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Main Forums => Living With HIV => Topic started by: muchtolearn on January 01, 2020, 10:11:15 pm

Title: Juluca vs Dovato for a switch
Post by: muchtolearn on January 01, 2020, 10:11:15 pm
Hi there,
After diagnosis in Sept 2018, I've done well in terms of viral suppression on two very similar regimens (initially on Descovy+Tivicay, then switched to Biktarvy just to get down to a single pill). In general I tolerate them fine. But I continue to struggle significantly with one thing: muscle pain in both arms and legs. Life is tolerable because of Gralise (slow-release gabapentin) for the muscle pain, but even with the Gralise the pain is still disrupting my life a lot and making me quite miserable at times.

First question is whether that muscle pain is related to my HIV drugs. Honestly, I'm 50:50 on this question myself. Con: I had some muscle pain before HIV diagnosis/treatment, and I'm 50yo so stuff besides HIV does happen. Pro: I was also just generally quite sick back then from advanced HIV disease, so maybe that muscle pain pre-HIV-diagnosis was from HIV disease vs now it is from HIV drugs. It's hard to remember now, but the pre-treatment pain seemed less specifically located than it is now.

A rheumatologist and neurologist have not found any obvious non-HIV explanation for the muscle pain, and it's not getting any better. So I'm considering three options:
1) a diagnostic treatment interruption, to see if the muscle pain is actually related to the HIV drugs or not. {Slightly off-topic vs the main question below: Is this first option too scary to consider?}
2) switch to Dovato
3) switch to Juluca

My main question is about those two switch options: out of Dovato vs Juluca, which would you recommend and why? Both would get me away from both emtricitabine (FTC, which might be the problem (drugs.com mentions "myalgia, arthralgia at 1-10%)) and TAF (probably not the problem), but not from DTG (probably not the problem). Dovato would add lamivudine/3TC vs Juluca would add rilpivirine/RPV. I guess Juluca needs to be taken with food which is not ideal but not a dealbreaker for me. Overall, 3TC as an earlier drug seems to come with more common side effects -- is that fair?

I've looked over quite a number of related posts but not found a head-to-head discussion of these two options -- apologies if I've missed a discussion already.

Any opinions gratefully received.
Thanks!
Title: Re: Juluca vs Dovato for a switch
Post by: Jim Allen on January 01, 2020, 10:44:18 pm
Hiya,

Quote
even with the Gralise the pain is still disrupting my life a lot and making me quite miserable at times

Sorry to hear about your pain, glad the gabapentin helps somewhat.  I know that living in pain is not always easy, it's can be very tiresome in my experience (neuropathy) and thankfully my pregabalin helps take away the worst of it for me although it's not always a picnic either. 

Quote
Con: I had some muscle pain before HIV diagnosis/treatment, and I'm 50yo so stuff besides HIV does happen. Pro: I was also just generally quite sick back then from advanced HIV disease, so maybe that muscle pain pre-HIV-diagnosis was from HIV disease vs now it is from HIV drugs. It's hard to remember now, but the pre-treatment pain seemed less specifically located than it is now.

In short, you had pain a year before the diagnosis, this continued after starting HIV treatment and after switching from Tivicay + Descovy to Biktarvy. What does your HIV specialist think? I know you mentioned when starting treatment that they were unconvinced it was HIV related, I'm presuming that this is still the case?

If you want to switch/change HIV treatments again the choice is yours, of course, but the first port of call would be your HIV specialist. Both the combinations mentioned are on the recommended treatment lists with Juluca being limited to people who switch treatment with an undetectable viral load

Best, Jim
Title: Re: Juluca vs Dovato for a switch
Post by: muchtolearn on January 02, 2020, 09:12:52 am
Hi Jim,

Thanks very much for your reply. Sorry to hear about your own neuropathy experience. I'm glad the pregbalin helps at least partially.

