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Author Topic: Lymph Nodes became swollen nearly immediately after starting Stribild..  (Read 4043 times)

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Offline wolfthorn

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Has anybody had this experience?

I am pretty bad off, numbers wise, especially since I didn't present in the hospital. I took an OraQuick , had it come back positive, and then was diagnosed with CD4 less than 20 with viral load 290k!

I started Bactrim and Zithromax  immediately for prophylaxis...

Then about 2 wks ago I took my first Stribild tablet.
2 hours after taking the tablet, I felt my inguinal lymph nodes (in the groin) swell up. My other lymph nodes also felt more full.

Could this be a battle going on inside my lymph nodes? I don't think it's immune reconstitution syndrome as it's so early. I am hoping for good numbers at my one month check up.

I know I'm feeling better, I ran today further than I've run in years, and I am eating
like a horse!


________________________________

7/10/13 Positive Oraquick. Vomited all over the testing kit.
7/11/13 labs drawn, doctor shocked
7/13/13 CD4 20, VL 290k .. start Bactrim, Zithromax
7/25/13 Start Stribild...
8/4/13 Run 3 miles
7/10/13: Oraquick at Home (+)
7/11/13: CD4 <20, VL 286,000
7/26/13: Start Stribild, Bactrim, Azithromycin
8/13/13: CD4 64, VL 1194
9/11/13: CD4 87, VL 511
10/14/13: CD4 164, VL 34
10/15/13: Stop Azithromycin!

Offline tednlou2

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Re: Lymph Nodes became swollen nearly immediately after starting Stribild..
« Reply #1 on: August 05, 2013, 11:48:59 PM »
I just read a question to a doc at The Body about this.  Perhaps it was you, but maybe it was someone else.  If it wasn't you, I will share what his response was.  I'm sure more knowledgable members can give you some info, as well. 

http://www.thebody.com/Forums/AIDS/Meds/Q230715.html

Online bmancanfly

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Re: Lymph Nodes became swollen nearly immediately after starting Stribild..
« Reply #2 on: August 06, 2013, 08:50:19 AM »
First of all welcome.

Swollen lymph nodes in someone with a CD4 count of <20 and a viral load of 290k would not be unexpected. 

"2 hours after taking the tablet"
Not likely to be from the meds.  Also seems too early to be immune reconstitution,  if that happens at all.

You presently have a very compromised immune system.
 
You might want to hang up the running shoes for a few weeks.
« Last Edit: August 06, 2013, 08:53:23 AM by bmancanfly »
"The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt."

 Bertrand Russell

Offline wolfthorn

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Re: Lymph Nodes became swollen nearly immediately after starting Stribild..
« Reply #3 on: August 07, 2013, 08:39:37 PM »
Why would I stop exercising?
7/10/13: Oraquick at Home (+)
7/11/13: CD4 <20, VL 286,000
7/26/13: Start Stribild, Bactrim, Azithromycin
8/13/13: CD4 64, VL 1194
9/11/13: CD4 87, VL 511
10/14/13: CD4 164, VL 34
10/15/13: Stop Azithromycin!

Offline wolfthorn

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Re: Lymph Nodes became swollen nearly immediately after starting Stribild..
« Reply #4 on: August 07, 2013, 11:17:54 PM »
I know it may sound odd, but I am trying to maintain a positive outlook despite my severe disease.

Fortunately, there's a treatment available for HIV. It's called HAART.

Stribild has me feeling better already... it's not just the placebo effect. My viremia is definitely lower than it has been in months. Luckily I tolerate it pretty well.

I'm working like a dog, as usual, but getting more sleep and going to the gym regularly. I got a parakeet for my birthday and I'm training her. Mycobacterium avium be damned!

I know I still face potential dangers in this first year of HAART. I will have more  health issues during my life. Dating will be harder. Still, I'm not in Africa without access to meds!

In my old job I had multiple people die in my hands. The cold slimy feeling and greenish hue haunt me.

I gave CPR to someone from my hometown who died of AIDS related complications. He didn't make it.

I know I CAN die, in ways that can fill a thick textbook.

