# Medication that works

**URL:** <https://forum.livingwitherythromelalgia.org/t/medication-that-works/2445>\
**Category:** What's New With You?\
**Created:** [June 6, 2017, 11:29am UTC](https://forum.livingwitherythromelalgia.org/t/medication-that-works/2445 "2017-06-06T11:29:59Z")\
**Posts on this page:** 20\
**Page:** 1

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**Author:** ![herdfan](https://avatars.discourse-cdn.com/v4/letter/h/8c91f0/32.png) [@herdfan](https://forum.livingwitherythromelalgia.org/u/herdfan)\
**Post date:** [June 6, 2017, 11:29am UTC](https://forum.livingwitherythromelalgia.org/t/medication-that-works/2445/1 "2017-06-06T11:29:59Z")

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This is my first post and it’s a very positive one. After 4 years and trying many different therapies and drugs. I can say I have found relief. I went to Cleveland Clinic where I saw Dr. Bartholomew in the vascular dept. He was very knowledgeable about EM and knew just what it was. He did lots of bloodwork to see if there were underlying causes. He first tried compounded cream which didn’t help and also caused unwanted reactions. On my next visit he gave me cypropenzaprine which is an antihistamine. After a few days I started to notice a decrease in the severity of flares. I was cautiously optimistic. After 2 weeks there was definitely improvement. I’ve been taking it now for 2-1/2 months. I have no side effects and my flares are few and not nearly as severe. They normally just subside in a short time. What a relief I’m so thankful. I feel extremely blessed to have a solution. I pray this info helps others as well.

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**Author:** ![kcmiltong](https://avatars.discourse-cdn.com/v4/letter/k/779978/32.png) [@kcmiltong](https://forum.livingwitherythromelalgia.org/u/kcmiltong)\
**Post date:** [June 6, 2017, 2:08pm UTC](https://forum.livingwitherythromelalgia.org/t/medication-that-works/2445/2 "2017-06-06T14:08:37Z")

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I could not find any reference to the medication you mentioned. Is your spelling correct? Thanks

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**Author:** ![virgo3](https://avatars.discourse-cdn.com/v4/letter/v/51bf81/32.png) [@virgo3](https://forum.livingwitherythromelalgia.org/u/virgo3)\
**Post date:** [June 6, 2017, 4:39pm UTC](https://forum.livingwitherythromelalgia.org/t/medication-that-works/2445/3 "2017-06-06T16:39:33Z")

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> [@herdfan](#):
>
> cypropenzaprine

hi can you advise if you also tried benadryl?

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**Author:** ![virgo3](https://avatars.discourse-cdn.com/v4/letter/v/51bf81/32.png) [@virgo3](https://forum.livingwitherythromelalgia.org/u/virgo3)\
**Post date:** [June 6, 2017, 5:00pm UTC](https://forum.livingwitherythromelalgia.org/t/medication-that-works/2445/4 "2017-06-06T17:00:36Z")

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here is list of antihistamines… do not see the name you mention can you reconfirm it please? [https://www.drugs.com/drug-class/antihistamines.html](https://www.drugs.com/drug-class/antihistamines.html)

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**Author:** ![virgo3](https://avatars.discourse-cdn.com/v4/letter/v/51bf81/32.png) [@virgo3](https://forum.livingwitherythromelalgia.org/u/virgo3)\
**Post date:** [June 6, 2017, 9:35pm UTC](https://forum.livingwitherythromelalgia.org/t/medication-that-works/2445/5 "2017-06-06T21:35:06Z")

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cyproheptadine is this what you mean?

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**Author:** ![kcmiltong](https://avatars.discourse-cdn.com/v4/letter/k/779978/32.png) [@kcmiltong](https://forum.livingwitherythromelalgia.org/u/kcmiltong)\
**Post date:** [June 6, 2017, 11:53pm UTC](https://forum.livingwitherythromelalgia.org/t/medication-that-works/2445/6 "2017-06-06T23:53:56Z")

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Or this? Cyclobenzaprine, this is not an antihistamine.

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**Author:** ![Beth\_L](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/beth_l/32/840_2.png) [@Beth\_L](https://forum.livingwitherythromelalgia.org/u/Beth_L)\
**Post date:** [June 7, 2017, 9:26am UTC](https://forum.livingwitherythromelalgia.org/t/medication-that-works/2445/7 "2017-06-07T09:26:10Z")

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Can you check the spelling of this drug you are on? I can’t find it online. Do you mean cyclobenzaprine? That’s a muscle relaxant.

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**Author:** ![herdfan](https://avatars.discourse-cdn.com/v4/letter/h/8c91f0/32.png) [@herdfan](https://forum.livingwitherythromelalgia.org/u/herdfan)\
**Post date:** [June 8, 2017, 1:54pm UTC](https://forum.livingwitherythromelalgia.org/t/medication-that-works/2445/8 "2017-06-08T13:54:54Z")

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Cyproheptadine. Sorry for the misinformation

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**Author:** ![herdfan](https://avatars.discourse-cdn.com/v4/letter/h/8c91f0/32.png) [@herdfan](https://forum.livingwitherythromelalgia.org/u/herdfan)\
**Post date:** [June 8, 2017, 1:56pm UTC](https://forum.livingwitherythromelalgia.org/t/medication-that-works/2445/9 "2017-06-08T13:56:36Z")

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Benadryl doesn’t help me. There are different classes of antihistamines.

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**Author:** ![virgo3](https://avatars.discourse-cdn.com/v4/letter/v/51bf81/32.png) [@virgo3](https://forum.livingwitherythromelalgia.org/u/virgo3)\
**Post date:** [June 8, 2017, 2:10pm UTC](https://forum.livingwitherythromelalgia.org/t/medication-that-works/2445/10 "2017-06-08T14:10:07Z")

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thanks did you get water retention from the one prescribed?

