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 will be watching for replies with interest as I picked up a prescription for Elvanse yesterday, same dose. I aim to start the drug tomorrow morning.

I have autism and got an additional diagnosis of ADHD last year. I've tried Concerta XL (methylphenidate) but couldn't get on with it, so Elvanse is the second in line.

Sorry I have no experience - yet ☺️

That's ok@Clarice99, maybe we can follow each other and see how we get on. I should have mine in about a week, I had to go private for my assessments (covered by health insurance) and the doctor said I have to have a private prescription with him for 3 months and have one consultation with him each month to check progress then he can transfer me back to the NHS and my own GP and I should be able to get it on an NHS prescription then. I hope anyway!!

I hope so too as some drugs/private prescriptions are very expensive!

Yes he said £80-90 a month I'm going to ring my own GP tomorrow and have a chat, see if there is anything he can do or if he's prepared to prescribe and take over care based on the report. I suspect they'll say I have to see an NHS Psych first and who knows how long the wait would be for that, probably quicker to do the 3 months privately then transfer. But we will see.

Ouch!!!! That's a lot.

I waited 25 months for my NHS ADHD assessment. I was diagnosed last summer, I still don't have my report and the issue of relevant drugs is so long winded.

I really hope that your GP is willing to take over the care without the need to go through another assessment.

I have ADHD (and suspected ASD) and started on Elvanse 30mg around five weeks ago. The first few days were amazing, I think you can often initially have a honeymoon period with stimulants - I felt so calm, happy and very productive!

Since then, things have still been very positive - I feel so much more motivated and productive than I was before, and able to do housework/manage the children and admin without feeling as though everything is a huge mountain to climb! My energy and emotions have been so much more regulated and consistent which has been amazing. I take the tablet around 7am, and feel at my best throughout the morning, but then the effect seems to taper off mid afternoon.

I found it difficult to sleep for the first few days, but that passed and I am now back to normal on that front. The other drawbacks for me have been that I have had headaches, and recently, a dry mouth and anxiety. If the anxiety continues the psychiatrist has suggested that I could also go on a beta blocker, which would help with that and also my borderline high blood pressure. Also, the meds did not seem to be as effective the week before my period which is apparently fairly common.

For me, the benefits definitely outweigh the side effects at the moment. I am in a busy time of life at the moment - house renovation, children are pre teen and teen, and I need to get a job, so I think if Elvanse continues to be effective, I would stay on them for as long as I need to! I do sometimes worry about long term side effects but then have to balance that with the benefits on my life.

I was really floundering and at rock bottom when I started the meds and although they do not make your life perfect, I feel they have made a big difference in my ability to function.

Thank you @mozartangel that's really helpful to read!

Mine will be arriving Wednesday, so will start Thursday as the pharmacist told me not to take them in the afternoon as apparently they can stop you sleeping.

Thanks for posting @mozartangel

Today is day 1 of Elvanse 30mg. I took the capsule as soon as I got up this morning, before 6am. I felt okay until around 10am then I developed a headache, dry mouth, increased anxiety, felt a bit 'fluttery' but I just rode it out, carried on working and it eventually it all passed.

I had a productive work day but felt quite stressed during the afternoon; however, that was likely due to the workload and not the medication.

I just hope I can sleep tonight.

All the best for Thursday @mymindisamuckingfuddle

No problem! Hope you both get on well with the meds.

Well, I've taken my first one this morning just before 7am so it will have kicked in by now.

I was sort of still expecting for me to have completely faked having ADHD and taking what is essentially speed in a medical format would do what it would do to a non- ADHDer and make me high as a kite.

Nope. I feel happy, generally in a good mood, calm and clear. I made sure I had a healthy breakfast before taking it and normally I'd be so stressed after getting back from the school run i'd come home and stuff my face. No urge to do so at all.

Is this what everyone feels like, normally?!

How are you getting on @Clarice99 ?

@mymindisamuckingfuddle

How are you getting on *@Clarice99* ?

Today is day 4.

Positives - not as anxious as normal, clear head, focused at work and not panicking about timescales.

Negatives - I've had a low level headache every day and a dry mouth - both minor negatives. The biggest problem is the lack of sleep. First night, 1.5 hours sleep, second night, about 4.5 hours (slept longer due to exhaustion) and last night I had 2 hours sleep. I've worked much longer days this week to try and tire myself out. It hasn't worked.

