Starting Medikinet - any experts around?

[MissHavershamreturns]

Hi all, we’ve just got a prescription for Medikinet and are looking for the right day to start - my dc who is 10 has been very emotional and anxious so I want to start on a weekend or half term which is now only ten school days away, where I can support if there are side effects as they may be very frightening for dc, given they are currently pretty vulnerable.

The paed has suggested that the most likely effects will be headaches, appetite suppression and difficulty getting to sleep. Is this what everyone found?

Does anyone have any advice on what time to take it? Paed said best to take with breakfast but dc is a very early riser (up from 5.30 am). We currently have breakfast at 6.45 am and then dc is into school for 8 in early Club and is collected at 3.20 but some evening club nights until 4.30pm. It’s the 8 hour version of Medikinet.

So grateful for any advice on what worked and what didn’t

@Hels20 and @Purplepeople12 its interesting to hear your costs and I’m sorry they’re around as high as mine. I didn’t realise that we would have to keep paying for a year after getting a diagnosis and hopefully anyone reading this will at least be able to make an informed decision.

Hope everyone is having a lovely bank holiday weekend!

On our local ADHD chat board someone has posted today to say they have been told there is an issue with getting hold of some mg sizes of Elvanse. Temporary shortage of some medicine dose sizes according to them.

We’re not on Elvanse but if anyone else is then might be worth calling local pharmacies to check and ask for a prescription tweak if needed. I am not an hcp so I have no idea if this is true but just in case wanted to add it here.

Hello - just popping in for a quick catch up. DS has autism (diagnosed aged 8) and ADHD was added this year age 13 privately. We are in the CAMHS queue - started trying for the referral in Feb/March but it took until June to clear triage to join the queue to wait for a year or so.... Totally ridiculous. I spoke to our GP about shared care and was told that they didn't do this on principle as people shouldn't "skip the queue" so I pointed out to the receptionist that having waited 4 years for support from a school for the assessment and losing 2 years of secondary school during a placement breakdown, that the NHS system is completely broken and did they think it was acceptable that he lost another 2 years and potentially crashed out of his GCSEs? Is it fair that this is the effect of the NHS queue? The receptionist then agreed that under the circumstances that maybe they could review their usual policy.... Anyway we aren't through titration yet so the shared care excitement is yet to come - I am not looking forward to this because our GP is a complete shambles and have left us without other meds in the past. I can't decide whether to stay private for the peace of mind (if it wasn't so blooming expensive). We were £1400 for the assessment and are £295 for monthly follow ups during titration (currently at No4 and we expect to have maybe 7 or 8 in total to get daytime and evening booster/ homework meds sorted). The meds started at £40 per month and we are now up to £120 per month because we have asked for a mix of smaller tablets in case of adverse reactions. DS is on Equasym XL which is a long release methylphenidate over 8 hours with 30% short release dose in the morning and 70% long release for the afternoon. It is working well and he has titrated up to 40mg so far. We had a lot of wobbles in the hot summer period as his pulse kept spiking, but having bought a smart watch we discovered that this happens when hot, hungry or stressed that the pulse will be too high and he will be pulled off the meds. We lowered his dose in the hot spell and tried again when it was cooler - it has worked much better. DS is desperate for the meds to work so he can stay at his current school. The effect of the meds is certainly working well, but we are still not sure whether it will be enough. The ADHD symptoms are much improved but the autism is still causing him problems. Fingers crossed for our review later this week and going up another 10mg.... hoping for no side effects. Anyway thats all from us for now. Hope all of you are doing well xx

@KnottyAuty great to hear from you. Huge well done for getting the point across on shared care. I agree it would’ve been totally unjust to make him wait. I’m going to call our GP tomorrow about shared care so will let you know how I get on(!)

It’s great to hear the meds are working thorough the pulse spikes sound a bit stressful. Hopefully the meds can keep on going up now.

Hi I hope it’s ok to join this thread? My DS was diagnosed a year ago (13 yo) with ADHD. He’s been able to focus better and is calmer on Medikinet XL. Problem is his nose is completely blocked when he takes it. It only clears in the holidays when he doesn’t take it. It’s frustrating because this does seem to be the only side effect and so we are reluctant to change meds but DS finds it really uncomfortable and says it’s becoming the distraction now.
Sudofed nasal spray clears it for a day but can only be used very short term.
Wondering has anyone had this and any tips?

