I have full body RSD (Reflex Sympathetic Dystrophy Syndrome) and currently have a pump implant and spinal cath for delivery of my Prialt. Do any of you have experience with this medication? or med delivery system. My pump is a SynchroMed II. It was installed in May 09
Yes. I have been diagnosed with full body rsd since March 2001. I have had spinal cath i.e.interthecal pump since Sept. 2003. Dilaudid was medication used on me first, but just 5 months ago the medication lost it's ability to work well. They added Prialt three weeks ago. After 12 days I could feel effect. What a relief to have the extreme burn fade abit again... My pump is by medtronics. I am worried because I may be having some side affects. Sleeplessness, nausea, vomiting (just once starting this evening) dizziness. If this persists tomorrow I will call doctor on call. I hope it will pass. I don't want to go back to the extreme pain I just got out of. So worried.
I also have full body RSD and I got a Prialt pump (made by MedTronics) in January. Because of how serious my situation was (My leg was swollen to 8 times its size and was ripping open,) they actually started off really high because I was really close to losing my leg. I had a lot of terrible responses on my way to getting to the right dosage. I had a lot of horrible responses ( most of which I don't remember, and I still have some side effects that I hate. But honestly I would do it again in a heartbeat.
Hi! First, I MUST Thank ALL of you who replied to Imintz66's question! I also have RSD and a Spinal Cord Stimulator that was implanted about 5 years ago. At first the stimulation felt oh, so good, tingly yet comforting! About a year ago I noticed that it started becoming less and less effective and actually began to hurt. The tingling feeling began to feel like a million tiny daggers that were stabbing, chopping and burning my nerves. I would have to turn it off completely. For 6 months I felt compelled to give it another try and within 24 - 48 hours the stabbing, chopping and burning sensations would return no matter what strength or mode I had it on, forcing me to turn it off yet again! Finally, I decided enough was enough and dropped into the physician's office who had implanted it to make my yearly appointment because it was almost due anyway. His receptionist acted weird that I was there and called my physician's assistant to the front counter.
She told me that my Physician would first have to review my file and they would call me in a few days. Three days later the assistant called and told me that the Doctor would NOT see me after all. I asked her why and she said it was because I took too much pain medicine and even IF I were to drop the amount by at least 80%, there was still no guarantee he would see me! I was SHOCKED! I was on no more medicine than I was when he first implanted the SCS, in spite of the fact that I had been diagnosed with Psoriatic Arthritis AND Ankylosing Spondylitis after he had implanted the SCS! I truly had NO idea what to do. I had planned to speak with him about swapping out the SCS for an internal pain pump to see if I could get better control over the RSD pain that way, but was left completely hanging. For those of you who have an implanted pain pump and found relief, I am very, very happy for you! Do you think it would be worth it for me to still pursue looking for a new Physician to possibly remove the SCS and implant a pain pump? Or leave things as they are, with the SCS and keep trying to see if I can eventually find SOME relief with that? What would y'all do if you were in my situation. Thank you all!!
P.S. i have not even attempted to turn on the SCS in four months.
- Prialt Information for Consumers
- Prialt Information for Healthcare Professionals (includes dosage details)
- Side Effects of Prialt (detailed)
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