Overwhelmed with emotions
I have suffered this wretched disease for over 20 years... I've experienced most of the topics discussed here. This is my first time seeing this, and within the first few moments I already read more productive discussions than any of the conversations I've had with any Doctor. Unfortunately in my area we have 4 or 5 rheumatologist servicing a population of about 600k in a hotbed of people who suffer from psa and rheumatoid symptoms. The first 8-10 years i had symptoms being misdiagnosed by several doctors. During my 21 years since diagnosis, I've had several breaks of insurance coverage for treatments, doctors mismanaged my treatments, and medications I've tried them all. I finally got a team of specialists working together to optimize care and it was working, till covid. During the dreadful covid takeover, the policies forced my Dr's out of their practices. With no Dr accepting new patients, I was left without the medications that I vitally needed for all my ailments. My body crashed. I was bed ridden for nearly a year, with my wife dressing me and bathing me. I was unable to do anything for myself. I suffered vast amount of permanent damage including bone erosion and moderate nerve damage. I was forced out of 2 careers as a result. I have been unable to get back to any resemblance of my life from just 5 years ago. I've witnessed a big change in perceived "healthcare" practices and can't find the reason to trust our healthcare system. I am 47yrs old and currently take more meds than my mother who's had emergency triple bypass surgery amongst many other procedures. I do not live any quality of life. I just started taking Bimzelx as prescribed by my dermatologist, who has been a great partner in treatment over the past year. However I remain skeptical of the continuity being that he is young and probably looking to better position himself for his future financial prowess. And I wish him the best if he is presented the opportunity. However this is one of the many patterns I've dealt with through this audacious process of mitigating my condition. I only hope to find the help necessary to manage a healthy lifestyle with minimal obstruction from health conditions. I'm not sure if this is appropriate for this forum, so I will stop here before I go to deep into the details. However I would appreciate any conversation with someone that has experienced similar situations, knowledgeable interactions with experts, or individuals who have extensively researched this depleting condition.
Hi
, and welcome to the community. We're so glad that you reached out and shared here. I'm sure many of our community members can relate to a lot of what you have shared, and I hope they'll chime in here with their experiences. I can certainly empathise with aspects of what you have been through with this disease. I had symptoms misdiagnosed and was bedridden for a period of time too, so I have an understanding of what kind of a toll these experiences can take on a person, and how they can impact life going forward. I'm sorry you ended up bedridden due to your care and treatment essentially being withdrawn. That must have been so devastating, especially after you'd finally found yourself in a situation where a good team of doctors were working together to look after you. I sincerely hope that the Bimzelx will bring you the relief you so deserve. You may have seen already, but we have a couple of community members who are on this medication - here's a forum discussion that you might be interested to browse/chime in on: https://psoriatic-arthritis.com/forums/has-anyone-tried Have you noticed any effects (good or bad) of it so far? I know these systemic medications can take a while to kick in. Please feel welcome to share as much or as little as you'd like with us all. We're all here to support each other on this terribly challenging journey. Warmest wishes, -Catherine, Community Moderator Thank you for the reply welcoming me to the community. I appreciate your positive reinforcement. I will contribute my experience with bimzelx on the link to the conversation you shared, thank you. I have trouble understanding why there's not more of a specialized position of care for PsA, there's seemingly incredible demand for it. Hope for the future!
, you're so welcome! This community is here anytime you need support or a place to vent. Thank you for sharing your experiences with Bimzelx - it sounds like it's been a positive start for you! Really hoping that you continue to see and feel improvements as time goes on. I know what you mean about a specialised position of care. I personally feel that this is, at least partly, an unfortunate hangover from the incorrect initial assumption that PsA was rheumatoid arthritis with psoriasis, rather than its own disease. It feels like there's a lot of catching up to do when it comes to understanding this disease, and oftentimes it seems we are working things out amongst ourselves and waiting for the research/our doctors to catch up with us. That's just my personal feeling though. Hope for the future, as you say! Warmest wishes, -Catherine, Community Moderator
I'm so glad you found this forum and hope you find the support and encouragement you need here. I certainly have.
Unfortunately, difficulties in getting quality medical care is more common than it should be.
I've found that dermatologists have been both more affordable (lower self-pay plans for those without insurance) and more willing to listen and discuss potential treatment options. I'm certainly not advocating NOT going to a rheumatologist, but if you're struggling to find one, a dermatologist could likely help.
If you're concerned your younger provider might depart, maybe you could try to find someone with their own established practice, to put your mind at ease. That said, try not to borrow trouble - he may stay with that practice and be made a partner. We can't know what the future holds. Or if he does go somewhere else, maybe you can follow him to his next practice or ask him for a local referral.
As to lifestyle. I gather you're currently no longer bedridden, and it sounds as though your wife is very supportive. Those are two positives!
It can take time to figure out what works for you, especially when things can change at the drop of a hat. Many here have found that keeping a PsA journal helps them track flares, track triggers, how medications are working, diet/activity routines, notes from doctor visits, and the general ebb and flow of the disease. Maybe it would help you, too.
Modifications are also very beneficial to many in creating a lifestyle that works for them, such as using tools to make simple tasks easier, having plans/supplies in place for handling flares, altering daily activities to be more manageable, and/or participating in conversations here with others who understand and can empathize.
I hope you'll spend some time scrolling back through forum posts to read topics that resonate with you, and that you take a look at the regular emails sent out to members with a range of topics. This site has been so helpful to me in increasing my understanding of the disease, with tips for handling things, and the understanding I've been shown from other members and the admins. And even in allowing me to share things that have worked for me and potentially help others, which is a good feeling.
Sending luck and support your way - we all need all we can get of both!