I also watched people die of untreatable conditions. People I love. People I didn't know. It sucks.

But what am I supposed to do? I am going to live and do everything I can to live well.  People are dissatisfied with healthy lives. I was, when I was negative! Everyone wants to be a rock star, fat cat, family man adventurer. We're all mortal.
It's what you do that defines you.

This whole thing was a horrible accident. An ambien-ed night with someone I didn't trust. Years of fear of a positive test despite being a safe-sex adherent. I got  Oraquick from CVS when I realized it wasn't just "general rack and ruin" and the deaths in my family that were causing my health problems.

But now I'm doing my best to beat it, move on , and do great things.

It's a nasty obstacle, a beast that could always come out and hurt me
but if I take my magic pastille I have a good chance of keeping him away.

I am not hanging up my running shoes, I'm buying new ones.
7/10/13: Oraquick at Home (+)
7/11/13: CD4 <20, VL 286,000
7/26/13: Start Stribild, Bactrim, Azithromycin
8/13/13: CD4 64, VL 1194
9/11/13: CD4 87, VL 511
10/14/13: CD4 164, VL 34
10/15/13: Stop Azithromycin!

Online bmancanfly

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Re: Lymph Nodes became swollen nearly immediately after starting Stribild..
« Reply #5 on: August 08, 2013, 10:26:24 AM »
Thanks for sharing your story.  I'm glad you are adjusting to your new reality and feeling better.

No one suggested you should "hang up your running shoes forever"  I only said for "a few weeks".  At least until you get your next VL results.

The numbers you posted indicate a challenged (high VL) and compromised (low CD4 count)  immune  system.  Yet you seem to want to continue with your life as if nothing is amiss.   

HIV positive people can live full, complete and active lives,  if they have their HIV under control.    You don't yet,  although I'm sure you will.

I workout almost every day and can attest to the benefits,  but if I had a VL of 290k I might take a few weeks off until I got that under control.   I would do what I could to scale back may work schedule too - until I got my VL under control.

Just a friendly suggestion.  Nothing more.

 






"The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt."

 Bertrand Russell

Offline wolfthorn

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Re: Lymph Nodes became swollen nearly immediately after starting Stribild..
« Reply #6 on: August 08, 2013, 08:34:01 PM »
I most certainly want to continue with my life... And live as well as possible. If there is something I have to do I will do it.

Does exercise interfere with viral suppression? I never heard that. At what level of viral load is it dangerous to exercise?  I am not working out like I did before I became ill.  But I am better than I was at my worst, and now that I am on treatment my viral load should be going down pretty rapidly. It's probably already at its lowest in a year or more.  I already cried in bed for a week, but I don't think that's very good for my health at all. What do you suggest i do other than take my medications, eat regularly and sleep plenty?

Unfortunately I am in no position to scale back my mandatory work activities, unless I want to quit my job, which would be dangerous for my access to care. I have opted out of some night meetings, though. They seem so abusive and stupid in retrospect. 

 i also took a day off after my oraquick to go to the doctor. What would I do in the time I had off anyway that would expedite my recovery?

I thought that if I took my meds consistently that they would do the job of suppressing the virus and then my immune system could rebuild itself. Obviously I am celibate until virus is suppressed, just to reduce risk to others.

 I am restricting my activities in terms of not going into caves, avoiding steam baths, not eating raw meat, not traveling to India, avoiding being coughed on.... But other than eating and avoiding sources of opportunistic infections, what else can I do?

I am trying to repair my relationship with my boyfriend, but I know that takes time.  I figure it will be better to look fit than to look sick to woo him back. 

It's pill time...

7/10/13: Oraquick at Home (+)
7/11/13: CD4 <20, VL 286,000
7/26/13: Start Stribild, Bactrim, Azithromycin
8/13/13: CD4 64, VL 1194
9/11/13: CD4 87, VL 511
10/14/13: CD4 164, VL 34
10/15/13: Stop Azithromycin!

