I am new here and what a wonderful site! I have been following since my dx in early April and finally found the courage to jump in with a question. But first, a little background.
I am a 48 yr old male, HLB27A positive. Started with some hand pain after an intestinal infection followed quickly by painful enthesitis and tendon pain in knees, shoulders, elbows and feet (the worst). My rheumatologist feels it’s PSA since there are some minor toenail issues. All inflammatory markers low side of normal, no visible swelling but really hurting with enthesitis. Started sulfa within days of dx and now 4 weeks later with no real relief, we are thinking biologics.
My question is whether anyone with similar presentation has had success with any particular med? We are thinking Cosentyx since some data suggests the IL blockers work better for enthesitis.
Anything anyone could share would be appreciated! And thank you for welcoming me to the site.
Hey I take cosentyx. I have not had issues with it. I have been on it for quite some time close to a year. Previously, I have been on many 3-4 biologics besides humira. I have noticed no big difference between it an the others as far as concerns. You never know until you try if it will work and it is a slow and painful process to suss it out. Personally, it may be working for me but I do not know if it helping with all the inflammation or what. The jury is out in my case.
This is an interesting question/post…I used to think Biologics and DMARDS would be my eventual “saving grace” from tendonitis and enthesitis, once I became bad enough to have my Rheumy put me on one. Now I wonder though about a simple NSAID (?)
I recently had to stop taking my Celebrex due to a specialized type of knee surgery (Microfracture with addition of a Bioartilage allograft into a large articular cartilage defect on my tibia). The Allograft of biocartilage is slowly growing/hardening inside my knee. I’ve been down this road before with needing to stop an NSAID so new cells could grow/proliferate/harden over time in an articular cartilage defect, but this time is MUCH worse on my elbows, and even last time, I started having trouble with tendonitis/enthesitis in myelbows after THAT procedure in 2015/16.
This time, I had to go off of my Celebrex for 1 week prior to surgery (due to possible bleeding), and I can’t go back on until 4 wks post-op. I have anther week to wait, and my elbows are just absolutely killing me. I seriously didn’t think the Celebrex was doing much for me these last 2 years, but now I wonder if it was at least helping the tendonitis/enthesitis in my elbows.
From your post it sounds like you haven’t had any swelling, any elevated inflammatory markers, or any damage that is visible on imagery. Just painful enthesitis.
This is essentially where I’ve been for the past year and recently have had some heart-to-hearts with my rheumatologist and GP.
There is good evidence these days that treating inflamatory arthritis early and aggressively improves long-term outcomes — in that it prevents future damage from occurring. Because once joint damage occurs, no amount of aggressive treatment will restore lost function.
However, PsA without joint swelling and visible damage is kind of an interesting situation. I think a lot of it generally goes undiagnosed. And when it is diagnosed, no one quite knows how to treat it. Traditional DMARDs aren’t very effective. And biologics come with large price tags, safety risks, and often limited use windows (i.e. one particular biologic might stop being effective after awhile).
So whether or not to start a biologic is a decision for you and your doctor(s) to decide together. But to echo Lisa, you might want to at least consider trying NASIDs (or a different DMARD) paired with regular monitoring for any damage and a willingness to try a biologic in the future if swelling occurs or blood tests show systematic inflammation.
Meloxicam works okay for me, and I’ve been willing to put up with some residual pain for now (as long as no damage is occuring) because I’d rather save biologics for a time when I might really need them, rather than burning through the line-up at this point in the disease progression. Not everyone actually progresses to joint damage, and biologics are both an important weapon against PsA and also a big step up in terms of cost, hassle, and risk of adverse side effects.
The progression now (at least on the west coast) is when HLA B27 is positive (other inflammatory markers are USUALLY negative is to start biologics as soon possible to avoid spinal damage that ALWAYS comes with a spondylitis form of PsA. After the axial (back) symptoms are stabelized they add a DMARD (usually MTX) in order to whip the peripheral (enthisitis) into shape. It is also not unusual to use one of several NSAIDS of the COX 1 type. However they normally avoid regular NSAIDS because of the massive side effects especially when there is any gut involvement which is frequently one of the first symptoms. Sounds like that is where your Rheumie is at.
