New here....happy to have found this forum

Welcome Greetings and Introductions
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Hello! I’m new here. Feels a bit worrysome to write,since English is not my mothertounge.Hope I´m excused if I express myself wrongly or unclear! In my early twenties rheumatologists probably did not know what psoriasienthesitis was. I had very stubborn tendinitis in my both arms starting after having had the support of churches after a car accident. I have probably had psoriasis in my skin(but luckily not so much! though in inverse areas and scalp) already as a teenager without knowing what it was. I have probably had this disease going on in my body for decades, mildered during my pregnancies. Starting on again when I had passed mid 40ties. I have blamed my stiff back and sacroiliac and sore fingers and toes on psoriasis (as I found out that my skinprobelms could be nothing else (relatives also having ps). Though I managed to cope until last year after influenza when more joints were engaged and at the sam time I got tinnitus and my hearing got bad. I had knees swollen and painful, couldn’t walk properly. I got my diagnosis then and cortisone injection (both a relief!)
But this illness seems to both live its own life and worsen due to different external factors like how much loading the joints can endure. No more jogging it seems! : ( Now I have a situation with something more looking like widespread Enthesitis (including around both knees, both ankles elbows and wrists as well as a period with more spine problems). I guess my problems are quite mild compared to many of you out there but I know I am in a worse situation now than two years ago in many aspects and I am trying to find out the best way to break the “recruitment of new joints with Enthesitis”. I think I have to find out more about medications before talking to my rheumatologist again.
Understand, after having read articles and some of your comments that hearingloss and tinnitus is one of ps-comorbidities.
I have several questions to someone with longer experience of medical treatments:

  • What is the experience of treating stubborn multiple entheisitis with “aggressive” medications like biologicals (Enbrel etc)?
  • To get rid of a flare of PsA /enthesitis is it better to “beat hard” on the inflammation from the very beginning with all means possible, than to wait and see how bad it intends to become? Does hard beating in the beginning favor longer remissions?
    Or is this to be considered “shooting midge with canons”?
  • Has anyone experienced relief from tinnitus and better hearing (reversing reduced hearing) when put on biologicals (or any other medication)?
    I have understood from the site www.enthesitis.info that Methotreate probably not is the drug of choice when inflammation present itself mainly as Enthesitis.
  • Is this an experience anyone can say anything about?
  • Has anyone tried apremilast (Otezla)
    Wish you all a good beginning of a new week!
    /Ninan
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Welcome! I’m sorry I don’t have answers to your questions… I’m sorry it took so long until you got a diagnosis!

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Hello Ninan and welcome!

I’m a bit confused about the enthesitis … it is a PsA thing for sure, and for some of us it is very troublesome. However are you sure that your joint problems are mainly due to enthesitis at the moment? You could be right, but if you have swelling in knees, wrists etc. then that sounds more like the ‘ordinary’(!) effect of PsA on joints.

Everything I’ve learned about this disease does suggest that early, aggressive therapy is the way to go with all but the mildest cases of PsA. Though of course, for you as for many of us, ‘early’ isn’t possible! But even after a very long delay in diagnosis, the sooner you can get started on the most aggressive treatment possible, the better.

And also, treatment isn’t just about getting over a flare, it’s about preventing flares as much as possible and slowing down joint damage too.

Like you, I think I had PsA for quite a while before diagnosis and when it really flared up, it hit me very hard indeed. My knees were swollen and too stiff for walking much, or at all, for some years. I felt extremely unwell for a long time too. However I have been pretty close to remission for some years and I am sure it’s the biologic treatment (Humira in my case) that has achieved that. So clearly there is hope for a much, much easier time ahead.

Does you rheumatologist think that enthesitis is your biggest symptom at the moment? I am not sure how well biologics deal with that, I think we all may have different experiences. That is definitely something to discuss with your rheumatologist.

Your English is great! I see you’re from Sweden. At the moment I’m addicted to any and all ‘Nordic Noir’ TV series, currently watching ‘The Bridge’ which seems to go on forever, fortunately!

Oh, and one more thing … okay, so maybe jogging isn’t such a good idea at the moment, but do keep moving. Exercise help hugely with PsA and I think it may be especially helpful particularly where enthesitis is concerned.

Very glad you’ve joined us! You sound like you are determined to get to grips with PsA and determination is half the battle.

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Hi, Ninan! It has been a long time since I’ve replied to someone, but your experience caught my attention because it is very much like mine. So far I’ve taken Sulfasalazine, Methotrexate, Enbrel, Humira and now Stelara. I realize I’m aging (doesn’t take much to realize that!), but my pain level has been increasing with more speed than my age has been. Once my rheumatologist charted my complaints of extreme and perpetual muscle pain, (with “extreme” being a term I rarely use because I’ve reserved it for when I really need to make a point), as well as areas around the joints that are always tender, she said she was sure that I have fibromyalgia, as well. I also have tendonitis, enthesitis and myofascial pain syndrome, which causes muscle knots all up and down the outside of my thighs. I take Celebrex 200 mg. each day along with the Stelara every 12 weeks, but have now added Cymbalta (duloxetine) to the mix for the muscle pain. It is an antidepressant, which has been shown in some cases to help ease the muscle pain of fibromyalgia. In my case, it has been effective so far. I’ve been taking it for about 10 weeks and the only side effect I experienced was daytime drowsiness, which has almost disappeared as my body adjusts to the medication. I must stress that I am not symptom-free, but the pain is more manageable. My advice is to be pro-active as you go to your next physician’s appointment and be armed with a written list of ALL your symptoms in detail. I was diagnosed with PsA almost seven years ago, and it was only this year that a diagnosis of fibromyalgia along with PsA and Osteoarthritis was mentioned. I agree with Seenie that you must keep active, and don’t give up the fight! On a side note, my husband has Swedish heritage and really wants to come to the country to visit the places where his ancestors lived before coming to the US two generations ago. I would love to do it, also, but am praying that my pain becomes as controlled as possible before going on such a long trip (I’m in Kansas in the US). Also, Seenie – is it spring in Canada yet? It certainly isn’t here. We’ve had a really weird weather pattern for the whole winter and early spring, which I think contributes to some of the joint pain. I hope you’re doing well! Best wishes to you too, Ninan.

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Welcome! This is a great place to learn. All I can share is my experience. I too had Psoriatic Arthritis for many years before diagnosis. My knees would swell and be hot, doc would give me prednisone. That worked on and off for years along with NSAIDS. Never a thought about it being anything other than over use. Finally my joints all hurt, and I felt sick. On to Prednisone again, but this time the pain only went away for a week. Finally, a Rheumatologist referral, which took 3 months! I was almost wheelchair bound for over a year when referred to a bigger hospital.
Methotrexate worked for 3 months but caused side effects.
Sulfasalzine made me sleep 16 hours a day😥. I also have eye involvement “uveitis “ so could not take plaquenil.
Then came Humira, which was a miracle! They just would not start with that , so many other drugs to try first!
Be patient, they will find the right one for you. I also have Meniere’s Disease, and am deaf in one ear, but not tinnitus. I am still deaf in that ear.
Hope you find your answers.

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