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 butt cheek feel nice warm numb. thanks for any info
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....
The Following User Says Thank You to free1day For This Useful Post: kelly4004 (04-16-2011)
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
The following user gives a hug of support to kelly4004: free1day (04-16-2011)
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.
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.
The Following User Says Thank You to kelly4004 For This Useful Post: K_Lana (04-17-2011)
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.
Just FYI, my doc said there is no risk or side effects from using it topical. The danger is only if it is ingested.
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?
the pharmacy address is birmingham AL. hopefully your bcbs will cover to
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...
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
the pharmacy address is birmingham AL. hopefully your bcbs will cover to
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.