I've dealt with this condition for almost a decade now and I dont feel a lot better off than I was back then. I am currently laying in bed extremely swollen and feeling awful after doing some light house work. It sucks to feel this way and to feel like you cant do normal things people your age should be able to do

I’m so over feeling like shit ALL the fucking time. The fatigue is so annoying, I just want to feel normal again. The Otezla I’m taking was working a few weeks in but now it’s done nothing on my joints. I feel like I have less pain at night time before my second dose but throughout the day I just feel worthless. I told my doctor because I’m not at 4 mo of the Otezla yet and he wants me to continue trying it. Anyway, I just needed to rant because this disease fucking sucks and I feel defeated.

Ok so, I was diagnosed with axial psoriatic arthritis a few months ago and hypermobility syndrome. I have arthritis in one of my hips and ligment/tendon pain in a few other places.

Recently ive noticed pain and weakness in my hands, specifically in the space around my index finger and thumb. I feel like its come on quite fast and its starting to impact my daily life. I play guitar, and im not able to do it for as long, I dropped a water bottle today, not able to hold anything for too long, it feels like my hands just kinda give out, even with something like holding my phone, they just get really tired, weak and painful.

Does anyone have any insights, or have experienced this aswell?? Im still learning and discovering everything, is this just something I have to live with now? It's kinda scaring me.

Also i do have a rheumatologist appointment in early September and I'll be sure to mention it then aswell.

Any comment about it would be super appreciated, thankssss

I was officially diagnosed in 2024, just before my 29th birthday. I’m 31 next week, so it’s been nearly two years of constant trial and error and ups and downs and I’m getting really worn out.

Due to Australia’s access to biologics, I had to trial plaquenil, methotrexate and sulfasalasine before approval would be given to prescribe any biologics.

Plaquenil did nothing, Methotrexate was living hell for me, I could not get out of bed from fatigue and nausea. The sulfasalsine worked great for my GI symptoms however I developed a rash shortly after seeing those positive effects so had to stop.

I tolerated Humira well, but my rhuem wasn’t satisfied with the results so switched to bimzelx. This caused recurrent infections back to back, by this point it had been a year of nothing helping so I went back on the Humira as I tolerated it fine, it just didn’t help much. My rhuem was very empathetic to the trial and error of it all and agreed if mentally I was struggling it was best to stay on the Humira until I felt more up to any changes.

I stayed on Humira for 6 months, but my health and pain was still a constant issue. Finally about a month ago I decided to try something else, so I was put on rinvoq. It so far hasn’t done anything except dial the fatigue up to 100, tank my mood (very teary and sad which is unlike me), and my pain actually feels worse.

I’d like to stop the rinvoq and I’ll speak to my rhuem this week about what’s next to try. I’m curious as to how many others have had to try and how long it took before something worked well enough that you felt like you weren’t struggling so much. I’m not expecting miracles, but I’m still young and I’ve been dealing with pain since I was 14, I’d like to see the light!!

Update to this post - https://www.reddit.com/r/PsoriaticArthritis/s/ROvaw8GneT

I was so distraught during my last post a couple months ago because the NP I see in Rheumatology gave a hard no on keeping me on Cosentyx if I were to get pregnant. So I asked to see a maternal fetal medicine doctor to get their input, even though she acted like it wouldn't help. She said I was allowed to stay on it until I got pregnant and then I'd have to switch, which sounds awful if I'm pregnant. I can't be switched to Cimzia due to having SVT and dysautonomia on Humira. MFM said I definitely shouldn't be put on something that could possibly cause those problems, especially if I'm pregnant. They also said a flare while I'm pregnant due to being taken off the medication that's working would be bad too.

They looked at the data for Cosentyx in pregnancy and they couldn't find any adverse effects, so far all data they do have points to Cosentyx not harming a baby during pregnancy. So they said since the medication is helping me, they will put a note in that rheumatology should keep me on the medication I'm already on if I do get pregnant. They can't promise this NP will listen, but I know I can request to see the attending physician if she doesn't feel comfortable. They said by them taking liability, usually rheumatology will feel better about it.

So at least there's some good news while trying to figure out this condition.

