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

Hi Andrea,
I am so sorry for the worry that having your little girl with this illness must bring you.
As others have said, I am so happy that it is me who was dealt this blow and not any of my children.
I would be wanting Ali to have a more multidisciplanory type of treatment rather than relying on just medications as being so young does stand her in good stead of being cured.
You may have already told us so I apologise for asking but has she had the benefit of nerve blocks, mirror imagory,ketamine, physiotherpapy, OT and psychology?
I think that the use of these without relying only on medication is one so young would be beneficial however please don't worry too much about the long term affect of medications on her, many people have had a multitude of drugs for years and years from an early age seemingly without any or too many issues.
I wish you and your little girl so much luck
Tayla

Hi Tayla4me
Alison had a "Bier block" at the end of July, which had no affect and she also lost her balance. The Physiotherapists have only just started mirror imagory, which too does not seem to be working. Alisons not started on Ketamine as of yet. The OT at the hospital dont seem to be doing anything for her, however we have another OT who is really nice and shes reffering us for a transit wheelchair, she also gave Alison a bath lift.
Many thanks for all your help