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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Ketamine cream
Apr 15, 2011
Hey everyone, I had posted in another post that my doc believes my RSD has spread to my incision sites in my back and butt cheek (from spinal cord stimulator implant) He told me he was gonna order a cream for me. Well it came today UPS from a place called custom pharmacy solutions.
The cream is 10% ketamine, 2% baclofen,2% cyclobenzaprine, 6% gabapentin,
and 5%lidocaine. has any one else used this kind of cream? did you have any side affects? I used it for the first time tonight and my mouth is very numb(I didnt put it on my mouth only on my back) and I feel a little uhmm fuzzy, light, airy dont know right word to describe it. my back and :wave:butt cheek feel nice warm numb. thanks for any info
Kelly
Re: Ketamine cream
Apr 15, 2011
I use a very similiar creme although mine is compounded and I love it! It even works when my pain meds do not and I am on strong meds. I used this creme for about 7 years and will not go without it!
Re: Ketamine cream
Apr 15, 2011
I have a cream like that and when I compared your ingredients to the container...it is pretty close to yours. I think it helped me most of the time. I did not notice any side effects when I use it.
Re: Ketamine cream
Apr 16, 2011
I get compounds too........they are exactly like kellys.....lol...you are a silly girl........he he he he! Wash your hands goof ball.......I've done that ....even if u leave a lil bit it'll rub off somewhere else...

When I use cream on neck and partial face...I get sleepy and foggy for about 30 mins.......its worth it.......when my daughter puts it on me...I make her wear gloves...you never know....
k
Re: Ketamine cream
Apr 16, 2011
You know, when I put the cream on I didnt really read what the KBCGL stood for, because of all things on top of RSD I got viral pink eye (embarrassed) its from a sinus infection, and its hard for me to read the lettering so I had hubby read it for me when he got home.
I think I will use gloves when putting it on from now on. It seems since I have had RSD I get sick so easy and silly child hood things like pink eye, rosiola etc... I may not have washed my hands well enough, or maybe used to much cream, hubby bought me one of those syringe things where i can measure out 2 mgs exactly. Good news though it really helps the incision sites. Kim you are great!!!!!!! I hope things on the homefront will settle for you soon. thank you
kelly
Re: Ketamine cream
Apr 16, 2011
I also have a cream with a similar mixture. The pharmacy had to compound it and my insurance would not pay the cost at all. It was VERY expensive. I was told the first batch would be over $500!!!! I had them make a small trial amount at more than 1/5 the cost. It works though! And yes, Kelly, you have to wash your hands. I've forgotten and my mouth turned numb too.

I have new insurance now and I hope it will be covered, plus my pm dr. sent it away this time to a mail order type pharmacy that does the compound. He said they usually have good luck with them and insurance. So, we'll see. I ran out of the other and I wish I had it. It made such a difference, esp with the sensitivity.
Re: Ketamine cream
Apr 16, 2011
Just FYI, my doc said there is no risk or side effects from using it topical. The danger is only if it is ingested.
Re: Ketamine cream
Apr 17, 2011
K Lana, My doc ordered from custom pharmacy solutions I have Blue cross blue shield and only had to pay 20 dollars for 240 mgs its a 60 supply if i did the math right 2 mgs 4xs a day. I got some gloves from CVS and I am using those to apply it and no mouth numbing yeah. The cream was ordered for my incision sites where the RSD has spread, But I am gonna ask my PM if I can use this for my hand also.
kelly
Re: Ketamine cream
Apr 17, 2011
Where are they located? THe place my PM uses is in GA. Anyway, I have bc/bs now, didn't before, and so I'm hoping it will be covered. My PM dr. told me to put it all over my foot and ankle, wherever the burning and sensitivity was.
Re: Ketamine cream
Apr 17, 2011
the pharmacy address is birmingham AL. hopefully your bcbs will cover to
Re: Ketamine cream
Apr 18, 2011
[QUOTE=Boxerluver;4732549]Just FYI, my doc said there is no risk or side effects from using it topical. The danger is only if it is ingested.[/QUOTE]

[COLOR="Purple"]Hiya,

Not to tread on your response, but you and your dr have been misinformed...Speak with your compounder.....At first, i was getting foggy and tired for about 30 mins (that has to be ketamine or the baclophen)...this is only when i put it on my neck or face or i dont wash my hands and rub my eyes or suck my thumb...lol just joking.....your mixture may not be the same or as strong as say mine or kellys..or maybe your physical being is different (please dont take like i am punching you cuz i am not)..well that wouldnt make sense cuz we have the same rx...you get me right?


Peace in a jeep,
K
[/COLOR]
Re: Ketamine cream
Apr 18, 2011
[QUOTE=kellyevans40;4732931]the pharmacy address is birmingham AL. hopefully your bcbs will cover to[/QUOTE]

Hey kelly
I've been meaning to post you about finances .......I forgot where u asked me....oh it was the post I didn't finish...ok ill post it here k? Its your thread anywho......

