Psoriatic Arthritis
299 Members
This online group serves the members of our arthritis community who are living with Psoriatic Arthritis and related conditions from across the country. We invite those who are looking for support, education, robust programming, expert speakers, and connection to join us and meet others who understand.
Live Yes! Connect Groups offer connections, education, and empowerment. Adults living with arthritis from across the country come together online for professional- and volunteer-led sessions on topics, as well as fun group activities.
We offer a place of understanding and encouragement for both people living with arthritis and their loved ones. Group participants become self-advocates, develop self-management skills, and learn how to not just survive life with arthritis but to thrive.
Upcoming Events
-
Sunday, June 1st, 202512:00 PM ET1h 30m
-
Virtual Event
- 27 people attending
Join us for a casual coffee chat to talk all things PsA.
There will be time to connect with others. Friends, Family, and Care Partners are always welcome to join meetings.
We respect privacy and confidentiality and do not record our online meetings.
Registration is required to receive the Zoom link to participate via video or phone. Being on video is not required, nor having a Zoom account. A confirmation email will be sent upon registration with the Zoom link. If you do not receive the registration confirmation, please check your spam folder. Please plan to log in a few minutes early.
We look forward to seeing you soon!
-
Sunday, August 3rd, 202512:00 PM ET1h 30m
-
Virtual Event
- 16 people attending
Join us for a casual coffee chat to talk all things PsA.
There will be time to connect with others. Friends, Family, and Care Partners are always welcome to join meetings.
We respect privacy and confidentiality and do not record our online meetings.
Registration is required to receive the Zoom link to participate via video or phone. Being on video is not required, nor having a Zoom account. A confirmation email will be sent upon registration with the Zoom link. If you do not receive the registration confirmation, please check your spam folder. Please plan to log in a few minutes early.
We look forward to seeing you soon!
- Event List
-
Sunday, June 1st, 202512:00 PM ET1h 30m
-
Virtual Event
- 27 people attending
Join us for a casual coffee chat to talk all things PsA.
There will be time to connect with others. Friends, Family, and Care Partners are always welcome to join meetings.
We respect privacy and confidentiality and do not record our online meetings.
Registration is required to receive the Zoom link to participate via video or phone. Being on video is not required, nor having a Zoom account. A confirmation email will be sent upon registration with the Zoom link. If you do not receive the registration confirmation, please check your spam folder. Please plan to log in a few minutes early.
We look forward to seeing you soon!
-
Sunday, August 3rd, 202512:00 PM ET1h 30m
-
Virtual Event
- 16 people attending
Join us for a casual coffee chat to talk all things PsA.
There will be time to connect with others. Friends, Family, and Care Partners are always welcome to join meetings.
We respect privacy and confidentiality and do not record our online meetings.
Registration is required to receive the Zoom link to participate via video or phone. Being on video is not required, nor having a Zoom account. A confirmation email will be sent upon registration with the Zoom link. If you do not receive the registration confirmation, please check your spam folder. Please plan to log in a few minutes early.
We look forward to seeing you soon!
Facilitators [3]
Members [299]
You must log in to read and comment.
Arthritis.DTO.Models.ConnectGroups.Forum?.ForumDisplayName
Comment
Comments [28]
Hi Angela
I've attended a few of the conenct group sessions but hard for me to make many on the weekends. I'm wondering if there is a 1:1 "buddy" I might be able to set up some time to chat with regarding my PsA symptoms. I was diagnosed less than a year ago and still trying to figure it all out. Specifically I have enthesitis in my feet and ankles and I feel like many other folks I've heard on these calls tend to have more specific "joint" pain or more "typical" symptoms of PsA. I don't have much outwardly visible swelling/sausage digits and even my inflammatory markers are pretty low. Anyhow... just looking to hear a bit more from others with this enthesitis and how it manifests for them and and tips/tricks folks have for dealing with the ankle/foot pain. Thanks!
Hi Lisa,
Thanks for posting. I find enthesitis is more frequently coming up in our meetings, many of us have it as a major symptom of our PSA, myself included.
As far as a one on one body program, there's not one of those officially through the connect groups, but you are welcome to email us facilitators at any time and we are happy to chat with you. Our emails are at the bottom of the automated reminder emails that go out about meetings and I believe also can be access from the main connect group page for the PsA Group.
