Author Topic: Help! New DX been on Stribild for 5.5 months and numbers got WORSE (Read 7907 times)

bigsur123 · « **on:** December 28, 2016, 12:01:15 pm »

Hello all. Apparently I have been infected for at least 7*- years because I have not been active since then.
Here are original numbers on 060716
http://imgur.com/IH5U6Dc
with genotyping
http://imgur.com/KohyNek

Can someone check that genotyping? I had to immediately find a specialist on my insurance website and found this woman that squeezed me in but I feel a litle iffy about and heres why.
-even though my results faxed from My PCP had my CD4 over 200 she "accidentally" put me on super strong antibiotics" because she "Didn't realize I was at 224". Apparently I'm alergic to Bactrim so I had to stop due to a crazy rash.
- She Rx'd me "Stribild" which apparently she never really heard of but seemed to lookup on her phone
- I am reading the Genova is the new version of Stribild.. why was I given the old version. Both are covered under my insurance - just checked.
- She never (or the office) ever mentioned Gilead co pay or any assistance of any kind. I had to find out on my own

Here are some of my numbers.
VL - got better then worse
http://imgur.com/ZUFZxtv
VL - got better then worse
Cd4 - that one seems to still trend up
http://imgur.com/gtu300c
120216 Genotype - she ordered to see why things were taking so long most of which idnt work because my VL was too low?
http://imgur.com/G4e0jiS
2nd part of 120216 genotype - I guess one came back negative
http://imgur.com/anamp9Z
She hasn't seen the 120216 because since they came in shes been on vacation or otherwise booked.

With ALL This info - and thank you for everyone who read it all .. should I.
A: switch Dr's ASAP to the one I'm reading reviews about? I can NEVER get in contact with the current Dr's office - they always seem to be out. Should I even cancel my appt next week? She hasn't seen the 120616 results yet. The other Dr I am leaning to has appts open the 2nd week of Jan and they are in a group and not just a single dr.
B: Inquire about why I am not on the Genova - the newer version of Stribild

TY ALL - if anyone needs to see more labs - I would be happy to show.

PS I live in Dutchess County NY near the MHB.
PSS Should I be getting any flu shots or anything? No one seems to have mentioned things like this.. so I'm in the dark

Jim Allen · « **Reply #1 on:** December 28, 2016, 12:45:36 pm »

Hi

Welcome to the forum. Sorry to hear your having a difficult time with your doctor.
Look the truth is if you are unhappy with the service, speak up or move on to the next doctor if you have the luxury of doing so.

To be honest your numbers at start are not so bad, they are no great either but it is what is it and sometimes it takes longer for someone to reach UD than others, Key is you have now started treatment so continue to take the treatment, adherence to the medication so taking it daily is important.

Yeah about the vaccinations you should be offered the Hepatitis B.
Influenza (flu), Pneumococcal (pneumonia) and a few more but it is all depending on your situation / location. Talk to your doctor.

Jim

CaveyUK · « **Reply #2 on:** December 28, 2016, 12:53:51 pm »

Hi

Nothing seems particularly crazy about your genotyping. It doesn't seem you are resistant to any of the primary classes of drugs.

Your CD4 was low (224) but % was in a good range. There was no need to prescribe Bactrim to you, but aside from the fact you had issues with it, it shouldn't have done you any harm. People who are prescribed antibiotics for being <200 at diagnosis, often continue them until they are 'safely' above 200 anyway.

Stribild is fine and is a good combo. Genvoya has an updated component in it (TAF) which has a lower side-effect profile in terms of bone density and kidney problems but these issues only affect a tiny percentage of people anyway. There are still many people around the world happily taking Stibild, and there is nothing to say you cannot switch to Genvoya at some point in the future. I'd certainly as the question about why you were not prescribed Genvoya but don't freak out if you are not instantly switched.

Your CD4 has risen nicely on the drugs.

If those VL numbers are correct, you are bumping around a little but you'd really want to see another reading to see if there is a trend or not (from the info so far, there isn't necessarily a trend). The virus is still suppressed well and not long ago anything less than 200 was undetectable, so no need to panic. You just need to take another snapshot VL and see if it's going up further. My guess is it will be back down.

