Hi everyone. It’s been a while since I posted, but I have been reading a lot of posts.
My 22 year-old son has PsA; he was diagnosed at 16 years old. He just changed rheumatologists, and I feel that his new rheumatologist is going to work out. The previous doctor and her staff just didn’t cut it.
Anyway, since my last post in January (I think), my son has had numerous flare ups between Renflexis infusions, which have been very painful and debilitating. When we met with his previous rheumatologist, she was able to get approval for my son to receive Renflexis infusions every six weeks, instead of every eight weeks. He hasn’t had the six-week infusion yet. However, his new rheumatologist added Otezla to his meds. The hope is that the Otezla will help with his joint pain so he doesn’t have the awful flare ups. But right now, were in a “wait and see” pattern.
I’m wondering if others have used this combination of meds. I see this was a topic back in 2015, but nothing since, so I’m hoping that others have some input as to the success, or failure, of this combination since then. My son’s new rheumatologist has made suggestions to my son regarding his treatment, and he has decided to give this method a try.
Hi,
Sounds like he has a good Rheumy now, I know for me I have switched Rheumy’s 5 times, the first retired on me… (not my fault!)
I tried Otezla, but not with other meds, it did nothing for me, but others have said it was a Godsend.
As far as flares, I think we all get them, even with the optimal medication, the main purpose of the meds are to help with preventing damage to the joints, more then pain control.
Let us know how it works out!
Hi Jon. Thanks. My son is on his 4th Rheumy now. The first was through Children’s Hospital. That doctor was great, but my son aged out, so we had to get another doctor. He was fine, but then we moved, and switched to a doctor that is closer to home, but that woman was awful. His new doctor is a young woman, but she’s very knowledgeable.
It’s hard sometimes to see my son’s PsA treatments from a higher standpoint of preventing damage to his joints when he’s in pain that’s debilitating. We both just want the pain to go away so he can function normally. But doesn’t everyone want that, too?
I will certainly update the group on his progress. Thank you for being here.
Hi there!
I don’t have any answers to your questions—I just wanted to say my thoughts and hopes are with you. I have 4 kids and 10 grandkids and my biggest fear is that some of them will eventually fall prey to this nasty disease…or something else bad (I’m a worrier). But, mostly PsA because it’s on both sides of our family. I feel so bad for parents dealing with these types of things because I know if you could you’d bear the suffering yourself rather than see your child suffer!
Here’s hoping the new treatment brings relief and he can enjoy life! So sad when someone so young is stricken with disease of any kind!
I didn’t mean to sound that calloused , of course the goal is for total remission and no pain, and it has happened, but the meds are not quite there yet. They have come a long way though! I think biologics tailored to each persons DNA will be the key, or possibly editing the disease out of the genes would be even better! Your son might see that in his life, though the R&D is a slow process.
Thank you, Grandma_J. I’m a worrier, too. If he doesn’t have a job that offers/pays for insurance when he turns 26 and is off his father’s health plan, I honestly don’t know what we’re going to do. But that’s another topic for another day.
Oh, no worries, Jon! I didn’t take your comment that way at all. PsA is a journey, and not a pleasant one, to be sure. Some folks have had it longer than others, and it’s good for those who haven’t been on the journey for long to hear from others with experience. I agree, if each person could find the right mix of meds for them, that would be fantastic so flare ups and pain would be an exception, not the norm.
My family doctor insisted I go to Ohio State University to get a consult for my psa. I have been on 4 biologics in 8 years. This last year on iv Symponi I have been ill with infections 5 months of that year.mmy fares are worse. So yesterday was consult. So glad I went. Says she would have switched to a different class of Med after the first 2 trial failures. She reviews blood markers and X-rays on an established schedule which has never happened with my old rheumatologist. So even tho it’s a 200 mile round trip I am switching doctors. Had to see the family dr. Today and she’s totally agrees. Thank you all who have been encouraging me to do this. Hopefully the future will be better.
Thank you Sybil. I need all the pushes I can get. Had to see my family dr. Yesterday. Have my 5th ear and severe lung infection in a year since starting Symponi. So glad I won’t be taking it anymore.