Also participants are welcome to use the discussion board just like this for conversations that come up in between meeting session, with the caveat that any tips or tricks provided by facilitators or other connect group members should not be taken as medical advice. Personally I find ice to be more helpful with enthesitis than heat but I have had a hard time managing it well with anything other than my biologic medication. My feet and ankles have been a major problem area for me too. Everyone is different though so I encourage anyone else dealing with enthesitis to share their experiences here.
The Arthritis Foundation has some additional resources, including a helpline which does provide one on one support, which I'm going to link below.
Additional Arthritis Foundation resources are available at the following links:
If you need personal assistance, the Arthritis Foundation offers one-on-one support from trained staff through arthritis.org/helpline. If you need to leave a message, staff will usually respond within two business days. Call toll-free at 800-283-7800.
Hello,
I have psoriatic arthritis, fibromyalgia, osteo, osteoperosis. I have been on Enbrel for 9 months. The doctor wants to either to add Metotrexate to the Enbrel or start on Humira by itself. I was wondering if anyone is taking these medications. Are they working? Any bad side effects?
Thanks
Ivette
Hi Ivette, thanks for posting. Personally I have been on all three of those medication, but not at the same time. I really liked Enbrel but developed antibodies to it and it stopped working after a while. If you are liking Enbrel, your doctor may want to pair methotrexate to lower your likilihood of developing antibodies, a lot of folks are on two meds at a time for reasons like that. Otherwise, side effects can really vary from person to person. Definitely let your doctor know if you have concerns about something in particular.
Hi! I am 39 this year. I have been having symptoms of psoriatic arthritis since I have been around 19 years old, but did not get a diagnosis until I was 37. I have also been diagnosed with fibromyalgia. My main symptoms are: joint swelling, tendonitis, spinal pin/inflammation, chronic pain, chronic fatigue and mental depression and anxiety. I have only found relief from steroids, and jak inhibitors (xeljanz and Rinvoq), as other biologics have failed to give me any relief, and methotrexate helped some but the side effects were not tolerable. My question is, with my condition being progressive and resistant to multiple trials of medications, would I potentially qualify for disability. I work full time and it is exhausting and painful to sit( with some standing) at an office job, within a career in healthcare administration for 15 years now. I would love to work part time, but can't imagine working full time much longer.
Hi Mindy, welcome to our group and thank you for sharing. I'm sorry that you have been having a difficult time finding medications that work for you. Many of us know what that is like and I hope you will join us on future meetings.
For the likelihood of qualifying for disability I would suggest reaching out to a lawyer and / or your doctor about the specifics of your case. They can provide a much better idea of if you would qualify or not than we can as we volunteers aren't legal or medical professionals ourselves.
Here's a few resources about pursuing disability and work accomodations that may help you start your decision-making process. https://www.arthritis.org/health-wellness/healthy-living/daily-living/disability-for-arthritis-how-qualify-for-benefits
https://www.arthritis.org/health-wellness/healthy-living/daily-living/work-life-balance/workplace-rights-disability
As always, this discussion board is open for anyone who has experience going through that process to chime in and say what the disability process was like for them .
Hi, All
My name is Kelly, and I am just joining this group. Honestly, I'm not sure which group to join. I am 54 and was originally diagnosed with psoriatic arthritis in 1990. Then a few years later, I was diagnosed with fibromyalgia. Then around 2017, I was diagnosed with osteoarthritis. I'm not sure which one I have, or if I have a combination of all three. Can anyone relate to this? I started showing signs of psoriasis when I was eight years old. In 1990, I came down with rheumetoid symtoms--sausage fingers and toes--and was diagnosed with psoriatic arthritis. After one cortizone shot, those symptoms went away. But a few years later, I was sore all over and had a lot of fatigue. I failed that fibromyalgia pressure point test. I seemed to have knee trouble in my early 20s and always assumed it was fibromyalgia. But in 2017 I had MRIs on both knees and discovered I am close to bone-on-bone. Now, I'm looking at knee-replacement surgery for both knees within the next couple of years. I am on Otezla for my psoriasis, but it has not stopped the progression of my knees. I take meloxicam for my knee pain. Knock on wood, but I am not experiencing arthritis (yet) elsewhere in my body--only my knees.
Does the above story resonate with anyone? It would sure be nice to know what I have. My doctor thinks I had active psoriatic arthritis when I was younger that activated osteoarthritis in my knees. But does anyone have any other ideas?
Cheers and thanks!
-Kelly
Hi Kelly, welcome! You are welcome to join as many Connect Groups as you want. Our next PsA meeting will be in April and we would be happy to have you join us!
