[ali12]

Over the last three and a half years my daughter Alsion has trialled many of the drugs for RSD and nothing has worked
As she also suffers from dystonia her consultant has suggested that a baclofen pump may be useful in controlling both dystonia and pain
She has now developed reflex syncope with pain being the trigger and has had a spread of the RSD to her back following injury during one of the syncope episodes
I would be interested to hear from anyone who has the baclofen pump as to how it controls pain and how much of a reduction in pain we could expect
My mum had a baclofen pump for MS so I am fully aware of the benefits for dystonia and spasticity
At the moment Alisons consultant is discussing the use of baclofen only b ut I am aware that other pain medications can be used too
Thanks
Andrea

[tmullen]

I'm sorry to hear about your daughter. I'm 17 and have had rsd for 6 years. Both legs back and both arms. I'm seeing Joshua prager at ucla in Los Angeles. I have seen over 15 doctors and he is by far the best I've ever seen. I am getting the scs installed on august 17th then having the baclofen pump inserted two weeks later. I have horrible dystonia and spasms so he says it will help a lot with that. But the scs is for the pain.
I'd like to hear more about your daughter
Nice to meet you
Taylor

[fmichael]

Dear Andrea -

No direct experience with the Baclofen pump, I just take what I'm told is the maximum oral dose at 50 mg./day.

That said, here's an article (in free full text thanks to the RSDSA) that seem to be the latest word on the subject:

Intrathecal baclofen for dystonia of complex regional pain syndrome, van Rijn MA, Munts AG, Marinus J, Voormolen JH, de Boer KS, Teepe-Twiss IM, van Dasselaar NT, Delhaas EM, van Hilten JJ, Pain 2009 May;143(1-2):41-7, Epub 2009 Feb 18, FULL TEXT @ http://www.rsds.org/2/library/articl...G_MarinusJ.pdf

Department of Neurology, Leiden University Medical Center, P.O. Box 9600, 2300 RC Leiden, The Netherlands.

Comment in:

Pain. 2009 May;143(1-2):3-4.

Abstract
Dystonia in complex regional pain syndrome (CRPS) responds poorly to treatment. Intrathecal baclofen (ITB) may improve this type of dystonia, but information on its efficacy and safety is limited. A single-blind, placebo-run-in, dose-escalation study was carried out in 42 CRPS patients to evaluate whether dystonia responds to ITB. Thirty-six of the 38 patients, who met the responder criteria received a pump for continuous ITB administration, and were followed up for 12 months to assess long-term efficacy and safety (open-label study). Primary outcome measures were global dystonia severity (both studies) and dystonia-related functional limitations (open-label study). The dose-escalation study showed a dose-effect of baclofen on dystonia severity in 31 patients in doses up to 450 microg/day. One patient did not respond to treatment in the dose-escalation study and three patients dropped out. Thirty-six patients entered the open-label study. Intention-to-treat analysis revealed a substantial improvement in patient and assessor-rated dystonia scores, pain, disability and quality-of-life (Qol) at 12 months. The response in the dose-escalation study did not predict the response to ITB in the open-label study. Eighty-nine adverse events occurred in 26 patients and were related to baclofen (n=19), pump/catheter system defects (n=52), or could not be specified (n=18). The pump was explanted in six patients during the follow-up phase. Dystonia, pain, disability and Qol all improved on ITB and remained efficacious over a period of one year. However, ITB is associated with a high complication rate in this patient group, and methods to improve patient selection and catheter-pump integrity are warranted.

PMID: 19232828 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/19232828

As you can see, the result with Baclofen pumps have been mixed. But having the pump "explanted" in six of thirty-six patients following the end of the trial suggests that five out of six patients preferred life with it than without. Still, the article notes a relatively high rate of mechanical problems suggesting that at least at the time of the study, this was still a work in progress.

I am sorry I don't have immediate access to the comment/editorial referred to in the abstract, but will try and get it for you.

Mike

[cindi1965]

Oh how I have missed MISS ALI!!,

I have been taking baclofen for my cerebral palsy for the last 10 years and it has done wonders for my spastic legs, however since I was diagnosed with RSD I have had to up my dose. I have never had any serious side effects at all...it's just like any other drug, it effects people in different ways.
Good luck and I hope Ali gets back on track real soon...she is our shining light on this board!