Hi there - Ali's mum here
Just a quick question about Lyrica and side effects
Alison is now on day 7 of Lyrica (she has one week at 50mg twice daily then this steps up to 75mg twice daily)
Whilst I am aware that RSD can cause mood swings and depression, I'm not sure whether its my imagination but it seems that her mood swings have got worse since she started on this medication
We had to go into hospital for therapy yeaterday and the night before we had major problems cos Alison point blank refused to go and began to get very emotional about her illness (about 30 monutes after taking the Lyrica)
By the following morning things had settled down and she was happy to go. but last night the same problems arose - one minute she was OK and then shortly after taking Lyrica again she was back in the opposite mood which lifts about mid morning (about 3 hours after the morning Lyrica tablet)
I know that Lyrica has not been tested on children and wondered if anyone could advise me on their experiences with using the drug for adolescent and pre-adolescent children and any recommended dosages
Alison is only 12 but is the height, frame and weight of a 15 year old so I do wonder if she is being dosed according to weight but as a 12 year old is not emotionally mature enough to cope with that dosage (Hence the previous vision problems with amitriptyline which resulted in the fall and spread of RSD to her arm)
My other worry is the possibility of long term effects stemming from the use of drugs which are not registered for use in children. Hopefully Alison will recover soon but how will exposure to such strong medication effect her in the future.
Any thoughts or advice would be most welcome, especially about whether the side effects will pass
Thanks
Andrea (Ali's mum)

Adverse Reactions Most Commonly Leading to Discontinuation in All Premarketing Controlled Clinical Studies
In premarketing controlled trials of all populations combined, 14% of patients treated with LYRICA and 7% of patients treated with placebo discontinued prematurely due to adverse reactions. In the LYRICA treatment group, the adverse reactions most frequently leading to discontinuation were dizziness (4%) and somnolence (3%). In the placebo group, 1% of patients withdrew due to dizziness and < 1% withdrew due to somnolence. Other adverse reactions that led to discontinuation from controlled trials more frequently in the LYRICA group compared to the placebo group were ataxia, confusion, asthenia, thinking abnormal, blurred vision, incoordination, and peripheral edema (1% each).

Most Common Adverse Reactions in All Premarketing Controlled Clinical Studies
In premarketing controlled trials of all patient populations combined, dizziness, somnolence, dry mouth, edema, blurred vision, weight gain, and "thinking abnormal" (primarily difficulty with concentration/attention) were more commonly reported by subjects treated with LYRICA than by subjects treated with placebo (≥ 5% and twice the rate of that seen in placebo).

Controlled Studies with Neuropathic Pain Associated with Diabetic Peripheral Neuropathy

Adverse Reactions Leading to Discontinuation
In clinical trials in patients with neuropathic pain associated with diabetic peripheral neuropathy, 9% of patients treated with LYRICA and 4% of patients treated with placebo discontinued prematurely due to adverse reactions. In the LYRICA treatment group, the most common reasons for discontinuation due to adverse reactions were dizziness (3%) and somnolence (2%). In comparison, < 1% of placebo patients withdrew due to dizziness and somnolence. Other reasons for discontinuation from the trials, occurring with greater frequency in the LYRICA group than in the placebo group, were asthenia, confusion, and peripheral edema. Each of these events led to withdrawal in approximately 1% of patients.

Most Common Adverse Reactions
Table 2 lists all adverse reactions, regardless of causality, occurring in ≥ 1% of patients with neuropathic pain associated with diabetic neuropathy in the combined LYRICA group for which the incidence was greater in this combined LYRICA group than in the placebo group. A majority of pregabalin-treated patients in clinical studies had adverse reactions with a maximum intensity of "mild" or "moderate".


