from 660 to 640
that amount of change actually means nothing.  ;)

here's some stuff about cd4s that I cobbled together from previous posts of mine:

CD4s are highly variable and can change by 100 pts within a single day.  CD4s are NOT a measure of "health" but simply a snapshot of the immune system at the time of the blood draw. there is a lot of variability to cd4 counts (the "normal" range is very wide from basically 400-1500) and except for the above/below 200 mark, we know now after all these years that there is little diagnostic use to the cd4 count as it climbs above 300

There is currently no way to measure how strong/effective a person's immune system is and that is not what the cd4 count reflects and why the cd4 count is not as important once a person gets above 200, and even less important when the count reaches 500 or higher.

The most current HRSA/HAB guidelines extended the testing range for those who are virally suppressed to once every 6 months in a 24-month period. The word is that the next update will extend VL testing to once a year with cd4 testing optional for PLWH with consistently suppressed viral loads.

Quote
the current guidelines are:
After 2 years of ART, VL consistently suppressed and CD4 consistently 300-500:
Time between viral load test can extend to every 6 months for patients with consistent viral suppression for >=2 years.
With the cd4 test done every 12 months

After 2 years of ART, VL consistently suppressed and CD4 consistently >500 cells/mm3:
the CD4 test is Optional

https://aidsinfo.nih.gov/guidelines/html/1/adult-and-adolescent-arv-guidelines/458/plasma-hiv-1-rna--viral-load--and-cd4-count-monitoring
"Table 4. Recommendations on the Indications and Frequency of Viral Load and CD4 Count Monitoring"
http://hiv.ucsf.edu/docs/hiv_monitoring_guideline.pdf
"Table. Summary of HIV-specific routine laboratory monitoring" (pg 5)

These guideline changes reflect the science of monitoring patients to decrease the lab visit burden to patients and the associated costs of those tests (lab work and doctor appts). While that's a win-win for patients (less trips to the doc, less jabs with a needle, and less money spent to health care), in cases where these services are covered through a state's ADAP or Medicaid program, these cost savings will help states to provide more services for even more people.
leatherman (aka Michael)

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

 


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