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Post by timmadsocks32 on Sept 20, 2016 19:19:30 GMT
Hi all,
First of all I'm new to this forum so I'll introduce myself, my name is Tim, I'm 32 and from Liverpool.
I've been ADHD since I was 16, been diganosed and tried a few different medications....
My story...
After not taking tablets for 3 or 4 years I recently got diganosed ADHD again by my specialist, when I arrived she didn't ask much, just asked what if had previously and gave me some medication to take in the morning to try and go see her again in a few months.
2 months later I've rung up and she's telling me the medication is wrong, I've been taking the wrong tablets that she didn't prescripe and also been taking 6 in the morning and you are only supposed to take 2 to Start! She didn't tell me this either
So I've been taking 30mg a day when I should have been taking 10mg and also been on the wrong tablets!
What do I do? Complain? Who to? I'm so angry it's unreal, don't know what to do or who to ask!
Any help is appreciated 😃
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Post by vagueandrandom on Sept 20, 2016 23:11:27 GMT
Hiya Tim timmadsocks32. .welcome to the forum It sounds like you've been prescribed/taken 5mg methylphenidate IR (Ritalin or generic) 30mg. You've been taking it all in one go instead of 10mg three times a day. . I'm not sure how it could be the wrong medication unless your consultant meant to prescribe the one a day version of methylphenidate (Concerta XL and other generics) but a starting dose would be 18 or 36mg (36mg is equivalent to 30mg IR) The important thing is does it help? 30mg in one go might be a reasonable amount for an average size 32 year old man, except with IR mph you should really take it 3 times a day as it only lasts up to 4 hours. Can you talk to your specialist to clarify?
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Post by timmadsocks32 on Sept 21, 2016 6:58:47 GMT
Hi,
Thanks for your reply...
I don't think I explained very well.
When I went to see my specialist she advised for me to take my tablets in the morning, dexamfetamine.
I've been taking dexamfetamine 30mg all in the morning since late August, had really bad side effects at the start, bad sweating, dry mouth, really bad shakes etc, but over time I feel like they are working but wearing off around 2pm.
I can't get to see my specialist until November so when I rung last week I explained I'd like to increase my dose as there wearing off, to which she's advised me I'm on the wrongn medication, I should be on list dexamfetamine, and also you can't take 30mg a day and you can't take it all in the mornings!
I've done a bit of research and if you go onto dexamfetamine it advises you should only take 10mg to start with for 3 months! So why have I been told 30mg? And all in the morning?
I know it's dramatic but I feel like I could have overdosed on these tablets as I was misadvisdd and don't know where to turn too???
Thanks for your help
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Post by vagueandrandom on Sept 21, 2016 9:25:14 GMT
Hi timmadsocks32dexamfetamine is short-acting and instant release, like Ritalin, so you should still have been recommended to take them at intervals throughout the day. . .I'm presuming that instructions were to take 30mg a day in total? . . or maybe 10mg? . . sorry, it's still a bit unclear. . if you have 5mg tablets. . it may have been 5mg twice a day. . Meds come in different doses so that you shouldn't have to be taking 6 at a time. I would have been worried if I came home with my prescription to find out I needed to take loads of small ones, rather than one at the specified dose. Lisdexamfetamine (Elvanse) is the one a day version and can last up to 14 hours and comes in a 30mg tablet. I've just started on 30mg elvanse and I notice very little effect, which I presume is because it's the smallest tablet available and I've just started. The good thing is that I have had no side-effects, which I did have with mph. I know someone who takes a total of 40mg a day dex IR in 3 doses. . .20mg then 10mg then another 10mg. I'm not surprised that you got side-effects taking 30mg in one go. . it's a large amount to start on. You're right to be angry as a lot of doctors won't even prescribe dex because it can be misused/abused and it can affect your heart. This is why Elvanse is more popular as it is inert in it's tablet form and is converted to dex during digestion/metabolism. . and you only need to take it once a day, so don't have to remember to take tablets throughout the day. Who got it wrong?. . was it the specialist, who presumably meant to prescribe 30mg Elvanse. . or the pharmacy. . .what dosage instructions are written on the sticker on the packet? If you want to make an official complaint, it might be easier to do through Healthwatch. . this is the Liverpool site linkI'm in the process of making a complaint to my CCG and Healthwatch put me in contact with an advocacy service who have been brilliant about explaining things and making my case. Where have you been left now, meds-wise? Are you still being prescribed 5mg dex tablets? If so, has your specialist suggested something like taking 10mg twice a day? Or did they do you a prescription for 30mg Elvanse? You obviously shouldn't just stop.
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Post by timmadsocks32 on Sept 21, 2016 9:43:42 GMT
Hi,
Here's the full story, this might help you help me make a decision..
