As a moderator it is sometimes tempting to want to paint a rosy picture and to be positive and encouraging all the time. But I think that does us all a disservice and suggests that navigating this disease is a simple, obstacle free, smooth road to a life of long afternoons frolicking carefree on the beach. And while I wish that for my fantasy life it isn’t my reality.
I just drove across town to my rheumy’s office to pick up a month’s supply of yet another new biologic medication. I am heartened by how seriously his nurses now take my calls. I appreciate that I always leave his office after appointments with a plan and in his notes he lists our agreed upon plan B in case our best laid plans go to pot.
After my terrific introduction to biologic medications from Enbrel, whom I loved dearly, it was on to Humira who, unlike the heady whirlwind romance of Enbrel, grew on me slowly. But like Enbrel before her, it was not to last with Humira either. Enter Simponi. Simponi exited stage left without saying a single word. Then Stelara arrived and flirted with me with her once every 12 week promise of redemption. Unfortunately my body just wants more attention than Stelara can give. Andeven with a little creative license in the timing of doses Stelara proved that she couldn’t really give me what I needed. Well hello there Cosentyx! Will you be my new biologic bestie? Will you?
I’m fighting crushing fatigue and have been on prednisone for 8 months pretty much non-stop. I could take more but I’m on the lowest dose I can take without feeling bonkers but still have just enough gas to get to work and stay there for a respectable portion of the day. I need my job for the money and the health insurance but my health is now poor enough that I can’t really work at full tilt and still have a satisfactory life on the weekend or in the evening. I have barely enough juice to get the basic chores done so some weeding this weekend tipped me over the edge.
I take Otezla in addition to biologic medication but due to a change in my health insurance formulary they are no longer permitting Otezla to be taken along side a biologic. This is a money-saving scheme and two appeals from my physician have gone nowhere. So, sweet Cosentyx, you better get to work before I run out of Otezla and/or patience.
As most of you know, the catharsis of committing words to (virtual) paper is healing in and of itself. So thanks for indulging this little outpouring. I’m fine. I’m tired. I ache. My eyes hurt. I’m fine.
I was just trying to figure out how long I’ve been on Enbrel now. I’m not where I want to be, but am firmly in the good enough category. It’ll have to do.
I’m simply adoring your doctor. Leaving your appointment with a plan and having a plan B committed to paper in his notes. He needs to give lessons to other doctors!
I so hope Cosentyx works for you and gives you some time out to get on with your life feeling far more able. Remember to count up the good stuff during the most awful stuff. It helps sometimes. For me it usually makes me cry first though. But then far too much makes me cry! However once I get past that, things always feel a little steadier when I concentrate on what is OK.
How long will it take until you know Cosentyx is either doing its stuff or not doing its stuff? Cyber hugs for now though.
You’ve had to kiss an awful lot of frogs. I would think it is the most frustrating situation we can face. But this time … so hoping Cosentyx is the one for you.
You are the most positive person going. I don’t like that word ‘positive’ much though, it’s just shorthand for the total trooper you are. I reckon acknowledging what is happening, including just how hard the struggle is, is as important as acknowledging the good stuff. I think it’s called keeping it real.
As you might remember, Sybil, after getting my diagnosis I was struggling with depression and saw a therapist (not my first time at that particular rodeo). It took me a while to locate one because so many these days orient towards cognitive behavioral therapy, the main premise of which is to use thoughts to help to change how you feel. Kind of a think yourself better frame. Being freshly diagnosed with a chronic illness made the prospect of seeing someone who would work to get me to “happy” seemed so artificial. How could I be happy about my diagnosis and the very real ways in which I saw my life changing? I didn’t want to feel happy about it.
Luckily I met my therapist, someone who specializes in helping those with long-term and terminal illnesses cope. The practice she uses is called acceptance and commitment therapy. It isn’t about being happy, rather it’s about living with acceptance and not struggle. Part of the acceptance is recognizing the triggers that cause you to struggle. Failing four biologics–with the last two showing no promise at all–was a giant trigger. It is tempting to go down the “what if” track and ride that runaway thought train all the way to its last stop, Doom and Gloom Station. Writing it down is part of the process of halting that catastrophic thinking and seeing these frustrations for what they are. Just frustrations. Nothing more.
I’m with you. I gritted my teeth for as long as I could, though. I’m pretty good at handling the pain and inflammation even when I’m in the gap. But I just can’t handle the crushing fatigue.
Yes, I can see that. It’s not as if there’s just the 2 poles: doom & gloom or Pollyanna. I’m kind of old enough to accept myself, it took long enough! So I accept the vagaries of the disease in so far as they’re part of me, part of my life. And usually when I’m feeling down it doesn’t escalate 'cos I’ve seen it all before! New scenarios present a challenge or a trigger as you’d say but we get through them.
Been there a couple of times, way back in the day. Wouldn’t recommend a visit. It would get one star on Yelp. There’s no good times to be had here. The toilets do not work.
It’s easy to stay positive when things are going well, but that much harder to maintain any sort of positive attitude when things are not. Even listing the positives you have - such as your apparently magically amazing doctor - don’t do much to counter that when you can’t see a way forward cause your eyes are fixed on the ground.
