Newly diagnosed with PsA. Awaiting prior authorization for Enbrel and on 20 mg prednisone. Still with significant flexor tenosynovitis. Has anyone had this and get improvement with Enbrel while prednisone not effective?
Thanks
Doxno
Hi there Doxno!
It's a while since I've taken prednisone and I'm trying to think back to ways in which it did and did not help. My recollection is that it 'oiled' stiff joints and improved fatigue. I don't recall it helping much with joint swelling or, indeed, tenosynovitis. Which is not to say it never does, the way each individual responds to drugs can be so variable.
I do think that steroids and biologics are very different animals. For me, Humira has been the only drug that has reduced swelling everywhere. By the time I started on it I'd tried steroid shots, prednisone and 3 DMARDs, most of which helped in some way or other but Humira has been the real deal.
Good luck, hope you see a difference soon.
Thanks much for the reply. Hopefully Enbrel will help when I get it approved through the insurance
Best,
Doxno
Hey Doxno,
I've had varying success with prednisone. Like Sybil said it does tend to decrease swelling quite well, but more so in the joints. And for me the best success with prednisone was always with its ability to ease fatigue (I usually feel like Superwoman when I take it and that I can do EVERYTHING on my "to do" list all in one day--a misguided approach to life with PsA!).
My experience with Enbrel was a good one and I hope it will be the same for you. It really did help _everything_. I am now more aware of taking steps to avoid causing swelling in the tendons that had suffered significant swelling and pain prior to diagnosis and taking biologics (for me it's elbows and hips) and I now take steps to alleviate any additional pressure or strain they are put under during everyday activities and exercise (think compression sleeves/supports). I take these precautions because they take sooooo looooooong to deflate once you've aggravated them. Good luck!
Your experience and reply is much appreciated Janeatiu!
You took the time to put my mind at ease and that means a lot!!!
It’s tough. I’m 41 with young family and busy job. I’m not ashamed to say it’s scary. Just diagnosed really 2 weeks ago and trying to still work and maintain my responsibilities through the pain and uncertainty.
Your comments mean a lot.
Best,
Doxno
Hi Doxno, I wanted to comment, too, because I’m not sure what the inflammation was called in my fingers, but they always felt tight, a couple were noticeably swollen, my knuckles would swell up–they basically felt very stiff and uncomfortable all the time. I know it had something to do with synovial fluid.
Anyway, Enbrel stopped all that and my fingers, other than having some OA damage that hurts a little, don’t have that tight feeling anymore!
Good luck with Enbrel!
Thanks so much. I’m having a hard time with prior authorization. Is this common? Hate being on the prednisone. My rheumatologist wants me up to 40 mg daily but I wish to stick it out at 20 mg to avoid "moon face ". Hopefully Enbrel will be approved soon and it will work quickly?
You're welcome, Doxno. It is a really tough diagnosis because it is chronic not acute and the treatments seem scary.
And, yes, waiting for pre-auths for meds can be challenging. It is really common. The meds are very pricey so insurance companies want to make extra super sure that you really really absolutely positively need it. It can take a few days and they will consult with your doctor.
Doxno said:
Your experience and reply is much appreciated Janeatiu!
Prednisone and enbrel work differently for all of us. For me Enbrel worked VERY quickly. For others less so. Some don't take more than 20mg of prednisone but that doesn't mean that you should/shouldn't. Also, "moon face" tends to develop over a long period of taking steroids--and not for everyone.
I would advise you to share concerns you have with your doctor (rather than making unilateral decisions about your treatment plan). You want to develop a trusting relationship with your rheumatologist. You want to trust that s/he has your concerns at heart and that s/he is hearing you. Your rheumatologist will also want to know that you buy in to the treatment protocol. That means expressing that taking pred over 20mg feels like a lot to you and seeking other options with your Dr. Maybe s/he will say to start at 20mg and see how it goes. But if you cut down from 40mg to 20mg with no consultation then your physician will have a hard time knowing what's up with you (especially if you're still feeling craptastic and s/he thinks you're at already 40mg...). So talk it through, even if that's by sending an email (my doc is great with that).