In the past 10 years I've taken various forms of ADHD medication, Ritalin, concerta etc, none of which worked.
After not taking any medication for years I went back to my doctors for a referral again and see a specialist over in Liverpool.
Specialist decided yes you've still got ADHD and to try something new as all previous medication had given me bad side effects.
She advised me to take a new tablet and would send over a fax to my doctors so I could pick up a prescription.
This was all in August...
So I pick up the prescription and its dexamfetamine, says to take 6 daily, as the specialist said take in the morning I started taking 6 tablets 30mg of dexamfetamine a day.
The side effects were horrific, bad sweating, felt ill, dry mouth, shaking, paranoid all this whist I was in work.
I carried on taking them as my girlfriend said you'll get used to the side effects, 8 weeks later still on 6 tablets 30mg a day the side effect have worn down apart from the sweating really bad.
I've lost over a stone in weight, not really hungry, I feel like I'm on cocaine in a morning and talk loads, but at the same time can concentrate a little more, problem being it wares off around 2pm id say.
So last week I ring up the specialist and tell her these are waring off, and I'm not seeing her till 3rd November can I increase? She tells me I'm on the wrong tablets, I should be given listdexamfetamine, it's last 12 hours.
So last night I rung her back and she was very rude and said I shouldn't be taking 30mg a day all at once, I've actually found out when you start on dexamfetamine you should start on 10mg!!
Been my doctors this morning and it's them that have messed up! The fax says listdexamfetamine 30mg once a day! The doctors obviously just thought it was the same as dexamfetamine!
So what do I do now? This morning I took 20mg of dexamfetamine and going to take 10mg at lunch, but I've ordered the listdexamfetamine from doctors today.
Can't get hold of specialist till Friday now to ask if I should swap but so annoyed I've been on the wrong medication for 2 months and surely I could have suffered serious problems taking 30mg in one go on wrong tablets? I could have overdosed ?
Please HELP!!
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Post by vagueandrandom on Sept 21, 2016 10:21:17 GMT
OK. . . timmadsocks32 I don't know how I can help, but I can try to give you some advice. You've discovered that it was your GPs fault for misreading the specialists fax. . they would also have been responsible for the dosing instructions of 30mg in the morning, which is fine if it's lisdexamfetamine 30mg (Elvanse) which is what your specialist prescribed. Your Dr or the pharmacist should have questioned this as it's a new medication for you and an unusual dosage for an IR tablet designed to be taken 2 or 3 times daily as it should last around 4 hours. . Your complaint should be with your GP. You're right, it was potentially very dangerous to start on such a high dose. I'm surprised that you stuck with it so long. . I would have gone into a chemist and asked the pharmacist. . .they should know that it's an unusual dose and I'm surprised that they gave it to you without question. . Doctors and pharmacists are are very wary about prescribing dex. . and it's a controlled drug, so they should have explained how to take it when you picked it up. I think that you're being very sensible to continue with the dex taken in smaller doses throughout the day. When you get the Elvanse 30mg you will probably not notice any improvement in your ADHD symptoms, particularly as your body's got used to a much higher dose. Stick with it until you see your specialist again. If you have no side-effects and you did have improvement when on the wrong dose. . you will probably increase the dose of Elvanse until you find a good therapeutic level. I don't know what you can do except complain to your GP. You could ask your specialist to write to them to point out how dangerous their mistake might have been. A lesson for you, is to ask questions about any new meds with the pharmacist (they're much easier to get to see than a GP or Dr) particularly if you're getting bad side effects, or are unsure when to take them. Most meds are prescribed in a tablet size so that you should never have to take more than a couple to make up the total dose. This should also have flagged questions with the pharmacist, so I would consider them to have been negligent in not questioning the prescription. GPs can't be expected to know about every single specialist medication, but a pharmacist is a specialist in medication and often knows more than a Dr. I'm sorry you've had this happen to you, but hope that things will improve in the future.
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Post by timmadsocks32 on Sept 21, 2016 11:12:05 GMT
Thank you for your help.
I'm going to put a complaint in about my GP for giving me the wrong medication and enquirer about a claim for medical negligence too
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Post by VikingMermaid on Sept 22, 2016 0:32:27 GMT
I'd be less concerned about putting in a claim for medical negligence*, and more about making sure you're being prescribed what was intended, know how to take it, and know at what point you should be questioning side effects.
I'd be more concerned that whoever created the initial error in you receiving was made aware of this, and procedures checked/improved to ensure the same can no longer happen.
There's an NHS patients charter that would, no doubt, be worth you reading beforehand. Alternatively, go to your local CAB.