Online Ann

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    • Num is sum qui mentiar tibi?
Re: Lymph Nodes became swollen nearly immediately after starting Stribild..
« Reply #7 on: August 09, 2013, 05:47:29 AM »
Hi Wolf, welcome to the forums.

You know your body (we don't...), so if you are not experiencing any problems while exercising, go for it. Just pay attention to your body and don't overdo it. Keeping to your normal routines is important right now and will help your emotional health as well.

The only way I could even remotely see how exercising at this point would be detrimental is if you weren't already exercising before your diagnosis. If you simply continue doing what you were doing all along and not suddenly doing twice the amount, it can only be beneficial.

Like I said, you know your body like nobody else can. Pay attention to what it's telling you and you won't go far wrong. If you feel you need to stop and rest, stop and rest. Don't push yourself. Make sure you're well hydrated - this is important anyway when you're on meds.

My motto for living well with hiv is - all things in moderation, including moderation. I normally apply this to things like drinking alcohol, but it fits in your situation (exercise) as well. Learn to listen to your body and do what it's asking you to do.

And when in doubt - ask your doctor!!!

You're going to be OK. OK? ;)

Ann
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Online bmancanfly

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Re: Lymph Nodes became swollen nearly immediately after starting Stribild..
« Reply #8 on: August 09, 2013, 11:47:29 AM »
You know your body (we don't...), so if you are not experiencing any problems while exercising, go for it. Just pay attention to your body and don't overdo it.

People with compromised immune systems often don't receive the warning cues that something is wrong because there is little or no immune response.  We've seen people here who claimed that because they "felt" fine that everything was fine.  How you feel,  when you have a very compromised immune system,  is not necessarily a good indicator of good health.  In general listening to your body is good advise,  but for some one with a severely compromised immune system it may be bad advise,  since those warning cues may be absent.

The only way I could even remotely see how exercising at this point would be detrimental is if you weren't already exercising before your diagnosis. If you simply continue doing what you were doing all along and not suddenly doing twice the amount, it can only be beneficial.
Exercise is breaking down tissue and causing inflammation in a body that is already highly stressed.  Taking a short break will do no harm and may even be healthy (even in the HIV -).

The OP has stated that he was experiencing fatigue,  has swollen lymph nodes,  and has a CD4 count of nearly ZERO and a VL of 290k,  and "working like a dog".

It's not imprudent advise to suggest laying off very strenuous exercise until his next blood work results,  and at that point re-assess.

There are no research studies to validate either opinion.  How could one possibly be constructed?  Doesn't seem possible.  But it seems like good common sense to take it easy when you are sick,  and just because you don't "feel"  sick doesn't mean you aren't.

And to the OP;  I am not suggesting that you live in a plastic bubble,  or in a state of fear,  or that you have to change or reduce your life goals.  You are going to be fine.  Stribld  is a great drug and I have no doubt that you will have a great response to it.     I just believe in proceeding with an abundance of caution.  In my opinion it's better to err on the side of caution rather than overdo it.

There are plenty of things you can do that are less taxing,  go have a picnic in the park,  read a book,  go to the movies with friends.  It's a false choice to suggest you either need to be living a life moving at 100 mph,  or sitting on your couch crying.

And really we're just talking a few weeks until your numbers are,  verifiably,  in the safer zone.

Seems like prudent advise,  but feel free to disregard at will.

I'm sure you'll be better very soon.  Best of health to you.

 

"The trouble with the world is that the stupid are cocksure and the intelligent are full of doubt."

 Bertrand Russell

Offline wolfthorn

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  • Posts: 85
Re: Lymph Nodes became swollen nearly immediately after starting Stribild..
« Reply #9 on: August 10, 2013, 06:54:25 PM »
All good advice, thanks! I need give myself a chance to heal. It has been hard on my wallet: I feel like I am entitled to take more taxis than I should because I am immunologically weak.

I have to be patient and let myself heal. I have a doctor's appointment on Tuesday to check in (I made it), I will run my concerns by him.
7/10/13: Oraquick at Home (+)
7/11/13: CD4 <20, VL 286,000
7/26/13: Start Stribild, Bactrim, Azithromycin
8/13/13: CD4 64, VL 1194
9/11/13: CD4 87, VL 511
10/14/13: CD4 164, VL 34
10/15/13: Stop Azithromycin!

