Does anyone have psoriatic spondyloarthritis?

Hi Grandma J
Thank you for your email and advice …Enbrel appears to have been a magical result for you and I will certainly look into this and raise it with my doctors.
I fear that my skeletal degeneration is too advanced to get a real improvement but not giving up yet.
Hank you again for your consideration and support.
Guy.

My PsA was more or less controlled by high doses of anti inflammatories for a couple of years until they didn’t work anymore. Then I had a 32 day course of prednisone that worked wonders. Also cleared up my psoriasis. My PsA is only in my spine and there may be some ankylosing spondalytis but they’re not sure and I couldn’t handle the dye for another mri because my kidney function was impacted by all the years of anti inflammatories. I have another 32 day series of prednisone on hand should I get another spine flare up but am wondering if I shouldn’t go ahead and start the Enbrel. You indicate that the Enbrel is about to stave off more damage. I was wondering about that and going to ask my rheumatologist about it. I’ve hesitated because Enbrel and all the biologics have some serious side effects.

Marciam, I’d be begging for Enbrel … or another biologic. I’ve yet to experience any side effects after 3 years on Humira and I gather that side effects are actually pretty uncommon. Whereas, as you have found, adverse effects of long term NSAID use are very likely indeed. I think there’s a tendency to assume that the ‘stronger’, or more high-tech the drug, the harder it will be on the body. But that’s not necessarily the case. Kidney function is a big deal, I don’t have to tell you that. And, again, sometimes perhaps we feel more comfortable with ‘the devil we know’. I hate taking any drugs, I’m not at all gungho about it, but I’m convinced that the quite understandable apprehension about biologics is unfounded. I consider them the least-worst option as well as the best one.

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Marciam, this was me 3-1/2 years ago. It is a big deal having to inject the biologic and the list of possible SEs freaked me out, too. But, really, it’s probably the least “dangerous” med I take, and I don’t have any SEs from it. I take a few meds for my heart and they actually do give me problems–my doctor recently told me to stop the statin because she thinks it might be causing the weakness in my ankles. I know the statin causes me brain fog and confusion. I wish I didn’t have to take any meds, but, surprisingly, Enbrel is the one I’m least afraid of.

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Like you I loved prednisone. For the last year and a half. However this June and I had an unexplained fracture in two places in my pelvis and I’m only 55. No fall, no nothing, just pain. Still waiting for the bone scan tests results but I’m pretty sure the prednisone is at fault. I haven’t yet been offered a biologic and so wish I will be soon. I simply wouldn’t hesitate an iota in taking it in your shoes or indeed my own shoes!

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Marciam, welcome here! We’re glad that you found us. There’s lots for you to read in our Newbies’ Guide, which will give you a perspective on the situation we’ve all found ourselves in. Psoriatic Arthritis can be mild, but it can also be an aggressive monster that can cause joint damage pretty quickly. The traditional DMARDs (methotrexate, sulfasalazine, etc) are thought to perhaps prevent damage (fingers crossed), but the biologics are proven to do so. Yes, on paper (for legal reasons) the side effects are terrifying. In reality, many of us here take them and most of us have had fewer side effects on the biologics than on any of our other medications. The biologics (in my case, Humira) have made all the difference and have given me my life back without anything worse than an itchy patch on my leg for the first few injections.
There’s a reason that we have a mantra here: Fear the disease, not the meds.

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Hey, the one thing constant with my pain and stiffness is the lower back. From what I have read this area and the hips are one of the first–not always–to start showing problems. I have to mirror what others have said. I think this disease can change on a dime. In my opinion I think there is a group of us–probably a big pool who all have lower back issues relating to inflammation. I am currently diagnosed with Psoriatic arthopathy and Fibro. It is hard to disentangle the two of them and they frequently occur together due to it being an autoimmune disease. My symptoms at various stages of this ride have been: back pain, lower, mid, shoulders, neck, knees, shoulders, feet, achilles, from of the ankles, toes, fingers wrists both sides of the body and at different times, as well as, the same time. I have also experience problems with elbows or where the funny bone spot is. I also experience or have–depression, anxiety, high blood pressure, severe fatigue, and pain always but some days are worse than others. From what I have read this is to be expected. So I guess what I am trying to say is I do not know if I buy that one can only be effected by spondyloarthritis–I dare say that one could have only this symptom but also have the underlying systemic inflammation that one may or may not notice effecting other parts of the body.

