Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 08-23-2007, 02:46 PM #1
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Default Lyrica / Pregabalin - Your Thoughts !!!!

We have just got back from seeing my daughters Consultant who confirms that her RSD has spread to her right arm from her left leg.
She has severe dystonia and spasms in both and he is doubling her baclofen to 30mg daily over the next week
As she had a bad flare-up after her recent bier block ha has now stated he won't be continuing this and would like to "lay off the blocks" for a while and see if we can get things under control / stabalised with medication
Ali did take Amitriptyline (30mg daily) but this caused her vision to go blurry which contributed to her recent fall causing the RSD in her arm
We had tried Gabapentin but though this may be causing balance problems though she has now been off this over a month and the balance problems remain so we now think this was just a coincidence
It has now been suggested that Ali takes Lyrica twice daily (not sure of the doses) but because of bad experiences with other drugs her Consultant has left the final decision to us as to whether or not to start on this
Ali is only 12 and has been through so much in the past few months that I was wondering if you could share your experiences about Lyrica with us before we make the final decision
I know everyone who has RSD is different but some idea of what we could expect if she begins taking the drug would be helpful
Many thanks
Andrea & Ali
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Old 08-23-2007, 06:59 PM #2
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Andrea and Ali,

Sorry that your daughter is suffering with this miserable monster.

I took Lyrica for about a month during which time my ankles swelled so bad you couldn't tell I even had bones there. I didn't have any other reaction good or bad, I was quite disappointed. My PC Doc made Lyrica sound like the end all be all.

I was recently put om Neurontin 200 mgs at bedtime, it was given to prevent the shingles from possibly turning into RSD in my right rib cage area. This was the second time I had shingles and I only had 4 but this time they hurt as bad as the RSD does. By the way I also wanted to let you know the neurontin even at such a low dose helped with all my pain. I didn't have any allergic reaction to Neurontin. You mentioned they increased you daughters Amitriptyline and she was having blurry vision. The blurry vision seems to be a side effect of RSD, I am sure others will post and discuss their visual problems since RSD came into their lives also.

Good luck to both of you and I hope you get the answers you are looking for.
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Knowledge is power!

RSD since 1999 right foot and ankle from fracture of 2 bones, after stepping in a hole at an apartment complex while visiting a hospice patient. Again hunting for a new PMD.
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Old 08-23-2007, 07:13 PM #3
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Hello there,

I take both Neurontin and Lyrica. Lyrica has really helped with my allodynia (the extreme skin sensitivity), and it does help with the burning pain. Both of them are anti convulsant medications and are in the same "family".

Overall I like Lyrica better than Neurontin.

I haven't had any bad side effects like sleepiness or weight gain either.

Here is something from the RSDSA:
Quote:
Antiepileptic Drugs
Gabapentin is one of the most commonly prescribed pain
medications for neuropathic pain in general, and in CRPS
specifically. One of earliest reported uses of the drug was
in a case report for the treatment of CRPS [3]. Gabapentin
is thought to work by modulating calcium channels at a
specific alpha2delta subunit [4]. The drug has been studied
extensively in painful diabetic neuropathy [5] and
postherpetic neuralgia [6], with demonstrated efficacy. In
one randomized, blinded trial in 58 patients with CRPS,
gabapentin had a mild effect on pain [7•]. In the largest
placebo-controlled trial of gabapentin that included
CRPS patients (85 of the 305 studied), gabapentin was
shown to cause a significant reduction in pain, compared
to placebo [8]. Of note, although there was a 1.5-point
improvement in pain with the gabapentin group, there
was only a 0.5-point difference (0–10 point pain scale)


Pharmacologic Therapies for Complex Regional Pain Syndrome Mackey and Feinberg 39

between the placebo and gabapentin groups. This is less
a reflection of lack of efficacy with gabapentin (or many
other antineuropathic pain medicines), but more a testament
to the power of placebo. In a placebo crossover
study of gabapentin, van de Vusse et al. [7•] noted a mild
benefit with gabapentin as well as a reduction in mechanical
sensory deficits. More formal quantitative sensory
testing studies need to be done to replicate this finding
and assess its mechanistic implications.

Most analgesic trials use a monotherapy design to
investigate efficacy. Recently, a novel study by Gilron
et al. [9••] investigated gabapentin, morphine, or their
combination for neuropathic pain. The authors found
that better analgesia was obtained with lower doses of
each drug used in combination than with either drug
used alone. More pharmacologic combination studies
are needed.

