Just started Elvanse: Hello, I've... - CHADD's Adult ADH...

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Just started Elvanse

Rhsana profile image
8 Replies

Hello,

I've recently been diagnosed with ADHD combined type at 41.

They have started me on 30mg of Elvanse and I have been quite disconcerted by the way it makes me feel.

I also have hypothyroidism, PCOS, and Lupus and take;

Armour Thyroid

Hydroxychloroquine

Metformin

LDN

I have been informed that there shouldn't be any issues taking Elvanse with all of the above, but the first few days of taking it I have had a lot of uncomfortable sensations making me feel like I really am not wanting to keep taking it to find the 'sweet spot'. I renders me pretty useless which is the opposite of what it should be doing. I am waiting to hear back from doc as to whether I am on too high or too low a dose.

Has anyone else had a hard start on their Elvanse journey and did they ever find the sweet spot?

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Rhsana profile image
Rhsana
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8 Replies
IDOSTUFFNOW profile image
IDOSTUFFNOW

Hi there Rhsana, I haven’t heard of Elvanse but that’s okay because they’re always coming out with new meds for everything. Is it a stimulant like Adderall? I’m going to look it up actually to see what it is exactly to see how I can help you. I can tell you that most mental health meds start out making people feel “weird”, and that’s usually because we are feeling the way we “should” feel and should have felt our whole lives but because of ADHD, or whatever mental illness, we are not used to feeling the way we’re supposed to, which is what the med is doing. It’s doing its job usually, but I must stress that we are not used to feeling “normal” which is what the med is making us feel for the first time ever. So, I can easily say don’t give up and stop the med, but I’m not the one going through what you are right now. I have been on mental health meds, especially for ADHD, and have felt insane at first. And for the same reason I’m telling you. I wasn’t used to feeling “clear” headed. The ADHD meds make me feel clear and I use the analogy it’s like being mostly blind all your life and not knowing, then finally an eye doctor puts a pair of prescription glasses on you that make you see for the first time, and it’s like you have a new pair of eyes. I’ve experienced that too, and I equate it to what ADHD meds do for me, and my son. And so many people. I am on the generic form of Adderall. I’ve tried a couple others and Adderall works the best for me. I’ve tried Vyvanse, Concerta, and Strattera. Strattera is non-stimulant, and it was the only one for a long time. I think there is at least one more non-stimulant ADHD med now. There could be more but I’m not sure. Anyway, keep reaching out every day if you need. ADHD is hard to deal with and so can the meds be in the beginning. Good for you for reaching out!! Keep coming!!

Antenne profile image
Antenne in reply to IDOSTUFFNOW

Elvanse is the UK name for Vyanse

Serendipitious profile image
Serendipitious

Hi Rhsana,

I remember you from the Thyroid UK forum. I’ve also been recently diagnosed with ADHD. However I’ve been given bupropion. Been on it a month now. No real difference so far.

Oddbob1 profile image
Oddbob1

similar here, although when given the choice of stimulants, I chose concerta xl over vyvanse/elvanse.(concerta = methylphenidate, vyvanse = dextrmetamphetamine).

I think ur on the lowest starting dose.

With Concerta I started at 18mg, and it went up in steps of 8mg, until I reached 36mg, then it went to 54mg, where I am now.

At the lower doses I was ok, but became anxious in the evening(was wearing off), but at 54mg I don’t get that any more.

Like u I had strange effects.

I have combined ADHD apparently.

I was expecting to be bouncing off the walls, when in fact it had the opposite effect, and made me tired. Yawning a lot etc.

However at 54mg I don’t get that, I just feel ‘normal’ I guess. By normal I mean, I don’t have racing thoughts, anxiety, depression, lack of concentration and focus etc.

I still don’t believe I have ADHD, I’ve seen this referred to as ‘imposter syndrome’, but at each review when I inform my specialist about my previous month on meds, the effects and my general mood, he seems to be happy with what I say, and I guess, I do feel happier and little to no anxiety. I do have some trouble sleeping if I take it after 10am.

I know the above doesn’t really help you, but perhaps you could switch to Concerta seeing as u are only just starting medication, and switching wouldn’t be an issue.

U might find the non amphetamine stimulant more fitting.

Alexandra57 profile image
Alexandra57

hi Rhsana, I started on Elvanse just over a month ago (also recently diagnosed at grand old age of 57). The first few days I felt like I’d been almost sedated. Wasn’t such an unpleasant feeling but definitely unexpected. I soon realised that this was my brain finally being able to relax and i was actually calm for the first time like ever, but it was a weird sensation for sure. The amazing thing was that even though I felt ‘weird’ I was able to go to my desk and work without distraction for literally hours at a time. A absolute miracle for me!

Now, I find that if I don’t have something to focus on I can tend to feel a little sleepy (went up to 70mg before dropping back down to 50mg). But the ‘sedated’ feeling wore off after a week or so. Hope this helps.

Mamamichl profile image
Mamamichl

hi early, never heard of Elvanse. Is it a stimulant? I’m on thyroid medication as well. Levothyroxine. My methylphenidate for adhd doesn’t affect my thyroid medication as long as I’m taking them the right way (levo an hour before food, and adhd when I eat). I have noticed that when I take my adhd med it seems to help my anxiety med so that I don't brood. It’s like I can pay attention to the right things. What exactly are you feeling, since I’m confused by your wording. Please elaborate.

When I was on too low of a dose, I didn’t feel anything. My brother described that when his dose was too high, he would feel like a zombie.

