Today was my twice-yearly PsA check up. I went with the feeling that maybe I wasn't quite as well as I used to be: a little more aching, some back pain, more stiffness. I wasn't sure it was bad enough to call for a change of biologic, but I figured that I'd leave that up to the experts. I go to a specialty research clinic and they are beyond thorough. I figured they are better qualified to judge than I am.
After my detailed examination by my usual doc, which this time included ultrasound on several joints, the supervising researcher came in and asked me how I am. My reply was "I'm doing OK, but I'm not as good as I was six months ago." From the eye rolls, I assumed that my answer wasn't scoring well. As the one doc said, "I don't think you are doing well at all: three swollen and five tender joints, increased stiffness and fatigue and back pain isn't "doing OK"".
Anyway, the bottom line is that I'm jumping off the Enbrel barge and into the Humira boat. And despite what I tell so many people here about "If one biologic fails you, there are plenty more in the arsenal", I'm scared. And I'm shaking my head about the way denial seems to be my preferred state of mind. Have I ever mentioned how much I hate having PsA?
Welcome fellow passenger on the Humira train. I've only had Humira (please God, let it keep working), but it's been a miracle drug for me.
I also don't know that it's so much denial as it is doing okay, i.e., three swollen and five tender joints, increased stiffness, fatigue and back pain, IS okay compared to where we have been and where we could go even worse than where we are. What movie is it (Star Wars, maybe?) where one of the characters (Han?) says it's amazing what you can get used to?
You know what, Sixcat, you are right. I AM OK compared to where I’ve been, and it is, indeed, amazing what we can get used to, especially when it comes on gradually.
It’s so good, no it’s so GREAT that you are so happy with Humira. Think I might be lucky? Fingers crossed! (ouch)
Thanks for the comments, 6cl!
That is quite the thorough exam, including ultrasound and everything! Sometimes we need someone to state the obvious. It's tough to think that meds aren't working how they should be, but you're right - comparing to how things were before being properly medicated it feels good enough.
I'm on my first, and hoping that it lasts a while. I'm less than 2 years in on Enbrel and hoping, but doubtful, that I'll get 10+ years on it.
Well, Seenie, it's been how long? A little over a year? I'm not sure how long you've been on Enbrel. That's sad, though.....I know you, like all of us, had hoped and prayed Enbrel would do its magic for 10 or more years like it does for some! But, oh well, at least there's Humira.
I'm wondering--have they watched your white cell count? If so, may I ask, has it ever gone down to a dangerously low level? Because sometimes I think the low white cell count is one of the downsides of a biologic doing its job fending off the PsA.
As SCL and Stoney said, at least you're not in the horrible place you were before you started Enbrel. Hopefully, it'll never ever get that bad again. And, I've always wondered, if a biologic stops working and we switch biologics, is it possible to someday down the road return to the first biologic (your first "biologic love")?
I wish you the best of luck with Humira--I'll have my fingers and toes crossed for you!!!
I see my rheumy tomorrow. I am currently on Simponi which doesn't seem to be very effective. For the first day or two, it helps with the stiffness, but after that not so much.
The first biologic I used was Humira which worked somewhat; dr. wanted to prescribe once a week but insurance would not cover it. Apparently, Humira has been approved for RA weekly, but not PSA. Makes sense, right?? Next up was Enbrel; unfortunately I was allergic to it.
In addition to the biologics, I tried 4 oral medications to no avail. I was diagnosed about 2 1/2 years ago. Feeling very discouraged and looking for some happy words!
Trisha, I guess the happy words are “there are more biologics, with a variety of different ways of working, coming out every year”. And those are happy words, very happy words, to remind myself of as well.
GrandmaJ, I’ve been on Enbrel for two and a half years! Yes, time flies! And you are right. Compared to the way I was the first time I appeared at the clinic, yes I’mm still pretty good. And I need to be grateful that I have a doctor who isn’t satisfied with barely OK.