Offline jkinatl2

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  • Doo. Dah. Dipp-ity.
Re: Lymph Nodes became swollen nearly immediately after starting Stribild..
« Reply #10 on: August 10, 2013, 07:36:05 PM »
I just wanted to chime in and agree with Ann and Bman about exercise. It's very important and very beneficial!

It is also a temporary stress to the immune system. From weight training (the tear and repair formula) to cardio/running. You simply require a stronger immune system than 20 cd4s to adequately do it. What you run the risk of is diverting your recently rebooted immune system form attending to more pressing issues in order to give you the repair you require from exercise.

Certainly don't think you are going to have to stop!

But with 20 cd4s, you run the real risk of IRIS when your immune system kicks in, which could lead to some awful complications. I am sure you would rather take a few weeks off and allow your body to heal (consider a cd4 count of 20 to be a fairly serious injury) than have to take months off recovering from pneumonia and run the risk of never recovering full capacity.

Where you are right now is a fragile and perhaps pivotal place in your recovery. Your decisions now might determine the course of the next few months, years, or the rest of your life. Would you suggest that a person go for a run with a freshly broken ankle? Give it time to heal, and it might even be stronger than before. Don't, and suffer the consequences.

Let me reiterate, exercise is extremely important for people with HIV. But not when your viral load is high (yours is) and your CD4 count is low (yours is). Your body needs a working immune system to rebound and benefit from exercise, and you currently are running (ha!) at a real deficit.

Believe it or not, your body is going to go through some serious shit internally as it begins to rebuild that immune system, and you might not even feel it to a great extent until and unless you sabotage it by diverting valuable (and currently limited) resources from it's primary function (addressing possible pre-existing issues of which you were not aware/able to address).

HIV is a process, not an event. So is the treatment. I had a friend in the mid 90s who would only remember to take his meds when he had a headache, as though they were Tylenol or something. His ignorance of the mechanisms of HIV and the meds cost him his life, unfortunately, as no amount of logic could get through to him. More was at play there than simply intellectual obtuseness, of course. 

Please don't be that guy who languishes for months or years in the beginning stages of immune restoration. It is NOT a fun place to be, and it's totally your call.

I have a cd4 count of 230, and an UD Viral Load. I recently started back at the gym four times a week, weight training. It's been tough but it's starting to feel good. Last week I went on vacation and came back with a killer cold. I took last week off, committing myself to being sick and recovering from that. Because I did, I am fairly certain that I will be back at the gym by the middle of next week. If I hadn't done this, that cold could have lingered for weeks or months, or turned horribly ugly.

You and I both have the rest of our lives to improve ourselves. But we need to respect the process.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline wolfthorn

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Re: Lymph Nodes became swollen nearly immediately after starting Stribild..
« Reply #11 on: August 10, 2013, 11:13:52 PM »
You are right, it is important to take a break. I'm not starting an intense training schedule until I get to 200. I'm only doing light cardio (for stress relief) and low  weights from now on. It's nice to have the distraction of going to the gym, even if I don't do much. For a while I was laying in bed sulking or reading.

The thing is I probably have less VL than I've had in months/years, and more T cells as well, thanks to two weeks of HAART. I am eating much more and I've already put on 8 pounds. I also was battling a pretty bad salivary gland infection right before my diagnosis. Its severity is what prompted me to do the Oraquick.

I think I'm having some immune reconstitution right now, with my salivary system acting up again and aphthous ulcers... I feel like I'm running my immune destruction in reverse.

I'm hoping for good viral suppression at my next visit in late August,  and I hope my T cells come up a bit.  I'd love to be off Azithromycin by springtime, if that's possible!

I AM going on vacation at the end of September, health permitting.... I need to travel somewhere beach-y where I can sleep to the sound of birds and waves instead of taxi horns.

I know that a shoe may drop at any point in this recovery process, but all I do is take my Meds and eat like a pig.

