Pentoxifyllin
 

Has anyone tried it with CRPS? I'm asking because LDN has not worked as well as I hoped, and it's been 6 months even though I've heard it sometimes takes longer. I'm getting 10% relief from it and really want more. I have a doc appointment tomorrow and will discuss other treatments like DRG, creams etc. thank you!

Has your doctor ever talked about Neurontin (gabapentin) or Lyrica (anti-seizure medications)? Those are the common medications for nerve pain.

I've tried both but sadly they are not for me. Thanks CRPSbe!

Hi NYM,

Pentoxifylline presents some interesting possibilities. I had a pharmacist suggest it to me at one point but no docs interested in prescribing it. It reduces inflammatory cytokines, decreases microglial activity and also addresses microvascular changes. Sounds like something worth considering.

Did your doctors ever look at ketamine for you or possibly the neridronate trial coming up? That will probably be at multiple sites like the initial one was.

I hope you have a good appointment tomorrow!

Oh, OK. Just thought I'd mention them, because often it's the first thing that is suggested, as it helps many cope with the pain better.

I'm sorry it's not for you, and didn't help.

Pentoxiflyn
 

QUick Question New York Mets! This medication that you are asking about..what type of CRPS symptoms is it supposed to help???

Well that was unexpected. Doc thinks I might have something rarer than CRPS and potentially a movement disorder. More neurologists yay! More uncertainty yay! I'm kind of tired to be this far down the road and still searching for answers, confirming diagnosises. I was also put on baclofen to see if that will stop the shaking that makes the hospital think something is going on here. Asked about ketamine cream and was told it could cost $1500, is this true? Please give me more patience

Cream
 

Hang in there NYMets..
As for the ketamine cream..I'm assuming that you are talking about a compounded cream?? I just had some prescribed to me awhile back..it had Ketamine, gabapentin, lidocaine etc and it cost 140.00 for the tube.

NYM,

Geez, let's hope if it's something more rare it at least has a more definitive treatment. I'm not arguing with your doctor of course but there are movement disorders associated with CRPS. We actually have a member whose primary symptoms are motor related.

Movement disorders in complex regional pain syndrome. - PubMed - NCBI

That said, you know I am a huge fan of an adequate workup. It is always good to have information. I don't know/remember how you ended up with CRPS or what was done to rule out other problems. Nerve conduction studies and imaging can be quite helpful. A fresh set of eyes on your case from a new perspective could make a difference for you.

I'm with Sophie on the ketamine cream. My topical has it and it's less than $200.

I hope that taking this new direction gives you information that is helpful. Turning over a few more stones is not such a bad idea. Please let us know what happens. It would be wonderful if this opens another door to healing.

Thanks for the support, Sophie! I was reeling for about 2 hrs from when I posted a update but had so much stuff to get done that day I had to move on. With an appointment with the folks at movement disorders, basically another neurologist (the groups of docs I've had the least luck with), coming up in a few days - I'm a little nervous again. Hopefully, I'll have more answers then and with as few pokes as possible. I can't have an MRI done with SCS so I don't know how they'll really do much more testing other from a clinical point of view. Thanks also for mentioning the price of the cream you buy, I knew his number didn't sound right. Does anyone think it can be covered by insurance? I just want to use the cream to apply some sort of lotion to my sensitive thigh. It really needs to be desensitized and I hear it takes a long time, which I why I haven't started. :p

That's what I was thinking as well! If more options are made available in regards to treatment, maybe going down this path wouldn't be such a bad idea. On the medication I originally asked about, I never brought it up with my doc because of being put on Baclofen for my spasms. It's hasn't helped so far, as I expected and maybe I'll add it if I get rid of this one. As you also mentioned, I don't see why I can't have a movement disorder AND CRPS. I read a study that 1/4 of RSD patients obtain it along the way. I don't know which one I have or if I even have one but I'm just trying to optimistic that I'm diagnosed with something more drastic like p's disease as I'm supposed to be too young to have it, even though there's early onset of it. Some symptoms do match like tremors and I find myself thinking way too much to complete even the simplest tasks, as well as bending my back when I walk and a lot of tingling in my hands but I rather not.

I hope your consults go well. Information is always good and sometimes new disciplines really can make a difference. My consult with a peripheral nerve surgeon was life changing when many others had given up. (my CRPS came after a later procedure) I am staying hopeful for you. Please let us know what they find. Tremors can have several causes so it's worth running this down. When my tibial nerve was badly entrapped I had weird fasiculations in my calf and thigh constantly. Those stopped after my nerve surgery. I'm not saying that's what you need BTW, just citing my experience. Continuing to look for answers and treatments brought me massive improvement and I am praying it does for you too!

on the tingling in your hands, do you think that is related at all to your crutch use, either from pressure at the armpit or wrists or tension in your shoulders? - just a thought...
:hug:

Hi Mets. I've never tried that but if you do I hope it helps you find some relief from your pain. I take gabapentin and pain meds (that my pm dr prescribes for me) and that seems to help manage my rsd pain a little better. Sending soft hugs to you my friend.

Hey everyone. Just thought I'd post an update! I had a nerve conduction study done yesterday after waiting a month for it. Basically, it was an EMG except there was no needles thank god. They measured my tremors and its frequency, how high or low it is as there should be a correlation between that and possible nerve damage although I'm a little confused on this front. My problem is that my leg shakes too much so would this indicate anything? The thought is, from what I've read, is that something is wrong if your impluse is too slow and not the other way around. Hopefully they figure it out.. I'm in the process of revamping my pain management, physical therapy team too so that's fun. Any suggestions in New York or New Jersey would be great

Sorry I can't give you any advice or suggestions on this. I just don't want you to think that nobody cares. Thanks for the update and hopefully someone will chime in with some good info for you. It is good to know that your doctor is still looking for answers and not giving you a diagnosis that may not fit. Good luck with the new pain management and physical therapy team. My thoughts and prayers are with you.

Shay

:Late to answering, but my Ketamine cream is covered by my insurance.