It is possible to have fibromyalgia, osteoarthritis and PsA all together, this is a topic that comes up frequently during our Connect Group meetings. The sausage digits (dactylitis) is a pretty common symptom for those of us with PsA and fatigue is as well. PsA is a lifelong condition but some folks report having periods of remission with little to no symptoms. Have you been seeing a rheumatologist?
- Angela
Hi Kelly,
I've had psoriatic arthritis for over 40 years, although it took about 7 years of symptoms before I received a diagnosis. I'm also of an age that people start to show signs of osteoarthritis. Every time I have x-rays for any reason, the radiologist report says osteoarthritis. I truly believe that when a radiologist sees arthritic joints on x-rays they assume it's osteoarthritis as they never have any idea about your diagnosis or history. I just had a discussion with my rheumatologist about this, reminding him of my need for total knee replacement when I was in my 40's. It clearly was not osteoarthritis but would have been labeled that on a radiology report. I consider psoriatic arthritis to be my issue, as that's what I've been treated for, and that's what has impacted my life.
We'd love to have you in our Connect group.
Penny
Hi Kelly,
I've had psoriatic arthritis for over 40 years, although it took about 7 years of symptoms before I received a diagnosis. I'm also of an age that people start to show signs of osteoarthritis. Every time I have x-rays for any reason, the radiologist report says osteoarthritis. I truly believe that when a radiologist sees arthritic joints on x-rays they assume it's osteoarthritis as they never have any idea about your diagnosis or history. I just had a discussion with my rheumatologist about this, reminding him of my need for total knee replacement when I was in my 40's. It clearly was not osteoarthritis but would have been labeled that on a radiology report. I consider psoriatic arthritis to be my issue, as that's what I've been treated for, and that's what has impacted my life.
We'd love to have you in our Connect group.
Penny
I want to hear from anyone else who has taken methotrexate and sulfasalazine and had their condition continue to deteriorate. I'm panicking that the diagnosis is just wrong; but is it possible I'm just on the wrong meds? Hate seeing my mobility go from great to none and meds doing next to nothing to stop the decline after 2.5 months.
I am not on either of those meds but just wanted to say hang in there and what you are experiencing is common. Most health insurance make you start on the cheap oral meds first. I would contact my rheumatologist to tell them and maybe they can try a biologic since the oral meds are failing.
I've Just been diagnosed and really conflicted about taking biologics because of the potential side effects. Has anyone been able to stay away from them and still manage the joint pain? What medication has worked for you?
Hi Debby. Welcome! We talk a lot about the different treatment options during our Zoom calls but as a disclaimer, we aren't medical professionals ourselves so we really share our individual experiences. What works seems to vary from person to person and I always encourage folks to have a discussion with their doctor if they are uncomfortable with certain medications or have other conditions that may come in to play.
Our next meeting is December 1 and if you'd like to join us, you can sign up on the events page.
Hi Melody. If you don't see an in-person group already active there and would like to start a group, check out this link here. I can also put you in touch with some other folks at the Arthritis Foundation if you would like to discuss starting a local connect group. For Arizona, it looks like the state is under the executive director for Nevada.
Our psoriatic arthritis connect group is a national group which means we meet virtually through Zoom and have members from across the country. We welcome you to join us at our next meeting which is December 1st. You can register through the events tab.
Hi, I'm a new member and I am looking for a group in Arizona. I did not see my state listed as having any groups.
Has anyone been dx with a positive HLA-B27 antigen ?
Kelly
Hi. I am newly dx with psoriatic arthritis. I'm wondering if anyone has done certain exercise that helps with symptoms. Also any natural diet or supplements that help. I am already on 2 meds, methotrexate for the PsA and tremfya for the plaque psoriasis.
I have JPsA and my rheumatologist HIGHLY recommends swimming and running. Mainly swimming, cause of the water current stretching out your joints (in a good way, don't worry). But running really worked for me. I love it.
I have JPsA and my rheumatologist HIGHLY recommends swimming and running. Mainly swimming, cause of the water current stretching out your joints (in a good way, don't worry). But running really worked for me. I love it.
Hi Jen -
Depending on symptoms, I use various exercises to help with my psoriatic arthritis. Daily walking and stretching are my baseline. On top of that, I add weights and yoga (and sometimes swimming). For me, specific diets or supplements have not really helped. (I was diagnosed in 2016.) The greatest help has come through getting on a biologic. I had to "fail" treatments like methotrexate before I could get on a biologic. Hope this is helpful. Hang in there.