And so true what you say, Stoney: sometimes we DO need someone to tell us the obvious. Yup, you got that right.
Seenie, how luck you are to have such a great team of care! After all that time and effort you made to be pushy finally and not accept your fate you now have people who are willing to advocate even before you “have” to. What a change of situations!
Humira has been slowly winning me over Everytime! Great burst first inject but leary, as I had toe injections at same time, which one was doing the most majic but on shot 4 now more relief than ever. We all know playing the bio game is like the lottery but I hope you hit on this one too!
Seenie, I sincerely hope you are as fortunate with Humira as I have been.
So I needed the pep talk, too. It's cold and rainy in Kentucky this morning and I got chilled which means my neck, arms, righty hip and lefty shoulder hurt and I was feeling a bit sorry for myself.
Then I got on here and got some "positive waves" (one of our favorite movies is Kelly's Heroes. Donald Sutherland's character, Oddball, talks about positive waves a lot). I'm back to Humira works fine, you DO feel better overall, no, this is likely not the message that it's time for revision surgery on the shoulder. It's simply one of those human barometer days, snuggle up to the heating pad and blankie and motor on, slowly.
It's good to be a in group that understands the highs, lows and mental gymnastics of this disease.
Rachael, you have hit the head right on the nail. LOL That was the message I needed: I need to thank my lucky stars that I have a team that will say “Whoa, we need to do better than this”, especially when I don’t have a good sense of my own body. That’s one of the things that scares me about me. I think “I’m doing OK, but not as well as last year” and the real experts are shaking their heads. That’s the lack of body sense that got me where I am today. I am incredibly grateful that I have a medical team with more sense than I have for myself.
Sixcat, the positive waves are just what I need. I had a good sleep last night, and it’s a new day. The Humira folks will call today and the show will be on the road and maybe I’ll be feeling better soon. And my crack team wants to see me back in three months. How lucky am I?
I had my own Humira conversion almost two years ago. Enbrel was a wonderful friend but after a while he stopped writing. Never called. So I started hanging around with Humira and things have been going swell (not swollen). I've had a rough patch lately myself and while Humira is a good pal, she's often busier than she had expected--apparently I'm a demanding friend--so we're both now also hanging out with our new friend Otezla. O was a little problematic at first and really made his presence known. But now he's settled down and for the last nine weeks we've been in a nice little routine and we're all getting along so well together that we hiked 5 miles on Sunday.
Trisha33--you might try again on the weekly Humira. My insurance (Blue Cross/Blue Shield) OK'ed the increase to weekly with absolutely no problem after I'd been on the bi-weekly dosage for 18 months.
Trisha33 said:
The first biologic I used was Humira which worked somewhat; dr. wanted to prescribe once a week but insurance would not cover it. Apparently, Humira has been approved for RA weekly, but not PSA. Makes sense, right?? Next up was Enbrel; unfortunately I was allergic to it.
I had a similar experience as janeatiu. I was injecting Humira every 14 days when I was also injecting MTX subq. After I came off MTX because I never got rid of the GI side effects, Blue Cross/Blue Shield had no problem with me injecting every 10 days.
I keep hoping I can move...slllloooowwwlllly......to 11 days, then to 12, then to 13, but every time I think maybe the next shot, like janeatiu, Humira becomes busier and it's every 10 days.
Seenie: I agree. It makes a HUGE difference if you have a good person/team. I'm very thankful for my wonderful Dr. Abbas. I dunno whether he does it for all his patients, but he knows Paul is a part of this process and never fails to include him in our discussions. I will also never forget his compassion and how he helped comfort both of us this time last year, not to mention how happy he is that I'm doing so well.
Rachel did indeed hit the nail on the head, it is good karma to have a team that preempts you after the struggle you had initially. Both well deserved and how it should be!
