Elvanse Experiences please

[Sanfranciscobabe]

Recently diagnosed with combined ADHD and have started on a low dose of Elvanse with a plan to gradually increase over next few weeks.

would anyone be able to share their experiences of it please?

I’m so relieved to have a diagnosis finally and it really appears to be making a difference already but my googling is returning really mixed, mostly American, reviews.

[Clarice99]

@Sanfranciscobabe

You may find this thread of some interest: www.mumsnet.com/talk/neurodiverse_mumsnetters/4509486-elvanse

[kingsleysbootlicker]

I started it today too I felt a difference within a couple of hours but felt pretty stoned too for a while, then just mellow the rest of the day. Watched Netflix without playing on my phone at the same time, which is a first! I'm looking forward to seeing how it goes over the next few weeks

[Sanfranciscobabe]

Thanks @Clarice99 not sure how I missed that one, didn’t mean to start a duplicate thread.

@kingsleysbootlicker quite exciting isn’t it? I’ve found the difference quite overwhelming but from reading other threads it seems it might be a bit of a honeymoon phase

[Clarice99]

@Sanfranciscobabe

No problem asking duplicate questions 😃It's always good to start your own thread IMHO as new people may come along with a different perspective.

Honeymoon phase describes my experiences with stimulants perfectly. I've tried 3 so far - Concerta XL, Elvanse and Medikinet. The first 2 were extended release and did not suit me. Medikinet is shorter acting and I had high hopes for it, but the side effects were bad, so I stopped taking it.

I hope Elvanse continues to work for you and it helps long term.

[ZealAndArdour]

I’ve been on Elvanse 40mg for 5 months, I did a week on 20mg and then moved up to 30mg, before settling into 40mg and setting up shared care and GP prescribing. There’s deffo a honeymoon phase where you feel super motivated and do ALLLLL of the jobs. It’s settled down now and the effects are less overt, I wouldn’t like to do a day at work without it, but on a day at home I can’t guarantee the same productivity as I could at the start. But overall yes, I think I’m better on it than off it.

The first few days I felt quite hot and clammy, but that settled down quickly, but I do still have a very tight/tense feeling jaw a lot of the time. My appetite has got a bit better, the first few weeks I couldn’t take my medication pre-food as it was honestly like I was trying to chew and choke sand down, no matter how delicious the meal actually was. But now I tend to have a series of snacks and small things (usually a couple of babybels, a bit of meat (ham or salami, etc) and a big protein shake with my breakfast coffee) and further snacks throughout the day and save my big meal for the evening when it’s wearing off. I’ve never had high BP on it either, I’m the opposite, my BP has been very low (93/64) and I’ve been quite lightheaded on standing sometimes.

I’m not due a review with my psychiatrist until October, so I think at that appt I’m going to ask about adding in a short acting dose too, and just take that as and when I need to. I did find that the monthly appts during titration weren’t really enough time for me to fully say how I felt on that dose, I work shifts and an irregular work pattern so it was tricky to have captured every combination of shift, etc in the 28 day period between appts.

[kingsleysbootlicker]

@Sanfranciscobabe I'm trying not to get my hopes up too much but have to admit it is exciting I didn't get to sleep last night until 4.30am though, after taking it at 8.30am yesterday. I'm hoping that's not going to be the case every night!

It's interesting reading about appetite changes with it and I know it can be precribed for binge eating even in people without ADHD... I was still hungry yesterday (but I'm only on the 20mg dose) but last night I realised I hadn't been thinking about food all day like I usually would and I had definitely eaten less than usual. I'm very overweight at the minute so that's a welcome side effect for me

[Sanfranciscobabe]

@ZealAndArdour that’s really interesting as I’m on 20mg and aim seems to be to get to 40mg. I wondered about the ability to add in a fast ‘top up’ if needed

@kingsleysbootlicker I’m also keen to see impact on appetite etc I have v sluggish metabolism, binge & compulsively eat which I think is all ADHD linked. I’m just tipping in to ‘obese’ bmi at the moment so some weight loss wouldn’t be unwelcome

[ZealAndArdour]

Just be careful with the eating/weight loss, if it’s too much loss, too quickly they can choose to stop it, if they feel it’s being used as a method of weight control. I think it probably depends on the psychiatrist, and they may not be too concerned if you have a higher BMI to begin with.

