Reaction to XR after taking a few years!?

[Kiddos1138]

Here’s the history:

Early 2011 I finally take the plunge and get a diagnosis (boy that explained a lot…). I was cautious and – I can see now – still thought it was “just me”, so I started on 5 mg of Adderall XR. Wow.

Verrrry slowly, after finding a great support team of a counselor and psychiatrist, I had inched my way up to 20 mg (10 early morning, 10 later morning so that my brain would be controllable at bedtime). I was amazed at the difference and was considering inching up more.

Cut to November 2013. Insurance says I have to do generic. OK, fine. Discovered that I am nasty, mean, irritable and aggressive on generic. Insert a month of trying to work with insurance. (A whooooole other post.) I *finally* can take the (much pricier) regular stuff, about 2 months after I had stopped.

Except I can’t take it.

For some crazy reason, taking the XR was causing MASSIVE physical anxiety. My body would be nearing a full blown anxiety attack while my poor brain (which was under control) was wondering what in the world was going on. I tried to push through but when the chest pains started, I knew I had to admit defeat.

Has anybody ever had this happen??! I’m on Concerta but miserable, it lets me control my brain a bit more, but isn’t even touching the physical part. Does that make sense? I can control my brain from spiraling out of control but when I try to tell my body to DO something, it doesn’t listen at all.

Thank you for reading all this, and I appreciate any thoughts/experiences you have!

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[MarieAngell]

I’ve definitely had different responses to generics, which often have different formulations of additives and varying amounts of the actual drug.

Was there any break between taking the generic and then going back to to the brand name?
When you began taking brand name XR again, did you take the full dose or did you titrate back up?

I don’t know if the answers to either of those questions actually make any difference, but it might.  The only time I’ve had the kind of physical response you describe is when I’ve taken too much of the drug when I was in the initial stages of trying to figure out the correct dosage for me.

In any case, Adderall is not the only drug out there. I take Focalin XR (also pricey and I don’t think there is a generic yet) and I like it and have not had a lot of problems with it since I stabilized my dosage.

 

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[jdo1984]

I think it is possible the reason you feel the generic version produces different effects is psychological.

Generic versions of brand drugs need to be proven to be both bioequivalent and therapeutically equivalent to the original medication in order to be approved by the US FDA. That means the active ingredient must be chemically identical and the active ingredient(s) need(s) to be absorbed into the bloodstream at the exact same rate and that the drug must produce the same effect as the brand-name drug.

I have been in paid clinical trials for generic drugs where they need to demonstrate bio-equivalance. They dose you and then take about 20 blood samples over 2 days – some receive the brand name drug and some take the generic trying to get FDA approval. They ensure the levels of the drug in your blood are identical between the two. They need to test this on a lot of people and spend a lot of money to prove. My point is that the FDA takes many steps to ensure the generic version is essentially identical to the brand drug.

Pharmaceutical companies that produce brand drugs have a lot to gain from widespread misconceptions about generic drugs because brand drugs are MUCH more expensive, which not everyone notices because they pay a copay for the drug rather than the full cost.

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[seabassd]

I feel for you. I had an anxiety attack when coming off  Focalin. Totally freaked me out. I had no idea what was going on. I’m also very aware of the frustration and anxiety that can accompany med and dosage changes. How much is mental and how much is created by meds, I’m not sure.  Maybe start low again and titrate up slowly. Did you have a down time between generic and non-generic? If so, then titrating up may be the answer. I do wonder if certain life issues or stressors interfere with medication or maybe the medication amplifies stressors.

Keep us updated. Let us know how you’re getting on.

Damon

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[Wgreen]

FYI—Just came across this piece on Business Insider:
http://www.businessinsider.com/effects-of-adderall-on-the-human-body-2013-6#

So what are ADDers supposed to do? Spend our lives wandering from room to room looking for keys? I can’t tolerate stimulants, but I know others who depend on them.

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[Kiddos1138]

Thanks for the replys!!

