I currently take 90mg of Concerta XL once per day (first thing in the morning) when I first started the medication (November 2021) it was great! My symptoms became much better, my sleep was fine, anxiety was fine.
In December 2021, during the titration process, my dose was increased from 72mg to 90mg, and it destroyed me! I noticed I was withdrawing from the social side of life, I was anxious, nervous, on edge and even crying daily. They agreed to reduce me back down to 72mg, which seemed to help. During the rest of the titration process, it was agreed I would go back up to 90mg, it felt fine, I mostly think I was starting to get used to the side effects.
During the course of 2022, my sleep, energy levels, and happiness all slowly went one by one. I went to the GP in July to have some blood tests done. It showed I had low iron levels and red blood cells. Started iron tablets, and this improved, but my fatigue and exhaustion just stayed the same, if not got worse.
I had a review with my psychiatrists as I noticed my medication is ending very quickly, I was now getting only about 5-6 hours' worth of coverage which did not seem right. They agreed we will add a short-acting dose in the afternoon, while I wait for titration again to change medication types.
My fatigue is affecting my whole life. I am struggling at work, I have no energy to socialise with friends, I am gaining weight, I feel sad, and I am really finding things hard! This week, I had to take the whole week off work as I was so exhausted, I could not do anything!
I spoke with my GP again on Friday and discussed my medication. They were really shocked that I had to wait so long to be readded to titration when I was suffering so much. I spoke with the provider, and they said there is nothing they can do to move me up the list, the wait is 18 weeks and that is it! Does anyone have ANY advice on how I can either make my side effects less or how I can be seen quicker to get the medication changed in the UK? I currently am a right to choose patient.
Thanks in advance!
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Andrewmartin89
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Are you taking brand name Concerta or a generic form? True Concerta pills should have the word "alza" printed on each pill. I've learned recently that they can have very different levels of effectiveness for some people, and if the pharmacy switched you from brand name to a generic , it can be bad news...
I started on Methylphenidate 26mg a couple months ago, and was was moved up to 36mg this month. Part of the reason we're trying the higher dose is because it was inconsistent, barely lasted a full work day and because the crash when I got home from work was way too severe. I would often go into a 3hr exhausted brain fog where I couldn't do anything much more than lay in bed on my phone or just sleep. I felt cheated since my employer was getting all my benefits and I'm losing 1-3 hours of my own time outside of work.
I ask about brand vs generic because I've leaned that most generic forms of Concerta do not use the advanced OROS delivery system that makes Concerta so effective and long lasting. The generics just pack the ingredients into an enteric coating that can often deliver the meds unevenly, in spurts or all at once, etc.
I also learned that my insurance wouldn't cover brand name Concerta unless my Dr made a special request on my behalf which had to go through an approval process. It's been quite a journey these last few months since I got my Dx.
I'm still evaluating my new dosage, but I plan to move to the brand name Concerta next month, even though it will cost 3x's as much as this generic I'm taking. I'm hoping it will be more effective. My Dr wants to try dosage adjustments before adding a booster or trying different meds. There is only one generic made by Patriot that uses the OROS technology, but recent legislation in the US has made it almost impossible to find a pharmacy that will request it....
There was a point in my 30s where I thought I might be low on iron based on my fatigue, and started taking iron supplements. I thought they were helping until I spoke to a doctor and he told me that iron is recycled in the blood, and that unless I'm regularly losing blood or have Anemia, it is rare for men to be low on iron, and that having too much is dangerous. So, I stopped taking the supplements. I think the Vitamin B supplements helped the most back then.
The things I've tried that are most effective at minimizing side effects and reduce the severity of the "dips" during the day are as follows:
* Good sleep hygiene and enough sleep
*Having a morning routine and a bedtime routine
* Eating a protein forward breakfast or snack about half hour before taking meds
*Protein snacks throughout the day, esp since I often skip meals
* Taking Vitamin D , Vitamin B coenzyme complex and high dose of EPA fish oil in the morning
* Avoiding acidic food and drink as well as ascorbic acid (most forms of Vitamin C) while medicated. I've read these can reduce ADHD meds effectiveness and operating window, so I take my whole-food multi vitamin in the evening
* Staying well hydrated during the day
*Reducing my caffeine intake (now high doses actually make me insanely sleepy since becoming medicated, but small doses seem to synergize with my current meds and dosage)
* Taking Magnesium Gylcinate with my multi vitamin at night
I'm only moderately active these days, but I'm sure that regular exercise routine - getting the heart rate up a few times a week - would help.
If I don't maintain the above, I'll notice the side effects more, especially if I don't eat or sleep well. Even before I was diagnosed, I noticed how much better I felt eating high protein foods and supplementing with Vit D, B, Fish Oil, and certain amino acids. I didn't realize I was basically self medicating my undiagnosed ADHD. lol.
I agree. There can be a big difference between brand and generic medications. There can also be a difference between generics. Unfortunately, most doctors believe the lies from the pharmaceutical companies and others that there is little to no difference. So they do not think about that possibility. In addition, insurance companies often fight covering brands due to cost.
Your post and the replies were very interesting to me since I am in the U.S. and am unfamiliar with your health system. I can however identify with your medication issues. Twice in the past 6 months my doctors have advised me to increase doses of my meds. Since I am retired if I was too groggy from trying to increase it in the mornings then I would try to increase it at night or visa versa. Neither way worked for me and I've always gone back to my original dosage. Don't know if it was my metabolism or the meds. I have taken methylphenidate under different brand names and began noticing it seemed to have no effect on my concentration difficulties so I stopped taking it altogether--I was fatigued either way. Wishing you the best on getting your meds straightened out. I understand your frustration.
Andrew, I also live in the UK. Saw a psychiatrist privately, now on Lisdexamfetamine and Venlafaxine, the latter for my longstanding episodic - ?a bit chronic as I get older - anxiety and depression. There is a lot to be said about the combination. Anyway, works for me. And once the drugs work it's the point at which to start thinking about talking therapy. If it's your thing. Until then regular counselling or things like this forum or self-help books.
I have the approach with improving my resilience by trying to spend my time as much as possible with positive events, socials definitely included. But I know I couldn't do that when I was anxious and/or depressed and off the antidepressants. I also don't want to try to come off them ever again. Unless I have rewired my brain successfully and have a lot of other support. However, currently I feel still too sensitive or vulnerable. Why rock the boat?
This is just my experience but I believe we get born some way or other, we can't change the past and we may in this life not manage other than on meds. Some of us. I.
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