I was diagnosed and treated for BED long before I even fully realised I needed to be assessed for ADHD. After I finished the psychotherapy for BED I waited a year (to confirm to myself that I was stable and not regularly binging) and then had WLS. My BMI pre surgery was 53.9, and it’s now 28.3, my psychiatrist knows I’ve had WLS (17 months ago) and that some continued losses are expected, but I think once my BMI drops below 25 he’s probably going to start paying a bit more attention to the weights at my review appointments, as they have a responsibility when prescribing to monitor Pulse, BP and Weight. When I told the psych about the BED and ED treatment he said it was almost certainly Co-morbid with the undiagnosed/untreated ADHD as a dopamine seeking behaviour.

[Sanfranciscobabe]

That’s good guidance, thank you. BMI is 31 at the moment, psychiatrist said they’d start to monitor closely if it got to lower end of normal (around 20ish) that seems impossible to imagine, I’ve not been that weight since I was 18

[kingsleysbootlicker]

Mine's 33, I'm the heaviest I've ever been. I'm hoping the Elvanse will just help me limit snacking rather than stop my appetite completely

[PerditaNitt]

Following with interest because I’m starting on 30mg next week. I’ve taken a couple of days off work so that I can have low stress days when I start.

how is everyone getting on with the meds since the thread started?

[PisforPeter]

Elvanse has been amazing for me. Started in March & now up to 60mg. Slight dry mouth & definite appetite suppression but I feel so much better.

[kingsleysbootlicker]

It's day 5 for me now and I'm getting on great. I feel like the effects from it are lessening each day but I'm getting hardly any side effects, which is great for me because usually I get really bad side effects from all medications. So I'm hoping it will continue like this and then I can try the higher dose to see if it helps more

[Sanfranciscobabe]

I’m feeling the same, the effects same less noticeable but dose going up by 10mg next week so that’ll be interesting

@PisforPeter have you seen much weight loss as a result?

[PisforPeter]

Yes, almost 10kgs. I have a normal BMI so need to make an effort to eat more now tbh

[Sanfranciscobabe]

Wow! That’s a lot for a normal BMI. More than I expected.

im feeling really headachey and tired this afternoon, didn’t sleep well last night, period and I think a bit of coffee/sugar withdrawals as I’m not having anywhere near as much as usual

how’s everyone else doing?

[PerditaNitt]

I’m now on day 2 of 30mg of elvanse. Not feeling too different and disappointed not to have that very obvious wave of clarity that others report. My husband says that he has noticed a difference but I think that is down to me having taken this week off work to have a stress free period while trying the meds.

Have had a slightly dry mouth, mild headache and some insomnia. I’ve tried taking it earlier today and seeing how i get on. I’ve also given myself a to do list of activities around the house today to see whether I find it easier to tackle with the meds (clearly not since I’m on mumsnet with a cup of tea to hand…)

[PerditaNitt]

@Sanfranciscobabe @kingsleysbootlicker how are you both getting on with the new meds?

[Sanfranciscobabe]

Feeling less effects but I suspect that’s because I’m getting a bit used to it. Dose increasing by 10mg in a couple of days. Wonder if that will make a difference again.

im still definitely better but it’s not as noticeable as it was

[kingsleysbootlicker]

I'm not getting any noticeable effect from it now after a week and I'm constantly exhausted and feeling edgy, which is the way I was feeling for the first few days once the effects wore off. I'm meant to be on this lowest dose until Saturday before raising it but I'm seeing the ADHD Pysch this eve so he'll maybe tell me to go up a dose now

I really hope it eventually works out for me as I feel I've been teased a bit by how much easier life could be! Might have been better to live in ignorance

[PerditaNitt]

@kingsleysbootlicker do you think the tiredness/edginess is linked to insomnia from the meds?