MarieAngell – there was no break between the regular and the generic, but I did start back up the regular at 10 instead of 5…. I know 10 is still “low” but maybe I should have started lower? I have started Vyvanse – expensive, and not quite as “smooth” as the Adderall, but MUCH better then the Concerta!

jdo1984 – I honestly was NOT expecting a difference when I went on the generic; I had heard some things about it but honestly, I figured I wouldn’t react. I take generic “Tylonol” and “Advil”, so I really didn’t think anything of it. In fact, I *wanted* it to work because it was so much cheaper (even before the hike in cost)!

seabassd – I was going through a bit more of a stressful time with some things, but the “funny” part is that it was helping me through… mentally! In hindsight, maybe I should have tried starting lower, or staying at the 10 a bit longer. Ah well… As I mentioned above, the Vyvanse seems to be going MUCH better then the Concerta, anyway!

Wgreen – Interesting article… but something to think about is that was written with the tilt of (it seemed to me) people abusing the drug; not diagnosed, just taking it as a boost or a help. Our body chemistry is different then a “normal” person (and really, who wants to be “normal”?!?!)and some of the other things (dry mouth/decreased appetite) are side effects that you find in any medication. It is hard trying to weigh the benefits of the side effects, though!!

THANK YOU all for helping me not feel quite so alone in this!!! And for your thoughts and ideas!

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[Patte Rosebank]

@Kiddos1138 & @Jdo1984, technically, generics are supposed to be bio-equivalent & therapeutically-equivalent to branded versions.

BUT…

That “equivalency” is actually a range of “10% less to 10% more” than the dose in the branded version.  That’s a range of 20%.  That’s not bad for most generic meds.

However, when the med is for a *mental* condition, that range is HUGE, because even the tiniest difference in dose can have a big difference in the effect it has on an individual.

Worse, if your pharmacy switches from one generic brand to another generic brand, it doesn’t even have to tell you.  So, you could go from a -10% pill to a +10% pill, and have no clue why you’re suddenly having heart pains and are climbing the walls.  Or, you could go from a +10% pill to a -10% pill and wonder why your meds have suddenly stopped working.

There’s also the issue of the different fillers, which can include lactose.  If you’re lactose-intolerant, and you end up on a generic with undeclared lactose in it, you’re going to have some very serious problems.

Concerta is a whole other issue.

Branded Concerta is defined by its unique, patented, osmotic delivery system, which delivers an immediate dose, followed by a long-slow ramping-up and fading away.  It’s that delivery system that MAKES it Concerta.

The generic version is an ordinary slow-dissolving pill, which delivers a long, steady dose.  That’s not how Concerta works, so the generic is by no means an “equivalent”.

This is such a serious issue, that Health Canada is currently studying it.

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[Geoduck]

Okay- no time to read all the posts, so I’m just responding to the first one:

OMG! YES!!! I actually did a little research and found that anxiety can develop after a few years of taking the drug. The reason I’m actually in this part of the forums is that I was looking to see if any of my TotallyADD peeps had issues like this.

I went on adderall about what, 3 years ago or so. I’ve just started developing anxiety in the past few months. I’m not really an anxiety person, outside of my PTSD moments, which are fewer as I get treatment. But every day things are starting to cause me horrible anxiety. Like talking to my boss, or husband, or hell, just getting out of bed in the morning.

My problem is that without Adderall, I’m not sure where to go. 5mg of Ritalin had me so drowsy, all I could do was sleep all day.

Guess I get to call the doc. Guess what I’ve been having anxiety about. The damned phone.

This sucks 🙁

Glad to know it’s not just me, though. Sucks that it’s you, too, but hey, at least we’re not alone.

I <3 this place.

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[Geoduck]

Oh, btw, all of these anxiety attacks are while the medication is active. I feel actually better when it wears off. Also, I’ve been taking the same generic for a long while. So that’s not new. Also, when I switch to the quick release (small bit my doctor had me keep on hand- had it around for a year or two in the cabinet), same symptoms.

Anybody know if going off of it for a while then back on helps?

About the business insider link…no mention of dosage, or the difference in how it functions in the ADD brain. Not sure about NPR and Business Insider putting up party pics attached to side effects. Seems weird and accusatory, somehow. Like we all take it just to party. I’ve never felt like partying on this drug. In fact, it kinda keeps me from being an all around ass.

