My DMF adventures

[Bill]

Sorry DMF wasn't for you, Nick. I am a bit over three months short of five years of treatment with an excellent result and no loss of efficacy. If anything, it is working better for me now than it ever has. I hope you can wrangle an effective treatment for yourself. Keep trying. As for hair loss, I did lose hair when my disease was out of control, so I see DMF as protecting me from hair loss. I guess we are all different.

Cheers

[ImtheIinteam]

Update: I stopped the Otezla by tapering it off over a few days--big mistake.  Every other time I started or stopped it, I did so much more gradually, even though it's not supposed to cause severe rebound reactions.  It did with me though, and my dermatologist started me on Tremfya.  Two shots in, I'm not back to where I was on Otezla, but I'm better than the full body blowout I had coming off of it.  I also tried eating oysters as zinc supplements were hurting my skin, but it seems that shellfish affect me as well.  Also, I was taking small doses of ALA every few hours three days a week, and unless you take Biotin with it, it can contribute to hair loss.   I wasn't on ALA the second time I tried DMF, but that fact certainly made the hair loss worse last year at this time.  At least this is the first time I'm not noticeably worse in the weeks following a dermatology appointment.

[Bill]

Hope it works for you, Nick. Anyone who thinks they can do some research to find all the answers is full of it. Your efforts in trying all sorts of things is the commendable norm. At least your dermatologist seems to have lots of options for you.

[jiml]

Good to know the Tremfya is working for you and you are feeling positive about it.
Love the detail in your update I’m just confused as to what ALA is

Good luck with tremfya long may it work for you
Jim  

[Fred]

Good luck with the Tremfya.

Don't forget you're welcome to start a new thread about your journey.

[ImtheIinteam]

Thanks Fred, I will if Tremfya seems to be the way forward.  I'll be 12 weeks in and take my third shot next week, but when I relapse it's as bad as ever.  Jim, ALA is alpah-linoleic acid, which is in flax seeds.  Some people take a gram in supplements to detoxify (there's an overused word), but I was only on a 12.5mg regimen 7 times a day for three days at a time.  I've stopped all that until a week after my next shot so I can get a better feel for what's working and what's wasting my money.

[ImtheIinteam]

I would start a new thread, but I have an appointment tomorrow and am hoping to try something new. My fifth dose of Tremfya "wore off" for lack of a better term within two weeks. I give shots to others at work, so it didn't go intradermal instead of subcutaneous (which a previous dose may have). Protopic works well, but the reaction when it wears off is almost as bad as steroid withdrawal. I seem to have issues with histamine and oxolates in food, which I suspect may get worse if I get on a less specific biologic like Humira. We shall see what other drugs have a bridge program like Tremfya and Otezla do so I don't waste my money on something that doesn't work...

[Bill]

Keep trying, Nick. I hope you get onto something good.