I fought for ssa for 4 yrs and finally got it....not to brag but auntie sunfire was not flipping burgers...I rocked and my social security gave me what I deserved and more...and im a money hoarded.....and my hubby has great ins and $$$$$........im blessed .....but stupid...I went thru mattress cash..im a young old schooler ......and I blew well over 10 grand on drugs....so sad! But I never hurt the family...everyone had their stuff before the demon came out...I truly feel like I was battleing inside of me....oh heck no! I confused two boards ...you don't to hear me rant about my drug abuse...

Peace
K
Re: Ketamine cream
Apr 20, 2011
I applied for ssd in feb this year. They sent me for a physical exam with one of their docs. He agreed I have RSD and told me with all of the medical records I have, I should have no prob getting social security. I know he doesnt make the final decision but it was nice to have a Doc who is seeing me for the first time believe me. I go to ssd psych evaluation tomorrow. I am really not too nervous about it and am ready for a face to face vent with someone. I hate complaining to my family, I feel so guilty as it is. My son left his residency for physical therapy sports medicine in Ohio to come home and help take care of me and my daughter left her school in Ohio for the same reason. My daughter and son looked up RSD online when I told them what was going on. My daughter read in several places that there is a high suicide risk with people who have RSD and in 2 weeks they were home. I am not suicidal No I am not giving up. My daughter who is 18 watches me like a hawk. She goes everywhere with me. If I am in the bathroom a little to long she is knocking on the door, she goes to every dr appt, and so on and so on. I feel very blessed to have such wonderful children, but I didnt ask them to put their lives on hold for me and told them not to(like talking to a brick wall) Here is where the guilt comes in. They are young 23 and 18 and should be starting their lives be carefree and see the world fall in love fall out of love so on and so on. But they are taking care of me I am married to a wonderful man for 16 years now. He is my childrens step father. My kids love him but I think they feel as though I belong to them and therefore am their responsibility. Oh my gosh ramblin rose here that should be my screen name haha. Anyways I have lots to discuss with this ssd psych. I still have my blue cross blue shield from my short term disability through work, I have been out on short term for 7 months now and it ends may 1st, so does my blue cross blue shield, hopefully my hubbys insurance will kick in by june 1st fingers crossed. Like you I have also worked my whole life well since age 15, I have paid in to ssd my statement say I should get 1700 a month and another 500 for my 14 year old child not as much as I could make if I were still working but everything helps. thanks
Kelly
Re: Ketamine cream
Apr 20, 2011
[QUOTE=kellyevans40;4732931]the pharmacy address is birmingham AL. hopefully your bcbs will cover to[/QUOTE]

My dr. did say today they were in AL, so I wonder if it is the same company. I have still not heard from them. How long does it take to get your prescription filled? They are calling them again today to find out why in a week and a half we've heard nothing.
Re: Ketamine cream
Apr 20, 2011
Kelly,

Good luck with your ss interview!
Re: Ketamine cream
Apr 20, 2011
Hi KLana, on Tuesday my doctors office ordered it he said normally it takes a week to get it. That Friday UPS delivered it to my door. It only took 3 days for me. I am in Fl its not to far from AL so maybe thats why I got it so fast I dont know really. I know on wednesday someone from the company called me for my insurance information and to make sure they had the correct address. Thanks for the good luck tomorrow.
Kelly
Re: Ketamine cream
Apr 20, 2011
[COLOR="SeaGreen"][/COLOR][QUOTE=kellyevans40;4735490]I applied for ssd in feb this year. They sent me for a physical exam with one of their docs. He agreed I have RSD and told me with all of the medical records I have, I should have no prob getting social security. I know he doesnt make the final decision but it was nice to have a Doc who is seeing me for the first time believe me. I go to ssd psych evaluation tomorrow. I am really not too nervous about it and am ready for a face to face vent with someone.[COLOR="seagreen"]Way too go! it is almost over...let me tell you how mine went....The Physc exam is nothing...he will confirm that you not crazy..so too speak but he has already talked to the MD...Now it went back to SSA Office and guees what...DENIAL!!!!!!(4 months later) so, my Lawyer...Oh Heck No! so She appealed (got, court date 6 months later) so now its 14 mos later...went to court, said my piece and even cried The Judge was Awesome! 4 months later, I got $70,000 backpay and the Max Benefits....now im comfortable but the renewal will be up in 11/2012....based on my current condition, I dont see an issue, unless I can rock again...I have some plans in place..like being a P.A. specializeing in Pain Mgt or if RSD just ate the melon then I will do good with my Medical Cannabis Thing...I wanna eventually make HEMP (making love instead of misery)...YUP! Hippy at heart! ....who would have thunk?[/COLOR] I hate complaining to my family, I feel so guilty as it is. My son left his residency for physical therapy sports medicine in Ohio to come home and help take care of me and my daughter left her school in Ohio for the same reason. My daughter and son looked up RSD online when I told them what was going on. My daughter read in several places that there is a high suicide risk with people who have RSD and in 2 weeks they were home. I am not suicidal No I am not giving up. My daughter who is 18 watches me like a hawk. She goes everywhere with me. If I am in the bathroom a little to long she is knocking on the door, she goes to every dr appt, and so on and so on. I feel very blessed to have such wonderful children, but I didnt ask them to put their lives on hold for me and told them not to(like talking to a brick wall) Here is where the guilt comes in. They are young 23 and 18 and should be starting their lives be carefree and see the world fall in love fall out of love so on and so on. But they are taking care of me I am married to a wonderful man for 16 years now. He is my childrens step father. My kids love him but I think they feel as though I belong to them and therefore am their responsibility. Oh my gosh ramblin rose here that should be my screen name haha. Anyways I have lots to discuss with this ssd psych. I still have my blue cross blue shield from my short term disability through work, I have been out on short term for 7 months now and it ends may 1st, so does my blue cross blue shield, hopefully my hubbys insurance will kick in by june 1st fingers crossed. Like you I have also worked my whole life well since age 15, I have paid in to ssd my statement say I should get 1700 a month and another 500 for my 14 year old child not as much as I could make if I were still working but everything helps. thanks
Kelly[/QUOTE]