Oh, it’s going to be hard if the people around me have to deal with “that” me again. Heck, I don’t want to deal with “that” me again.

Seriously, this sucks.

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[blackdog]

@Geoduck

I was on my way to bed. Then I noticed this thread. Scrolled down, read your comment about the business insider link, scrolled back up, found the link, read the article, saw comments are closed on the article, clicked the author’s name, found her email…..

And she has been told that her article is insulting to those who take Adderall for legitimate medical reasons. Along with a few other things I thought she ought to know.

So thanks to you I have now lost another half hour of sleep. 😛

I think you should definitely get in to see your doctor ASAP. That is some serious anxiety you have there. If the phone is a problem, ask your husband to make the call for you if you can. Maybe even have him go with you to the appointment, just for a little extra reassurance.

I wish you luck. I am definitely maybe going to bed now. 🙂

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[Geoduck]

LOL! Thanks, Blackdog! For both the kind words of support and for coming to the defense of ADHDers everywhere who use Adderall.

I did see my doc. We have decided to see what happens without Adderall, or any other meds. His non-ritalin suggestion was Straterra, which is also an anti-depressant. My last experience with anti-depressants didn’t go so well, and I just don’t want to go there. He’s being extremely patient with me, and agreed to see how things go unmedicated, for now. I have another appointment next week.

I enjoy being back on the bean. Oh, how I missed coffee. So much fun. However, for all the bad rap Adderall gets, I have less tolerance to coffee and really can only do about a cup or two a day. My heart doesn’t like it as much as my brain does.

I’m getting along a lot better than I thought I would. Emails are a mess, but those were on meds, too. Really, I only see a difference with my motor mouth. I’ve started finishing other people’s sentences again, and interrupting. Oh, then there’s the jumping to conclusions thing. I’m told that’s a smart people thing, too. I’m going to pretend it’s all because of genius, and not ADHD. Okay, it’s ADHD. I know.

Other than that, I’ve got tools and strategies going in my life to help out. Summer is coming, which helps greatly. I may have to back off of a few activities, but am waiting to see, so as not to dump stuff impulsively- I’m trying to be cautious here.

Really, coming off the adderall was fine. No withdrawal symptoms and the anxiety seems to have disappeared. So far, so good.

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[blackdog]

@Geoduck

That is great news. Going medication free for awhile sounds like a good idea. Get back to being who you are, in your natural state, then you can reevaluate.

I haven’t given up coffee. In fact, since starting the Vyvanse, I think I actually drink more. But I can’t drink more than 3 or 4 cups a day, less if it’s strong. I don’t know how my heart feels about it, but my stomach is not a fan.

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[Geoduck]

I was told I could drink up to 2  cups a day on adderall. However, more than one would send me over the edge. I found I didn’t crave it anymore, anyway. Guess the adderall was doing it’s job. I’m only up to one to two cups a day- usually one, now. Really, aside from the jitters, it’s working alright for now.

Yes. A break is nice. One less pill to remember is one less pain, I guess. It was working so well, though. Really, it was easier than coffee. I really hate remembering to make a cup in the morning. LOL!

 

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[Geoduck]

Okay, update…

Went back on Adderall. Turns out the anxiety was a whole new symptom of my horrid migraine auras. I’ve been getting them every night for about 2 months. Includes all sorts of fun things like vertigo, light and sound sensitivity, anxiety, and soul crushing depression. I had no idea that migraines could have mental symptoms like that. Crazy.

Went to a neurologist today, though, who is prescribing something that should work for both migraines and ADHD- somehow related- I dunno, I was having a dang aura and wasn’t paying attention. Hubby was there though. He says it made sense.

Anyhoo- going off the Adderall and onto this other stuff- Venlafaxine. Wish me luck! Off to the forums to find the Venlafaxine thread!

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[Patte Rosebank]

@Geoduck, I’ve read that headaches (including migraines) are a common side-effect of Adderall, especially after you’ve been taking it for a while.

Hmmm…

 

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