Is somobody Heard about the new treatment with Topically applied MIDODRINE 0,2%.
Read T.E.A erythromelalgia Association on novembre 2015
Tell me Please if you havé information concernant this médecine. Tank you
Melodie
Hi Melodie, I read about midodrine cream too, and intend to ask my neurologist to prescribe it this week. I’ll let you know if it helps.
Smiles, Beth L.
Get us informed about your result with this cream !
Thank you very much to let me know if this cream is effective.I don't know if it is possible to find it in France ....
Beth L said:
Hi Melodie, I read about midodrine cream too, and intend to ask my neurologist to prescribe it this week. I'll let you know if it helps.
Smiles, Beth L.
For Melodie, where are you in France ? Je suis à Nantes. J'ai pu avoir la crème amitriptiline ketamine au CHU après quelques mois en leur montrant les articles de la mayo clinic à ce sujet. Ils sont ouverts à de nouvelles choses tant qu'on leur fournit des articles attestant de l'efficacité.
Carine
For Carine I live in Vence near Nice. J’ai pu aussi avoir l´amitriptiline/ketamine au CHU de Grasse après avoir été à Paris à Cochin où comme vous j’avais montré l’article de Mayo.
Attendons donc de savoir si la Midodrine est vraiment efficace. Pour l’instant sur le web je ne l’ai trouvée qu’en comprimés. Quelle galère cette maladie !!! Contente de vous connaître. Comment peut-on échanger nos mails en privé ? Cordialement. Melodie
Carine said:
For Melodie, where are you in France ? Je suis à Nantes. J'ai pu avoir la crème amitriptiline ketamine au CHU après quelques mois en leur montrant les articles de la mayo clinic à ce sujet. Ils sont ouverts à de nouvelles choses tant qu'on leur fournit des articles attestant de l'efficacité.
Carine
Hi Melodie & Carine, I have been on the amitriptyline and ketamine cream for several weeks. It has not helped me. That is just my experience, however. Perhaps it will work for you. Mais cette creme est tres chere ici! Bonne chance!
Beth L. (Etats Unis)
Carine said:
Get us informed about your result with this cream !
Melodie , you can join me via facebook if you have :
https://www.facebook.com/carine.lesage.96
Beth : For me, the ami ket cream is working, I rub 6 to 12 ml a day on my feet, and with this I can sleep without fan for exemple. My EM is better in winter apparently, but I must often put water on my feet when I walk, even with the cream. But With cream + water, I can walk 2 hours !
Carine,
I am glad to hear the amitryptiline/ketamine cream works for you. I went to Mayo last spring, where my EM was diagnosed. I got the cream but it didn't seem to help much.
Tracy
Tracy, it is not a miracle, but without this cream, I was out of function !
Now, I'm trying to put curcumin on my feet !
Carine
I will put steak on my feet and fish on my hands if it helps…(trying for a bit of levity here)
Beth
Do I need a prescription for the cream??? I hate winter, I can't sleep without my fan :/ and it's too cold to turn it on...
Carine said:
Melodie , you can join me via facebook if you have :
https://www.facebook.com/carine.lesage.96
Beth : For me, the ami ket cream is working, I rub 6 to 12 ml a day on my feet, and with this I can sleep without fan for exemple. My EM is better in winter apparently, but I must often put water on my feet when I walk, even with the cream. But With cream + water, I can walk 2 hours !
Sharitypopo, If you Google “compounding pharmacy” and the name of your city or state, you will get a listing of pharmacies in your area that will compound the amitriptyline/ketamine cream or the midodrine cream once they receive a prescription from your doctor. These pharmacies will also mail you your compounded meds on request. Hope this helps,
Beth
My feet are yellow but seems to be less painful !
Bonjour Carine. Vous avez pu essayer la crème Midodrine c’est pour cela que vos pieds sont jaunes et moins douloureux ??? Comment l’avez-vous obtenue ? J’ai RV le 23 décembre au Cenre Anti doleurs et j’aimerais donner des renseignements concrets… Je n’ai pas réussi à vous joindre sur Facebook
J’attends avec impatience de vos nouvelles. Cordialement
Bonjour Mélodie,
non, je mets du curcuma !! J'ai demandé au centre anti douleur d'enlever l'amytriptiline de ma crème pour ne garder que la kétamine par ailleurs.
J'ai vu une nette amélioration des douleurs ces deux dernières semaines, en faisant les choses suivantes :
- du curcuma (type curcumax en bouteille) : deux à 4 cuillères à soupe par jour + deux fois en massage sur mes pieds (qui sont donc jaunes)
- 15 minutes de méditation pleine conscience par jour.
Franchement, j'ai baissé de deux points dans l'échelle de la douleur juste en faisant ça ! Je suis passée du coup à 2 à 3 fois par jour de la crème contre 5 fois avant ça !! Assez incroyable je trouve comme traitement. Je vais continuer un mois ou deux voir si cela se continue ainsi avant d'en parler au CHU. Je n'ai pas essayé la crème midodrine car j'ai déjà celle à la kétamine que je trouve bien.
Carine
I just filled my prescription for Midodrine 0.2% cream. I will update you as I use it and let you know the outcome. My neurologist was agreeable when I requested the prescription.
Thanks!
Bootcamper,
I am very interested in how you do with the Midodrine cream. My doctor was hostile to the idea when I proposed it. He didn't flat out say he wouldn't fill the prescription, but it certainly seemed like he didn't want to. I asked him if Midodrine was similar to the compounded cream he had previously prescribed that included Clonidine, so there is some discussion of that in his answer. He wrote the following:
Midodrine and clonidine have opposite effects on alpha receptors. Midodrine is an alpha 1 agonist and is a vasoconstrictor; typically in all pain studies, when vasoconstrictors are applied locally then this intensifies pain. Clonidine is an alpha 2 agonist and has pain relieving properties while at the same time improving blood flow. There is no pain condition that we ever treat by giving a vasoconstrictor, and the mechanism of erythromelalgia typically involves sodium channel defects.
So, there you go. He seems to think it would make the pain worse and wasn't amenable to the idea. I'm interested to know your experience.
Good info. The study posted in TEA, November 2015 from the Mayo Clinic was very interesting and my doc found it very insightful. There were only 12 on the study and 10 found improvement. I will wait until I have a flare to use it and see what happens. I'll keep you posted.
Thanks
Yeah, I sent my doc the study, too. He said he couldn't rely on a sample that small and exclude a placebo effect. Definitely let us know how it works for you.