One foot in front of another, keep going, and other such platitudes from folks who don’t really understand, as sympathetic as they may be, do not help the situation. It’s easy to feel broken that you can’t just, as they all say, snap out of it and look on the bright side.
I think we can all understand that, and so, with gentle virtual hugs, as even virtual hugs can hurt, we’ll all sit around and hope that this latest one will knock your PsA on it’s ass.
I too have done the therapy issue. Best thing I have ever done for me. However I had just stopped it when I got diagnosed with this last year. I thought about going back given the diagnosis but didn’t. Maybe I should have but I was kinda done with looking at me and anxious to just get on with the rest of my life.
And I’ve done better and better in coping as this last year progressed. So obviously all I learned throughout the 18 months of just proper therapy (not CBT either) was actually helping me cope.
I see no shame whatsoever in deciding you might need help of the therapy sort, it’s awfully hard work at times (I felt resentful at what hard work it was a lot of the time) but so useful for getting out of the Doom and Gloom Station. None of us need to be there and certainly none of us wants to be there.
And yes even virtual gentle hugs can hurt too sometimes but at least with those you can decide whether or not you want to receive them.
yes it is hard to stay postive when you keep looking for what is going to work for you.
I developed rash all over body. Been on humira and MTX since 2011. Was doing
good but now stopped humira not sure if caused rash. I am having a relape very fatigued and trouble walking . I am getting discouraged but trying to stay postive.
My reum told me to up my MTX. I was doing so good now it feels like back to square 1.
Now’s the time to tell your doctor Peg to pull out more stops. It seems (as I’ve yet to find out) that lots of us end up back at square one too often. So perservere and persist.
It’s dreadful how we have to be in constant fear - I should say - awareness of the disease lurking within us, even when our biologic is working as well as expected–around 75%. Janeatiu, your story is so common–maybe not the norm for a lot of PsA sufferers–but it sure seems like biologics fizzle out for one reason or another…don’t we all wish we knew what the reason was??? Maybe we could prevent it from happening???
I had a scare a few days ago…I had chills all day and just couldn’t get the house warm enough. I noticed my legs were really weak and achy. Then my neck and shoulders got stiff and sore. I was so exhausted. I checked my temp cuz I was sure I had a fever, but didn’t. It didn’t take long before I started worrying I was having a huge PsA flare–something I haven’t had since starting Enbrel 3 years ago. I worried Enbrel had stopped working! It’s a horrible thought–I’m sure that will happen someday, but I’m just not ready for it! Janeatiu, I can only imagine how sad it must make you when one biologic after another fails!
I got lucky that day! After about 12 hours a fever broke or something because I woke up in a sweat, but feeling a lot better. It had to have been a virus, because I felt so much better so quickly I don’t think it was a PsA flare. But it was so scary knowing PsA could make me feel that crappy again if my biologic stopped working!
I sure hope your plan A works–and quickly!
Yeah, I’d say awareness is a better way to put it, for sure. I don’t fear PsA, or the flares - but I’m very aware of when one may be on the way, Wake up yesterday with some brain fog and some tinges, I know what’s likely coming in the next few days.
Doesn’t stop me or slow me down until it hits, but man, am I ever aware it’s going to do that. Add to that the awareness that meds may decide to up and stop working at any given time, and it’s gets bloody exhausting.
that pretty sums up my outlook right now. wishing i were more cheery and energetic. this too shall pass.
i bumped into a friend yesterday on campus and she was leaning on a wall rubbing her hip and outer thigh. she’s got a sciatic nerve issue right now. i reminded her that whenever i feel most despondent, that i need to apply for a disabled parking pass, or that i might never use my gym membership again, that’s when things start to look up. here’s hoping!
I know how incredibly frustrating it can be changing biologics! I just went to the Dr. last Friday and he changed it again. I too went from Embrel to Humira to Otezla to Stelara and now Cosentyx. I really hope it works for us both! I struggle to get through the day as well. Hang in there and know that you’re not alone!
Thanks for your message. All this waiting to see if each new medicine works is no fun at all. You become super vigilant and focus on every single twitch, blemish and twinge.
I’ve taken 2 of the 5 weekly loading doses of Cosentyx so far. And I don’t know what to think. Perhaps I’m feeling a bit better energy-wise (hard to know as I’m taking prednisone) but worse with aches and pain–particularly in my feet and knees. I’m also getting weird muscle cramps in my calves. They aren’t painful but they’re annoying and they happen whether I’m active or not.
I’m taking the increased foot pain and swelling as an opportunity to buy more shoes!!
I hope you get some relief from your symptoms soon, too.
Oh I feel you - I’m at the point where my Rheum is concerned we’re running out of options (I think she said we’ve got 2 or 3 meds left to try?). I was on Cosentyx for a little under a year (? I think, we’ve been playing musical medications for so long I’ve lost track). The good news is I seemed to tolerate it really well. However, it seems my immune system is really really a jerk, because I’ve had a swollen foot for the last five months so I too am switching meds.
Here’s hoping Cosentyx charms your immune system into behaving! I really wish it had worked for me, because man as far as side effects, it was a dream drug for me (almost nothing, some injection site reaction - but I have a latex allergy - that a benedryl cleared up, and some decreased appetite. I think I had nausea at the beginning too but after a couple months that went away, and the decreased appetite was getting better until we threw Areva in the mix and everything went to pot, lol).
