Living with Psoriatic Arthritis is an online patient support community that is powered by BensFriends.org, a network of patient support communities for rare diseases. Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.
Psoriatic Arthritis (PsA) is a type of inflammatory arthritis which affects people who suffer from the chronic skin condition, psoriasis. Common symptoms of psoriatic arthritis include pain, swelling, or stiffness in one or more joints that are red or warm to the touch.
Persons with psoriatic arthritis also experience pain in and around the feet and ankles, especially tendonitis in the Achilles tendon or Plantar fasciitis in the sole of the foot and in the area of the Sacrum (the lower back, above the tailbone). Changes to the nails, such as pitting or separation from the nail bed also occurs.
LivingWithPsoriaticArthritis.org is a virtual peer-to-peer community intended to be a safe place for patients and family members as young as age 12, to visit for information, discussion, venting and mutual support. Members come from many backgrounds. Some have a strong religious faith, and others no faith; some are children and others adults, rich and poor, graduate educated or taught by life. Our common denominators are that we share a life journey, and we try to help each other.
How is Ben’s Friends Different from Social Media and Other Support Sites?
Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.
We’re interested in you as a person, and in your struggles as a rare disease patient. But we don’t want to know your name or where you live. We won’t even allow you to use your real name when you register for one of our communities. Because when it comes to medical things, anonymity is important in our googly universe. Your information is never shared, and your activity never tracked by adware.
When Ben’s Friends asks for the country and region you live in, that’s in case your fellow members can recommend local resources and help, and so everyone knows what kind of medical system there is where you live. That’s important when it comes to giving and getting support. Because we are all about support, and we’re all in this together..
Ben’s Friends: Safe and Supportive.
And anonymous to keep it that way.
Why create an account?
Posts on the different Ben’s Friends communities can be read by anyone on the internet. You can browse through the different topics and find most of the information you’re looking for but there are many things you won’t be able to do unless you create an account. These include:
Making your own posts. Although you’re able to find useful information just by reading other members’ posts, you might still have a lot of questions in your mind. Either you want to start a new topic to talk about them in detail or you want to reply to a comment on a thread. These won’t be possible unless you create a new user account.
Viewing other members’ profiles. Member profiles include information about the country or region they are from, whether they are a patient or a caregiver, and details about their disease and treatments. Maybe you came across an interesting post and you want to learn more about the member. Or maybe you’re looking for members who are from the same country as you. Having a user account allows you to see other member profiles and find information that may be relevant.
Sending private messages. Aside from being able to post publicly and commenting on a thread, having a user account also allows you to send private messages both to other members and moderators. In case you want to discuss a topic only with a specific person, this is possible by sending private messages when you have created your account.
Click here to create an account and join.
Latest Discussions
- Rant – Chicken? Egg? Rheumatologist(S)?by Northernelf on October 29, 2024
On my second rheumatologist post diagnosis (after a few others looking for a diagnosis). He is 5 hours away which makes appointments hard, so many are telephone appointments. Fortunately, one has started practice about half an hour away but the waiting list is long. FWIW, I saw the diagnosing rheumie for 3 years and have only been with this new one for just over a years, seen him in person once. […]
- Biologics Infectionby Amos on October 15, 2024
Next week I will have finished 5 months of Taltz. It has worked about 85% on psoriasis and maybe 50% on enthesitis/joint pain. It’s hard to measure effectiveness unless I go off of it completely and then I would know if it is helping the PsA issues. For now, unless I stay on Celebrex, my daily function is limited by pain and stiffness. And of course it all ramps up at night so I flop around […]
- Strange Throat / Neck Issueby j0nn13 on September 27, 2024
Hi All, I’ve been having some unusual issues with my face, throat and neck for the past few months and wondered if anyone had experience similar or had any thoughts or suggestions! I’ve finally got a consultation with ENT next week and wanting to get the most out of it. Bit of background (sorry bit long). I’m 45, M and until end of May this year, no real health complaints other than having […]
- COVID decreased my pain?!by Jo1 on September 22, 2024
Is this diagnosed w psoriatic arthritis about 12 years go I have been on many biologics over the years without much relief. I am on an NSAID and opiates currently and my pain has been pretty stable. I was started on Humira again because it’s the only biologic that I could tolerate w/ a financial assistance program that I qualified for. I had been on it before without any relief of symptoms and […]
- Now on Simponi – Have questionsby tamac on August 27, 2024
After much discussion with my Doc and battling with CVS trying to bill me $4,000 for Rinvoq they sent me without authorization, I am now on a Simponi infusion. Medicare is supposed to cover it, and my Doc has wanted to dose me based on my weight for a few years. Had my first infusion yesterday. Now the question. If anyone else is on a Simponi infusion, did it make you feel like crap the next […]
