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.

On another note, is anyone else getting really weird reactions from the chemists when picking up prescriptions? They look at me like I'm an alien! (might just be paranoid)

Mood swings and irritability are listed as side effects of Elvanse but a lot of people seem to find it helps with emotional regulation too.

It could be that you just need a bit more time, or maybe it's raising your blood pressure or heart rate and that's making you feel more anxious. Have you spoken to your titrating nurse about it?

You're not a fraud, it just takes a bit of time

I think I built my hopes up too much. I spoke with titration nurse and she was happy to try 50, will see if that helps and if not try Atomoxetine

I think 30mg is quite a high starting dose

Just to butt in… Superdrug do a months supply of elvanse 30mg for £72, cheapest I found.

How is everyone?

I'm 2 weeks in. Appetite is what I would say approaching normal is. I'm hungry-ish for meals, and eating sensible portions because I feel full but no binging at all and no urge to. I've lost 8lbs. I'm more on my feet too, not because I feel 'speedy' (I don't) but because I think I'm not losing hours on my phone being distracted every day.

Mood wise some days are better than others. I am more level.

Productivity/focus is much improved. I can actually get so much done.

@Branleuse

I think 30mg is quite a high starting dose

I believe it's the standard starting dose for adults in the UK.

Had my first follow up with the doctor today. Blood pressure fine. Healthy and normal. No real side effects. As I find it wears off my around 2/3pm the doctor has doubled the dose, with me to take one 30mg around 7/8am and one at around 2pm.

I've lost 10lbs, and have seen a huge increase in focus and motivation.

Happy to try it.

How is everyone getting on?

I think it is standard to start off high. I think people should understand its not a low dose though, so if they struggle with side effects that you can ask for lower doses or the shorter acting versions. It took me ages to titrate up to that high a dose, and im now 18months in and i take 10mg of the shorter acting dexamfetamine in the morning, and sometimes need another 5mg in the afternoon, but often I dont. The long acting elvanse I felt was affecting my sleep and anxiety
My 15 year old hated Elvanse and said it made him feel like he had no emotions. He seems to get on better with methylphenidate, and even thats only 20mg. Methylphenidate gave me tension headaches. I didnt like the way it made me feel at all. My other son has 56mg methlyphemidate (xaggitin) and that works for him.

Ah I see, that makes sense @Branleuse thanks for explaining. Ik so need to this. It's amazing how different we all are and how what one person can get on so well with really doesn't work for others.

I've been really lucky with minimal side effects except the loss of appetite which is ongoing but I'm 3st overweight (mostly due to binging) so that's no bad thing for me. I just have to make sure that I eat like a normal, sensible person three times a day. I would easily forget I think but I've got small children so as I feed them three times a day I remember to feed myself then too. When they're at school I have a reminder in my phone to have some lunch. I've lost 10lbs in three weeks with zero mental effort on my part (and zero binging or picking which is likely why!) I don't think the actual drug causes weight loss (does it?) it's the appetite suppression.

First day today of double dose (so if 30mg was high then 60 definitely is!). 30mg in the morning around 7and 30mg at 2. We will see if it has any effects on sleep etc. I've definitely not had my afternoon 'dip' today so will be interesting to see what time it comes, or if actually taking a second tablet at 2pm means I'm wide awake for hours into the night which case it won't work. The doctor did say that if that happens we can try 20mg at 2pm or a different dosing strategy altogether.

@Branleuse

I think it is standard to start off high. I think people should understand its not a low dose though, so if they struggle with side effects that you can ask for lower doses or the shorter acting versions. It took me ages to titrate up to that high a dose, and im now 18months in and i take 10mg of the shorter acting dexamfetamine in the morning, and sometimes need another 5mg in the afternoon, but often I dont. The long acting elvanse I felt was affecting my sleep and anxiety My 15 year old hated Elvanse and said it made him feel like he had no emotions. He seems to get on better with methylphenidate, and even thats only 20mg. Methylphenidate gave me tension headaches. I didnt like the way it made me feel at all. My other son has 56mg methlyphemidate (xaggitin) and that works for him.

Thanks for this, it's really useful to read experiences of others.

I'm taking Elvanse 30mg, I started it about 3 weeks ago. For the first few days things weren't too bad. After 8-9 days, I had a 2 day break from the tablets, sheer exhaustion due to lack of sleep meant I forgot to take the medication.

Since resuming Elvanse after that 2 day break I feel so anxious all of the time, some days I just feel completely overwhelmed by irrational anxiety brought on usually by work pressure that normally I'd just deal with, but now I can't.

My sleep pattern is in complete disarray, the clock change has had a massive negative impact, as usual, so it feels like a double whammy with no sleep due to Elvanse and the clock change. Some days I don't know whether I'm coming or going.

The ADHD clinic is really short staffed and under funded. They've cancelled my recent appointments due to staff absence/sickness and I'm considering coming off Elvanse which will then be the 2nd ADHD med I've thrown the towel in with (was on Concerta XL first, couldn't stand the side effects, including insomnia).

I'm really missing deep sleep. I feel so unwell due to lack of sleep and being in a permanent state of anxiety. What's worse is I don't know if it's the meds, the clock change, both of those factors or just me.

The anxiety was so bad last week, I considered self harming in order to divert the anxiety to physical pain. I've never cut myself before, nor have I thought about it. Could this due to Elvanse?

@Clarice99 I'm sorry you're having such a hard time with it. That sounds horrible.

I am certainly no expert. But - If you're thinking of hurting yourself I would try to get an emergency appointment with your GP tomorrow. I know it's not the ADHD clinic but that's serious stuff and you need to be in front of a medical professional - they can hopefully help you/make a referral/give you advice in the meantime until you can get to see a specialist.