I do seated chair yoga due to the joint pain in my ankles, which prevents me from doing most weight-bearing activities. As for lifestyle and diet changes, even before I had a diagnosis of psoriatic arthritis I went on a gluten-free dairy free diet, which initially did help my, joint pain in my fingers. I also take 1500 mg of turmeric with black pepper, 1200 mg fish oil and 5000 iu vitamin D. I try to avoid sugar and limit alcohol, as those flare up my joint pain and psoriasis. I also have a lot of fatigue which is only helped by rest and trying to pace myself. Easy to say and hard to do!
I would like an in person support group also. I do not find any in Oregon. Can I start one? And how do I do that?
Hi Margaret, even though your post is from March 2024, I just saw it & it definitely caught my interest. I too live in Oregon (Springfield), and would be interested in an "in-person" connect group. Wondering where you are located & if you ever got a group going? Moving here from WA a few years ago, I was saddened to find out, that there was not much going on with the arthritis community. Having the Psoriasis Foundation move their headquarters out of OR, for reasons totally understandable, probably didn't help the local PsA community either...I'm making 2025 my year to connect & get involved! I look forward to hearing from you.
Hi there! Here's the page for Oregon here. If you don't see an in-person group already active there and would like to start a group, check out this link here .
Hi, I have had my diagnosis recently changed from osteoarthritis to psoriatic arthritis. I am greatly relieved to have a diagnosis that recognizes the inflamatory nature of my joint problems. It has taken years of increasing painful joints to finally get this diagnosis and fighting with various doctors to get treatment as all my joints became involved and they kept insisting it wasn't inflammatory. Recently I traveled 2 hours away to a bigger city to go to a rheumatogist. Finally someone who believed me and explored my problems! I was not expecting the psoriatic arthritis diagnosis. I have had mild psoriasis since I was a toddler but I just didn't realize it was a factor until the rheumatologist cross examined me about flaking spots. Recently my rheumatologist prescribed Rinvoq and it is really helping my severe joint pain and severe morning stiffness and my 'spots' are better than they have been in years. I joined this group to understand how others deal with this disease and the issues it causes.
Hi there, thank you for sharing your story! I can imagine how validing is it to finally get the correct diagnosis. Welcome to the group! We would love to invite you and all PsA group members to our next virtual event. Check out the events tab to see the link to sign up for April's meeting!
I need help with managing the fatigue. I can't function because of it. It's basically debilitating me.
The fatigue can be really challenging, I hear you! I am always looking for ways to mitigate that too. Welcome to the group and thank you for sharing. We would love to invite you and all PsA group members to our next virtual event. Check out the events tab to see the link to sign up for April's meeting!
Hello everyone,
My name is Brian. I am 43, a husband, father and veteran still serving. I am fairly new to this. It has been nearly a year since my diagnosis and everyday is a new day. Feeling great in the morning or evening, fatigued most of the time, constant pain. What are things that can be done to have some consistency or plato the symptoms?
Hi there, thanks for joining our group! I've been diagnosed about the same amount of time as you and I agree, trying to reach consistency has been a challenge. I've mostly focused on working with my doctor to nail down a treatment plan and a plan B or plan C etc. We would love to invite you and all PsA group members to our next virtual event. Check out the events tab to see the link to sign up for April's meeting!
Tapping this on Sunday Jan 14, at 9:10 am Pacific time, with a "Waiting for the host to start the meeting" message on Zoom--do I hve the wrong time?
Hi! I just recently joined the group! I'm hoping to find others who can relate to me with having PSA cause no one else I know has it. I'm 22, so I feel like I'm missing out on a lot because of my diagnosis. Glad to be here! Thanks Yall!
Welcome to the group! We would love to invite you and all PsA group members to our next virtual event. Check out the events tab to see the link to sign up for April's meeting!
I was diasgnosed with PsA when I was 19 and I am now 27. I know what you are going through. When you say you have arthritis in your 20s people always look at you and say, "aren't you a little too young for that?" The good comes with the bad though.
Hi Everyone, I am a brand new member....and I am definitely still finding my way around this social media medium. Please forgive my ignorance. I have a question for you'll. My PSA has been diagnoses without bloodwork to support it. I understand few people are seropositive. But, I am struggling to come to terms with the dx. Denial has been my friend. If any of you have ideas or suggestions of things that support your dx even though you are sero-negative, please share this with me. I am in my 60's and have suffered for many years. Thank you! Kellie
Hi there! Welcome to the group! I think many of us also have pretty standard bloodwork. I find my doctor looks at my joints, my skin and other physical symptoms as well as how my symptoms impact my quality of life and ability to do daily tasks. All of those are things support my diagnosis to him and if it's good enough for my rheumatologist, then I trust his thoughts. I wasn't expecting my diagnosis to be PsA orginally either, I thought it would be something else.