WORKING AGAINST YOU - *there's little to indicate you've experienced side effects above and beyond what many experience on dex - *if your side effects had been 'horrific' any court would expect you to have sought advice far earlier, rather than continue taking the dex for two months - I would disagree that 30mg per day of dex is overly high, given your re-referral/re-diagnosis. I was started on 40mg per day (20mg x twice daily), went up to 50mg two days later, and then on 60mg (top dose) two days after that. For the record, that's 6x5mg tablets each morning, and another half-a-dozen at lunchtime.
WORKING IN YOUR FAVOUR - I'm surprised your specialist didn't look to monitor you far more closely while she was titrating your dosage, especially given your record of bad side effects. My prescribing nurse wanted to see my every week (every fortnight after i asked to leave a longer gap to monitor efficacy, before upping dosage again). This enabled him to monitor my BP each time (v important when titrating stimulants).
Good luck - and hope you get the dosage appropriate to YOU, up and running again!
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Post by VikingMermaid on Sept 22, 2016 0:33:35 GMT
I'd be less concerned about putting in a claim for medical negligence*, and more about making sure you're being prescribed what was intended, know how to take it, and know at what point you should be questioning side effects.
I'd be more concerned that whoever created the initial error in you receiving was made aware of this, and procedures checked/improved to ensure the same can no longer happen.
There's an NHS patients charter that would, no doubt, be worth you reading beforehand. Alternatively, go to your local CAB.
WORKING AGAINST YOU - *there's little to indicate you've experienced side effects above and beyond what many experience on dex - *if your side effects had been 'horrific' any court would expect you to have sought advice far earlier, rather than continue taking the dex for two months - I would disagree that 30mg per day of dex is overly high, given your re-referral/re-diagnosis. I was started on 40mg per day (20mg x twice daily), went up to 50mg two days later, and then on 60mg (top dose) two days after that. For the record, that's 6x5mg tablets each morning, and another half-a-dozen at lunchtime.
WORKING IN YOUR FAVOUR - I'm surprised your specialist didn't look to monitor you far more closely while she was titrating your dosage, especially given your record of bad side effects. My prescribing nurse wanted to see my every week (every fortnight after i asked to leave a longer gap to monitor efficacy, before upping dosage again). This enabled him to monitor my BP each time (v important when titrating stimulants).
Good luck - and hope you get the dosage appropriate to YOU, up and running again!
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Post by vagueandrandom on Sept 22, 2016 9:57:35 GMT
Good points VikingMermaid Particularly about dex dosage, as I don't have any personal experience. My thoughts exactly.
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neonzz
Member's not posted much yet
Posts: 11
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Post by neonzz on Sept 23, 2016 16:46:36 GMT
Right so have you been taking 6 30mg tablets or 6 adding up to 30mg I can assurew you that if they added up to 30mg then your all good I take 50mg Lisdexamfetamine daily the max dosage according to the leflet is 80mg/d although I belive that a 50mg tablet is equivilant to 14.6mg dexamfetamine from what I can find on the google that 30mg sould translate (roughly) into 100mg/d(lisdexamfetamine) considering your an adult and these medications are ment for adolesance I assume you are average weight and hight for your age would mean that what you have taken shouldn't be an od so don't worry about that but your doctor needs a serious talking to perscribing the wrong medication and I assume information on how to take said medications he couyld of killed you simple as you should sue the c*** anywhom your side effects seem quite serious maybe you would be better off going to Elvanse (Lisdexamfetamine) I find effective for 12-14 hours depending on the day and what I consume and hay each day is different but I was moved to Elvanse after immidiate dispersal Methyphenidate cause some weird side effects and wasn't wortking 100% and my phyciatrist said to me she's perscribed it to quite a few pataints and noone has had any adverse reaction to it when they did on the immidate veriation (dexamfetamine) and both forms of Methylphenidate and if the Elvanse doesn't work well your next best bet dispitethe fact that they have a extensive history of side effects Adderall (Dexroamfetamine)
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Post by marionk on Sept 26, 2016 22:51:47 GMT
The difference between dex- and lisdex- is pretty subtle and they are both appropriate for ADHD.
Lisdex- is actually converted to dex- in the body, and it is as dex that it has its effect. The idea is that as the lisdex- is gradually converted into dex-, it won't cause some of the potential problems of straight dex-
For some people dex is the only one that works, and many of us can't even get to try it.
Many people on here have been prescribed and taken completely inappropriate medications, some with serious and long lasting ill effects, due to misdiagnosis.
Your side effects are pretty typical, and it's a matter of weighing up how much they affect you against how much benefit you get from the medication, to decide whether or not it's worth taking them long term.
In your case, from your emotional reaction to the situation, it seems they don't help much at all.
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