†Thinking abnormal primarily consists of events related to difficulty withconcentration/attention but also includes events related to cognitionandlanguage problems and slowed thinking.
‡ Investigator term; summary level term is amblyopia


Controlled Studies in Postherpetic Neuralgia

Adverse Reactions Leading to Discontinuation
In clinical trials in patients with postherpetic neuralgia, 14% of patients treated with LYRICA and 7% of patients treated with placebo discontinued prematurely due to adverse reactions. In the LYRICA treatment group, the most common reasons for discontinuation due to adverse reactions were dizziness (4%) and somnolence (3%). In comparison, less than 1% of placebo patients withdrew due to dizziness and somnolence. Other reasons for discontinuation from the trials, occurring in greater frequency in the LYRICA group than in the placebo group, were confusion (2%), as well as peripheral edema, asthenia, ataxia, and abnormal gait (1% each).

Good Morning Andrea,

I am currently on Lyrica, but I don't know of issues with children. I'm sorry.

I was also on neurontin - which I think was better for me. I'm switching back in a few weeks...

Joan gave you an article with specific information on Lyrica and children that might help.

I know I can't help, but know that I'm thinking of you and Alison.

Beth.

Hi Andrea,

I hope you’re not so upset with me about my remarks regarding Ali’s physician that you will simply reject anything I have to say out of hand. I’ve been called blunt and uncompromising and don’t totally reject those characterizations, but I think I would have tempered my words a little had I known of this relationship: I try not to be willfully hurtful.

I am very vigilant against intimations that personality has anything to do with such a clearly physiological disorder as they open the door to a blame the patient attitude, and shift the focus from treating the disease to fixing the patient. Additionally, we tend to blame ourselves for a mistake that led to this disease, and some will withdraw even further if they think their personality has any portion in this.

Anyway, you wrote: My other worry is the possibility of long term effects stemming from the use of drugs which are not registered for use in children. I honestly don’t know enough about Lyrica to talk about why that might be, but Lyrica is just the latest in a series of medications used to treat seizure disorders, and its predecessors have been commonly used with children, so unless there is something specifically known or suspected about giving it to children, I suggest that the absence of this specific testing probably isn’t ominous.

The greatest concern about using drugs with children is that they could affect future development, and that particular danger seems quite low with Lyrica, since it’s a refinement of previous drugs that have been shown to be safe with children.

I went to Medline Plus and looked for contrasts between Lyrica and gabapentin (one of the first of this class of drugs), and found the most striking thing is that gabapentin (GP) is described as treating seizures during epilepsy while Lyrica (Ly) is intended to treat neuropathic pain; yet both appear to have the same mechanism of action: supplementing GABA that is naturally produced by the body.

In my thread Facts you may not know about RSD, I talk about what natural and artificial GABAs do and how they modulate the sort of burning pain and allodynia we suffer. Few, if any chemicals work as well as their natural counterparts, and all have side-effects. This is amplified in the use of GABAs to modulate pain, since they body is already producing enough of them. They just aren’t being adequately delivered where they’re needed in the case of neuropathic pain.

This means that the brain is getting too much GABA when we take these drugs, and they dramatically slow the brain down; leading to physical, cognitive and emotional disturbances. Fortunately, GABAs are neurotransmission inhibitors so they pretty much just slow the brain down, rather than act upon it in more complex ways that could affect all sorts of chemical interactions, and thus present greater potential risks.

As the father of four and grandfather of eight, as well as a former mental health professional (psychiatric social worker), I can assure you that mood swings are common among pre-adolescent and adolescent children. As a person with RSD, I know the pain, disability, and isolation imposed by this disease significantly affect our emotions. 12 year old children have few life experiences to draw upon when confronted with all of this.

GABA drugs (and their additional side-effects), could exacerbate these problems, and you are rightly concerned with this and should carefully monitor her emotional state, but if they have a significant effect on her pain and if her mood swings don’t get too extreme, I would continue with it if it were my child. You are the best judge of that.

I may disagree with her doc about the role of psychological factors in RSD, but I think it best to trust him when it comes to selecting dosages (with feedback from you and Ali, of course), rather that ask advice from others. I trust he knows when to seek advice from other professionals with possibly greater experience in treating children with this disease.