Besides, at those VL levels it is way too early to suggest treatment failure and put in for repeat or additional genotyping IMO, and as you can see, with a suppressed VL the resistance tests won't work anyway. All the indicators are you are responding well, and it's just a case of getting the VL under full control now.

As an aside - you do realise there are food requirements with Stribild? I ask because it's not the case with all HIV drugs, but the food you take on with that combo can affect the strength of the drug so not adhering to food requirements could be a factor, if the case.

As for the doctor. I wouldn't cancel the appt - I would go and see what their next steps are. Longer term, absolutely consider your options if you feel the current doctor is either not up-to-speed or non-communicative. But do that AFTER you have had your latest labs reviewed. Again, in my opinion only.

Regarding vaccinations. There are a number you should have. You should have the flu shot annually (this usually comes out around October time), and you should also be vaccinated for Pneumonia (pneumovax and prevnar13) as well as any Hep-B vaccines if applicable - the doctor should have run tests for exposure to HBV at point of diagnosis. These are all good questions to take to your next appointment.

bigsur123 · « **Reply #3 on:** December 28, 2016, 01:27:50 pm »

TYVM For the fast replies!
CaveyUK - This is interesting? " but the food you take on with that combo can affect the strength of the drug"

Is there a link to that somewhere. I had not heard of this.

I'm on my way to lab now to get another sample of VL... so crossing my fingers. I don' like that it bounced around a bit and TY for the verification about not having any resistance.. that stuff looked like greek to me!

update: ok I found this
http://www.thebody.com/Forums/AIDS/Meds/Q241971.html

"having some fat in the food tends to help. The reason why food is important for Stribild is that elvitegravir (one of the key parts of Stribild) levels are increased by 36% with a light meal and by 91% with a high-fat meal. Taken fasting, one can assume that the levels would be significantly lower."

You know I have read around a bit and never noticed that one. TY?!

Jim Allen · « **Reply #4 on:** December 28, 2016, 01:42:46 pm »

"TYVM".

No fucking clue, clear English please !

Anyhow yeah absorption and the need to eat when taking Stribild is a known fact and to be honest something your doctor should have discussed with you when starting treatment.

Jim

bigsur123 · « **Reply #5 on:** December 28, 2016, 01:50:54 pm »

yeah that I why I feel like I should go to another DR. I can never ever get a hold of her office! They are always out.

Also I forgot to mention .. a moth or two after Stribild..starting to get a constant ringing sound in my left ear.. and it never goes away. Not the worst thing. Ear Doc says he doesn't "see" anything there and no hearing loss. grrr.

Jim Allen · « **Reply #6 on:** December 28, 2016, 01:57:45 pm »

Okay well if you have ruled out any problems with your ear causing the ringing there are two courses of action firstly go back to your regular doctor, ringing can be caused by a number of things not just the ear or HIV medication related, and than secondly report it back to the HIV doctor when you next see them.

Jim

Some information on stribild
https://www.poz.com/drug/stribild

harleymc · « **Reply #7 on:** December 28, 2016, 07:25:00 pm »

Hi,
you're sounding somewhat anxious and frustrated. This is understandable given your inexperience with HIV but is not doing you any good.

Lets put things in perspective for you. You've had HIV for 7 years, by your own estimate, and weren't worried enough to get tested for years at a time. Now that you're diagnosed you are wanting a magic wand whereby you get the result you want rather than what is happening on a chemical- biological timeline.

Going on your starting vl and your current vl, you have cleared 99.95% of the virus from your bloodstream. You're not undetectable, but Stribild is working very well for you.

The information about taking Stribild with food is on the packaging insert. Which would have come with your first bottle of pills. Did you just think the insert was there for decoration or to be read because it might help you understand your medicine? You need to take care of your health in a proactive manner. Take your pill as prescribed.

Bactrim sensitivity is a bitch, been there done that. At cd4 counts that had been both below and marginally above the magic 200 mark it was not contra-indicated and shows a doctor who is looking out for their patient's health. Bad news is you got a very itchy rash, good news is you're not taking Bactrim anymore.

I'm not too impressed with your doctor for not mentioning that there are ways of getting assistance with medication costs. Whether or not you told her that you were going to have trouble paying she needs to let her new patients know that assistance may be available and refer them on to a local HIV service organization to find the options. But would you have read a piece of paper from your doctor?

