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 10-26-2006, 09:57 PM #1
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Lightbulb List of Medications/Treatments

So I thought this might be helpful to both the new and old....
A place to list all the different medications and treatments we can think of, so we all know what's out there, then we can ask how well they worked for each other if needed.... i dunno how to make this a sticky cause i think once the list gets going it should stay up top for reference ya know?

let's see i've been on:
neurontin, topamax, celebrex, ms cotin, diluadid, amitriptylene, namanda, lexapro, norco, effexor, methadone, morphine, fetynol patches, lidoderm patches, prednisone, trazadone, oral ketamine... that's all i can think of for now!

procedures:
SG blocks, Bier blocks, Lumbar blocks, bupivaine cathedar, lidocaine infusion, SCS implant/explant, laser therapy

and then several sessions of physical therapy
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Old 10-26-2006, 10:34 PM #2
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Good idea - you've covered my lot already - the only way to make a sticky is through the mod (I think), so PM ZombieSlayer, I'm sure he'd do it..
all the best
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Old 10-26-2006, 11:44 PM #3
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Great Idea!
But would it not help if we knew how these meds were used.

In my humble opinion, if we all posted our meds, from our memories, or notes, and put our switches and why, this would be the most helpful information to members new and old so we could decipher what might be best for our situation.

For instance, when I first got RSD, I worked my way up the ladder in pain meds until my cocktail of meds was at:

Neurontin started at a low dose...moved up...then tried down.
Trazodone
Methadone

Even though I had absolutely no movement in my fingers, wrist and had a frozen shoulder....my body was responding to SGB Blocks and I had 2 5 day continuous blocks which were done in the hospital. I went to PT and occupational therapy for 3 years. Off Methadone.

I'm now on:
Topomax
Trazodone (double dose of what I was taking before)
Clonidine

My Neurontin was dropped because I felt symptoms of "zombiness!" and Topomax is it's replacement.

The Clonidine was the med which was added when I was having increase pain, and searching for something to lower my pain levels. I actually started a thread such as this to search for something that was working for other members!

I started on the Clonidine patch and work like magic for me. Then after maybe 6-9 months, its effectivness wore off. My doctor and I decided to give the oral meds a whirl.

This year I believe I have had 4 blocks or epidurals to try to maintain my pain in both arms.
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Old 10-29-2006, 09:32 PM #4
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I've done the rounds of most meds that are available to us, over my 6 years of rsd. Here's my list: (Bear in mind some of these have the Australian names, you might know them as a different name) .........

Medications:
  • Anti-convulsants: Neuronting, Topamax, Lyrica
  • Antidepressants: Lexapro, Zoloft, Endep (Amitriptyline), Cipramil
  • Muscle Relaxants: Baclofen
  • Analgesics (for breakthru pain): Panadeine Forte, Nurofen Plus, Digesic, Tramal
  • Opioid Based: Oxycodone, MS Contin
  • NSAIDS: About 9 different types- most aren't available anymore coz of longterm side effects
  • Other: Mexitil, Zomig

Treatments:
  • SG Block- no pain relief but was tried for the first time at the 3 year mark so not expected to be great, new dr just wanted to give it a try
  • 4 cortisone injections- (for frozen shoulder as a result of my rsd)
  • 3 ketamine infusions- (7 day awake technique each time). 1st one- 30 days total pain relief, 2nd one- 10 months lower pain levels (occasionally had flare ups but otherwise had little to no pain most of the time), 4th one- no pain relief, stopped due to liver function problems which have since resolved.
  • 1 magnesium infusion- (no obvious relief but can help over time with internal strengthening issues etc)


I'm currently on 225mg Lyrica, 50mg Endep each day. Lyrica doesn't do anything at all. I started the endep after being on the lyrica for 4 weeks, and it was only then that I started getting breaks from the high level pain. So I'll come off the Lyrica after seeing my pain dr next.

For breakthru pain I take 10mg endone and rest with a heat pack on the sore area if I can handle the touch.

I use crutches to walk most of the time, but do physio exercises daily to help strengthen my arm and leg. I know physio works because I don't have a frozen shoulder anymore, I have great range of motion (though not as good as my other arm) in my shoulder, its just my lower arm thats buggered, and my leg movement, so I'm working on that.

x Kate
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RSD in right arm for 13 years, right leg for 8 years, left arm since May 2013, with full body symptoms and CNS.
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Old 10-30-2006, 06:15 PM #5
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Kate is of course amazing for choosing two pregnancies while already diagnosed with RSD.

I've had the basic treatments of Pt and nerve blocks, Clonidine patches that never seemed to work, a 4 day lidocaine infusion in an ironically timed attempt to get into ketamine trials while at the same time the IL-6 in my system slipped me a nontransmural coronary infarction that went undiagnosed for a year, and have of late been out searching the landscape for anti-IL6 medications. The one thing that seems to have worked alright for a while were Zometa infusions, which we last had in May of this year, a cessation motivated by both toxicity concerns and the need to end a sort of swich to the end phase of the study, to see how long the effects lasted after giving them up. (Zometa is a "pamidronate," best lnown for limiting to uptake of bone material into the blood stream in patients with bone cancers.)

There's also another little investigation that I am in which is interesting. People have known for a long time of the GI complictions from opioids. Now they have GI doctors who have tracted down a particular baterial bloom leading to the production of neurotoxins of all things, and for which I have treated three times over the last six months with the antibiotic Xifaxan (200 mg) [2 tablets 3/day for 10 days]. In the meantime I am taking the generic version of Narcan, an E.R. heavyweight drug used to block opiod receptors through the body when given iv or im. The theory is is that, when taken orally along with the opioids, the drug, Naloxone HCL, will shut off the opioid receptors in the gut while the pain killers enter the blood stream itself. [So far it feels as though the first two rounds of the Xifaxan were the more succcessful, giving me some relief for as much as six consecutive days therafter. The backup issue of Narcan making maybe some but not a great deal of difference.]

In the meantime, over the last week or so, if I have been at all active (in terms of running a couple of errands or so) I have just been subject to the heaviest sense of cramping that I have ever experience, like being ground between hard rock, notwithstanding Nuerontin, Xanax, Zanaflex, oxycodone and Marinol. (Lyrica having given me significant amnesia.) Now it's just a matter of trying to survive - or so it seems - until I can get my next Zometa infusion on November 16th.

The Zometa helps with about 40 % of all focal pain, but does nothing, unfortunately, for the cramping, and where Xanaflex carries most of the weight, with a Marinol assist, Baclofin and I never having really hit it off and Topamax never having been a viable candidate due to some eye issues.

I am sorry for all of this long winded buildup, but . . . If anyone can suggest anything for this feeling of being crushed at every turn, I am all ears.

Mike

Last edited by fmichael; 10-30-2006 at 07:11 PM.
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