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I’ve had Ps all my life, PsA for 25 years, and diagnosed with Fibro 20 years ago. I’ve had severe back pain off and on for 25 years. 4 years ago the back pain began reoccurring more and getting worse. For the last 2.5 years, it has not gone away at all, pain everyday. My multiple MRI’s show some tiny effects, but nothing the docs or spinal surgeons will help me with. I did get 4 series of steroid injections into different areas of my lower lumbar and sacral spine, but they did not help. My docs now just shrug at me and say they can’t help me. It took me 2 years to get my family practice docs to give me two 5mg Vicodins every 24 hrs. My Pain Management Center will not help me with meds and I tried a Rehab doc, who focused on my slight depression and childhood trauma, and wanted me to do cognitive behavior therapy, like the depression was causing my pain. What crap! I am depressed sometimes, cause I HURT! Finally, this last Oct, I got my family docs to give me three 5mg Vicodins a day to take if I really need them. They only take the edge off the pain. Now on Cymbalta too and have no appetite. And for the last few years, I have fairly constant painful tendinitis in my elbows, which stopped me weight training, which I used to love.

Hi Tonkinese.

I want to believe that depression doesn’t exacerbate pain. In fact I rarely use the word ‘depression’ in relation to myself. I don’t know why I’m so averse to the word, though the fact that my down times don’t last long may be one reason. The see-saw gets wearing, though.

It can seem so chicken and egg, my mood is often low when I’m in pain. However, I’m just about persuaded that the low mood may precede some forms of pain rather than the other way round. Is what your rehab doc said crap? I’m not sure. We need open minds and asking people to be open to new ideas when they’re suffering is one big ask. But something’s got to give, right?

Hello everyone! I was recently diagnosed with PsA. My xray showed errosive damage to my sacroilliac joints. My rheumy said this is sometimes the first area of the back / spine that PsA damages. She wants me to take Humira as it helps stop the progression of damage to the spine. I have had back pain for the last 5 years especially when standing or sitting for long periods of time. I did not realize it was caused by the PsA. I am concerend about the side effects of the Humira. They sound very scary. Have any of you had good results using Humira for spinal damage and pain? Thanks for your help. I am just trying to come to grips with my diagnosis. Besides back pain, I also have swelling and pain in my hands, knees, and tendon pain in my arms along with terrible fatique.

Hi cabezio! You can search Humira in the search box at the top. Most people do well on the biologics with little to no side effects.

Hi Cabexio, I’ve had great results with Humira without any noticeable side effects (and I’ve certainly tested it - I worked in some very remote areas in developing countries with no hygiene etc).

They do happen, but are so very rare. Humira has been a godsend for my quality of life, I hope it is for you too :grinning:

Thank you so much for your reply!

Thank you so much for the information.

I just want to say first about your statement that your doctor made, that your spine involvement probably was no coming from PsA… I think that is a commonly “go to” statement made all to often so not to let their patients blame everything on our condition. Then why do so many have back involvement. I am 43 now and was diagnosed at 32 I have had two back surgeries, 1 neck fusion and still have lower back pain everyday. Regardless I stay active, power walk 3 miles 4xweek…
My Rheum was also shocked when my CT scan revealed that my middle finger needed a whole joint replacement, after insisting it was probably previously broken at some point and didnt heel right. I have constant left side sciatic pain no matter what, if I stretch, sit, walk… I have been on Methotrexate for 12 years and Enbrel for 1. As far as I can tell the Enbrel has helped a great deal on the pustular psoriasis on my fingers and feet but as far as pain, no relief.

I have back aches for years. It has been bearable then with NSAIDS and anti-inflammatory medications.

It has gotten worse in the past few months. Finally found a Rheumatologist that diagnosed me with Psoriatic Arthritis. My left knee and left elbow remains swollen and back pain and stiffness worse in the mornings despite 20mg Prednisone daily for the past 2 months. Now I have the classic “moon face” from Prednisone and only little relief.

My Rheumy suspects Ankylosing Spondylitis vs PsA of Spine so she ordered an MRI to be sure.

She also initially planned on starting me on Methotrexate but since I got Gastritis recently she decided I should start on Enbrel soon rather than try Methotrexate As my Gastritis might just get worse.