YES! Type "Otezla" in the search box for the site (top right). I have lots I could share if you want more info than what I included in my last post.
The most important advice: I would STRONGLY suggest you talk to your doc about the right acid reducer to go along with Otezla for the first 4-6 weeks. Zantac was right for me but I had to avoid taking it close to bed time because of other med interactions. So please do ask your doc or pharmacist. The nauseau and gas that occur in the beginning (that are all but over now I'm in my 9th week) are the worst. I've never previously taken a medicine where I could pretty much check off the worst/top 5 side effects; yup, yup, aha, right, yes... But take the right precautions and try and get through the first few weeks. It got MUCH easier. The trials of the medicine looked at results at week 16. So keep that on your horizon as a point at which to make a judgment about how things are going.
Trisha33 said:
None of the TNF's worked very well for me. So, I started on Otezla today.....we shall see. Any Otezla stories?
Seenie, You got this!! What an amazing team you have to know you can do better then OK! My doctor is straight nosed as well and I need that in my life. I need someone to say, we can do better then this! You have that. I hope Humira changes your life, but at least brings you more relief. Isn't that the game? One more day with some relief? One more morning where you feel better when waking? I would be scared too, but you have this!
Thanks, amielynn, sweet of you to respond. I have that amazing PsA team, and I have my great friends at LWPsA. I am so fortunate. You are all wonderful.
Thank you, MacMac. I'm trying to adjust my mindset, and I'm starting to feel a bit more optimistic. Of course, it helps to have a great support group like we have here.
Seenie, I absolutely LOVED Humira. It was my first bio and it worked so well for me for a year or so. I didn't realize how well it worked until it didn't anymore. I hate to sound patronizing, but I really think you'll be fine on Humira. Remember that we don't very often hear people say that they tried it and it didn't do anything for them. I just know that in 4 months you'll be saying how awesome it has been working ofr you.
Come to think of it, Grumpy, that is true what you say about feedback from Humira. I so hope that you are right. I’m in quite a funk right now, and I hurt. Everywhere. It’s as if I’ve just given up with the “I’m OK” routine. I’ve dropped the mask. I can no longer pretend that I’ve got this damned disease cornered.
I’m waiting for word of when I might expect my first script of Humira. I’m impatient.
I know exactly how you are feeling. There comes a time when we all feel tired of being a "trooper" and being strong. The last year has been such a fight for me to make it through each day and feel like it was worth living. It drags you down and drags your family down too. It gets so freaking frustrating!! This disease and the changes it makes in your life are devastating, and when you get things just so, and are able to cope physically and emotionally that balance is so delicate. Then something changes and it all goes to pot. It takes a while to get balance everything back out again. It s a struggle and its tiring and you already feel like crap, so we have to find some brightness in the dark. You are such a wonderful person, bright and funny, warm and caring, strong and smart. It'll tkae time, but I know you will be able to put all of the pieces back where they were and find your confidence again.
Seenie said:
Come to think of it, Grumpy, that is true what you say about feedback from Humira. I so hope that you are right. I'm in quite a funk right now, and I hurt. Everywhere. It's as if I've just given up with the "I'm OK" routine. I've dropped the mask. I can no longer pretend that I've got this damned disease cornered. I'm waiting for word of when I might expect my first script of Humira. I'm impatient.
Don’t know how I missed this seenie. Am sad that enbrel didn’t work as you wanted but very happy that you’re skipping (ok hobbling) onto the humira train. Fingers crossed for you and hope that you manage to stay positive. You have been ‘there’ for me from the second I joined this site as I imagine you were for the others posting here, so if there’s anything we can do …
In the last year, I've realized that for me, getting it back together means it's okay to say I'm in pain if someone asks. The few folk I care about in this office are the ones who ask anyway--and they've all told me they can tell when I'm in pain so why not? Paul, who knows me better than I know myself, says it's in my eyes. When I look in the mirror, they don't look any different but evidently, these hazel/green jobs are my signal that something is wrong.
I've also realized from this board that that cornering the disease means knowing my limitations. I stayed home on Monday resting this idiot left (incorrectly repaired ) arm and shoulder because over the weekend, it became swollen and nothing I did relieved the pain. I knew if I didn't, I would end up doing more damage and swelling and hurting longer than taking the day. I've been banging on the computer all week but I can move the arm and it's not swelling.
One other thing. Having this damn disease means you're already a strong person. Being strong means knowing it's okay to have days when you don't have that strength.
You're everything Grumpy said (and I think) you are, even now while this disease makes you think you're not.
Your lifejacket, my friend, is the love of all the people around you .... those physically close and those here in this amazing virtual world. You are gonna be getting back to just fine as soon as that Humira is coursing round your body kicking some inflammatory ass!
Well I am not sure who to agree with first, everyone made some great points! Golfnut saying you were there for her, you were the first person I connected with too! Understanding my job and being so personal and caring. Sixcatlawyer"s comment about her hubby saying her eyes tell it all, is exactly how my hubby describes my "life jacket" (aka Humira) effect on me. Not having the damage you have makes me unable to completely understand the hurdles you have already overcome, but I would gladly hold hands and take the next leap with you any day! Hopefully Humira leads you back to solid ground so you don't have to float around very long! Thanks for condolences as well, that was appreciated!
Seenie, my friend! Its been way too long (my fault).
I hope, hope, hope that the Humira works! It likely will. Take care of you and never ever settle for "just ok." You advocate so well for all of us on here....time to advocate for yourself just as rigorously!
I am overwhelmed by the kindness you've all shown me this week! I really wanted to be told "suck it up, buttercup" (which I knew I needed, and wanted!) but what I got instead was an outpouring that has me blushing. I'm feeling better today, so really, I think I need to close this discussion to further comments. Thank you so very much: you've made me feel loved and valued and supported, and again I am marveling at what great people we have here, and the incredible power of the internet.
When I first came to Ben's Friends, I was in pain, frightened and confused. The good people here first sorted me out with information, and then they gave me a wonderful gift: the knowledge and skills to advocate for myself. That gift, as they say, is one that keeps on giving: it has changed how I deal with my disease, and I hope that I have passed some of those skills on to others.
This really is a remarkable place, and what makes it so is you. Thank you again, my dear friends.