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Anyone else gone from 36mg to 54mg of Concerta XL and suddenly it no longer works?

ADHD2024 profile image
11 Replies

Newbie here....was diagnosed with ADHD last month and was prescribed concerta xl. 18mg for one week and then onto 36mg for 3 weeks. It felt like it was working fine and being effective but it was suggested that I go up to 54mg. I started 54mg last Monday 20th and I was expecting the sudden 'Woah! That's kicked in' feeling as I did going from 36 to 54mg, but it never came, and it felt like I hadn't taken anything at all. I have been taking it for a week now and it's not improved any.

It almost feels like I am having withdrawal symptoms as though I have stopped taking the meds altogether, and feeling like I did prior to taking meds and worse. I am feeling kinda sad 😥

Has anyone else had this happen to them?

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emiL1234 profile image
emiL1234

A lot of people live that same thing, then they get tested and find out they have no trace of the medication.

STEM_Dad profile image
STEM_Dad in reply to emiL1234

Are you saying that their medication is getting replaced with a placebo?

ADHD2024 profile image
ADHD2024 in reply to STEM_Dad

Interesting....that was my first thought as well. I contacted the pharmacy to see if I had a faulty batch. But they came back and said there wasn't any recalls or anything, but who's to say they are telling the truth 🤷‍♀️ I googled the company that makes the Concerta and they have had recalls due to quality issues in the past...

STEM_Dad profile image
STEM_Dad in reply to ADHD2024

Sometimes people won't respond to a higher dosage of a stimulant than they would to a lower dose.

The only example I can give is myself and caffeine. Sometimes, when I have a bit too much caffeine, it will make me tired. It normally takes months for me to build up a tolerance (and then several days without caffeine to reset). But I can remember a couple of times that I had a very strong coffee (extra large cappuccino with 5 shots of espresso in it), and I was less able to focus and I started yawning. (I had to follow up with a bottle of water to keep from going to sleep...I was at a conference with a lot of noise, and I was falling asleep in my chair.)

I know that caffeine acts differently than ADHD stimulants, so it's not the best example.

emiL1234 profile image
emiL1234 in reply to ADHD2024

they had shortages too.

emiL1234 profile image
emiL1234 in reply to STEM_Dad

I would believe so, it's common on places like TikTok to hear people saying that their new prescription stopped working. The curve bell effect also could explain what this person lives. As for myself, my body tolerates medication so quickly that there is no point.

emiL1234 profile image
emiL1234 in reply to STEM_Dad

I would believe so, it's common on places like TikTok to hear people saying that their new prescription stopped working. The curve bell effect also could explain what this person lives. As for myself, my body tolerates medication so quickly that there is no point.

Hi, I have had this experience with Elvanse Adult and some batches of Elvanse, it’s known that there can be variation in efficacy of some batches for some people.

Do you take any other medications that could affect the ingredients and could be contributing to the watered down effect of the medication? E.g. Lithium, some report Pregabalin etc. Sometimes weight, metabolism, other health conditions, can also be factors in medication absorption, dosage needed and effectiveness.

I also recently came to the mind blowing realisation when my Elvanse completely stopped working for a long long time and I was really suffering without the benefits and even short acting Amfexa was essentially useless, that it was my high consumption of Vitamin C. Vitamin C completely stops the medication being absorbed especially in high quantities and basically rids it from the body in extremely high quantities making the medication essentially non existent. It’s not recommended to have any Vitamin C containing products including sweets, fruit, vitamin tablets, vegetables etc. for at least 1-3 hours either side of taking your medication to enable it to be absorbed effectively and to just be cautious in your daily life to make sure it’s not having an effect on your ADHD medication. There’s lots on this online but I wasn’t told by my service and was oblivious until I started to do my own research into why my medication had completely stopped working and how much Vitamin C was in the litres of Ribena I was drinking, it really hit me how bad my situation was!!

Please discuss this issue you’re having with your clinician, prescriber and a suitably qualified medical professional because they are the best people equipped to help you further with this. It may be that Concerta XL isn’t the right medication for you, it could be to do with the shortages or it could be something in your diet or regime thats causing the medication to be so ineffective, it could be to do with your metabolism but they are the best people advise you and explore this further.

In the meantime, you could try speaking to your pharmacy or the manufacturer for advice and compare ingredients in your Concerta XL to usual Concerta XL or any past Concerta releases and see if any changes have been made to the recipes or ingredients given the shortages that could explain the ineffectiveness. I have some old Concerta XL 54mg from May last year which I might still have a box for because Concerta didn’t agree with me at all. I could check for you to see what the ingredients were written on the packet, so you can see if any ingredients have been changed, if that would help you at all to get to the bottom of things?

Could you speak to your provider and ask to go back on the reduced dose if you found those helpful until you find another solution or change medication?

I really hope you find answers soon and are able to find a medication that sustainably works well for you & enables you to become optimised. For me it has definitely been a difficult journey and can sometimes be a case of trial and error because everyone responds so differently.

As for withdrawals you could be experiencing the ADHD medication / stimulant crash which usually occurs when the medication is slowly coming out of your symptom in the afternoon / evening but it varies for every person or you could be experiencing rebound because your medication isn’t working for you or being absorbed effectively. These are when ADHD symptoms / traits can come back with a vengeance sometimes worse than before you tried stimulants which is why you often have to reduce down slowly if you ever want to stop ADHD medication longer term, to prevent your symptoms returning.

This is from what I have heard people say or experienced myself because everyone’s experience on this is so vastly different, but ADHD stimulant medication extended release usually lasts for people anywhere between 6 - 14 hours. The advertised length by the manufacturer for modified extended release is 12-14 hours. Some people crash early in early afternoon others don’t crash until the evening, it depends on so many factors with some people being more likely to crash or experience the crash harder.

It could be that you need to try another class of stimulants such as Lisdexamfetamine (Elvanse) which is also extended release up to 14 hours, but also comes in immediate release Dexamfetamine (Amfexa) which lasts anywhere from 2 - 4 hours and would usually be taken multiple times a day. There’s also non-stimulant medications where the mechanisms work slightly differently and can take longer to see the effectiveness e.g. Guanfacine, Atomoxetine and Intuniv but can be very effective for many people who can’t take stimulants or don’t find them helpful, for managing ADHD.

There are other Methylphenidate medications such as Ritalin that could be more suitable for you but usually if you haven’t responded well to Methylphenidate they usually recommended moving over to Lisdexafetamine (Amphetamine) stimulant medication.

Please don’t make any changes at all to your medication without making an appointment with a ADHD clinician because it can be very dangerous and needs to be managed & monitored carefully. If you’re really struggling, experiencing side effects or feeling depressed & sad then services can usually make you a more urgent appointment to get advice and support regarding your medication. If things deteriorate any further or you notice any other effects that are worrying you please reach out to help as soon as possible e.g. NHS 111, going to A&E / Urgent Care, seeing your GP, calling a mental health helpline or crisis service etc.

ADHD2024 profile image
ADHD2024 in reply to GiraffeSquishmallow

Thank you GiraffeSquishmallow for the feedback, that's helpful 😊 I would be interested if you still had the box of 54mg from last year? No worries if not....

Currently I am not taking any other medication as I didn't want anything else affecting the medication.

I have contacted the clinic and they agreed it doesn't sound like its working for me, and will be moving me onto a new medication called Xaggatin (new version of concerta) 36mg to take in the morning and then a booster amount of 18mg in the afternoon.

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