😫😫😫

I'm on 30mg but keep forgetting to take it! I think I've noticed greater calmness, am more productive, move more seamlessly from one thing onto another. But it's all very mild tbh.

I'm too chaotic to notice whether my sleep has been consistently worse - I don't think so, I've always found it hard to sleep because of racing brain and often anxiety. I'm hoping to go up to 40mg soon.

@Clarice99 I've had the dry mouth and a niggly headache this afternoon too. My mouth reminds me of when I used to smoke after a big night out. Grim.

I've not sat down all day, honestly it's such a change I have been so productive. I've felt so cheerful too. It's like night and day. Or it was today, anyway.

I hope your sleep improves! Nothing worse than lack of sleep.

I don't have much to add but I have seen recommendations to shop around different pharmacies for a better price on the medication. Apparently ASDA pharmacy can be quite good!

@NunoBettencourt

I don't have much to add but I have seen recommendations to shop around different pharmacies for a better price on the medication. Apparently ASDA pharmacy can be quite good!

That's useful to know, thank you. I have to stay with the pharmacy used by the private psych for now (plus they have it in stock reliably and deliver it to me, apparently it can be hard to get into a lot of pharmacies) but may be useful for future reference.

My GP has said he can't do anything until he receives the report, then he will discuss shared care with me and how we go about sorting that so fingers crossed once it's received next week he may be happy to take over sooner. I think it's unlikely to be sooner than the three months the psych said though as he said he wants to see me settled on the dose for a period of time before he hands me over. So I expect I've got three expensive months ahead (luckily the psychs appointments are covered by BUPA I just have to pay for the prescription) and then can transfer to the NHS.

Day 3 of the Elvanse today. No side effects except for a minor headache and dry mouth on day one. I am way calmer and more focused and the urge to eat has gone completely. I am eating three meals a day like a normal person! And to be honest I could easily see how i'd not do/forget to do that but because I have a family I make their meals to it nudges me to make food for myself too. On the days they're out I've set reminders to have some lunch etc. But the constant grazing on crap seems to be gone.

I am sleeping fine, but once I wake that it is. I am awake, whereas normally I can fall back to sleep. It was my turn for a lie in today as DH and I take turns at the weekend. I was asleep by 10:30pm, woke at 6:30am and that was it. Wide awake and up for the day. But I don't feel tired so I don't mind.

I'm due to start after my ECG and bloods are done. My psych won't prescribe to anyone without these tests due to the risks. It's going to cost me up to £500 a month though so £80 is brilliant! I'm borrowing money to be able to afford it

May I join? I've been titrating ADHD meds since December. Am currently taking Elvanse- 40mg in the morning with a 20mg top up in the afternoon on week days.

I absolutely identify with that amazing feeling during the initial days. On day one I stopped my car and sat with wonder at the strange feeling in my mind- like someone had opened the windows to let a cool air in and all the noise out.

Since then it has been less straightforward to know how much help the meds give me. Some days feel very different to others, and TBH I'm not sure what is reasonable to expect if that makes sense.

A few things about side effects:
The dry mouth settled for me after a while and was helped by drinking more and sucking boiled sweets.

Initial headaches I think may have been partly linked to cutting out caffeine (suggested by my consultant), and a change in my eating habits. I haven't really lost my appetite as such, but have less sugar cravings and so I'm eating less junk which I think contributed to headaches initially.

I haven't struggled to actually sleep but have found myself going to bed ridiculously late, sometimes at 3am. I'm unsure why- as the meds have worn off I think!

I'm on week 4 of titration. 20, 30 now 40. I'm gutted I'm not seeing more of an effect. It's helped hugely with binge eating but still failing and struggling to complete simple tasks. I'm up to 50 next week. Has anyone had the lightbulb moment after an increase in dose? Feel quite down about it all.

The more the merrier @freckles20!

I'm on day 5. I feel normal, except I have barely any appetite (no bad thing, I'm making sure I eat three meals a day but the binging has stopped entirely) and I do have more focus. Im not losing hours staring at my phone, I am getting stuff done.

So it's working! I think!