You mention lack of 'body sense'. I don't know about that. I ponder it, but I go round in circles. The body's not something we can park and take a look at, we're using it every single second and for that reason we're geared to not dwell on its failings, it's difficult to be objective. And there are cultural pressures (I suppose they're called) to be uncomplaining and brave as if the only alternative is to be a misery guts. Then there's the old high pain threshold, which quite a few of us seem to experience, that seriously muddies the water!
Your doctors deserve cake! I'd be scared too though. Just because. But I bet you're going to get a great result from Humira.
Ahh thanks guys, especially you Seenie! Here’s a little story that reminds me of the situation you’re facing. My mother has spent the last 20 yrs working in crime prevention also on a an emergency response team until recently retiring. She gets a call at any given time to assist a family in need dealing with unexpected tragic death. She is also a loving, extremely sensitive, and caring person who has been able to help put those people in connection with community resources, funeral assistance and liason with police department or just sit and listen to them. You would expect a person like this to be very emotionally strong or rather detached but she is not and has helped many people on a human level. Recently she had a terrible tragedy in our own family and my mother flew up to assist boastng of her experiences in this area. She did a good job as needed but had a process of greif to go through as well internally because this was not strangers this was personal. The balance was offset and her reaction is that of the mom I know. This is how I see what you as moderators have to. It’s one thing to be sure you have inciteful advice and personal experience to offer but when it is your own situation it becomes personal and that is far different. Your own paterns and behaviors kick in and you go into your own process. Nothing wrong with that but some times it takes a little reminder of how amazing you have been for others and that’s its OK to let someone else guide.
P.S. My sister and I are making a girls weekend for the trip to the funeral.
Only you, dear janeatiu, could produce a post like this. I hope your friend Humira will make some quality time for me.
janeatiu said:
I had my own Humira conversion almost two years ago. Enbrel was a wonderful friend but after a while he stopped writing. Never called. So I started hanging around with Humira and things have been going swell (not swollen). I’ve had a rough patch lately myself and while Humira is a good pal, she’s often busier than she had expected–apparently I’m a demanding friend–so we’re both now also hanging out with our new friend Otezla. O was a little problematic at first and really made his presence known. But now he’s settled down and for the last nine weeks we’ve been in a nice little routine and we’re all getting along so well together that we hiked 5 miles on Sunday.
Oh Rachel. I am so sorry that your family is dealing with a tragedy. I hope that you and your sister enjoy some quality bonding time, together and with your Mom and the whole family. Your mother sounds like a remarkable person: strong, sensitive and practical. She also raises great daughters!
And thank you for your very very sweet words about moderators. You are so right – supporting others is a very different proposition from dealing with your own “process”. But that’s why we have each other. Your saying this helps me get the whole thing into perspective. And you’ve made me grateful, once more, for all of the good friends I have here. And as much as I hate PsA (don’t know whether I’ve mentioned that before), without it, I would not have had the friendships that I have here. You are part of the big silver patchwork that lines my PsA cloud. Thanks.
Rachael said:
Ahh thanks guys, especially you Seenie! Here’s a little story that reminds me of the situation you’re facing. My mother has spent the last 20 yrs working in crime prevention also on a an emergency response team until recently retiring. She gets a call at any given time to assist a family in need dealing with unexpected tragic death. She is also a loving, extremely sensitive, and caring person who has been able to help put those people in connection with community resources, funeral assistance and liason with police department or just sit and listen to them. You would expect a person like this to be very emotionally strong or rather detached but she is not and has helped many people on a human level. Recently she had a terrible tragedy in our own family and my mother flew up to assist boastng of her experiences in this area. She did a good job as needed but had a process of greif to go through as well internally because this was not strangers this was personal. The balance was offset and her reaction is that of the mom I know. This is how I see what you as moderators have to. It’s one thing to be sure you have inciteful advice and personal experience to offer but when it is your own situation it becomes personal and that is far different. Your own paterns and behaviors kick in and you go into your own process. Nothing wrong with that but some times it takes a little reminder of how amazing you have been for others and that’s its OK to let someone else guide. P.S. My sister and I are making a girls weekend for the trip to the funeral.