We would love to invite you and all PsA group members to our next virtual event. Check out the events tab to see the link to sign up for April's meeting!
Hey there -
I hope veryone had a great Memorial Day Weekend!
I wanted to check in - how has the change in weather impacted your PsA? If any?
Caitlin
Hi
Second Valerie to join the group.
Sorry to see others symptoms are greater than mine. Skin is clear with meds, but joint stiffness has been a concern. Staying active seems to help.
Look foreward to events and discussions
Hi There - Welcome to the group! Safe space here - we are here to support you.
What are you doing to stay active? I am currently biking whenever my body will allow me to.
I am new to the group and was wondering which medication has worked well with psa. I have tried skiyrizi, taltz and had infusions, now I am on Tremfya. I just started an injection with that. My Dr feels this will be the one.
has any one used Tremfya and if so how have the results been?
Rodger Smith
Hi Roger -
I was on Tremfya for a couple rounds and it didn't work for me - previously I was on Remicade and recently was able to get back onto infusions. Overall I think my body was going through a crazy transition and the pain was too much for me - I don't tie that to the drug.
Thank you for allowing me to be part of your group. Having PsA is frustrating in itself, but I guess some consider me lucky since I don't have obvious psoriasis skin problems. Mine are all internal, mixed with gout and possible osteoarthritis in my cervical spine. Also due to other health issues I can't take any ibuprofen or other meds similar to it for pain. I was on a medication and had to stop due to liver damage. Now trying to get insurance to approve biological meds
Renee - how are you feeling now? I can definitely relate to the internal piece of PsA - the stomach issues and the other "fun" symptoms are tiring in itself. How can we support you here.
Right now, i can't handle the depression
Sue - I am sorry for the delay here, how are YOU doing?
Sue, I sorry about the depression as I have it also, but asked my Dr to give me a few months before she considers mens. Don't get me wrong we all need a little help once in a while especially trying to deal with PsA. Please discuss how you are feeling with someone because it can help alot.
Hi, I'm a new member but I've had psoriatic arthritis for over 12 years. I also have fibromyalgia and depression.
New member here. So happy to see the live yes psoriatic arthritis group. Like Valerie in the comment below, I'm hoping for an active support group. If nothing else, maybe Valerie and I can connect 😊
Vicki
Hi Vicki!
Welcome to the group! We are so happy you are here. Please do sign up for the April 20th Meeting at 8pm EST / 5pm PST. I look forward to seeing you there.
Hey folks!
Joining for the first time and having some difficulty finding info on when/ how to connect.
I hope there is an active support group! I'm very keen on meeting other people who are dealing with PsA.
Thanks for pointing me in the right direction...
How do I sign up? I went to Events and I don't see a link or anything
Hi Valerie -
Welcome!! Please go to "Events" and sign up for our next session on April 20th at 8pm EST / 5pm PST. We look forward to welcoming you to the group and getting to know you better.
Hey there! Just got the email survey regarding meeting times. I didn't see a box to put the info, but I generally work until 4:45 PST most weeks and would be late to a weekday meeting- how long do the meetings go, and is it okay if I join later in the meeting? I'd definitely vote for weekend meetings if at all possible. Excited to connect with the PsA group. :)
Hey there - we got your response, thank you! Joining the meeting later is completely fine, no worries at all.
Happy New Year!
What is one thing you will like to focus on in 2023?
For me, I want to be better at listening to my body when it gives me signs that a flare up is coming vs. powering through the stiffness and pain.
Let me know which techniques work for you! I am trying to get into mindfulness mediations as well :-)
A little late, but Happy New Year! lol
This year, I am trying to incorporate short meditation sessions into my day to manage stress :)
I'm not sure how this works, but am desperate for someone who understands, and can help me find my way back to positivity. Advanced Lymes Disease led to three types of arthritis, including psoriatic, and a life that I only sometimes recognize. I'm having a holiday flare now, and would like to learn to rewire my brain to better cope with the pain. I'm a strong Christian, and hope to connect with others on the same path as me.
Jane - How are YOU doing? How has faith helped you in your journey? I have found prayer, meditation, and simply just havin support is so helpful in these challenging moments. I am here for you - please reach out if you will like to chat 1:1.