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**Author:** ![Mike1022](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/mike1022/32/56_2.png) [@Mike1022](https://forum.livingwitherythromelalgia.org/u/Mike1022)\
**Post date:** [June 17, 2017, 1:12am UTC](https://forum.livingwitherythromelalgia.org/t/medication-that-works/2445/11 "2017-06-17T01:12:36Z")

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What is your daily dosage level per day? How many times a day do you take it? Does it make you overly tired?

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**Author:** ![Livingwith](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/livingwith/32/2127_2.png) [@Livingwith](https://forum.livingwitherythromelalgia.org/u/Livingwith)\
**Post date:** [January 22, 2018, 6:40am UTC](https://forum.livingwitherythromelalgia.org/t/medication-that-works/2445/12 "2018-01-22T06:40:22Z")

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I was diagnosed with EM in 2017, my doctor told me to take a aspirin a day. Has anyone heard of that

 ![image](https://canada1.discourse-cdn.com/flex027/uploads/ben_erythromelalgia/original/2X/d/d40c4831d1f793f7a668939be31c3fc4e863ac0b.jpeg) ![image](https://canada1.discourse-cdn.com/flex027/uploads/ben_erythromelalgia/original/2X/2/21b72ebd6a9afce56c40354d5763e14de6d05232.jpeg)

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**Author:** ![monalisa](https://avatars.discourse-cdn.com/v4/letter/m/4bbf92/32.png) [@monalisa](https://forum.livingwitherythromelalgia.org/u/monalisa)\
**Post date:** [January 23, 2018, 6:09pm UTC](https://forum.livingwitherythromelalgia.org/t/medication-that-works/2445/13 "2018-01-23T18:09:37Z")

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I just found out I have this 12/14/2017. Aspirin is what they told me too. I have to be careful taking aspirin.

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**Author:** ![CarterDK](https://avatars.discourse-cdn.com/v4/letter/c/0ea827/32.png) [@CarterDK](https://forum.livingwitherythromelalgia.org/u/CarterDK)\
**Post date:** [January 26, 2018, 6:08am UTC](https://forum.livingwitherythromelalgia.org/t/medication-that-works/2445/14 "2018-01-26T06:08:50Z")

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Aspirin is a successful treatment for erythromelalgia when symptoms are secondary to a myeloproliferative disorder, namely polycythemia vera and essential thrombocytosis. Both are myeloproliferative neoplasms (MPNs), a type of slow-growing blood cancer. Aspirin is generally ineffective for erythromelalgia absent said cancers.

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**Author:** ![Livingwith](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/livingwith/32/2127_2.png) [@Livingwith](https://forum.livingwitherythromelalgia.org/u/Livingwith)\
**Post date:** [January 26, 2018, 3:55pm UTC](https://forum.livingwitherythromelalgia.org/t/medication-that-works/2445/15 "2018-01-26T15:55:13Z")

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Yes! I thought the same  
Doesn’t aspirin thin your blood out?

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**Author:** ![Livingwith](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwitherythromelalgia.org/livingwith/32/2127_2.png) [@Livingwith](https://forum.livingwitherythromelalgia.org/u/Livingwith)\
**Post date:** [January 26, 2018, 3:55pm UTC](https://forum.livingwitherythromelalgia.org/t/medication-that-works/2445/16 "2018-01-26T15:55:59Z")

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Thank you for sharing your response! 🙂

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**Author:** ![Machel](https://avatars.discourse-cdn.com/v4/letter/m/f17d59/32.png) [@Machel](https://forum.livingwitherythromelalgia.org/u/Machel)\
**Post date:** [July 15, 2018, 7:18pm UTC](https://forum.livingwitherythromelalgia.org/t/medication-that-works/2445/17 "2018-07-15T19:18:20Z")

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Hi. Just wondering if Cyproheptadine is still working for you.?

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**Author:** ![herdfan](https://avatars.discourse-cdn.com/v4/letter/h/8c91f0/32.png) [@herdfan](https://forum.livingwitherythromelalgia.org/u/herdfan)\
**Post date:** [July 17, 2018, 10:40pm UTC](https://forum.livingwitherythromelalgia.org/t/medication-that-works/2445/18 "2018-07-17T22:40:03Z")

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It is working but not as well as I’d like. It makes the episodes more tolerable and less frequent. When I have an especially bad few days, I take an additional dose for a week and that seems to help.  
I hope you are doing well.

Blessings to you,

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**Author:** ![Machel](https://avatars.discourse-cdn.com/v4/letter/m/f17d59/32.png) [@Machel](https://forum.livingwitherythromelalgia.org/u/Machel)\
**Post date:** [July 18, 2018, 11:23pm UTC](https://forum.livingwitherythromelalgia.org/t/medication-that-works/2445/19 "2018-07-18T23:23:28Z")

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Thank you for the reply. I’m glad to hear it is helping some but wish it was helping more for you. I was curious as I was seen at Cleveland Clinic as well but by a different Dr. I didn’t find relief with the one compound she prescribed and I refuse to fill the other compound as insurance won’t cover due to the Ketamine. I will see what’s next on her list. Hope you begin to have more better days.

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**Author:** ![herdfan](https://avatars.discourse-cdn.com/v4/letter/h/8c91f0/32.png) [@herdfan](https://forum.livingwitherythromelalgia.org/u/herdfan)\
**Post date:** [July 19, 2018, 2:34pm UTC](https://forum.livingwitherythromelalgia.org/t/medication-that-works/2445/20 "2018-07-19T14:34:43Z")

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I tried compounding creams first but did not help me. I think they always try that first. Maybe you could suggest trying cyproheptadine. I pray you find great relief.

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