Starting biologic at end of month
This is a mixed blessing. Finally got in to see a doctor, yesterday, and am now trying to wrap my head around this.
Although the practical part of my brain knew it was PsA, there was still a part of me that was hoping this was all in my head, or maybe it was just that I'm older and need to be in better shape, or maybe it was hormones, or an unknown food allergy, or, or.
Nope.
He prescribed Skyrizi. First injection to be on July 31, then second four weeks after that, then every three months. Got a call from the drug company RN patient ambassador today to schedule a zoom meeting for next week to discuss my expectations, then she'll come to my house to teach me to give myself the injection and be available if I have questions or issues.
So, this is real. So are injections for the rest of my life. So is the price tag on the medication.
But on the flipside - I recently had a 15-day round of prednisone (for an unrelated issue) and I didn't really realize how badly everything hurt until it DIDN'T. I had a good ten days with only the occasional twinge, much of my psoriasis cleared up, and I felt GREAT! It was an eye opener though, how carefully I position myself to sleep to avoid pain, how much I've changed the way I move to avoid pain, being able to get out of bed easily in the morning, no issues with stairs, no issues carrying groceries in, or dozens of other little things I've learned to alter or skip entirely. I've gotten so used to it all that half the time I don't think I was even aware I was doing it until I didn't HAVE to do it. Even not having to deal with plaques every day was such a feeling of freedom!
So maybe these injections will make that a permanent thing. Wouldn't that be amazing?
Just wanted to share - this community is the one place where I know what I'm feeling is understood. Thanks for listening!
Hi
! Thank you so much for sharing with us. I know how scary it can be to be diagnosed, especially when it's something you were hoping you didn't have. However, I think it's wonderful that your finally diagnosed and are now able to get the relief you deserve💓 I think it's great that prednisone has been able to help you realize just how much pain you were in and has been able to give you the relief you need! I hope these upcoming injections help you and I'll be keeping you in my thoughts💗 Please know that the PsA Community cares about you and is here for you! If you have any questions, or just need somewhere to talk, please don't hesitate coming here💕 I'm wishing you a peaceful week✨ - Abigail, Team Member Thank you
! I was "unofficially" diagnosed five years ago, but "you probably have PsA" leaves room for doubt, you know? And when I've had good periods, between flares, it's easy to slip into that mindset of thinking I'm really fine. Back pain is just age-related disc damage, elbow pain is from lifting wrong, thumb pain is from repetitive motion, foot pain is because I need to lose 20 pounds, fatigue is because I'm old and do too much, etc. Or maybe I'm just being a big baby. But holy cow, when the pain was mostly gone, it was astounding to realize how bad it had really been.
Thank you for the kind wishes and support. It means a lot!
It's great that you're finally going on a biologic. I'm on Skyrizi, and I can offer you a couple tips. First, I felt fantastic after the loading dose phase; pain and swelling gone. But, gradually, it did creep back, though not to previous levels. Since last August, I've not had any flares, at least. Here are some of the side effects I did suffer during the loading phase; mild fungal skin infection, folliculitis, an increased prevalence of reflux. All of these side effects went away over time, and were never serious enough to cause alarm. However, since being on Skyrizi, I have had issues with excessive phlegm, and stuffy nose. One of the listed side effects of the medicine is upper respiratory (sinus) infections, so I imagine there's some mechanism of the biologic at work in the phlegm build up. But ten weeks or so in, these minor things clear up, only to return after my next injection. Keep a log of anything that you believe to be side effects so that you can bring it up with your nurse ambassador. The nurse ambassadors are very good at calling, and if you have questions they can't answer, they will get back to you with an answer. In the meantime, get with your doc, and discuss a low dose Methotrexate as well. It is widely believed that methotrexate concomitant with a biologic can help prevent immunogenicity setting in. oh geez, why did you have to tell me about side effects?? 😂 My best friend and I read the side effects for each other's meds so neither of us is influenced by what COULD happen, but we can watch each other for things that do. So I skimmed through that part. But it is good to know that milder things do/can wear off.
I go back on the 31st so I'll ask him about that. Thank you.
I'm moving in November - is there a chance I'll be "strong enough" to deal with that, or is it going to kick my backside? That'll be just before the first 3-month dose. Actually, the plan was to move Thanksgiving weekend and the 3-month dose would be a week after that.
Also, did you have any issues with that initial dose or did you carry on like usual?I had the folliculitis and fungal during the loading phase. And, again, mild effects that were easily treatable, and cleared up immediately on treatment. And I felt my best during that initial loading dose phase, because of the two injections so close to one another. As far as carrying on like usual, I was coming off of a fractured sacrum when I started, so I really couldn't carry on as usual regardless. But, I've been on Skyrizi since last August, and I've been back to running half marathon distances since late spring. How you feel come November is really anybody's guess. A lot is going to depend on where you are at with your disease currently. But I would expect that you will probably be doing well enough by November to deal with moving. Just take things slow, get started early with sorting and packing, and try to keep your stress levels in check. Moving can be stessful in and of itself, so schedule yourself lots of breaks, both physical and emotional.
You know, I really can't say enough about the importance of finding the right doctor and pushing for treatment. I could kick myself for not doing this five years ago. How much damage have I done in the meantime? How much better could my life have been if I'd taken action instead of denying and delaying?
The prednisone has worn off and the pain is back, and with it, the fatigue. I have to wonder how much of the fatigue is caused by constantly dealing with pain, constantly adjusting, being wary of tasks, even just coping? It's exhausting.
Yesterday everything hurt and by the time I'd finished dinner I had no energy left and collapsed on the couch until bedtime then fell into bed, feeling like I'd been hit by a bus. The ONLY thing different about yesterday over the past two weeks was the pain had returned.I really hope everyone reading this will take steps to get treatment and if that treatment doesn't work, move on to the next one. If your doctor isn't helping, find another. That period of time without constant pain was astounding - we should ALL be striving for that! Life is for living!
