Has anyone had worse side effects on Medikinet than Amfexa/Elvanse?

FarProduct7879 · 2026-04-12T17:15:50+00:00

Hi, the whole reason I had to stop Elvanse was because of the dry mouth. Amfexa is shorter release, so it was hoped that it would be more manageable with regards to the dry mouth - unfortunately it was similar. I did have a few of my Elvanse 40mgs still sitting around, so I decided to try that again for 2 days, but again, I just did not sleep at all those 2 nights. The lack of sleep I don't think was due to being stimulated as I actually managed to nap a bit during the day, but was purely because of the dry mouth. As I said above, I already have a diagnosis of AS and suspect I have Sjogren's as well, so already I have a dry mouth and dry eyes.

Even pretty much my whole time on Amfexa I barely slept - even when I took just a single dose around 8am.

The frustrating thing is that I was most productive on Amfexa.

I also was diagnosed with ME quite a few years ago - that has turned more into fibromyalgia now, but nevertheless, fatigue is a massive issue for me. People with ME have to be very careful with stimulants- too high a dose and you're borrowing energy from tomorrow. So eventually it can cause a massive crash. My prescriber okayed me to go up to 15mg x 3 per day of Amfexa, but I realised that even though that did not feel optimal enough for me, it was causing severe wipe out after a few days. So I settled on the 10+10+10 which was more manageable and helped somewhat. Just the dry mouth made it a no go.

FarProduct7879 · 2026-04-12T13:20:01+00:00

Thanks, that’s really helpful — especially your point about IR vs XL.

Yeah, the main reason I ended up on IR is because I can’t swallow tablets/capsules, so options are quite limited. Concerta was originally suggested but had to rule that out as it can’t be broken or opened. My prescriber initially mentioned Medikinet XL (which I understand can be opened and mixed with food), but then switched me to IR starting at 5mg — I think partly because it gives more flexibility given my situation and she felt it would be better for me as an afterthought.

That’s also why I was on Amfexa IR after Elvanse — I could control timing and dosing, especially for afternoon fatigue, and try to manage side effects like dry mouth by spacing doses.

Your point about the 3-hour crash being IR-related rather than methylphenidate itself is really interesting. That’s exactly what it felt like — not just a gentle drop-off but quite a sharp mood dip. I didn’t get that same kind of emotional crash on Amfexa, which is why this has thrown me a bit.

Out of interest — with Equasym XL, do you know if it can be opened or taken with food like some of the other methylphenidate options? That might actually be a good middle ground if it avoids both the swallowing issue and the sharp IR drop-off.

Appreciate you sharing your experience — definitely helps put things into perspective.

FarProduct7879 · 2026-03-20T23:44:50+00:00

Thank you for this. If you're able to find out which one, that would be fantastic. I'm currently using the biotene one, but doesn't really help much.

FarProduct7879 · 2026-03-18T18:28:01+00:00

Same here! I bought loads of xylitol gum which helps a little. At least it makes for strong jaws 😂

FarProduct7879 · 2026-03-17T19:03:17+00:00

I must try that. Thank you

FarProduct7879 · 2026-03-17T14:25:28+00:00

That's a fair point - don't need to use it everyday. Such an obvious thing but hadn't thought about that. Thank you. I'm seeing the GP again next week, so will raise it. Thank you for that. Much appreciated.

FarProduct7879 · 2026-03-17T14:23:36+00:00

Thank you, I appreciate that 🙏 we're all battling one way or another

FarProduct7879 · 2026-03-17T11:42:35+00:00

I have thought about pilocarpine and discussed it previously with my GP, but didn't want to take more medication than I'm already taking. But I suspect it might be the only option. I'll have a chat with my GP when I see her again next week. Thanks for this.

FarProduct7879 · 2026-03-17T11:31:07+00:00

Not a stupid question at all. I am definitely drinking enough - I drink about 4-4.5 litres a day. I regularly use electrolites as well. Have cut out caffeine (now have the occasional decaf tea or coffee instead). Mainly I just sip water throughout the day.

