@anon16865673 - Did you adjust to the fatigue of cyproheptadine? I recently tried it. Really not thrilled with the side effects (2 doses in).
edit - Do you have thoughts on how this compares to benadry, in terms of positive effects and side effects?
edit 2 - Also that’s interesting that you thought steroids made you worse but cyproheptadine helped you. Do you have an opinion on this? maybe cyprohelptadine has a more specific anti-inflammatory mechanism?
Thanks.
I never had any issues with fatigue but it is an anti-histamine so it definitely can cause some state of somnolence. I am in medical school so I usually run very low on sleep and need energy to study all day and haven’t noticed any issues with it. I also do not drink caffeine so I don’t try to offset it with anything.
Cyproheptadine has very little in common with benadryl when it comes to EM. They are both antihistamines but cyproheptadine is a first gen medication so it has more secondary effects. It is also used as an anti-depressant and serotonin antagonist. I take it for the serotonin blocking properties which seems to help my EM. I also take a feverfew supplement with it to provide further serotonin antagonist activity.
Cyproheptadine is not in the same drug class as steroids and is not an anti-inflammatory. Antihistamines block histamine, so they only mediate mast cell mediated allergic reactions. They don’t touch the inflammatory mechanisms. It helps me for the serotonin blocking properties. In retrospect, flushing is a very common side effect of high dose steroids and actually is one of the most common symptoms on high and low doses so that could explain why it causes so many problems for those with EM. The best benefit of steroids for EM is not necessarily the anti-inflammatory effects but rather the immunosuppresive effect, which can help EM with an autoimmune etilogy.
Hope this helps!
Thank you!
Yes after a few doses of periactin, I tolerate it well.
Thanks for explaining that about steroids.
Glad I tried it. It helps me but I possibly need highest dose, or adding ivig which I hope (I think?) stabilizes mast cells as potent anti inflammatory. Am I right in thinking that IVIG (we are trying 2g/kg/mo for 6 mo) will help with inflammatory contributions AND autoimmune contributions, while steroids mostly help with autoimmune contributions?
Yes, steroids make me flush. Though, I might have to get a dose of steroid so that I can tolerate the IVIG infusion itself, and I’m a bit concerned about that.
IVIG is just IV antibodies from various donors so it will help combat autoimmune conditions where antibodies are a deficiency causing symptoms so I wouldn’t expect it to have any effect on inflammation. Steroids do hamper inflammation but what I was getting at was that at high doses they also have immunosuppressive effects. Steroids are used as a cheap immunosuppressant while IVIG is a much more expensive treatment but has less side effects and also a different mechanism.
OK , I am having luck with Aspirin , Anti-histamines & tricyclics . I have to stay in a cool environment . Fans work and cold water helps. Otherwise , it is probably best , not to try any creams or other types of medicines.