Also, medications side-effects often diminish over time, so unless they appear to be severe, I would try to be patient and wait to see how efficacious Lyrica is with your daughter.

I don’t know who makes Lyrica, but it is probably not one of my favorite pharmaceutical companies: I have no favorites, preferring to dislike all of them equally. It’s true they do produce drugs that help countless people, and that research is enormously expensive, but they are also run by price-gouging, greedy people whose primary goal is to become multi-billionaires. They seem to be very successful at that.

I share your hope that Allison will soon recover, but until that happens, pain relief is so important that other concerns (but not obvious dangers) need to be secondary considerations…Vic

As I was about to post, I noticed Joan’s reply. I think the information she offered may be useful, but only if contrasted with similar information about other drugs in this class, and the bottom line is still what it has always been: Do the benefits outweigh the risks and side-effects?

such good advice Vic as usual.
i would say that i agree with the 'what outweighs what' theory but i am always so cautious with meds. as a nurse i have the greatest of respect for these poisons. they are not part of our normal makeup and the body knows that. and i always say we have to watch for any changes that we have, and to always suspect the poisons as the problem. it is so hard to find what works for each of us. with rsd there are no easy answers. no one is the same, or reacts the same, to these meds. mood swings are normal in children, and they are normal with people in constant pain, and people who have lost a piece of their life. but i sent the info because if the swing goes too far and is too out of Ali's norm, the poisin should be considered the culprit, and doctors notified. joan

Jeez Joan,

NEVER say poison. You never know when someone might wake up, choke down a handful of pills and then switch on NT. Hell, it just happened.

My brain read that aloud, my stomach heard it, said "DAMN RIGHT", and gave serious consideration to doing what stomachs do when poison is involved. It finally decided "The Hell with him, if he wants to die, let him"...but it was touch and go for a couple of minutes.

And I dismissed your post too quickly: I have seen Andrea's concern for Ali in other posts and assumed (probably correctly), that she'd already shared her concerns with the doc; then came here for more information (and support) from one group of people she knew she could count on.

I'm pretty sure everyone here asks "why me?", because it really isn't fair to see the rest of the world live "normal" lives while we go through this. I'm even more certain that when we enounter people like Ali and Vanessa, we tell ourselves: "If it had to be someone in my family, I'm glad it was me". I would rather go through what I'm going through than what Andrea is going through.

RSD stinks...Vic

Vicc,
Thanks for your response
Sorry about how the response regarding Alisons Consultant sounded - I think you caught me on a bad day and the very thought that the person who was treating my daughter may be wrong scared the life out of me !!!
I have heard this theory about personality affecting suseptability to illness mentioned before - I remember once asking my mothers Consultant whether I was at risk of developing MS because she had the illness.
I clearly remember his response being that whilst MS was not genetic, there were suggestions that certain types of people were more suseptable to the illness (normally the worriers, workaholics, people suseptable to stress etc) and that genetics may play a part in making me similar in personality to my mum. I think thats always stuck in my mind and in the early stages of Alison diagnosis I felt it had come back to haunt me
Having spoken to the Consultant at length since then I feel reassured that this film was made a long time ago and his opinions have now changed
I think a lot of the problems in the UK appear to be that we are often years behind developments in the States due to our licensing procedures etc.
We have always been told to think positively and hope that we will eventually find the correct combination of medications and therapies to place the illness into remission
My concern is the staggering amounts of medication Alison is taking at such a young age which have no effect whatsoever on her pain or dystonia and whether there would be any long term consequences of her continuing to take them
Thanks again
Andrea

Andrea,

Although I'm nearly 25 years old now, I was about Ali's age when I first got RSD, about a month after my twelfth birthday. Although my personal experience can't substitute for hard medical evidence, I can tell you that, having taken similar medications to the ones Ali is on, I have had no lasting ill effects.