Pregabalin, (Lyrica)
a new antiepileptic drug (AED) that has
a similar mechanism of action as gabapentin, has not
been studied in CRPS. It has been extensively studied in
postherpetic neuralgia [10] and diabetic neuropathy [11],
with good efficacy. Its primary advantage over gabapentin
is thought to be its more linear pharmacokinetic profile
and twice-daily dosing. Its side effect profile is similar to
that of gabapentin, and it is generally well tolerated.

Sodium channel–blocking AEDs may have some
utility in CRPS patients; however, there are few studies
directly demonstrating efficacy. Carbamazepine is an
older AED indicated for trigeminal neuralgia that has
been studied in CRPS in a randomized, controlled trial
(seven of the 38 neuropathic pain patients studied had
CRPS). Administration of 600 mg/day of carbamazepine
over 8 days resulted in significant pain reductions,
compared with placebo [12]. Typically, in our clinical
practice, we use oxcarbazepine instead of carbamazepine
because of oxcarbazepine’ s similar mechanism of action
and efficacy, as well as reduced side effects and drug-
drug interactions [13,14]. Oxcarbazepine has not been
studied in CRPS patients.

Antidepressants
There is ample scientific evidence to support the use of tricyclic
antidepressants (TCAs) in neuropathic pain [15,16].
Although the literature for use of TCAs in CRPS is
lacking, the drugs are commonly used for CRPS management.
The antihyperalgesic effects of TCAs are probably
related to enhancement of noradrenergic and serotonergic
descending inhibitory pathways and partial sodium-
channel blockade [17], mechanisms that are independent
of their antidepressant effects. TCAs are not benign drugs
and, in an intentional overdose, can be toxic as compared
with serotonin-selective antidepressants. Although there
is literature supporting the use of TCAs in a variety of
neuropathic pain conditions, there is only anecdotal evidence
supporting their use in CRPS.

The clinician should be aware of several different TCA
drugs, as they have varied side effects that may sometimes
be used to the patients’ advantage. For the overweight
patient with lethargy, the clinician may choose a TCA
with more noradrenergic selectivity (eg, desipramine) ,
which may be activating and can cause some appetite
suppression. For patients with poor sleep hygiene, the
sedating properties of certain TCAs, such as amitriptyline,
are recommended [18].

Selective serotonin reuptake inhibitors have been disappointing
for neuropathic pain in general and CRPS in
particular. Most studies of the serotonin-selective type
(nontricyclic) antidepressants have shown little or no
analgesia [18]. Newer antidepressant agents such as duloxetine,
venlafaxine, and mirtazapine show some promise
and have the advantage of a different, more benign side
effect and toxicity profile.
I hope this helps. I sure hope that Ali starts doing better!

Baclofen has helped me quite a bit with my muscle problems, so I hope that it does the same for Ali. There are others out there, if this fails.

I know that this is NOT easy especially being young. I am sorry about the spreads too... sounds like me, and it is no fun.

Last edited by InHisHands; 08-23-2007 at 08:03 PM.
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Old 08-23-2007, 07:46 PM #4
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Heya

I found that gabapentin didn't really help me but I got far better results with Lyrica (Pregablin) and I know others who have a better result too. What about switching from the Amytriptylene to Nortriptylene? they are VERY similar, the only difference is that Nortriptylene has less side effects - I can't handly the Ami but I can handle Nortrip. There are other anti eplieptics out there like Carbamazapine etc. I suppose the balance couldn't be related to having left arm/ right leg which would reck the balance?

Hope things are ok

Love

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Old 08-28-2007, 01:32 AM #5
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I was changed from Gabipentin to lyrica and am glad I did, the lyrica works better (for me) and at smaller doses, they are very similar drugs made by the same company. Make sure that they start her at a very small dose and there was a period of almost dizyness but it goes away after being on it for some weeks. and I found too that it realy cuts down my oversensitivity and the general achyness to a large extent.

I was also on Amitriptyline and was switched to Trazadone (also a tricelic antidepressant) because the Amitriptyline was making me gain weight like crazy.. my blurry eyes stayed the same throughout the changes as did the ballance problems so I too think it is just more of the RSD effecting our vision etc.. rather than meds methinks

I have been out of touch and I am very sory to learn of Ali's independant spread from a fall, and I sure hope it settles down for her realy soon.. Does she take vitimin C? they are starting to find that it can stave off occurance of RSD after a break so it's gotta help us right? well it can't hurt anyway and may help lots.

Here is an abstract on a clinical trial with vitimin C and RSD that you will find very interesting it is called "Can Vitamin C Prevent Complex Regional Pain Syndrome in Patients with Wrist Fractures?"
:http://www.ejbjs.org/cgi/content/abstract/89/7/1424

Yes it can!

best wishes and healing hugz,
Sandra
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