[COLOR="seagreen"]I am not a SSA Judge but it looks like you are going to get it...dont back down......It is stressful as you know but it gets worse...LOL...true story! Naaaaah! the Docs are worst part and if the MD said it the Shrink will say it too...its all connected....


Peace,
K[/COLOR]
Re: Ketamine cream
Apr 20, 2011
[QUOTE=kellyevans40;4735831]Hi KLana, on Tuesday my doctors office ordered it he said normally it takes a week to get it. That Friday UPS delivered it to my door. It only took 3 days for me. I am in Fl its not to far from AL so maybe thats why I got it so fast I dont know really. I know on wednesday someone from the company called me for my insurance information and to make sure they had the correct address. Thanks for the good luck tomorrow.
Kelly[/QUOTE]

Just heard from them and I should have it in a week! They said one to two days once they compound it. Yes!
Re: Ketamine cream
Apr 20, 2011
Oh congrats!!!!!! I love the cream as soon as I put it on I can feel it starting to work after about 5-10 mins I am good full affects numb with a slight warmness yes.
Kelly
Re: Ketamine cream
Apr 20, 2011
I can't wait. I had a cream compounded by a local pharmacy here and it helped so much. My dr. did say the compound at the AL pharmacy was a bit different so I hope it works the same. I just had a little jar because of the cost and it was like gold. At first I didn't realize how much it helped until I ran low and stopped using it every day. It is as good as the blocks (when they were working). I'll be looking for the fed ex guy!
Re: Ketamine cream
Apr 27, 2011
Okay, the pharmacy in Alabama that I used sent me something called RSD 1% spray. Odd, I thought, but I'll spray it and see if it helps.

:dizzy::eek: OMG!!!!! My burning went through the roof!!! My foot which is usually red/dusky/purplely turned FLAMING RED and I thought the burning before was bad. :mad: I called the pharmacy and they would not tell me what exactly was in it, but they did say it didn't have anything the same as my old RX except lidocaine.

So, my 1st cream that I loved, had Ketamine, Amitriptylin, Guanethidine, and lidocaine in it. It worked.

THis crap cost me $88 and for the last hour my foot has been on FIRE worse than ever. Now I look forward to the same old burn. I sprayed it on the other foot and it burned a little, but not to the same extent as my RSD one. I sprayed on my arm (rsd one) and it burned too, but not as bad as the foot (worse symptoms for RSD normally). I don't know what is going on.

SO I called my local pharmacy that did the cream and asked for a refill. It cost me 2x as much, but at lease it worked.
Re: Ketamine cream
Apr 28, 2011
It is still burning today! I went 6 hours yesterday in level 9 pain before I finally took the last bit of my ketamine cream from old pharmacy and put it on foot. It did help some, but now burning is back again and I have no more cream until tomorrow when the refill will be ready.

:mad: What were they thinking? I was trying to get rid of the burning pain, not make it worse!

I did find out that the RSD 1% spray has a lot of alcohol in it. THe pharmacist said that could be the cause of the bright red foot and intense burning. Ahhh.... DUH!!! Who puts alcohol in a spray for someone with RSD?
Re: Ketamine cream
Apr 29, 2011
Kelly

Sorry for your pain where they implanted your SCS and hope the cream helps with the pain. How bad is the pain and how soon after you had your SCS done. Is your SCS working well for you.

Reason I ask is my PM Dr. wants to implant a SCS now going on a year now and I told him that what has happen to is what will happen to me and I am done having pain start up in new places. All my other Drs. have told me no more surgery's unless in is a life or death matter. My crps type II has spread in my 2 legs and other arm in the past 2 months. This started in my right hand, and wrist 4 years ago.
Re: Ketamine cream
Apr 29, 2011
Hi hurting,
I really started noticing more that the pain from surgery never went completely away, I just had my scs implanted dec 2010 and revision surgery in jan, Yes my scs works well I am still glad I got it even with the spread to my back. I am at least able to walk around now. hope this helps
kelly





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