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.

@kingsleysbootlicker thanks for the update - just what I needed to hear today.

Im on day 5 and am feeling a bit disappointed. I’m getting side effects (clenched jaw, higher heart rate, mild insomnia) but with little upside. I’m slightly calmer and have better emotional regulation, but it isn’t much different versus when I tried a good quality CBD oil, which had no side effects. My brain is only slightly less foggy, but I’m still easily distracted and procrastinating as much as ever. I am also struggling to relax properly (I think @ZealAndArdour mentioned something similar to what I’m experiencing - “toxic productivity” is the perfect description.

I tried an empty stomach versus with food, and didn’t notice too much of a difference so far, but will experiment again.

I’m due to speak to my psych next week - maybe a higher dose is needed but I think your comment about having to take it slowly to allow for side effects to fade is useful. I may need to do the same and accept that this is going to be a slow process….

@PerditaNitt I think it's definitely going to require more patience than I realised, and patience and ADHD don't really go well together! Fingers crossed it's worth it eventually

I had a very useful chat with a family member last night who has been on elvanse for a year and reassured me that the higher dose will help.

They also advised cutting caffeine (particularly) coffee because this can amplify the side effects. I have 2-3 coffees per day so I’m switching to tea today and then will start to reduce. Will update the thread to let you know if it helps.

He also advised that the magnesium will take a while to get into the system and that the teeth clenching may take a few months to settle down.

He also suggested I take the dose a little later so that the meds haven’t fully worn off by the evening so I can have a peaceful sleep routine. I think mine wear off at about 7/8 and then my noisy brain switches on again, so delaying that for a couple of hours sounds sensible.

Hi, just thought I’d check in and share how I’m getting on.

I’ve just moved up to 50mg today - so far, so good - no additional or stronger side effects and I’m feeling quite productive (despite the heat which usually sends me into a slump).

The doctor was worried about my resting heart rate, so I stayed on 30 for about one month so that we could monitor and ensure it stayed low enough to tolerate the 50mg. In that time, I’ve noticed my side effects are getting much better (apart from when I’m not sleeping, because of the heat etc) and I’m finding it about 10-15% easier to focus. I’m hoping that 50mg is going to help a lot more.

How is everyone else getting on?

Hi! I went up from 20mg to 30mg, but I am going to have to stay at this dosage now until I get something else added in for my PoTS, as my heart rate and blood pressure have gone up a bit further. The 30mg dose isn't helping with focus/concentration so far but it's helping with procrastination which is great. And I'm not having any negative side effects on it, so hopefully a higher dose will help more once I'm able to take it. I'm hoping to add Clonidine which is used for the type of PoTS I have (Hyperadrenergic) but is also prescribed for ADHD, and apparently works best for it when taken with a stimulant. So for now I'm biding my time but hopeful for the future! Keep us posted with how the 50mg goes

@Sanfranciscobabe Is it working out for you?

@kingsleysbootlicker that sounds positive, albeit it sounds like it will be a slow process.

My doctor is asking me to monitor my resting heart rate quite closely because it jumped to above 100 when I was at my last appointment. He wanted me to have it below 100 (medical guidance for elvanse is it should be below 120, but he is more cautious). I’m monitoring my Apple Watch heart rate monitor like a hawk (it’s on my watch face now) and checking BP twice a day on the higher dose. I seem to be tolerating it quite well so far, because I think being on the 30mg for a month helped. I’ve also cut caffeine down to one cup of tea a day, which is also helping.

Hi, saw your comment and thought I’d pitch in as I’ve ADHD and PoTS as well. My PoTS episodes were triggered by eating/drinking, lasting for a couple of hours after every meal. I also don’t have a formal PoTS diagnosis, just a label of “Orthostatic intolerance” which they’ve acknowledged is “PoTS-like” but are reluctant to formally label due to several possible causes all happening around the onset of symptoms; Covid and massive weight loss (just under 14 stone now).

Are you on anything at all for PoTS at the moment? I’m on Bisoprolol, was taking 2.5mg in a morning and had an extra dose of 1.25mg I could take in the afternoon when required. It massively helped with my PoTS symptoms, but when I stated taking Elvanse on top my blood pressure dropped massively. It’s usually around 90/55 or thereabouts now, some days 85/60 so although I’m no longer tachycardic that much (there is an elevation in heart rate on standing, but not to the point where I’m symptomatic like I was pre-treatment - those rates were between 140-170bpm), I’m hypotensive/dizzy and having pre-syncopal episodes quite frequently. The arrhythmia nurse has reduced my morning Bisoprolol to 1.25mg and left the optional afternoon dose in place, the dizzy/pre-syncopal episodes have eased slightly but not totally, and I still get them after sitting/laying for long periods. Next step is to try Ivabradine if this doesn’t fix it, but she said it’s associated with more side effects than Bisoprolol. I’ve continued with my Elvanse 40mg throughout all of this as I don’t really want to go back to unmedicated ADHD life 😔 and all the chaos that comes with it.