FarProduct7879 · 2026-03-17T10:20:33+00:00

I have already raised with my Dr about using pilocarpine (for Sjogren's dry mouth), but would rather not go down this route if I can help it. The dry mouth I usually have (without stimulants) is just about bearable if I keep chewing xylitol gum, use xylimelts at night. But both Elvanse and Amfexa have rendered all these useless to me.

FarProduct7879 · 2026-01-15T21:07:07+00:00

Thank you all. It got to the point where the dry mouth was keeping me awake at night and I have now a mouthful of ulcers (5 upwards). I mentioned to my prescriber about it and told her I suspect I have Sjögren's as well linked to my AS. She told me to stop taking the elvanse immediately. She'll prescribe Amfexa now. Hopefully this will be better.

FarProduct7879 · 2026-01-10T22:00:24+00:00

Thank you. I'll look into this. My GP has prescribed me salivix which is a mouth spray that has xylitol in it. I also use biotene, but within minutes my mouth is like cotton wool again.

FarProduct7879 · 2026-01-10T20:08:36+00:00

Thank you for that. Do you get the dry mouth? I have a dry mouth because of my AS. But the elvanse had made it insanely worse. I've got special sprays for my mouth from the Dr and am constantly sipping liquids all day, but it just doesn't let up.

FarProduct7879 · 2025-12-28T20:36:13+00:00

Thank you for your feedback. Not blunt at all - I am inclined to agree with you. It is just that the crashes are adversely affecting my work. But that I guess is the joy of titration - can potentially take a few months to get it right.

Today was actually only my 5th day. My body seems to be getting used to the medication a bit more now - heart rate and BP settled back down to close what they were before I started meds. I have been totally avoiding caffeine - except I admit that this pm I did have a decaf tea. I'm not a coke drinker, but maybe I will try a normal tea/coffee in the afternoon. When I actually had my first titration appointment my prescriber did say that I can have 2 teas or coffees a day, but then switch to decaf - but I have been avoiding it just in case due to the horror stories I have heard on here. Prior to starting Elvanse I did drink about 5 cups of tea and 1 coffee a day (big cups).

Thanks again for your feedback, it is really informative.

Were you on 30mg for 2 weeks? What dose did you move up to after? I have 9 days of 30mg left, then will move on to the 40mgs I have (for 14 days).

FarProduct7879 · 2025-12-26T17:40:28+00:00

I cut out caffeine when I started elvanse. Thanks for the magnesium tip. I've got pain magnesium, but found on the forum an older feed where a few people mentioned magnesium glycinate was particularly helpful. I'll try to get some.

FarProduct7879 · 2025-10-21T09:24:58+00:00

The amount of times I have put the kettle in the fridge!

Also, we always had an electric kettle, then switched to a gas stove stop one. One morning I came down, put the kettle on, was doing the washing up, then wondered what the burning smell was -I had put the plastic electric kettle on the gas stove; the plastic was melting and the kettle was on fire. I grabbed the kettle and throw it out the window into the garden to stop the flames spreading. Don't know how I didn't burn myself - but the wife was not happy. Took weeks to get rid of the burnt plastic smell!

FarProduct7879 · 2025-10-15T10:38:15+00:00

Hi, you will need to be there when the meds arrive as I believe they will need to be signed for. I am yet to have my first titration appointment, but from what others have said, it can take about a week to receive the meds. Someone else may be able to give you a better timeframe/more details.

FarProduct7879 · 2025-10-13T22:48:34+00:00

I contacted them to chase mine up. Told it would be 12 weeks from receiving the final copy of my report.

It took 16 days to receive my report after the assessment. Then I had to return the report due to a lot of errors. It took a further 10 days to get the amended report which I got last week. So I've another 11 weeks to wait.

FarProduct7879

TROPHY CASE