@mymindisamuckingfuddle

I contacted my GP earlier this week about the feelings/anxiety. It turns out that my GP surgery haven't been informed of my NHS ADHD diagnosis or the treatment plan.

I've asked for my report and diagnosis letter from the ADHD service so many times, but I had no idea that it hadn't been sent to my GP. I just (stupidly) assumed it had been sent.

I've emailed the ADHD team to request the diagnosis again and for them to book me an appointment.

@Clarice99 honestly ive struggled so much trying to settle on one and gone through a few.
It definitely helps me but its not been as lifechanging as id hoped. Im autistic as well as ADD and long time anxiety issues and im sensitive to meds.
I think that if im well and rested they work fairly well. If im unwell or I havent slept well then they make me feel ill and horrible. I found that with extended release ones this was more of an issue because that meant if they made me feel crap then thats a long time for them to wear off.
I think im getting on much better with Amfexa. I like the 5mg ones as it gives me more control over dosage and its always worn off by bedtime. Tbh often I dont even need to have extra in the afternoon if im not busy

That's exactly what it's like for me @Branleuse. If I feel well and rested, I have an okay day or a good day, but no rest/no sleep, I feel totally incapacitated by extreme anxiety and I feel ill.

Like you, I am also autistic and I'm very sensitive to medication generally, so it's hard to fathom if it's me, my usual sensitivities or whether Elvanse isn't for me and I need to try something else. I just feel a bit of a failure. I only lasted just over a week on Concerta XL and now 3 weeks on Elvanse and I've had enough of it.

Perhaps I need to change to a non extended release medication? Are you being prescribed Amfexa by your GP or did the ADHD service prescribe it first? Sorry if I sound ignorant, but I haven't heard of Amfexa.

I've had my autism diagnosis a while now (and I knew I was autistic decades before the diagnosis) but my ADHD diagnosis is fairly new (8 months), I still haven't digested it. The ADHD clinic is so under funded/under staffed, it's taken months to get this far and when I've had an appointment that hasn't been cancelled, it's always rushed.

@Clarice99 I was diagnosed by psychiatryuk who my GP referred me to. The GP cant change my meds so if i need to change, I ask my GP to refer me back for a follow up appointment. It doesnt take anywhere near as long to get a follow up review as it does to get an initial appointment.
I dont see why it would be an issue to take a few goes to get the right one.
I think in the meantime maybe ask your GP to decrease your dose as i imagine they probably are able to do that, but they probably couldnt increase or change the meds. Its not your fault that you dont get on with what youve tried so far. Its not failing. The whole idea is to help you with something thats actually disabling you x

I take elvanse and have done since I was 15/16, it is the best medication I have tried for ADHD. Make sure you snack through the day, and try to drink lots of water, it can make you have a very dry mouth and the beginning! Happy to answer any questions about my experience with elvanse!

Hi - I wondered how you are all doing on Elvanse? I posted over a month ago and since then things have changed a bit. After taking a tablet I still felt really good in the mornings - focussed, motivated, calm and "in the zone". However, I started to get quite a few headaches, some of which were migraines with aura, and in the afternoons I was feeling really jittery, my jaw was clenching, I had muscle twitches and felt really anxious. It just didn't seem like these side effects would be sustainable long term. I have decided to stop taking the meds for now - I feel a bit down about it all, as initially I had high hopes for this medication! I am pretty sure I also have ASD so I wonder if I would just be sensitive to any stimulant. I used to take escitalopram (before my ADHD diagnosis) which did seem to help, so maybe I will go back onto that. Oh well - feeling quite disappointed, but I guess it takes time to work out the right medication! Hope you are all doing well.

Hi, I started on Elvanse about a month ago. Started on 20mg, then 30mg, then 40mg which I’m happy with, but going to try 50mg to see if it makes a big difference. If not I’m sticking with 30 or 40. I find it gets me through the morning to about 3 which is what I need - could do with an afternoon too up ideally but sleep has been affected so I don’t want to take any more. I’ve found it has helped massively emotionally, as well as I actually do chores around the house instead of walking past things which I have been doing for months. Sometimes get palpitations if I haven’t drunk enough water. I did lose my appetite at first but this seems to have worn off a bit (disappointingly!) I was so doubtful ADHd meds would help me but I feel much more “even” on them. The odd days I’ve taken off have been variable but generally not as good so it must be doing something. Interesting to hear everyone’s experiences.

@Sciencebod I'm still getting on really well with it. I take 30mg at 7am and 30mg at 2pm and that gets me through the whole day with no sleep issues.

Just started on Elvanse 30mg, day 3 here.

It's… very subtle, isn't it? I'd struggle to guess I'd taken anything if I didn't know. But I do feel a kind of mild calm alertness for a couple of hours, which is nice, I suppose.

@Fundays12 thanks for posting your experience of Elvanse with your son. My DH age 8 has been taking it for a couple of months and its been so positive for him. It's significantly reduced his fidgeting and helped concentration in class. He's just done super well on his latest class tests, I'm so pleased for him.

The only thing we've noticed is him struggling to get to sleep on an evening, but thankfully stays asleep all night when he is asleep. Was that the same for your son? We are back at the psychiatrist next week, so was interested in melatonin for him if that will help.

That's interesting @Sciencebod - so 60mg in total daily? I haven't heard or been offered either that much, or two doses - it sounds ideal tbh. Can you tell us more about who's prescribing it and any details they've shared about the thinking behind splitting it?

That's how I feel. I think the dose isn't enough for me. Slightly calmer, a bit more focused.

Winter I'm wondering the same. I'm on other medication that might attenuate the effects, though (or might not — studies disagree). I'll hopefully get a chance to increase later — is that an option for you?