My cardiologist was supportive of medicating the ADHD and he’d found some papers saying that people with refractory PoTS were often helped by being on stimulant medication.

Its all such a tricky balance, especially trying to formulate a plan between two different specialities, seems like it would be much easier if they could all just sit in a room together and thrash it out between them, instead of me needing to be a go between and everything taking months to get sorted.

As in, I’ve lost just under 14 stone. So they think my body needs to catch up and that it might resolve itself when it does.

@PerditaNitt I've found the same with caffeine, even the slightest amount was raising my HR and BP so I've cut it right down too. Hopefully yours will stay stable now on the 50mg

@ZealAndArdour I'm not on anything yet for PoTS as I'm in NI and we don't have any specialists here... the cardiologist I originally asked to be referred to said "you know more about this than we do" and that was it! I've now found a fab Cardio who has been learning about PoTS over the last few years and has treated a couple of PoTS patients before me, although my situation is more complicated because it is HyperPoTS (high blood pressure spikes as well as HR) and I also have a whole load of other conditions. I was just about to start the Elvanse when I saw this Cardio for the first time, so I wanted to get established on it first before adding another med in. But I appear to have done it the wrong way round I'd have been better getting the PoTS medicated first and then sorting the ADHD but that's impulsivity for you! Well done on your weight loss, that's an amazing achievement

Hello, just found this thread while still wide awake at nearly 4 am ! My adhd brain is having a busy night and won't let me sleep... I was just starting to drift off about 2 when it started playing show tunes in my head and that was it ! I started on short acting methylphenidate and it was literally amazing, I could feel my brain untwist and relax.. but it wore off quickly and I'd forget to take the next one. Then I tried concerta which was really good for helping me get stuff done but my sleep was awful and I felt very 'functional'.. I felt very medicated and was very flat and automated. I then changed to Elvanse 30mg - I hated it the first few days as lots of tachycardia but after a few days that settled. I found it a bit less effective than concerta but I felt much more like me just a slightly more productive version. I'm now on 40mg.. and I think it's OK. I'm not as organised and productive as I was on concerta but I feel better on it and it is very obvious when I have and haven't taken it.. I'm almost a functional grown up when I take it ! Some days I give myself a day off from it and know I need to pretty much write those days off. If I stop it for more than a few days my anxiety escalates as I start feeling out of control and overwhelmed by life again. I wouldn't want to go back to not having it again !

@Didiplanthis It definitely seems that it takes a lot of 'trial and error' to find the meds that work best for each person. Elvanse is the first I've tried but my daughter tried Concerta before it

Hi, I’m about to start on Elvanse. How did you get on?

I got diagnosed with adhd in april and was so looking forward to starting the elvanse first day great was on 30mg, by end of week, i was crying depressed, then someone said this was crashes which i never knew about it, so i stop it decided to start it again, so back on 30mg and my first week av just been exhausted and no motivation had such high hopes for this med, am starting 40mg tomorrow so do u think this will stop me from being exhausted x

day 2 30mg. I was just a bit odd & edgy yesterday but didn’t need to do much. Had an awful nights sleep & was super edgy for the firs 4 hours. Concentration want great & wasn’t particularly well coordinated. I did find that when I asked brain to do something, it complied a lot easier. I’m really hoping things will level out, can’t imagine driving & being in a workplace like I was this morning. I hope it was just being super tired that threw a wrench in things

Day 3. Slept better last night but need to improve sleep routine. I made a much weaker tea this morning & didn’t finish it, I think that helped. I wasn’t as edgy or jittery but it was still there a bit. Bp & rate is still up, does that subside at all?

So after started 30mg and having a horrible week with it, crashing 🙈 i started again was nearly 2 weeks on 30mg when got changed to 40mg and a issue between doctors and phycharist av waited a week for the prescription, so starting again tomorrow just looking for advice on how to prepare and what to avoid please, am actually in 2 minds wether to start it again, i just want to feel normal 🙈🥹

I started 30mg a week last Sunday, didn’t take it Fri, sat, Sun & started again yesterday. I was feeling like bp was high. Anyway, started back up yesterday & took it 7:30 rather than 6. Normal cuppa at 6 as I’d stopped all caffeine as well. I had the pill with one of those tiny yoghurts (I don’t usually eat any breaky) & it seemed to help. I think I’m starting to get used to it a bit too. Hope that helps.

Am the same dont eat a big breakfast now worrying to make sure i eat a breakfast incase it dosent work

So I’ve increased to 50mg today. I was a bit worried about feeling edgier but it hasn’t been that way. I started feeling very calm but now I’m starting to feel a little down. Has anyone else experienced this?