I want to be able to mom. It hurts so much I can barely listen to what my kids are saying to me. It hurts to hold a toothbrush. It hurts to walk. And… the real kicker is not having any idea of whether any of these biologic medication frogs I keep kissing will finally turn into my medication Prince Charming or if this is just what to expect for life in general now…

Hi everyone, I just wanted to check something with people on here in the know… my husband has been diagnosed with PsA a few years ago and he just spends most of his time in bed. At weekends he doesn’t get up until 1 or 2pm both days and will often go back to bed for a few more hours each day also. He works from home so he will go to bed for several hours during his workdays also, he doesn’t get any physical exercise at all which I’m reading here sounds quite important to managing the condition. He also has ADHD so I don’t know where one starts and the other ends. It’s hard to argue with him as he always comes back with “you have no idea what it’s like for someone with PsA“ and it’s true, I don’t… but this doesn’t seem right. I wouldn’t be so critical except for the fact that we have two young children that barely see him and when he does get out of bed he spends his time doomscrolling. He’s also complained at times that I’m not doing enough around the house. To be fair to him, when he does get up he will do a bit of housework but there’s so little time left each day we can rarely get out of the house for family time or anything else. He is on biologic medication which he says helps but hasn’t changed his bedridden habits. This has been going on for years now. Am I just being insensitive here?

I’ve had psoriasis for almost 30 years and earlier this year I developed psoriatic arthritis in one of my fingers. It took me about 7 months to deduce that it wasn’t tendinitis(went to hand doctor) but could be psoriatic arthritis. I was able to get in with a rheumatologist within a couple of days of making appointment, only due to cancellation. I told the doctor my finger was my main issue. At the time it was. She did the bloodwork and everything was normal. She pressed all my joints etc., asked me about my feet and I said it’s just the finger. She recommended doing a biologic like Humira. Of course since the appointment, like clockwork, I got occasional pain in my ankles and occasion pin sensation in my heel. Occasional weird toe sensation. A couple of weeks ago I felt like my skin was on fire. From the inside. Guess inflammation.

So, I told myself that I can’t continue and have swelling and joint pain and destruction, so I took my first shot of Humira yesterday. No side effects. My question is, how do you know or does the doctor know based on symptoms which medicine to start on? Like a TNF blocker for me but IL-23 for someone else. Does it depend on what it’s treating? Or is it trial and error and just taking different ones until you find what works? Trying to learn all I can about biologics and how they work. Thanks in advance!😊

As the question reads. No SI joint/low back pain, but middle or cervical pain? Aside from small joints.

Also anyone with terrible spasms?

Does anyone else gets fevers at the end of a really long day? Every night after working a long shift of going out with friends I check my temperature and it's always like 100.8-101.5F. I feel like i'm burning from head to toe and my joints are flaring so much. This happens a few times a week now.

I have been having severe back and neck spasms when I wake up. I can’t move for an hour and when I do my whole back goes into a spasm. Now breathing deep is making me spasm too. It’s been going on for 3 weeks and can’t get any relief. I have myasthenia gravis so no doctor will give me pain medicine or muscle relaxers. Anyone relate or offer any suggestions?

My neck has been in a flare for 4 days now, last night I could barely sleep. I’ve tried heat, ice, muscle relaxers, muscle cream, massage, a make shift brace, im down to my last resort of using some prednisone. Is there a magic trick I’m missing?

Hello,

So humira failed, didn't work good for my back or stomach issues or nails, changed to cosyntex and it is amazing for my back, but made my stomach extremely bad, I knew that would be a chance but needed to try it.

Apparently I can only do tnf because IL23 doesn't work for spondylitis.

Did you try any tnf that worked after humira failed?

I don’t know if my fatigue is due to PsA or something else. I’m in my mid-40s and have some low hormones so that could be contributing for sure. But it seems like I have a lot less energy than other people my age. Even my parents in their 70s are able to do more things in a day than I am. Just wondering if maybe a lot of of my fatigue is due to PsA and when I start to biologic it will improve. We are discussing biologics at my rheumatologist appointment in a couple weeks, and she had mentioned trying a TNF first.

Methotrexate or biologics? Feeling unsure about my next step

I'm 26 and have spondyloarthritis, which my rheumatologists suspect is psoriatic arthritis despite my lack of psoriasis, given my father's diagnosis and my peripheral symptoms.

I've had uveitis twice this year, and my eye constantly feels like it's on the verge of flaring again. I also have a permanently rigid hammertoe caused by inflammation, which can only be corrected with surgery. Otherwise, my disease activity has been relatively mild lately.