Today I remembered when I seroconverted.  It was 2006 and I went to the doctor with a bad, flu-like illness and mouth ulcers. My STD panel was negative. I never returned for the 3 mo follow up... I was a dumbass.
7/10/13: Oraquick at Home (+)
7/11/13: CD4 <20, VL 286,000
7/26/13: Start Stribild, Bactrim, Azithromycin
8/13/13: CD4 64, VL 1194
9/11/13: CD4 87, VL 511
10/14/13: CD4 164, VL 34
10/15/13: Stop Azithromycin!

Offline wolfthorn

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Re: Lymph Nodes became swollen nearly immediately after starting Stribild..
« Reply #12 on: August 10, 2013, 11:21:02 PM »
One good thing is that my boyfriend bought me a baby parakeet. Every day I train her a little bit. I can't do too much at once, but every day is a little better. It's a good way to approach this whole thing.
7/10/13: Oraquick at Home (+)
7/11/13: CD4 <20, VL 286,000
7/26/13: Start Stribild, Bactrim, Azithromycin
8/13/13: CD4 64, VL 1194
9/11/13: CD4 87, VL 511
10/14/13: CD4 164, VL 34
10/15/13: Stop Azithromycin!

Offline gina.marconi69

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Re: Lymph Nodes became swollen nearly immediately after starting Stribild..
« Reply #13 on: August 25, 2013, 11:57:20 AM »
Hi-
Question....you said "Mycobacterium Avium be damned"? Your attitude right now is very, very good for someone recently diagnosed and with a CD 4 of 20. You have your whole life ahead of you to kick AIDS in the ass but right now you're extremely susceptible to IRIS and M. A. C. is no joke!! I found that out the hard way, you do NOT want to do anything right now where you could possibly become infected. (With MAC you'd miss more than a few days of work here and there to say the least). Take it EASY right now, this phase won't last forever, you'll be fine in time but don't overwork right now. Start juicing, rest, think positive thoughts and most of all ask your doctor a million questions and follow their lead. Best to you  :)

Offline gina.marconi69

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Re: Lymph Nodes became swollen nearly immediately after starting Stribild..
« Reply #14 on: August 25, 2013, 12:02:33 PM »
One more thing I would say is if you feel like exercising then do a little. But stay out of the gym until you have a higher cd4. Staph is VERY common at the gym  :(

Offline wolfthorn

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Re: Lymph Nodes became swollen nearly immediately after starting Stribild..
« Reply #15 on: August 25, 2013, 09:02:58 PM »
I am taking MAC prophylaxis and sent the bird's poo out for analysis for cryptococcus. Unfortunately there's no way for me to avoid MAC as it's in the water supply here, so I have to take the antibiotics weekly. I'm still really scared that a shoe is going to drop and I'm going to worsen, but for now I'm keeping my fingers crossed and trying to soldier on. My  lymph nodes keep swelling right after the stribild (every night), which is really weird, but then they decrease during the day.  My doctor seems less worried than I am. So far I've had good response to the meds in terms of viral  load and cd4, but I'm hoping next month will be better and i'll start to leave the "danger zone" for some things.

In terms of exercise I definitely overdid it with running at first, but now I do light weights every couple of days.
7/10/13: Oraquick at Home (+)
7/11/13: CD4 <20, VL 286,000
7/26/13: Start Stribild, Bactrim, Azithromycin
8/13/13: CD4 64, VL 1194
9/11/13: CD4 87, VL 511
10/14/13: CD4 164, VL 34
10/15/13: Stop Azithromycin!

Offline harleymc

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Re: Lymph Nodes became swollen nearly immediately after starting Stribild..
« Reply #16 on: September 11, 2013, 06:32:50 AM »
If exercise makes you feel good then do it.
You're like me sweet FA cd4s but I'm not going to let that get in the way of actively manageing my health (both physical and mental).

I saw Gina's cioncerns, she's got a point there's alsorts of nasties at the gym. But having your own towel between you and the machines and a little bottle of hand sanitiser or exercise gloves will cut your exposure to the bugs massively.

 


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