Hi OP my son is now on Elvanse. He was previously on fast release drug medikinet I think it was called but has a bad reaction. Elvanse is a slow release drug so takes longer to go into your system and longer to leave your system. It's been fantastic for him. He went on it last August and ocuses much better in school, is much calmer and learns much better as he can focus and listen better. He is much more able to participate socially too as he isn't so impulsive. He says he feels better on it. He is 10 so old enough to notice the difference. The only thing I have noticed is the lack of appetite which you have mentioned already so I have to make sure he eats 3 meals a day and has 2 snacks at least (he is pretty active) plus he doesn't get thirsty so has a dry mouth and throat. He has to take melatonin to sleep most nights but that's ok.

I've been on Elvanse since last August. I take 50 mg every morning and also have a prescription for Amfexa 5 mg which is fast release dexamphetamine which I can use to top up as and when I feel I need it, which isn't very often.

I thought I was coping quite well when I was taking 40 mg, and going up to 50 took a bit of adjustment but it's settled down and feels right. I've been on 50 mg since October I think.

8 months in I'm really comfortable at this dose. The most noticeable and best change has been to my emotional dysregulation - I can actually let things just wash over me with no drama or tantrums! I can say for eg 'I didn't like that' and discuss why not in a reasonable manner, other times I will just let whatever it was wash over me. It's pretty amazing actually and it's also nice to be able to recognise when I'm doing it.

Unfortunately I didn't become super productive at work and I still procrastinate a lot in that area so I'm looking into ADHD coaching to try and address this but it's expensive. However my garden looks great, I painted my house, I'm volunteering, I exercise more, I organise things, I do my hobbies more. All things I struggled with before.

Unfortunately no significant loss of appetite for me but I can control my binge eating. I can have a packet of biscuits in the house and restrict myself to 1 or 2 at a time. Sometimes I still binge and I look forward to eating, but it's definitely a different sort of relationship and overall I've lost 10kg in the 8 months since I started medication.

I'm still myself - shy, anxious, introverted - but a happier version of it!

@jennyyellowhat

I've been on Elvanse since last August. I take 50 mg every morning and also have a prescription for Amfexa 5 mg which is fast release dexamphetamine which I can use to top up as and when I feel I need it, which isn't very often.

I thought I was coping quite well when I was taking 40 mg, and going up to 50 took a bit of adjustment but it's settled down and feels right. I've been on 50 mg since October I think.

8 months in I'm really comfortable at this dose. The most noticeable and best change has been to my emotional dysregulation - I can actually let things just wash over me with no drama or tantrums! I can say for eg 'I didn't like that' and discuss why not in a reasonable manner, other times I will just let whatever it was wash over me. It's pretty amazing actually and it's also nice to be able to recognise when I'm doing it.

Unfortunately I didn't become super productive at work and I still procrastinate a lot in that area so I'm looking into ADHD coaching to try and address this but it's expensive. However my garden looks great, I painted my house, I'm volunteering, I exercise more, I organise things, I do my hobbies more. All things I struggled with before.

Unfortunately no significant loss of appetite for me but I can control my binge eating. I can have a packet of biscuits in the house and restrict myself to 1 or 2 at a time. Sometimes I still binge and I look forward to eating, but it's definitely a different sort of relationship and overall I've lost 10kg in the 8 months since I started medication.

I'm still myself - shy, anxious, introverted - but a happier version of it!

Can i ask what the diff. was between 40 and 50? It's the emotional regulation I'm really missing out on. The procrastination I can live with but my family are starting to really struggle with my emotional outbursts.

@Saltyandvinegar I noted a difference in my mood at 20 mg. I found the jump from 40 to 50 mg quite difficult and it took a few weeks for my mood and sleeping patterns to settle. I did think about changing my meds but I'm glad I stuck with it, and it wasn't until 50 mg that I managed to get my binge eating mostly under control.

If the outbursts have gotten worse since you started meds it could be that you need to try a different medication, but it's probably worth just giving it a bit more time. They can prescribe up to 70 mg afaik.

@jennyyellowhat It's helping so much with my eating habits I want to stick with if I can, just want it to help with my mood aswell. I feel like I'm eating like a normal person which is life changing. I know I shouldn't but the fact that it's not fixing my mood makes me feel like a fraud :(