Welcome to our thread @Waythroughwoods I’m glad to hear the medikinet really helps.

I have absolutely no experience of that side effect with medikinet. Hopefully someone else on the thread will know more.

Is it listed as a known side effect on the medikinet leaflet? I also wonder if it is listed in the adhd medication book at all.

Just saw stuffy nose seems to be listed here as a known side effect:

www.mayoclinic.org/drugs-supplements/methylphenidate-oral-route/side-effects/drg-20068297

It does say incidence isn’t known.

Looking at this it seems sometimes the congestion can be an allergic reaction

www.medicalnewstoday.com/articles/ritalin-effects#Serious-side-effects

I think either way it’s definitely worth discussing with the consultant and seeing if it’s worth trying a switch on to another drug maybe?

I should say I have absolutely no expertise whatsoever on medication and am not an hcp!

Many thanks @MissHavershamReturns for your help. I have an appointment with the consultant booked but suspect their focus will be on changing meds. This may be necessary- especially if it is an allergic reaction (I hadn’t thought of this!) - but I was hoping that a topical treatment for his nose may be possible as less disruptive all round. We shall see what consultant says.

I just checked in the medication book by Prof Peter Hill and I don’t think nasal congestion is mentioned. It sounds like poor ds has been a bit unlucky there to get an uncommon side effect

I hope everyone is getting on well. Just wanted to report that I’ve finally managed to get shared care set up and it has actually been reasonably painless.

The GP has agreed to dispense the meds and set up a proper repeat prescription. I’m hoping that will make getting the medication a whole lot easier in future.

DS seems much better in school on the 30 mg which is great. We’ve also met the new class teacher and she seems nice.

@KnottyAuty how are things? Hopefully our experience of getting the meds prescribed is reassuring

@Purplepeople12 how os your daughter getting on? Is she staying on the meds?

Same here @MissHavershamReturns
After my worries the shared care agreement swooshed through and our first prescription was ready at our local pharmacy before you could say 40mg!! Delighted that something in this creaking NHS system still works..... Current dose showing very promising results but seems so high! Written work still difficult so maybe we will be brave and try another increase in October. Overall the drugs will be life changing for DS. I hope everyone else is fairing as well as us. What a difference 6 months makes!

So pleased to hear that @KnottyAuty! I know what you mean about being stunned!! I had to work so hard to persuade the GP to refer us to the nhs Consultant so I feared the worst with the prescription

So pleased to hear that @KnottyAuty! I know what you mean about being stunned!! I had to work so hard to persuade the GP to refer us to the nhs Consultant so I feared the worst with the prescription

No idea why that posted twice!!!

@MissHavershamReturns She is still currently on 15mg but we have a review on Sunday. No more nasty side effects thankfully either. I'm not noticing any benefits yet but she's on a low dose, she says though that when she misses a day she feels tired all day and her arms are more fidgety, so maybe that's a small positive change.

Has your gp agreed a share care agreement?

@Purplepeople12 that’s so good that there are no real side effects! It sounds as though she feels it is helping her even if subtly at this dose. I wonder whether you might see more of an improvement if they up the dose at the review - I hope so. We definitely saw this with ds who had much more subtle improvements at 10 than at 30.

@Purplepeople12 yes we now have shared care. Still waiting for a referral to nhs adhd services 7 months on which is pretty bad Imho.

@MissHavershamReturns That's great news, glad things are being put into place now. 7 months is terrible however, but sadly not surprising

@Purplepeople12 in our area the wait for a dual ASD and ADHD dx is now 3 years in the nhs someone told me last week. I find that really shocking.

It's the same here, ADHD 3 years, ASD 5 years. Counseling referral for CAMHS 18 months. It's all terribly slow

We had no idea our daughter could have ASD so we had gone for the ADHD assessment. It was during that assessment that the Dr recommended an ASD test. Had we followed the same route through the NHS it could potentially have taken 8 years. It's quite frightening really

It’s actually scandalous

Hi everyone, we've just had our review and the Dr has moved her up a dose to 20mg. She's taking it slowly because of her emotional regulation problems, but fingers crossed it is going in the right direction. She took her first higher dose straight after the appointment as I wanted to make sure she was OK on them over the weekend before taking them during a school day. She seems quite hyper right now, but this is how it seems to affect her at first.