Thanks Lisa and tnt for the thoughts. I’ve been on Meloxicam and it does help somewhat…but my doc and I agreed that being aggressive early could potentially get me to remission within a year. He believes the current study data supports this approach. And since I was lucky to catch this very early, I have no joint damage and minimal back pain at this point. Also have zero blood inflammation markers which my doc seems to think is protective in the long run. So we are going for it. He also told me that his goal is the minimum meds…only what’s needed. Apparently he has patients that have been on Enbrel for 5+ years that only need to inject every 6 weeks or so…and use no other meds.
I do worry about the Enbrel SEs but my doc said straight up that he would prescribe to his kids without hesitation if they needed it. And we will be doing bloodwork monthly to start.
I’m keeping my fingers crossed but admit that the wait and see approach keeps creeping into my mind.
I am also going to start acupuncture next week to see if that helps with pain management.
Rob,
I’m simply happy you have a Dr who seems to be very aggressive with treatment. I think you’re in a good position to see some improvement quickly, and it’s great he’s firmly in your corner. Now, if I could just convince MINE to think the same way. I hate to change again, considering I’m supposedly going to one of the best in this area, but time will tell. Best of luck to you.
Hi, my main symptom when in a flare is enthesitis. I have been on hydroxychloroqine and meloxicam for six years. The hydroxy helps with morning stiffness, but after years of NSAIDS i no longer get relief. I tried sulfasalazine, but did not tolerate it. Steroids always stop it cold, but i do try to avoid that.
My rheumy wanted to put me on methotrexate, but i refused as i could find no good research to support its efficacy with enthesitis. I have read certain biologics are the best option. Unfortunatly in Canada, you have to ‘fail” methotrexate before they can perscribe a biologic (downside of free healthcare). So now i am just doing hydroxy and have started using CBD oil for inflammation.
My main symptom when I was first diagnosed last April was horrible enthisitis. I also tried sulfasalzine and couldn’t tolerate so went straight to Enbrel.
I also do Pilates 2x / day for 20 minutes to stretch. I eat a low-inflammatory diet and take daily herbs (turmeric, boswellia, and fish oil at therapeutic doses]. I get acupuncture 1x / week. And I quit all coffee (very hard) and no longer drink alcohol.
I’m happy to say that my enthisitis has largely resolved over the last couple of months. I do have an occasional mini-flare from time-to-time but it usually doesn’t last for more that a day or two. Some days I almost forget I have PSA.
I suspect it’s mostly the Enbrel, but I do believe the other stuff helps, too. No side effects either from the biological…touch wood. I have two early teens, and just last week they both had wicked colds, and I was fine. Not even a sniffle.
Hope you feel better, and when you get the chance to try a biologic, I wouldn’t hesitate for a second.
There’s all sorts of ways of ‘failing’ mxt Corrie and an awful lot of people also finds it helps. I wasn’t one of those as I couldn’t get through the side effects but that still meant I ‘failed’ it anyway in the UK that is, which meant it stopped being a road block to further treatment.
Found cosentyx in addition to methotrexate saved my strong swelling and flares on both knees and entethitis (?)on leg tendons and feet pain had only been reduced by frequent shots of cortisone, which was also taking daily. Was only able to walk again after a year of psa diagnose after biologic together w mtx, which works to this day, am also on anti inflammatory keto diet and frequent fasting, which has and is giving v strong antiinflammatory effects. It would seem a perfect combination. A good evening and successful progress with everyone s therapies, best regards,
Had r bad enthesitis first year after diagnosis kept on having cortisone shots on knees at junction points given by rheumy until he finally gave in and added cosentyx to prednisone and mtxt which were clearly not sufficient. Suspect that delay may have been due to high costs for state to pay for such medication may have been partly the reason, but could be paranoid and it is not true
I hate to change again, considering I’m supposedly going to one of the best in this area, but time will tell. Best of luck to you.