# Did anyone need to wean off meds before going to Mayo? **URL:** \ **Category:** General\ **Created:** [May 10, 2016, 3:29pm UTC](https://forum.livingwitherythromelalgia.org/t/did-anyone-need-to-wean-off-meds-before-going-to-mayo/1299 "2016-05-10T15:29:35Z")\ **Posts on this page:** 6\ **Page:** 1
**Author:** ![Amy](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/amy/32/931_2.png) [@Amy](https://forum.livingwitherythromelalgia.org/u/Amy)\ **Post date:** [May 10, 2016, 3:29pm UTC](https://forum.livingwitherythromelalgia.org/t/did-anyone-need-to-wean-off-meds-before-going-to-mayo/1299/1 "2016-05-10T15:29:35Z")
Good Afternoon, I have a Mayo Clinic appointment on 6/9/16 and they want me to be off of my meds for 2-3 days. It seems like lyrica, and my cytotec need to be stopped for 2-3 days. I take 75mg of lyrica TID and 200micrograms of cytotec TID. I have a call into my doctor for guidance. I understand why I need to do this, but I am not at all looking forward to it. Anyone have to do this? Thanks, Amy ---
**Author:** ![Noelia](https://avatars.discourse-cdn.com/v4/letter/n/49beb7/32.png) [@Noelia](https://forum.livingwitherythromelalgia.org/u/Noelia)\ **Post date:** [November 9, 2016, 2:19pm UTC](https://forum.livingwitherythromelalgia.org/t/did-anyone-need-to-wean-off-meds-before-going-to-mayo/1299/2 "2016-11-09T14:19:56Z")
Amy, how did your appointment go? ---
**Author:** ![Amy](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/amy/32/931_2.png) [@Amy](https://forum.livingwitherythromelalgia.org/u/Amy)\ **Post date:** [November 15, 2016, 1:31am UTC](https://forum.livingwitherythromelalgia.org/t/did-anyone-need-to-wean-off-meds-before-going-to-mayo/1299/3 "2016-11-15T01:31:26Z")
Hi, my appointment consisted of lots of tests without any answers or suggestions. They would not render me an EM diagnosis. I did wean off all meds before my appointments. Doing that was actually ok. I’m now working on getting into Hopkins. I want a skin punch biopsy of my toes and thighs. My thighs burn! ---
**Author:** ![rayofhope](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/rayofhope/32/2077_2.png) [@rayofhope](https://forum.livingwitherythromelalgia.org/u/rayofhope)\ **Post date:** [December 2, 2016, 10:05pm UTC](https://forum.livingwitherythromelalgia.org/t/did-anyone-need-to-wean-off-meds-before-going-to-mayo/1299/4 "2016-12-02T22:05:38Z")
Did you go to the Mayo Clinic in MN? Dr. Davis? I am on a waiting list for a year to see him ! I am convinced that no answers will come out of that appointment just you have EM which I already know. John Hopkins in Maryland doesn’t handle EM patients. I am curious why did they not render an EM diagnosis for you? What was the testing? When I talked to them on the phone they said sometimes its not EM. They asked for pictures of it and I sent it. I said all you have to do is put me near a heater and you will see for yourself. I can get EM to trigger very easily. Did they give you insight as to what they think it is then? ---
**Author:** ![Amy](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/amy/32/931_2.png) [@Amy](https://forum.livingwitherythromelalgia.org/u/Amy)\ **Post date:** [December 3, 2016, 5:52pm UTC](https://forum.livingwitherythromelalgia.org/t/did-anyone-need-to-wean-off-meds-before-going-to-mayo/1299/5 "2016-12-03T17:52:39Z")
Hi, I did not see Dr. Davis. I did see 2 other derms and a neurologist. The derms did see my pic of red toes, but said they would not “render me a diagnosis”. I have no idea why. I do not turn red near heat in fact I have been wearing socks and UGG boots lately to keep my feet warm. Who knows why . My local derm said its EM. Of course I taught him about EM and when he first saw my pics he said “no way”. John’s Hopkins does see EM. I am going to see Dr. Alhariri at JH who is a derm and has treated a few EM patients. I am stable right now - aspirin and cytotec . I’m going to see the doc anyway to see what he suggests Mayo did not give me any advice other than to see my local doctor about meds. I had the sweat test, EMG, Qsart, Qst - all considered normal. Essentially, Mayo thinks the majority of EM (85-90% is caused by small fiber neuropathy. They said I don’t have any neuropathy and they think its a possibility that my pain could be coming from my CNS. Make so sense to me though. Can my CNS trigger my toes to turn red at times? I am sick of all of the tests and docs - I’m just ready to go on with my life. Have you tried aspirin or cytotec? I take 325mg aspirin at 4 and 8 pm. When do you head to Mayo? Get off all of the meds that prevent you from sweating for 5-7 days before the tests. Amy ---
**Author:** ![rayofhope](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/rayofhope/32/2077_2.png) [@rayofhope](https://forum.livingwitherythromelalgia.org/u/rayofhope)\ **Post date:** [December 11, 2016, 7:06pm UTC](https://forum.livingwitherythromelalgia.org/t/did-anyone-need-to-wean-off-meds-before-going-to-mayo/1299/6 "2016-12-11T19:06:06Z")
Hi there Yes definitely keep at getting answers. Regardless of what it’s called its not normal. I hope that you can find more answers about this. I am on a waiting list for mayo and I’m told it could take up to a year for an appointment. I’m pursuing Cleveland C Kiki now.