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.
I could not find any reference to the medication you mentioned. Is your spelling correct? Thanks
hi can you advise if you also tried benadryl?
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
cyproheptadine is this what you mean?
Or this? Cyclobenzaprine, this is not an antihistamine.
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.
Cyproheptadine. Sorry for the misinformation
Benadryl doesn’t help me. There are different classes of antihistamines.
thanks did you get water retention from the one prescribed?
What is your daily dosage level per day? How many times a day do you take it? Does it make you overly tired?
I was diagnosed with EM in 2017, my doctor told me to take a aspirin a day. Has anyone heard of that
I just found out I have this 12/14/2017. Aspirin is what they told me too. I have to be careful taking aspirin.
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.
Yes! I thought the same
Doesn’t aspirin thin your blood out?
Thank you for sharing your response!
Hi. Just wondering if Cyproheptadine is still working for you.?
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,
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.
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.