Yes, the Dr and I initially assumed the muscle pain was not related to HIV drugs since it was present before I was on HIV treatment. Hence I spent the last year on all the other tests (all negative) and specialists (all inconclusive). The theory below (that the muscle pain pre-HIV-diagnosis was from HIV disease vs now it is from HIV drugs) is from my sister who is an infectious disease specialist. Getting opinions from your relatives -- fraught, I know, but there it is. She used to treat HIV but is no longer familiar with the current drugs. She just takes it as a starting assumption that, with a non-specific symptom like this, you first suspect the drug as a cause. My own actual HIV doc is very nice but somewhat passive and not very opinionated -- but obviously my next step is to consult her. I have an appointment with her next week. Maybe she won't support a switch at all but I'm trying to go into that appointment with as much info as possible.

If you or anyone else has any opinion on the choice between 3TC and RPV, that would help the conversation with my doc next week.

Thanks again!
Title: Re: Juluca vs Dovato for a switch
Post by: Jim Allen on January 02, 2020, 09:37:46 am
Hiya,

Quote
Getting opinions from your relatives -- fraught, I know, but there it is.

Yeah, I know how that works.
Family medical opinions ::) :-X

Quote
If you or anyone else has any opinion on the choice between 3TC and RPV, that would help the conversation with my doc next week.

An opinion sure, but it's very personal and I would not rely on it to make a decision about your own healthcare. 

Drugs have changed a lot sadly the bad press not so much, now the Biktarvy that you are currently taking is a fine drug for most people, although, I would not touch it.  Currently, I'm on Triumeq that contains ABC+3TC & DTG and ill continue to take this was it works well for me. That said DTG is not everyone's cup of tea either.

Now if hypothetically someone put a gun to my head between Dovato & Juluca my choice would be Dovato (3TC & DTG). Reason being the data is good and I am already familiar with those drugs, in addition, it's easy to take and why make life more complex than it already is.

I really think you need to work with your current HIV doctor to weigh in on this and, when they express their opinions, either way, don't be afraid to ask them why they feel/think that way.

Best, Jim

Title: Re: Juluca vs Dovato for a switch
Post by: muchtolearn on January 02, 2020, 10:13:47 am
Thanks, Jim, I appreciate the feedback!
Title: Re: Juluca vs Dovato for a switch
Post by: Matths on January 02, 2020, 06:24:49 pm
Hi, allow me to add my 5 cents to your discussion.

Both, Juluca and Dovato have DTG as backbone and so the question is which of the 2 drugs, lamivudine versus Rilpivirine to add. I wasnít exactly at that point because when I switched from Triumeq  to Dovato I was suppressed but not yet for 6 months, so wouldnít have been able to go with Juluca. Nevertheless, my choice was Dovato because of excellent clinical data during acute and maintenance treatment, as well as switch data (including patients with common mutations), an excellent side effect profile, and most importantly for lamivudine (as the second drug) excellent clinical data for a very long time in different combination treatments, and the data showing that the virus gets compromised even when a mutation happens. With the 2 drugs in Dovato you have a treatment with high barrier to resistance, good side effect profile and safety data, and easy to use. Those were my determinants why I went with Dovato and Iím happy so far. Best Matt
Title: Re: Juluca vs Dovato for a switch
Post by: muchtolearn on January 02, 2020, 11:19:32 pm
Thanks, Matt, this is very helpful!
Title: Re: Juluca vs Dovato for a switch
Post by: wardp on January 07, 2020, 07:26:32 pm
Are you on any other medications? Statins etc?
Title: Re: Juluca vs Dovato for a switch
Post by: Matths on January 08, 2020, 07:24:32 am
I am on Dovato only and probably related to more careful selection of food all my lab parameters have improved from normal to supernormal. However, my doctor said he will monitor carefully my cardiac risk factors, ie inflammation, lipids to start anti-inflammation therapies as prevention rather than when itís a condition that needs treatment. But that seems to be relevant for our community in general and has nothing to do with specific medications.
Title: Re: Juluca vs Dovato for a switch
Post by: Matths on January 13, 2020, 08:59:12 am
Hi there, Iím curious if you switched your medicines and if yes what you decided to take. Of course, Iíd also like to know if you decided to stay on your current treatment and why. Best Matt