Elvanse

[mymindisamuckingfuddle]

Hello ND Mumsnetters.

I was diagnosed with ASD (although no longer diagnosed I was told it is 'classic Aspergers' presentation) and combined type ADHD yesterday. Not surprised. I'm 38, F, with no physical health conditions.

The doctor wants to start me on 30mg Elvanse (lisdexamfetamine) straight away.

Am looking for experiences with this drug please.

I'm supposed to be on an upwards trajectory - but the service is so overwhelmed that each 'see how you do on X mg' is lasting upwards of 4 months. It's driving me nuts tbh - I get seen by the ADHD nurse, she recommends the next dose up, and then a looong delay until the 1/2 day a week consultant gets round to my medication review, which she doesn't even need to see me in person for.

Ah, I see. That's got to be really frustrating! Slightly unusually, and for tedious reasons I won't go into, I'm being titrated by the psychiatrist at my local mental health team (though he does keep repeatedly emphasising that he isn't commissioned for this and doesn't know what he's doing) that I see for my other flavours of mental, and he's only given me 14 capsules so hopefully I'll be able to increase quite soon. I think he wants me dealt with as soon as possible!

Good luck! I started in the same way (although without other untreated flavours of mental at that point) but I think once you've been assessed by the psychiatrist and seen a couple of times you are handed on to 'the clinic' and it's a bit more admin-y with occasional oversight of the consultant psych for that team, who does half a day every two weeks or whatever, even in London, and then it gets a lot less personal and a lot more annoying :-D

@WinterDeWinter To answer your questions:

It's being prescribed by a private psychiatrist who I am seeing via BUPA and who did my assessment and diagnosed ADHD and autism.

I stated on 30mg a day, taken in the morning first thing, was happy with the results and had no bad side effects at all (just a loss of appetite which is fine and stops me binging) but found that it wasn't lasting all day. So he suggested a second dose at 1/2pm which has worked a treat. I've trialled it for a month nearly and so far so good.

Am now moving into a shared cafe agreement to my GP so he will prescribe from now on, with me seeing the private psychiatrist for review in six months (or earlier if there are any issues). In the interim I'll be referred to an NHS psychiatrist who will take over from the private doctor once I can get seen.

Sorry, I name changed for an anon gardening query, the post below is me. The OP!

Ah right that makes sense Winter.

I was at the clinic but there would've been delays so my usual psychiatrist is doing it.

I also take 30mg of Elvanse and have done for around 2.5 months now. It’s definitely subtle and if I don’t have to get up and going it definitely doesn’t make me like I thought it would. I had an issue with high heart rate a few weeks ago and ended up in A&E (previous Pulmonary Embolism meant they wanted to check me out) but came to nothing in the end!

Think I will request to up my dose next time I see my psychiatrist though it isn’t until the end of July now..

How long do you find it lasts, YerAWizard?

I'm getting 90 minutes of waiting for it to kick in, a couple of hours at most of possibly feeling ever so slightly more alert than I'd expect to at that time in the morning, a few hours feeling like my normal self, then a slump into low energy in what's usually my prime afternoon/evening time.

On day one and day two, the calm alertness was maybe a bit more noticeable, but now it's barely perceptible.

I think my concentration maybe is a little better during those two hours I can kind of feel it because this morning I was concentrating on milk foam making pretty patterns in coffee crema to the extent that I failed to notice the mug overflowing 🙄

Also, does anyone else's Elvanse have a warning on the pharmacy label that "this medication may make you feel sleepy"?

I started on 30mg of Elvanse a while ago. I really didn’t like it, I felt really buzzy and agitated then had a massive crash in the afternoon. It didn’t seem to last long. I found dividing the dose between morning/afternoon worked better than taking the whole thing at once. I still felt strangely anxious and depressed at times though which is unusual for me.

my doctor has now prescribed me methylphenidate (Xaggitin XL, Ritalin, concerta XL) which I started today. I actually prefer it so far, a bit subtler and haven’t had a crash so far and no anxiety or depression. Fingers crossed.

Good luck with the methylphenidate Alo! I tried that first and didn't really notice it having much effect at all — it's weird how different we all are.

Thanks everyone for this, reading your experiences has been really helpful. I start on 30mg tomorrow so will see how it goes.

Have just been chatting with DP, and have decided that Elvanse sounds like a model of 1960s Cadillac-type American car with giant fins and pointy bits.

As in, "New for '62, the Cadillac Elvanse — so easy to drive, even your wife can manage it!"

Whereas the American name Vyvanse sounds more like a small European city car. Or possibly a people carrier.

Amfexa sounds like a technology brand, Medikinet like gym equipment, and Xaggitin… I dunno, some kind of ungulate?