Anyway, there's no need for your ID doctor to be on speed dial, see her every couple of months till you hit undetectable. You're not in any risk of sudden surprises.

You could chose a new doctor at random, but you'd be starting from scratch all over again and there's no guarantee you'll have a better result.

I know I sound like a bitch, but I've been doing this HIV thing for 30+ years. You need to be challenged on some of your thinking. If no one else will do it I'll be the tough love fairy.

You might want to talk to your primary care doctor about having anxiety issues. They may be able to refer you to a counselor or maybe your HIV service organization may be able to direct you to help.

Hope 2017 is good for you.
Hugs and lot of love

CaveyUK · « **Reply #8 on:** December 28, 2016, 07:57:17 pm »

Quote from: bigsur123 on December 28, 2016, 01:27:50 pm

TYVM For the fast replies!
CaveyUK - This is interesting? " but the food you take on with that combo can affect the strength of the drug"

Is there a link to that somewhere. I had not heard of this.

I just thought I'd mention it as it sounded like your initial meds consultation sounded a bit 'random' to say the least.

Look at the package insert for Stribild, and if you have thrown it away google 'Stribild package insert' and you should find it online. Make sure you fulfil the recommended dietary guidelines mentioned there and you will hopefully be able to finish kicking the viruses ass on full-power

bigsur123 · « **Reply #9 on:** December 28, 2016, 10:53:06 pm »

Thanks everyone. I wasn't panicking just packing everything into one paragraph ha ha.

The ear ringing .. and sometime random feeling there is a feather or a little
bug crawling around.. or almost like I just got out of the shower and a little drop of water hit my pillow once I layed down ... is a bit weird.

I could have sworn I saw somewhere around here about ppl reporting tin - whatever it was called after starting a course of RX?

I wonder if its part of the body healing too ..

TY (that's "thank-you" in case you don't know)

PSS I also 4got to mention that I missed about 4 days because the RX got delivered to a neighbors house :-) . now THAT is when I panicked..

Jim Allen · « **Reply #10 on:** December 29, 2016, 02:48:04 am »

Yeah, you don't have a character limit when posting here, mind you some people should

Anyhow yes tinnitus, the ringing in the ear, well sure some people have reported this after starting treatment, however people report all kinds of things here particularly the newly diagnosed who tend to put everything down to HIV or HIV medication.

Best thing to do is speak to your doctor about the tinnitus so they can check.

Jim

awakening · « **Reply #11 on:** December 29, 2016, 08:05:23 am »

I also developed tinnitus (without hearing loss) a few months into treatment with Triumeq. I was getting stressed about it but have come to find that the ringing comes and goes and wasn't here to stay as I initially feared, generally going along with the strength of my overall system. If I'm tired, stressed or getting a cold it becomes more prominent. I've also been seeing an acupuncturist as a complement to my ARV treatment and found a noticeable decrease in the tinnitus after acupuncture...which ultimately aims to bring balance to the body. Drink lots of water each day as you want to keep your kidneys cleaned out.

Of course consult with your doctor and if recommended an ENT specialist, but perhaps like other ARV sensitivities (such as sensitive skin, etc.) the tinnitus is a sign that your body is out of whack. Even the stress of worrying about the tinnitus can become a contributing factor. Personally what I'm having to work on since diagnosis is not assuming everything is because of the HIV/meds and not going to the worst case scenario in my mind with each new symptom (Google will gladly be an accomplice in this if you allow it!).

Here's a research article from the US National Institute of Health about some relationships between stress and tinnitus:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3371598/

Mightysure · « **Reply #12 on:** December 31, 2016, 10:39:43 am »

If I'm reading correctly, your PCP is treating you? Unfortunately, some don't know what they're doing. The don't stay update on treatment protocols, and they don't realize how much more stress they add to this situatuon. He should've known that Stribild is old news and genvoya is the med to prescribe if that particular integrase inhibitor is the medication preferred.
But you're doing fine on it. You had it for 7 years untreated. You're very fortunate. It takes time for cd4 to reach normal levels sometimes and and your VL may not discrete in a linear fashion always. But youre definitely on the right track.