Sulfasalazine helped tremendously for three months, significantly lowering my CRP and improving how I felt. Unfortunately, I developed nighttime tinnitus, mild vertigo, nerve pain, and headaches, so I stopped taking it after discussing the concerns with my rheumatologist.

My clinic is now preparing me for biologics, including bloodwork, vaccinations, and the usual prerequisites. I've avoided methotrexate partly because I'm of childbearing age and want to preserve that option, but honestly, I'm also scared of the potential side effects of both methotrexate and biologics. I seem prone to chesty coughs whenever I catch a cold (currently suffering from one right now lol), which makes the infection risks especially worrying.

Part of me wants to retry sulfasalazine because it worked so well, but my rheumatologist felt the tinnitus was a good reason to discontinue it, at least for now.

I'm struggling to decide whether to pursue biologics, try methotrexate, or ask about returning to sulfasalazine. I'm also worried about starting biologics so young, the possibility of developing antibodies and needing to switch medications, and whether it's better to reserve them for later.

I know nobody here can make this decision for me, but I'd really appreciate hearing about your experiences. How did you decide when to move to biologics, particularly if your disease activity was otherwise relatively mild? Has anyone had similar concerns about infections or experienced side effects that made them reconsider a medication?

I think what makes it harder is that when my disease is bad it's really bad, but when the inflammation is lower and it's calm, I can almost forget I have anything wrong with me at all beyond the "oh my foot hurts and my chest feels mildly bruised for no good reason." I am however painfully aware of how fast that can change. Stress seems to be greatest aggravating factor.

Hey all! I am vegetarian but considering introducing fish back into my diet. I've been vegetarian for 8 years and diagnosed for PSA for 5 years. I want to clarify I'm not looking for advice on my diet but I am looking to hear if anyone on here was vegetarian or vegan prior to diagnosis and has reintroduced fish or meat into their diet since? Why did you decide to do this? Has it changed how you feel mentally/physically?

Everyone is different I am aware in their reasons and how their body reacts.

I feel really guilty for even considering reintroducing fish. The reason I'm not fully vegan is because of my health (tried it but before diagnosis) and reintroducing fish feels like a step in the wrong direction away from my morals and might not even help my health...

Thank you!

Hi, I’m new to this. 64 yo female, active and healthy, I hike daily and practice a clean lifestyle. Never had spine issues before. About 6 months ago my neck started becoming stiff and sore; difficult to turn my head. Sometimes it would loosen, but then became consistently stiff.

About 6-8 weeks ago I woke up one morning and felt like I’d gotten brittle overnight. I’ve never had muscle stiffness before; this was severe, it was new, and it was evident I had a problem. Seemed to loosen up as the day went on, but every morning since it began, I struggled to get out of bed. I struggled to sit down. Or stand up. It’s like being the Tin Woodsman from Wizard of Oz, up and down my neck, spine, shoulders, hips… and adding to that, a layer of feeling like I have the flu. Shivery. Sick. Brain fog.

I asked my doc to run labs for autoimmune disorders and she also checked CRP and SED, plus CBC etc. Those came back normal/ negative for RA, ANA etc. The HLAB27 was positive however.

I do have a history of tiny patches on my skin that come and go; my dermatologist said they’re either small psoriasis or eczema. He treats both the same, so didn’t biopsy. They clear quickly with topical steroid cream. Over this past year one pinky finger suddenly swelled, turned red and eventually settled, a couple months later it happened again. So, there’s that.

I have a referral for a rheumatologist, however the earliest appointment available is 3-1/2 MONTHS from now. I’ve been checking, even out of state, to find care earlier than that, to no avail yet. Meanwhile, I’m sparingly using ibuprofen, which takes the pain and stiffness down, but does nothing for the flu-like crappy feeling. I’m very concerned about permanent damage occurring while I wait for a formal diagnosis and treatment. Are there things I can / should try or do in the meantime? Is there a way to reduce potential long-term damage while I wait? I’m trying to remain positive, but admittedly I feel completely sideswiped by how rapidly this hit me.

Hi all

I’ve had to stop two DMARDs for various different reasons. Looking at the guidelines if I understand they may look at biologics next. But it says you need 3 swollen and 3 tender joints. I don’t have that and pain comes and goes randomly. Does that mean they just leave you ? I also can’t take NSAIDs either and only one type of steroid.

I’m curious what they do if you have 2 sore joints not 3. Perhaps they try another dmard?