Just been reading this thread as my 16.5 year old daughter is just about to start on Elvanse after trying medikinet and not seeing very much benefit. She also has asd so trying to help her weigh up the pros and cons, in doing so I came across this info which I thought you might find helpful as a guide, as I notice that some of you have mentioned only subtle improvements. I feel for you, titration sounds tricky, particularly if you have difficulty discerning how you're feeling anyway!

ADHD stimulant medications are not subtle – they are some of the most effective medications in all of medicine. Most clinicians have found that people who respond with a 6 or lower, therefore, can do much better on a different medication or a difference dose. So, if you think that you have fine-tuned this particular medication but you are not experiencing a life-changing level of improvement, continue to work with your clinician to find the right medication and dose for you.
It's taken from here
www.additudemag.com/how-to-tell-if-adhd-medication-is-working/
How are you all getting on?

Hi there my son was on medikinet 20mg since beginning of September but we were having terrible med crash In the evening so our consultant has switched him to elvanse 20mg. We have option to top up but I am just going to stick with one dose. Little
bit nervous to start new meds so close to Christmas but the crash in the evening is horrible. He gets so angry. I am hoping the slower release will help. My son is almost 10. Be Interested to hear of any similar experiences. Thank you

Starting on 20mg here.
I'm in titration, following diagnosis in July. I'm changing to Elvanse this month (from Xaggitin which hasn't helped focus or motivation). The ADHD nurse is starting me on 20mg for 1 week, then 30mg for 1 week, then 40mg. After that we'll discuss again and see how I'm doing.

Hello all, Im new to this.

My son was diagnosed privately as we were not getting anywhere with the GP. He’s on 30mg of Elvanse but we are having a real difficulty getting the GP to accept shared care. It’s costing us a fortune and we can’t afford it.

My son is pretty bad with his mood swings and I am at my wits end.

Any advise would be much appreciated

Is he on a waiting list for an NHS assessment Midage? I know they've made it harder to even get on the waiting list in many areas, but if it's at all possible then it's worth trying for IMO. Having an NHS diagnosis makes shared care arrangements much easier, and an NHS diagnosis still unfortunately seems to carry more weight in some circumstances and with some professionals. Though even if he is currently on a waiting list or you manage to get him onto one, I'd guess you're looking at an impractically long wait, and you need help now.

I've been NHS all through so I don't have personal experience with this, but my first thought is whether you've been shopping around to find the cheapest supplier, as there can be big price differences. Or could he maybe switch to a cheaper medication like dexamphetamine dosed more frequently, or something else that's available in a generic. I know the titration process will cost too, though. Or maybe you could try switching GP to see if you can find one who's more amenable to making an arrangement, or try pushing for a CAMHS referral… <hollow laugh at sheer unlikelihood of getting any help from CAMHS> — if he's got such bad mood swings it sounds like either the Elvanse isn't helping things or isn't enough on its own anyway, and he needs something more than a shared care arrangement for meds. If I were the GP I might be a little reluctant to take on that risk, too.

Unfortunately private diagnosis are not really supported by the NHS because they don't always meet NHS diagnositic criteria. Can the school help with referring him for NHS assessment?

Have you asked why you GP doesn't accept the shared care? Is it because they don't accept any private assessment or just those they deem not reliable?

Ours were fine with the GP. But I don't know if it's because they are aware of the particular psychiatrist (very reputable in the field) or they are just generally no hassle.

Try to enquire and find out the cause. Otherwise, change GP?

My DH takes this exact medication and dosage, diagnosed with inattentive ADHD. He says it’s life changing in terms of work, productivity generally, mood.

HTH!

I’ve been on Elvanse for 5 months now. One piece of advice I would give is to not take it on an empty stomach - eat breakfast before/with it (preferably a high protein breakfast). I was never a breakfast eater so this was a tough adjustment for me!

Taking it on an empty stomach makes me jittery and anxious, whereas having it with food feels a lot smoother and calmer. If it’s making you jittery and anxious, you might not be taking it with enough food?

I can't say an empty stomach has ever made a difference with me — it takes such a long time to be converted into the active drug by your red blood cells that the speed of absorption from the GI tract seems neither here nor there really? It's part of the appeal of it from an abuse-prevention point of view… even if people snort or inject it, they still won't get a buzz, because it's limited by speed of conversion in your body. Though I guess maybe you benefit from that extra additional bit of delay,@uuughhhshsh

The tagging function is annoying; I wanted to add something else after that but it was interfering with the tag.

I was going to say that I guess there could be something else going on rather than food affecting the speed of absorption, maybe something like your blood sugar levels making you feel jittery.