PS-I'm not lecturing you but I AM strongly encouraging you to keep that dialogue up with your doc!
Doxno said:
Thanks so much. I'm having a hard time with prior authorization. Is this common? Hate being on the prednisone. My rheumatologist wants me up to 40 mg daily but I wish to stick it out at 20 mg to avoid "moon face ". Hopefully Enbrel will be approved soon and it will work quickly?
I'm going by my experience with Humira but I know it's much the same, time-wise, with other bios. I felt that the speed at which joint swelling (knees mainly) reduced was impressive ... but then I'd gone through 3 DMARDs so my sense of what is and isn't 'quick' in terms of response time had already been informed by that, i.e. noticing improvement within a month or so is Good!
Like janeatiu, my understanding of side effects such as moon face with steroids is that they are more likely to occur if you take them for an extended period. And I agree too that the relationship with our rheumys is two-way .... we communicate reasonably with them and expect the same. Could well be that your rheumy will understand your concerns if you express them again, or has he or she already agreed with you, if reluctantly?
Few of us here wish to take steroids long-term. But rather more of us see the advantages of taking them for a short period while waiting for the more sustainable drugs to kick in. I took prednisone nearly 4 years ago for a couple of months straight after diagnosis and have never needed it since. I'm not knowledgeable enough to know if you or I are right, but I'd probably question 40mg too, but ultimately I'd be guided by my rheumy. My questions would be: do I really need that much? / How long will I be on it? / Can I taper down? A big potential advantage of the pred is that you should be able to simply keep going at work and with your children and the understandable anxiety that comes with diagnosis will be reduced. It is such a tough time, no doubt about that.
Thanks everyone for your support. ENBREL JUST GOT APPROVED. Even on prednisone I’m in a ton. Of discomfort and trying to work full time. Hopefully will start injection this weekend. Can’t take NSAIDs. Severely allergic.
WOOOHOOOO!
Doxno said:
Thanks everyone for your support. ENBREL JUST GOT APPROVED. Even on prednisone I'm in a ton. Of discomfort and trying to work full time. Hopefully will start injection this weekend. Can't take NSAIDs. Severely allergic.
Congratulations! One step for man, two steps for feeling better!!!
Glad to hear that! I hope Enbrel works as quickly for you as it did for me! :-)
Saturday is the big day to start. Thanks everyone for the well wishes!
Hi Doxno, just wanted to wish you well for starting Enbrel. Hope you get a good response. I'll be increasing the dose of my biologic, Simponi, on Saturday ... this is to see if it's still working for me (hopefully) or has run out of steam. If it's the latter then I hope I'll be moving to Enbrel in the new year.
Keep us posted on how you get on.
Will keep everyone posted. First injection tomorrow. Fingers crossed. Barely made it through work today with pain, flushing, extreme fatigue swelling. Good luck to everyone else in their journey!
Is it normal during a severe flair, in addition to having joint pain and swelling, to have intermittent severe facial flushing and episodic generalized weakness episodes?
I've come to think that almost any unpleasant sensations are normal when PsA is kicking off. Certainly I've found that my thermostat goes haywire though the worst symptom of that was chills, uncontrollable shivering (in summer). I still get too hot, too quickly and too cold as well but I'm sort of used to it. And weakness too, during a flare, as far as I recall i.e. I'd sit on the sofa and feel as if something was pinning me down, just couldn't seem to do anything.
However what your rheumy will make of these symptoms in the context of you might be different. It could be something that needs addressing or it could be part and parcel of the flare which will pass, I do hope, as soon as that Enbrel kicks in. So you need to let him know I think. It is one hell of a job working out what is part of the new normal and what isn't.
Doxno said:
Is it normal during a severe flair, in addition to having joint pain and swelling, to have intermittent severe facial flushing and episodic generalized weakness episodes?
Thanks Sybil