Triumeq symptoms a nightmare for hubby!!! Please help

[Txnurse]

So this is my first post, hubby and I were recently both diagnosed HIV+ and immediately started on treatment. My regimen is Tivicay and Truvada and only some fatigue and shortness of breath. Hubby has kidney issues so was started on Triumeq. He has pneumonia upon diagnosis (regular no PCP OR TB) so he was already sick. After a few days on Triumeq his fevers persisted and have gotten worse, his cough is worsening, breathing is worse, and is completely lethargic. We repeated the chest X Ray and pneumonia is clearing well and antibiotics are complete. Dr said to stop all meds besides Bactrim daily and see her this week because she’s worried about it being a hypersensitivity to Triumeq. I’m very worried, his CD4 is 31 and VL 88,000. Does this sound like body just fighting HIV or a side effect of Triumeq?
Anyone else had a similar reaction?

I’m a nurse but this is not my speciality and our diagnosis came out of left field. Dr suspects he’s had HIV 8 plus years and me in the past 3 since meeting him.

[bmancanfly]

Sorry about your (and your hubbies) recent diagnosis.  Glad you found this place as it has a great deal of useful info and friendly and supportive people.  Please provide as must info as possible so people can best answer your questions.

I can't really say what's going on with husband, but understandably with a CD4 count of only 31 and a pneumonia diagnosis it is very concerning.

One of the drugs in Triumeq (Abacavir) can cause a hypersensitivity reaction in some people.  It's unusual in the US to prescribe this drug without first running a hypersensitivity test.  Are you in the US (if you don't mind me asking), and did your doctor run this test first?  Is your doctor an HIV specialist (no judgment just curious)?

Can you elaborate on your husbands kidney issue?

If I were in your husbands situation I would want to get on antiviral treatment as soon as possible.  It may take some time to get the hypersensitivity test results back so Triumeq might not be the best route to go.

There is a new drug recently come available in the developed world that replaces Truvada, and it's kidney issues, called Descovy.  You might want to discuss that with your doctor.  A regime of Tivicay and Descovy sidesteps the kidney issues of Truvada and eliminates the hypersensitivity (potential) issue with the Abacavir in Triumeq.

Hope this helps and sorry again about your diagnosis.

[Txnurse]

Thanks so much for the quick response. Yes we live in the US and the hypersensitivity test (genotype) was done and negative. His kidneys issues are chronic kidney failure stage 3, from twenty years of poorly controlled hypertension. I’ve read that people can still have hypersensitivity even if the genotype is negative for it. Also, can you get this sick just from starting therapy when your counts are so low?

[Jim Allen]

Hi

Sorry to hear your husband is sick.

Look starting with really low counts sometimes means feeling worse before getting better, could be a case of Immune Reconstitution Inflammatory Syndrome (IRIS)
that's not a side effect its the immune system waking up and starting to fight until now ignored infections and problems. 

Just re-read the thread, would be really rare in a weeks time though anyhow if he had the symptoms before starting the medication i would suspect the cause is not the medication.

Whatever the cause, we could speculate all day and night, the focus is to keep working with the doctor closely on this and I hope your husband feels better soon.

Jim

[Txnurse]

I was reading about IRIS and thought that as well. He was improving from the pneumonia before starting Triumeq then seemed to slowly start tanking after starting therapy. It’s jusy all so confusing right now, I’m trying to learn as much as I can as fast as I can. Luckily with my nursing background I have a good understanding of it all but his symptoms are throwing me for a loop. We do see a dr that is an ID doc and treats LOTS of pts with HIV. She’s also a very new physician so seems to be up on the most current treatments. There is a part of me that wishes she had more actual experience with treating pts but I do trust her. I hate that he’s off the meds even just for 5 days because his CD 4 count is so low. I pray that he can fight through and this isn’t the beginning of the end. Our Dr seems very optimistic but I feel like he’s sooooo sick and my nursing instincts give me bad feelings.

Thank you for the replies, I appreciate the support and I’m glad I have someone to talk to. We have not told any family or friends and chose not to do so.

[Jim Allen]

Well wishing both of you the best and keep us posted, hopefully he will be better soon.

Jim

[jmupatrick]

I struggled with side effects when first starting Triumeq. Very quick backstory, I am an individual who has been treated for high blood pressure and some other cardiac symptoms even before starting Triumeq, so I have heightened awareness of anything that affects me as it pertains to my heart. All of the literature that came along with the Triumeq packaging (plus a little freaked out Googling) had me in a heightened state of anxiety about taking the drug. Triumeq definitely gave me some palpitations, a feeling like heartburn, and a "buzzed" feeling, like I drank too much coffee. I was very concerned and brought up these symptoms with my doc within week 1. He quelled all my fears, letting me know that it is a strong antiviral and it's just doing it's job... but to stay vigilant if anything gets worse. I can say without hesitation that everything did, indeed, improve within 2 weeks time, and I don't notice any symptoms now when taking Triumeq. (I take my pill first thing every morning on an empty stomach.) I will also say, my CD4s jumped up more than 300 points and I am nearly undetectable just 4 weeks after starting Triumeq. This drug works. I'm so sorry that your husband is suffering. I just wanted to share my story and let you know that for me, the symptoms, which were significant upon starting, completely subsided.