Blue_186281_red profile image
Blue_186281_red

I'd like to start with a bit of public advocacy: F copy-written drugs & take anything you read other than primary research with an fist sized rock of salt. (This also goes for "ADDitude Magazine was acquired by WebMD on May 26, 2021." - crunchbase.com/organization...

From Wikipedia: "Elvanse (Lisdexamfetamine) is an inactive prodrug that works after being converted by KDM1A into dextroamphetamine." In other words, you can get a $10 bottle of dexadrine and it is the same effect as a $350 bottle of Elvanse, just with faster, shorter effect.

My MD offered me this but I declined (re: my 1st paragraph) There are two main arguments I hear for this med:

1) Slow onset and longer effect. This may be a down side for you if you're having unpleasant s/e. The desired length of effacacy depends on your personal preference & biology. amphetamines make me more left brained and short tempered so I don't want meds to last through my kid's bed time - I have enough reason to get frusterated at that time without drugs aggravating me! Don't let the MD tell you what you need w/out questioning it. The slow onset means if you wake just before work or forget to take then you will be SOL for a couple hours of AM work.

2) I think this is supposed to follow from #1 - lower addiction risk. I think this is 100% a BS sales gimmick for parents - the main target of ADHD advertising. Anyone who hung out behind the High school cafeteria since 1990 can tell you nobody's looking to buy quantities of Rx amphetamines. But for this tiny sub-culture of addicts, I don't see why waiting 2 hours to get high is any worse than sitting in a parking lot for 2 hours waiting for a flaky drug dealer. Of course, this problem only applies to about the 10% of the population with the genetic disorder of "alcoholism" or "addiction" or whatever word your politics chooses to apply - I prefer alcoholism as the disorder was 1st clearly described in the book Alcoholic Anonymous. Of note, ADHD is highly correlated with alcoholism. but as a 41 year old I think you know if this is relevant to you. As for physical addiction: Your body body will react to this as an amphetamine and your tolerance to amphetamines with go up, necessitating higher doses to attain the same effect, and withdrawal symptoms when you quit. This inevitable, it is "addiction", but it is NOT Trainspotting.

As for your other diagnoses & drugs I would google "drugs interaction checker" I have only used a couple professional subscription versions, so can't recommend anything specific. You really need to do your own research if you find anything - you'll probably just get flags that don't tell you much. I've never had much luck online with this sort of research & would recommend going to a university library since most primary sources are hidden behind paywalls costing $1,000's.

You should be aware that there are basically 2 choices of drug - stimulant and non-stimulant. The latter is more diverse (and I don't know much about it), but the stimulant class, practically, has A LOT of overlap. most of them are just repackaging less sophisticated than Elvanse. ADDitude magizine has a very extensive article summarizing ~30 stimulants, and they are ALL based on old old old non-generic drugs with a marketing twist. If you're a conspiracy theorist type, go read the article, it's source material, & the authors' bio; keep in mind the fact they are only discussing 2 active ingredients - you'll see why I thought it necessary to google ADDitude's financials.

ADHDuderino profile image
ADHDuderino

Hi Rhsana, welcome to the group!😀 Sharing my experience so far, I was diagnosed about a year ago at 46 yoa. Lifechanging isnt it? Suddenly my life made sooo much more sense! Anyway, regarding Elvanse, I found I started with 35mg O.D. It seemed to give me a slight pep. but overall I nust felt really tired! I was upped to 50mg O.D., which made a much bigger change for my mornings for a while, but then the PM slump was pretty significant! So after a year I upped to 70mg O.D. which means I am "better" (I can actually get stuff done all day!) for longer than most of the working day which means benefits are at home as well, which is great.

There are a few issues with it, weight loss was initially quite significant but is now very stable, appetite suppression was significant at first but again is now stable, since switching up to 70mg, I have a more disturbed sleep pattern, but actually, that means I am not as knakered all the time (Ironically🤔). And emotionally far more regulated and mentally "well" overall.

That said, watch out for the cardiac side effects!!🫀🧐❗(palpatations/racing heart rate/anxiety/chest discomort etc.) as looking at your meds profile you are on Thyroid meds. (Side effects include rapid pulse, profuse sweating, heat sensitivity, anxiety, chest pain, heart palpitations) Because the point of Armour Thyroxin is to replace a lack of Thyroid hormones, it increases your global metabolic rate and therefore increases the "rate" of cellular function (and so also organ function). As Hypothyroidism is complex and has a multi-organ/multi-system influence, I would reccomend getting a medical consult to make sure you are not increasing your cardio-vascular risks. Although I am the only person I know who can take a big dose of lysdexmethamphetamine for breakfast, and then fall asleep on the train to work (🤣) I am concious that you need to monitor your cardiac health when on Thyroid supplimentation and also Elvanse/stimulants. (During university traininh, a lecturer once told us that historically, Naughty Nurses and docs. Would raid the Thyroxin stock on the drug trolley to aid weight loss and dieting as it speeds everything up without having to excercise more😱🙄😵‍💫 However, it was a tereible idea because the naive eejuts then ended up overdosing, getting anxiety attacks, aggressive outbursts and in some cases blood pressure, stroke and heart problems!!😬)This could be why you are feeling a bit ruff? Best check it out!

Overall, no ine medication works for all so just make sure you are being looked after by your medics and psychs. Maybe you need a Non-stimulant? Worth an ask.

Take care!

If you can do nothing else in life, be kind

🌈🐒🦄

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