I had quite a few adverse (and some allergic) reactions to many of the medications, but as I'm whole and fairly healthy...and usually happy (when my weekend off isn't ruined), I'd say that the medications did not harm me permanently in any way. The only problem I still have from the medications is that having RSD led me to discover that I am allergic to NSAIDs (possibly from a lot of exposure to them). I assume that had I been just exposed over a lifetime of popping Advil for headaches, I would eventually have had a reaction anyway.

And for something with more potential for permanent harm, I want to address the personality issue. I see and hear the assertion that certain personality types get RSD way too often. It's always someone talking about how "type A" personalities get RSD.

First of all, let's remember that if they didn't stereotype us as being go-getters, we'd be stereotyped as lazy. I suppose I'd rather take the first option, although I find both extremely insulting. I didn't get RSD because I'm a workaholic...mostly because I'm not really a workaholic. I enjoy my time off, and I'm really sick of having it ruined this morning, to be honest!! (This is ultimately the downside of living where I work...the upside is no commute in the morning).

At the age of 12, just like all 12-year-olds, my personality wasn't developed enough to justify typecasting as a type-A personality or not. Most 12-year-olds want to please adults and work hard. Why? Because that's what they're trained to do!! If they don't do that, parents and other adults generally punish them. It is ENTIRELY unfair to tell a child that his or her good behavior is the cause of their (physical) painful disease...not to mention that it makes absolutely no sense whatsoever.

I know plenty of lazy, unambitious people who have RSD. I also know plenty of ambitious, active people who have RSD. Here's a shocker for Ali's doc: people with RSD are individuals, just like the rest of the general population.

Please, PLEASE don't accept this line of thought from ANYONE, doctor or not! I can promise you that these thoughts are much more permanently damaging than any drugs that Ali could ever take.

Whereas I've had no lasting problems from any of the medication, I can assure you that had I never been doubted, that had the physical origin of my RSD never been questioned, I would be a more confident and independent person today. These are issues that I'm still working through. I sincerely hope that Allison comes through this better than I.

-Betsy

hey VIC, not sure where you were going with my posting??? all meds are poisons and more so if taken in large enough amounts or if your body does not like them, are they not? were you saying the word poison made you want to end your life? that is what i got out of what you said. i hope i am wrong.
and i am also glad, that if anyone in my family had to have rsd, it was me, and not my children or grandsons. that i agree with. i find ways to see and do good even in my state of being. i hate it but i handle it.
as far as the discussion of type A personalities, i believe from what i have read,that because a person is already stressing themselves, even if it is in a good and positive way, it is still stress, the chance of the overstress and conversion to rsd is more possible. i have always been one who pushes myself and i still am and i am proud of it. so you young ladies keep it up and don't take it pesonally. i believe sometimes people take words too seriously. lets face it we have rsd and no one knows what it really is or why we get it or what to do about it! so live life as well as you can, and do not care about the words .... joan

Joan,

I very much disagree with your theory on stress. In addition, I think that, if taken in the wrong way, it can be highly harmful to our cause.

I understand that you mean that stress may be a contributing factor in the development of RSD, but the way you stated it sounded like stress *becomes* RSD. This just isn't true. Stress is a contributing factor in MANY diseases, but never does stress alone cause a progressive physical illness! EVERYONE has stress, few have RSD. If there is a link, it isn't scientifically proven...and speculation really *can* be harmful.

I've been on this rant for several weeks now, I know. Please, PLEASE be careful how you speak about stress!

When I first got RSD, I was under no more stress than the average sixth grader. Sure, I strove to be the best at the things I enjoy, but that's a fairly universal trait (as in, I know few people who intentionally set out to fail).

We all find it insulting when a doctor tells us that what's wrong with us is stress, right? So please do everyone here the courtesy of not saying the same thing.

To be perfectly honest, being told that I'm stress stresses me out. We're all different, and we all had different factors that led to our development of RSD. For some, maybe stress contributed, I don't know. I can assure you, however, that there are people for whom stress did not necessarily play a role.

There is NO personality profile that makes anyone more likely to get RSD. It is an insulting idea, and I don't want to see anybody here agreeing with it! We are unique individuals with highly different personalities.