@Sanfranciscobabe Do you notice any difference in your day-to-day tasks. Eg if you had to relive the most stressful day that you experienced this year again tomorrow with the meds, would it be any easier?

[ZealAndArdour]

I sometimes get the uncomfortable, edgy, doom sort of feeling, but I tend to find it happens when I’m sat pontificating, and it usually eases if I get up and do something instead.

I also find a dose of magnesium (400mg from Holland & Barrett) helps with the tense muscles (usually my jaw - find myself unconsciously teeth grinding a fair bit). My psychiatrist recommended this.

I don’t really have a massive unstoppable burst of energy on the meds these days (and if I do I tend to put it down to ADHD itself rather than the meds), but generally my life is more productive now. When I come down in a morning and make myself a coffee and get my breakfast, instead of going back upstairs to sit and ponder how I need to unload the dishwasher and put a wash on, I’ll just do it straight away while I’m already down there, etc.

But I do struggle to properly relax now, I feel a whole heap load of guilt about sitting doing nothing, when there’s things I could be doing or researching or whatever. Or instead of relaxing I’ll be writing the next days to-do list and my brain has already mentally moved on to another full on day, without letting myself relax from the one I’ve just been through. Toxic productivity I call it.

[ZealAndArdour]

I found that my sleep was actually better in my first few weeks on meds, as I suddenly had the ability to tell my mind to shut up as it was sleep time, instead of ruminating about all the things I hadn’t done or needed to remember to do.

Could be worth keeping a note pad next to your bed (or a phone app) so that every time a thought pops into your head that you would stay awake thinking about, you can write it down and then trust that it can’t be forgotten and doesn’t need dealing with right now.

Also a good idea to revisit the principles of good sleep hygiene; dark room, ear plugs/eye mask if you think they’ll help, reading a book for a little bit, no blue light, predictable bed time, skin care, hair out of the way, fluff the pillows, nice pyjamas, etc. I find the little bed time rituals and routines very soothing. And I try to have a similarly predictable morning routine on my days off too.

[PerditaNitt]

@ZealAndArdour great advice. I’m trying to use starting meds as an opportunity to build better habits, particularly around sleep routines. I find that having my phone in a separate room, using my diffuser and reading before bed helps hugely (although I’ve been rubbish at doing this for the last 6 months or so) - your post has just encouraged me to keep focusing on this.

[kingsleysbootlicker]

@PerditaNitt
No, I'm sleeping completely normally on it, possibly even better!

I ended up feeling really jittery yesterday afternoon, very lightheaded, heart rate increased, and blood pressure was in the 'very high' range. But I have Postural Tachycardia Syndrome so my heart rate and blood pressure are generally high throughout the day, so 'very high' is not that much higher than my normal

Saw Pysch last night and he reckons I'm a fast metabolizer (I actually have 23andme data to back this up, which is interesting) so ideally need a higher dose but still need to go slowly due to side effects. I am generally very intolerant of all medications and get even the uncommon/rare side effects on most, so I was expecting this. So I'm going to keep an eye on my blood pressure and try to stick the lower dose out until Saturday so that I can try the higher dose then

As a side note, I found some anecdotal evidence last night of some people doing better on it/having less side effects when it's taken on an empty stomach. I had done that the first few days, but once I realised that the effects were wearing off after a few hours, I started taking it late morning after eating. So this morning, I took it first thing on an empty stomach and so far it is feeling like it's helping a bit more and I don't feel as jittery. Will be interesting to see how the rest of the day goes

I hope you all keep posting as it's nice to have some companions on the journey 🙂