So today i had my follow up with Dr Nguyen we talked about the aspirin and the Zyrtec that she put me on a month ago and how i have had no changes. She called her friend at Mayo clinic and for now have decided to try Effexor and aspirin and go off the Cymbalta. She also teaches at Mayo on wed and wants me to go with her maybe as early as next week and sit in a room full of doctors and tell them my story and about what’s been going on over the last year. She said bring all my photos and at no cost to me they just want to meet me and try to figure out together how best to maybe help. Shes also having them make a compound cream for my hands and feet to use twice a day. So i thought well here’s my chance to meet many doctors whom have at least treated others like us and ask them stuff and them try to help me. So i will keep all informed as this all plays out.
looks like you’re finally getting somewhere E that’s good! sounds like you’ve found a good doctor. Unfortunately i don’t think they are in the majority … or maybe that’s just me being pessimistic. keep us/me posted on how Mayo goes. I hope the compound cream helps. Ironically I’m on effexor now and thinking about switching to cymbalta or another antidepressant best wishes
A word of caution about coming off Cymbalta, there is a little known condition called Cymbalta Withdrawal Syndrome.
It only happens to about 20% of people who come off the med, but it’s incredibly nasty. I actually learned about it after I started going through it. I was on 30mg of Cymbalta for 90 days, it took 18 months to come off it.
Be very careful coming off the med, make sure you titrate down slowly and take a little time to look up the withdrawal syndrome so you can do your best to avoid it – although not many people actually get it so there shouldn’t be any serious worries, just be informed.
I hope you have good insurance, I have Medicaid, and they wouldn’t pay for the compound cream, even with Dr’s note saying it is medically necessary. Good luck!
standing_cat,
Oh wow it’s crazy how the medication trials are so broad. She thinks my body has adapted to the Cymbalta being on it for years now so this is why she wants to try the Effexor. I just dnt wanna be goin crazy in the transition phase. I figured let me to with her to Mayo sort of as a show and tell lol because it’s free she wants her colleagues to meet me and see what there thoughts are and what they would recommend that being said dosent hurt to just go and see it’s key work FREE hahaha so hey i will give it a shot. I will for sure let you know how it goes im eager to ask my own questions as well.
So thank you for the heads up i didn’t even think of this and i have been on the Cymbalta for years now. I dnt wanna throw my body in shock it already goes crazy if i forget to fill it and run out and have to wait 4 or 5 days to start again. She didn’t say to taper she just said to stop the Cymbalta and start the Effexor because i cant be on both so i will call and find out what I should do. I appreciate the info for sure.
So glad for you! It is really a breakthrough if doctors is willing to listen to your story and try to help. Although my dr listened to me and read up about em, believed me and send me to a specialist physician that formally diagnosed me with em, she still cannot remember the name and have difficulty to pronounce it! Please keep us posted.
Chriss99,
That’s terriable even with the dr saying you need it i hate dealing with ins stuff. Well i work for another hospital that’s big in AZ so im hoping my ins will be ok with me getting the cream, but we shall see. I also know there are people who have tried creams and have no luck so fingers crossed but i will let you know how it goes.
Frosti,
Ya unfortunaly for me to get a diagnosis i had to read many different things over the last couple of years and keep trying different doctors until i found this one who would even listen and who has at least some knowledge of the disease. Its just crazy to me with all that our world as learned and found cures for that this is still uncharted territory for most physicians. I glad you to have found someone who will listen it seems to be most of us have had to keep fighting for ourselves in order to finally get a diagnosis.
Mamma
Try the 81 mg aspirin once a day and in combo with at least 800 to 900 mgs of gabapentin broken up in increments of 3 or 400mgs twice daily? I take the coated aspirin with dinner. (with my vitamin regimen. )
best wishes