Orez · « **Reply #13 on:** January 01, 2017, 03:10:48 am »

This is what I posted on another thread but may help with your question: I know this has already been answered but will just add my experience with taking meds. For me I was diagnosed it Feb 2016 with over 1,000,000 vl (yup you read that right) I started on Stribild which brought my vl down alot (can't remember count). Then I went for another test and it was down to 80 vl. At that point I switched to genvoya because I was getting extreme headaches. I still get headaches with Genvoya but they are usually mild and sometimes feel faint. I just went in Dec 2016 and my results was <20 vl. My CD4 count has always been in the 700 range. As for taking my meds I usually take them around 6:00 PM +/- 1 hour which is when I usually eat supper. However if I know I will be occupied during that time I take it earlier or later. My rule is not to take meds before 3:00 PM and at least by 9:00 PM. For me it seems to be working. Everyone is different.

Like you I also found out about Gilead Co-Pay when duing my own search on how I was going to pay for Stribild. Another thing I do when taking my meds is to not taking any other meds or supplements at least one hour before and after taking Genvoya.

JosephP · « **Reply #14 on:** January 02, 2017, 02:03:44 pm »

Quote from: bigsur123 on December 28, 2016, 12:01:15 pm

Hello all. Apparently I have been infected for at least 7*- years because I have not been active since then.
Here are original numbers on 060716
http://imgur.com/IH5U6Dc
with genotyping
http://imgur.com/KohyNek

Can someone check that genotyping? I had to immediately find a specialist on my insurance website and found this woman that squeezed me in but I feel a litle iffy about and heres why.
-even though my results faxed from My PCP had my CD4 over 200 she "accidentally" put me on super strong antibiotics" because she "Didn't realize I was at 224". Apparently I'm alergic to Bactrim so I had to stop due to a crazy rash.
- She Rx'd me "Stribild" which apparently she never really heard of but seemed to lookup on her phone
- I am reading the Genova is the new version of Stribild.. why was I given the old version. Both are covered under my insurance - just checked.
- She never (or the office) ever mentioned Gilead co pay or any assistance of any kind. I had to find out on my own

Here are some of my numbers.
VL - got better then worse
http://imgur.com/ZUFZxtv
VL - got better then worse
Cd4 - that one seems to still trend up
http://imgur.com/gtu300c
120216 Genotype - she ordered to see why things were taking so long most of which idnt work because my VL was too low?
http://imgur.com/G4e0jiS
2nd part of 120216 genotype - I guess one came back negative
http://imgur.com/anamp9Z
She hasn't seen the 120216 because since they came in shes been on vacation or otherwise booked.

With ALL This info - and thank you for everyone who read it all .. should I.
A: switch Dr's ASAP to the one I'm reading reviews about? I can NEVER get in contact with the current Dr's office - they always seem to be out. Should I even cancel my appt next week? She hasn't seen the 120616 results yet. The other Dr I am leaning to has appts open the 2nd week of Jan and they are in a group and not just a single dr.
B: Inquire about why I am not on the Genova - the newer version of Stribild

TY ALL - if anyone needs to see more labs - I would be happy to show.

PS I live in Dutchess County NY near the MHB.
PSS Should I be getting any flu shots or anything? No one seems to have mentioned things like this.. so I'm in the dark

Unfortunately, you live a bit far from my doctor's office otherwise I would urge, no beg!, for you to make an appointment with her. The most caring human being in the world. She put me on Atripla when dx'd but I couldn't tolerate.. Insurance wouldn't cover Stribild. She went to bat for me with the insurance co and got them to cover Stribild. When Genvoya was approved she asked me if I wanted to switch, explaining the benefits of newer version of Stribild. I switched. Yes, there are 'spikes' in your numbers and sometimes CD4 takes a while to recover. My initial numbers were 198 and VL 78K. Three months taking Stribild, VL dropped to 12 and CD had climbed to 205... Rather slow progress, I thought but what do I know about my new status? . Next labs and VL is UD and has been ever since, except a spike to 26 and I panicked! Doctor said it was very common and not necessarily all attributable to HIV. Could be the labs!! She ordered new. UD. My CD4 is about 500 now and seeing specialist only three times a year and only labs for VL are now done. Others are now annual.
Hang on... Switch physicians... PCPs are great but little behind on HIV. Take meds stringently. I was given a window of about 4-6 hours... So I take mine not earlier than 4 and no later than 10pm.. Seems to work rather well. Take it easy... Relax. I know you have recently diagnosed but we all went thru different stages of anxiety and not knowing what is in store made it very, very nerve wracking. I am not, by any stretch of the imagination, a long term survivor but have managed to cope with it, but I couldn't have it done without my PCP and my ID doctors and, more importantly, THEIR STAFFS!!
Hope 2017 brings you peace, health and love...