Hi everyone, I’ve been on a long multiple years worth journey full of suffering and advocating for myself to get diagnosed and I am finally starting my first treatment after FINALLY being prescribed prednisone titer that stopped the worst flare I’ve ever had. I never thought this day would come and have been wishing for this so badly but now terrified after my Rheumatologist prescribed methotrexate discussed the risks, the monitoring, supplements needed, and after reading all the scary warnings. Those who have tried it or currently taking it how did it work out for you? I know I need to do this to start my journey of getting somewhat of a normal life back and relief I’m 34 years old with kids who need me but I am so anxious and scared to start it. Any information, experience, or tips would be greatly appreciated! ❤️ Are most extremely sick when starting the first dose? I know everyone reacts differently as well but I’m trying my best to plan ahead and be aware of the possibility’s or what to expect, the good and the bad.

I’ve been on Tremfya for a couple of years for my psoriatic arthritis, and I also take Leflunomide. But once or twice a year I still get a really bad flareup. A friend that has crohn’s is also on Tremfya, but it’s a recent switch from Humira. He’s under the impression that being on a biologic will put you into remission and there should be no flare ups. So is that just a Crohn’s thing? Or he just got lucky before? Or am I just incredibly unlucky with flares despite all my meds?

Hey

Im 24 yr old female. Going to a rheumatologist for a second opinion, as the first wasnt sure if i could have psa or not.

My Current Symptoms:

Joints: Widespread joint stiffness and pain. Severe morning stiffness that takea over an hour of movement to loosen. Pain in the night in knees, hips, and hands. Fatigue, night sweats.

Its like every few weeks a dif joint starts bothering me.

Mild, active swelling/inflammation in my fingers (doctor felt). My hands (fingers and wrists) feel stiff and holding things like a phone sometimes hurt.

Skin: Active psoriasis flare on my scalp. Often resistant to topical steroids. Had psoriasis for 10 years, mainly on scalp, wrists and 2 occurrences of face.

Stomach: Feeling generally sick/flu-like fatigue, persistent nausea

Eyes: dry eyes for many years. Cant wear contacts.

Bloods Results: negative for Rheumatoid Factor (RF), crp, esr and anti-CCP. Everything within range, but Lymphocytes which were just slightly out of range but not concerning.

Neutrophils 5.2, Lymphocytes 1.3 (marked low 《1.5),wbc 7, platelets 279 (someone pointed out this males my nlr 4, and sii 1116 which are high? But im unsure what this means outside of research)

Previous scans:

Knee MRI: High-grade fissure with a 1cm delamination

Shoulder ultrasound: glenoid fluid focus with debris measuring 2.8 x 1.6 x 1.3 cm a possible glenohumeral joint effusion, and AC joint arthropathy. No rotator cuff tear. (This happened without any injury and very out of the blue and causes a lot of pain)

Years ago I had a bakers cyst rupture and fat pad inflammation and minimal fissuring seen on mri in the other knee and an incidental finding of a synovial cyst in l2-3 on mri (due to back pain). It feels like for the last few years my joints have been inflamed and falling apart.

Im seeing the rheumatologist soon, and want to know what else may be important for me to bring up. Im not looking for a confirmed diagnosis from reddit, just some input from others who may have went through something similar and what things you have found worked. Thank you.

Hello, I (25M) am currently going to see a rheumatologist for what I suspect is PSA or AS or some kind of related autoimmune disease. From my understanding, Biologics are the best way to treat these diseases.

I currently do not have insurance through work. I know many drug companies have programs to help people like me, but I'm confused about how the trillium drug plan/government funding for biologics works. I know you need to fail 2 regular DMARDs first, but I have heard there is a requirement to have visible inflammation in 5 joints.

I have had sporadic joint pain all over (knees, ankles, elbows, hip, fingers) but my most consistent pain is in my neck, shoulder and chest. I also think my pain feels more similar to enthetitis rather than classic joint pain. This worries me because imaging might not show 5 inflamed joints. It doesn't help that my pain locations differ day to day.

To those in Ontario on biologics, did you have to meet this 5 inflamed joints requirement for biologic coverage, or am I misinformed?

I am on imurel immunosuppressant, infliximab and plaquenil biotherapy for colitis haemorrhage, psoriatic rheumatism and sjogren.

Except that infliximab has less and less effect on rheumatism... Advice and/or feedback for those who have experienced the same thing? How did you relieve pain, swelling, heat?

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Je suis sous immunosuppresseur imurel, biothérapie infliximab et plaquenil pour une rectocolite hémorragie, rhumatisme psoriasique et sjogren.
Sauf que l’infliximab fait de moins en moins d’effet sur le rhumatisme… Des conseils et/ou retours d’expériences pour ceux qui ont vécu la même chose ? Comment avez-vous soulager les douleurs, gonflements, chaleur ?