[CaveyUK]

I'm surprised the doc hasn't considered that Bactrim could be the problem, unless your hubby has been on that for some time. Hypersensitivity issues are more common with that drug (more so than with Triumeq), and tend to manifest within two weeks, if they do. It could be worth asking the question.

Best wishes though, and hope he makes a full recovery soon

[Txnurse]

I had posted in an earlier post that hubby had pnemonia and was getting worse, which we suspected Triumeq allergy. Update, hubby isn’t allergic to Triumeq but our genotype is resistance to one of the meds in it. He also was diagnosed and hospitalized with PCP pneumonia and literally on his death bed.

We are both newly diagnosed HIV, mine was contracted in the past 3 years and his the Dr suspects around 8-10 years. His CD4 is 31 and Viral load 88,000. He’s now out of the hospital on 4 HIV meds, anti PCP med, steroids, antibiotics and home oxygen. I am terrified that his CD4 count isn’t going to recover because of all the stress his body has been under. Can anyone give any hope or insight on chances of full recovery and normal quality of life? 

My VR is UD after two weeks of therapy but CD4 count has dropped from 494 to 413. Is this something I should be concerned about? Also, what about us having Sex, since I’m UD and he isn’t?

Thanks for reading and any insight!

[Ptrk3]

Your husband has a very high chance of recovering and leading a normal life, now that he is on and antretroviral regimen and presuming that he will be fully adherent to it.

Many people on these forums were diagnosed with single digit CD4's and have since returned to full-bodied health and have resumed their lives.

It may take awhile for his CD4's to recover, but the important thing is that he achieve an undetectable viral load--in order that the CD4 recover can begin. This may not take very long at all.

In the meantime, his other medications will help treat the PCP and protect him from other opportunistic infections.

He will be fine.

And so will you!  You viral load is undetectable and your CD4's are strong (in the lower end of normal range).  CD4's can change throughout the day, so it's the trend that matters, not an individual result.  The fluctuation you are having is simply no big deal.  No matter, your CD4's are strong.

Whether you should have unprotected sex is really an informed decision you should make, but since you are both on antiretroviral regimens, it's likely not that big of a risk.  Consult with your healthcare provider on this matter.

[Jim Allen]

Yeah can't add much to what Patrick said. Stay strong things will be okay.

On the sex part, why worry your meds are acting as prep in a way and particularly when he has his VL under control it will not be an issue.  Besides superinfection - reinfection - Dual infection or however you call it its highly rare to start with and doubted by some. https://www.poz.com/tag/superinfection

Look practical side to this, test both for easier to transmit STI's together.

Jim

[kentfrat1783]

Hi,

I am glad that your husband (and you) are doing better. 

As someone that was diagnosed with PCP and being positive in the same day I understand your worry.  Been their, all too recently.  My CD4 started at 2 with a VL of 169,969.  From my own personal experience when you start with a low CD4 count it does take time to get back to a normal range. 

I do take Bacterium daily with Azithromycin once a week to keep the PCP/OI's away.  My ID doctor also put me on a Neutropenic Diet (google it).  He is just being overly cautious with me. 

Also, don't feel bad for asking your doctor question.  Mine has been more blunt and honest then I think I would like but after researching more I understand why he is that way.  He is also the only doctor in my area that every doctor/nurse recommends.   

Wishing you all the best and if you have questions about my experience or what to potently expect send me a message.

Kenneth

[Tonny2]

       ojo      hello there...iif you want to have sex with him now, you will kill him, lol...i was dx'd with PCP, AIDS, CD4=20...23 years later, i'm weiting to you, so, do not worry, just make sure you two take your meds as prescribed, turnn the page about the dx and fight together to defeat hiv/aids, the sooner you two learn how to live with the virus, the better you two can take back cintril of your lifes, the meds will take care of the bug...when you mentioned he is taking steroids, do you mean PREDNISOME??, if this is the case, i woild ask the doctor what are the long term side effects of using this medication, of course, if he really needs this med, i guess your doctor is balancing the risk over the benefits, but, an informed patient can ask this questions and there might be a different option, this is becaude i went through the same, took prednisone, and noe i'm having problems with AVASCULAR NECROSIS, please google it,..just a thought...you will be ok, your soldiers, are ok, not a big deal you are still in the 400, check your cd4%...hugs for both of you...be a fighter not a crye....                     ojo

[Jody]

When I first tested and got on meds it was just before the cocktail came out.  My CD4, we used to call them t cells was 40 and the VL in the 40,000 range.  My doctor estimates it was much higher before the first test.  I also had PCP pneumonia.  Then they added Crixivan in 1996 to my AZT and 3tc and I gained 40 pounds and with the gym much of that was muscle.  Eventually when you, hubby and the doc work past pneumonia, which I see here as clearly the priority, you can work out the HIV meds and look to diet, exercise and fresh air and the importance in that, as well as a hopeful attitude. And hubby has you as a great support !