bigsur123 · « **Reply #15 on:** January 04, 2017, 04:23:40 pm »

Quote from: Mightysure on December 31, 2016, 10:39:43 am

If I'm reading correctly, your PCP is treating you? Unfortunately, some don't know what they're doing. The don't stay update on treatment protocols, and they don't realize how much more stress they add to this situatuon. He should've known that Stribild is old news and genvoya is the med to prescribe if that particular integrase inhibitor is the medication preferred.
But you're doing fine on it. You had it for 7 years untreated. You're very fortunate. It takes time for cd4 to reach normal levels sometimes and and your VL may not discrete in a linear fashion always. But youre definitely on the right track.

Actually my PCP is the one that found the DX due to me having a haze in my eye and my eye dr ordering tests and found my WBC way too low. The CD specialist is who put me on Stribild (looked up something quick on her phone) . Anyway I have decided to switch specialists. I will see them 01/11/16 and will have a lab result back from 12/29 drawing which I will post on here. I wish I came to this site earlier.

I think the specialist is more ane expert onr lymes disease and Dutchess county NY (where I live) is #1 infected rate for the entire USA according to the CDC...

What about disclosing to

dentist
eye dr
oral surgeon
other specialists?

Jim Allen · « **Reply #16 on:** January 04, 2017, 04:48:55 pm »

Hi

Well disclosing your HIV status to a healthcare provider is going to be important, mainly for your own safety so they can ensure you not only get the correct treatment but also so they don't prescribe or give you any drugs that would interact badly with your HIV meds. Its serious stuff.

Jim

harleymc · « **Reply #17 on:** January 05, 2017, 01:43:14 am »

All your health care providers are bound by confidentiality laws.

My dentist checks for oral opportunistic infections and tumors and my optometrist checks my eyes. My pharmacist checks any potential medication and supplement interactions.

Disclosing to healthcare workers is good practice. It results in value adding.

bigsur123 · « **Reply #18 on:** January 05, 2017, 08:54:46 am »

The thing is .. like .do I tell the Dr behind closed doors .. because if you fill it on an application.. the ENTIRE office knows about it

Jim Allen · « **Reply #19 on:** January 05, 2017, 09:31:16 am »

Hi.

The entire office who process you medical records would, part of the job.
Look if it makes you that jumpy tell the doc behind closed doors.

Nobody who works in doc office cares that you have HIV and you are going to be living with it for the rest of your life, you can't be stressing about the office clerks and forms for the rest of your days, the sooner you learn to get on with the better. I know that sound hash, It's not meant to be rude.

Jim

Tonny2 · « **Reply #20 on:** January 05, 2017, 08:45:53 pm »

OJO hello there...i know how you are feeling, but if the doctor who you are seeing you knows about all your health problems, you will get better treatment...like you mentioned your eye doctor, if he knows you are hiv positive, he will take a better look to your retina, which if you were to have low cd4, which i don't know it, it's very important for your opthamologist to know...be strong, nobody cares if you are positive, chin up, there is nothing wrong being hiv positiive...good luck...hugs ojo

bigsur123 · « **Reply #21 on:** January 06, 2017, 07:43:28 am »

So I just got my numbers back in from 12 29 16 and they got a little worse.
Really I wonder why exactly. I go to see a new specialist next week.

PS looking through the recent tests.. My carbon dioxide is at the upper threshold of in range?
http://i.imgur.com/pLBlDF4.jpg
my rdw was high at one point but the specialist said "it's a nothing thing"
WBC - which is what triggered the mass of tests in the first place
http://i.imgur.com/SBsPbeb.jpg

Besides ringing in 1 ear and sometime itchy skin (which I think is from dry skin in winter) I don't have any side effects that I can think of... hmmm

VL copies 1 122916
http://i.imgur.com/e3gAm2b.jpg
VL log copes 2 122916
http://i.imgur.com/AhkK4Tt.jpg

At the same time at least my cd4 is trending up wards?
http://i.imgur.com/ONYmt33.jpg

Can anyone taken a slow consistant turn up.
Many ppl on there I have read have VL under 20 but are having problems
with CD4.. I am somehow the opposite. Supposedly I don't have mutations
but from some of the inter-stellar stories of ppl getting to under 20 in record time
maybe I got a little too excited.

