Newbie here - parent to adult with PsA

General
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Hello everyone,

My 22 year-old son was diagnosed with PsA when he was in high school. It started with bruised and swollen toes. When asked numerous times if he had banged his toes into something, and him confirming he hadn’t done anything, we took him to his pediatrician, who didn’t know what to make of the swollen toes. My son then developed swelling in his left knee, which was quite painful. His pediatrician suggested we take him to Childrens’ Hospital in Los Angeles (CHLA), which we did.

After draining his knee twice (very painful procedure), he was admitted. He had surgery on his knee to drain the knee to prevent infection. While in the hospital, we noticed he had sores on his legs, which were silvery and scaly. We asked every doctor who cam in to see him what the sores were, but no one knew.

My son’s attending physician put him on some serious medications. He had a PIC line inserted into his arm in order to administer these medications. Of course, the meds did nothing to help with his symptoms.

One day, when we were in one of the exam rooms, we saw a poster on the wall of a foot with swollen and bruised toes. The posted showed signs of PsA. None of us had ever heard of PsA before, but we told the doctor that we thought that’s what our son had.

My son then saw the head rheumatologist, who immediately diagnosed my son with PsA. The doctor put my son on methotrexate, which didn’t work. He was then put on Humira, which worked great - no more swelling and pain. After a few years, though, my son aged out of Childrens’ Hospital, and had to see a rheumatologist through the insurance providers. After one of my son’s blood tests, we found out he had a fatty liver, which is a side effect of Humira. We changed his diet, with minimal positive results.

My son then tried Enbrel, which wasn’t as effective as the Humira. Thereafter, the rheumatologist had my son try Remicade, which worked well. During this time, we moved, and my son decided to change doctors to find a doctor closer to home. Well, his infusion routine got messed up. He didn’t receive any treatments for four months, because he couldn’t get in to see the new rheumatologist.

Not receiving any treatments was disastrous. One day, when I came home from work, my son had not moved from his bed the entire day; he didn’t eat, didn’t use the bathroom, nothing. He was in such pain. I had to call the ambulance to take him to the ER.

Since then, my son has had a few infusions. He’s now in Renflexis, a biosimilar. He goes every eight weeks, but eight weeks is too long. My son is okay for the first four weeks, but then he can’t work in until he’s had the next infusion, because it’s too painful for him to walk. He’s a busser at a chain restaurant, and bussers are on their feet the entire work shift.

I am sorry for the wordy background about my son. We’re both fed up with his doctor, but we’re primarily fed up with the insurance company. My initial reason for coming to this site was to see if anyone can provide pointers on how to deal with insurance companies, and/or doctors who aren’t assertive enough to advocate for their patient’s health needs. Any thoughts and/or suggestions are much appreciated.

Thank you!

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Welcome! My sixteen year old has already started with new symptoms, so I feel your pain. He’s seeing a rheumatologist? If you’re not happy with his doctor, get a second opinion.

My husband started out with a rheumy in the same medical group as mine. I went with him to his first appointment. I was completely underwhelmed by the doctor and his suggestions. I told him that his next appointment needed to be with my doctor, and he’s been with he since.

Definitely use the search button on the top of the page if there’s anything specific you’re looking for.

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I’m sorry I don’t have any useful information to offer. I’m not in your country.

I know, though, how difficult it is when your child has health issues (not PsA in my adult kids’ cases) and you can’t fix it or even seem to make inroads, at times. It can be so stressful and overwhelming. I also know from my own experience that it doesn’t help when people offer empty praise about how wonderful you are as a parent for being there for your child. Nevertheless, I think it’s worth saying that what you’re doing - being supportive, believing your son’s assessment of his pain, pushing to get effective medical care - those are all so important.

I was only recently diagnosed with PsA, and people here have helped me to understand that it’s a lifelong condition that takes time to wrangle, and then ongoing re-adjustments of treatment. It’s a long process. It stinks! Genuine support from people we’re close to is worth so much. It’s good to hear that you’re there for him.

I hope someone can offer the info you’re after :slight_smile:

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Can you be more specific about your issue with the insurance company? I’m in the UK so no use to you, but there are likely to be people here who can advise if we know exactly what the issue is.

As for the doctor problem, well a change of rheumy may be on the cards. And of course both you and your son have to be his advocates. I’d write a letter detailing exactly how the disease affects him in terms of function, with clear reference to time frames. Sounds like you have a pretty good angle on this already, but the surer you are, the better. Even if you don’t send that letter it would help to ensure that you are 100% clear and assertive at his next appointment. I say ‘you’, but ideally it will be your son who does all this. He is old enough to fight for himself but young enough to expect that a first rate approach to treatment at this stage could bring very good results. Would he like to join this forum too, do you think? We’d love to hear from him and would give all the support he needs, as we will to you.

I know we all do what we have to do, but I’m wondering about that job of his. I think I’d be looking for a more sedentary post with a view to doing PT and other targeted exercise regularly in my free time. I’d imagine that the current job over-stretches him physically to put it mildly, leaving him way too tired to do the kind of exercise that really helps.

Best wishes to your son and to you. When things aren’t working out, a considerable amount of time and energy can be required to get on track. But I’d go for it like I was running some sort of campaign, which indeed it is really … everything you and he do now to help fight his PsA is an investment in his future.

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Thank you, Stoney, for your message. Yes, my son sees a rheumatologist. He’s been going on his own, and yesterday, I went to meet the Dr. and discuss my son’s flare ups. I wasn’t overly impressed with the doctor; she arrived an hour late to the appointment. She seems to have an understanding of what my son is talking about and going through, though. I’m still reserving judgment about her.

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Hi Sybil. Thank you for your thoughts and advice. As you may know, or have an inkling, the insurance situation in the U.S. is not that great. Hopefully, in our next presidential election, we’ll see some better outcomes.

My son had an appointment with the rheumatologist yesterday, and I accompanied him to the appointment. I wanted to meet the doctor for myself. The doctor seems to understand my son’s situation. To make a long story short, she’s going to try to get him on a shortened schedule for the Renflexis infusions. Instead of every 8 weeks, he’ll go every 6 weeks. When I asked her about the schedule, she said the pharmaceutical company that makes Renflexis creates the schedule, and the doctors are to follow the schedule. I’m hoping he can get on the shortened schedule, or we’re going to have to discuss with the doctor a different treatment method. It’s frustrating to have to try a treatment regimen, find out it doesn’t work, and go back to square one, all the while, my son is in pain and the disease is damaging his joints. But it’s what has to be done.

I agree with you that his job probably isn’t the best for him at this time. Although they have made some concessions for him (shortened work hours, and a different position). My son is on his father’s insurance plan until the age of 26, then he’s on his own for insurance coverage. This means he’ll need to go back to college to get a better job that provides health insurance. But, again, that’s what has to be done.