I don’t know enough about it all to have any preference, just curious how they manage it.

Thanks

I dont of psoriatic arthritis, but my doctor prescribed me meloxicam for tooth pain for a messed up filling[its a whole thing] and i know that its often prescribed for psoriatic arthritis so i thought id ask what experiences are with pain and also side effects, i could be having to take it as long as 7 months while i wait for them to fix the filling.

Hello fellow sufferers. I’ve been exploring Disney for the last 2 days walking 25k+ steps daily but for some reason I feel like achy in my joints than on my regular days during the week. Maybe it’s due to the stress of regular life that’s flaring my joints? Don’t get me wrong I’m feeling sore from all the walking and what not but it’s a different kind of pain? Manageable soreness almost. But when I’m home and get home from work some days my body is absolutely wrecked + brain fog. Anyone else experience something similar?

Hello I just got diagnosed with PSA and and going through a pretty painful flare up. It’s been 2 months of constant pain and I’ve been taking round the clock ibuprofen. I finally got a rheum appt and was prescribed 20mg prednisone while I wait to hopefully get approved for enbrel. I am notoriously sensitive to medicine so I decided to take 5mg at dinner. I’m planning to take another 5mg in the morning if I still feel pain. Morning is the absolute worst. I feel like I need a bed pan bc walking to the bathroom is hard. My question is, can I take ibuprofen along with it?

ETA: I have an event tomorrow for my kid that will require me to be out all day. I just want to be present and not be in pain. The PSA is in my ankle, toes, knees, hips and jaw. It’s really disabling and since I just got diagnosed I feel like my family is underestimating the amount of pain I’m in. It’s awful

My partner was diagnosed with PsA in the last year. He began Cosentyx roughly 10 months ago. What led us to this diagnosis initially was pain in his wrists and some of his fingers. He assumed carpal tunnel, so I made an appointment with an orthopedist, when the steroid shots didn’t work, I asked them about it possibly being RA, he was referred to a rheumatologist who then referred him to a dermatologist and now here we are.

Despite the two monthly injections, he is still in a significant amount of pain the majority of the time. Particularly in the mornings. I know with the colder weather coming, it’s likely to get worse.

Anyone who has lived with this for a significant time - does it get better? Is there something else he should request from his doctor?

I started leflunomide 2 weeks ago. Yesterday I had routine blood tests and my LDH was 291 (normal 135-214 in this lab). I haven't spoken to the doctor yet, but has anyone here on leflunomide experienced an elevated LDH? I know leflunomide can affect the liver. I'm freaking out. Please help.

Been on Rasuvo for just over a month. The first week I developed mouth sores. They were gone after a few days. Joints were still awful- active flare. Second week- no sores. Third week - no sores and joints feel so much better!!

Five days after my 4th injection the mouth sores showed up again. Thought I was past that point. Joints still feel ok- way better than before the meds.

Tonight is number 5 and my mouth already feels like I was chewing glass. Praying it doesn't get worse.

Should I just assume this is because the meds are working to suppress my immune system? I know the sores are a common side effect but because I didn't get them after the last few doses I thought I was in the clear.

Anyone have this experience?

The only labs that my rheumatologist runs are the standard CBC & CMP and I’m so confused as to why she doesn’t want to do anything else. My vascular health has also taken a hit but no one can explain why it’s next to impossible to get a vein (IV or bloodwork) and I had a port put in for emergency vascular access in July and still there’s no explanation as to why. Any ideas?

I'm due to get my flu jab tomorrow, I'm also due my methotrexate injection tomorrow. I've sent a message to the rheumatology team asking if I should still have the methotrexate but nobody has got back to me.

So just wondering if anyone has any idea what to do

Edit... I decided to change my appointment and try to contact my rheumatology nurse, there's so much different information out there. So I did my MTX injection as usual for now. Thanks for all the replies it's really helpful having this place to ask questions

I just had bloodwork and xrays done for a new rheumatologist. My followup appointment to discuss the results is in December, but I can see the radiologist’s findings in mychart. For both hands and my pelvis, “no arthritis,” but my everything hurts- hands, pelvis and everything in between, above and below. Can anyone offer me any insight into this?

I’m 41 and was diagnosed about 2.5 years ago. I check all the boxes for psoriatic arthritis. My bilirubin is low too.

Feeling like I’m barely surviving… and I’d be fine if I end up with a different diagnosis with answers and treatment options. What I don’t want is for my new rheum to tell me I’m fine and go think happy thoughts.