All other numbers are in range. If anyone wants to see them please let me know
http://i.imgur.com/SmrHqs0.jpg

Thanks for all your patience.
And may I say... if it helps.. I was very leary of ppl with Aids prior to this.
You wouldn't BELIEVE how much *compassion and *concern I have now for people that are sick or have life long conditions... to be honest, and some people may get mad at me for saying this...having this infection has done me alot of good in *OTHER ways.
sick :-) For what it's worth..

few more test summaries
carbon dioxide
http://i.imgur.com/pLBlDF4.jpg
rdw (my Dr said "it's nothing" when it went out of range.. (?)
http://i.imgur.com/eR84vx9.jpg
WBC - which is what started this whole mess of tests
http://i.imgur.com/h9rVLX3.jpg

CaveyUK · « **Reply #22 on:** January 06, 2017, 07:53:11 am »

Numbers are looking good.

Just stick with the food requirements for your meds, and you should hopefully see UD status at your next blood draw

bigsur123 · « **Reply #23 on:** January 06, 2017, 08:24:39 am »

Quote from: CaveyUK on January 06, 2017, 07:53:11 am

Numbers are looking good.

Just stick with the food requirements for your meds, and you should hopefully see UD status at your next blood draw

When are ppl taking their meds?
I used to take them later in the day..and now take them earlier...maybe I should go back to before bed?

Jim Allen · « **Reply #24 on:** January 06, 2017, 08:41:34 am »

Hi

Look it can take people longer to reach UD, no reason to panic, the fact that some do in it record time means nothing to you. You are over thinking and stressing.

Take your meds as instructed, daily that is all you can do and treat anything else that is causing problems as you normal would with your doctor.

I agree with CaveyUK that next blood draw will give you a better picture, the result you have are nothing more than a snapshot moment. The only focus from a HIV perspective for now is the VL and that takes time.

If and when it takes too long your doctor may look into switching you to a different treatment.

Jim

CaveyUK · « **Reply #25 on:** January 06, 2017, 11:53:16 am »

Quote from: bigsur123 on January 06, 2017, 08:24:39 am

When are ppl taking their meds?
I used to take them later in the day..and now take them earlier...maybe I should go back to before bed?

Just make sure you take them with the food requirements for that combo. Time of day won't matter and should really be taken at the time that suits your lifestyle best.

For me, I take mine at around 10pm as most days I am at home at that time. Others take theirs with breakfast. It really doesn't matter.

Mightysure · « **Reply #26 on:** January 06, 2017, 08:11:41 pm »

If your doctor isn't concerned, I'd let that be a good sign. I can't tell you not to worry, because you will. It takes some people longer to get to UD sometimes. You were positive for a very long time without any treatment, so the virus has had a lot of time to build up reservoirs, so it may take your body some time to get viral replication under control.
s
If it continues to increase, maybe your doctor should consider tests for drug levels to see if your body is properly absorbing the medication?? It's also very important to take it with food. It's necessary to properly absorb the elvitegravir component of Stribild.

harleymc · « **Reply #27 on:** January 06, 2017, 09:50:17 pm »

Your viral load is down 99.94 percent from pre treatment. I notice you don't put your pre treatment figures on your graph... presumably cause the 246116 vl doesn't fit with the figures you are getting now.

If you're going to fixate on VL then fixate on the dramatic improvement you're had.

Orez · « **Reply #28 on:** January 11, 2017, 09:31:07 pm »

Quote

bigsur123: The thing is .. like .do I tell the Dr behind closed doors .. because if you fill it on an application.. the ENTIRE office knows about it

I use to work in IT at a hospital. Anyone who works at a medical center has to sign a HIPPA agreement (which is law). What HIPPA does is prevent anyone who works in a medical facility from disclosing patient names and health status to anyone at anytime.

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Author Topic: Help! New DX been on Stribild for 5.5 months and numbers got WORSE (Read 7907 times)