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