I'm new to this site, and to this horrific diagnosis that has attached itself to my life.
Enbrel did not work . I was a jogger, swimmer all my life and now I can't walk a block. I'm going on Stelara and was wondering if anyone was diagnosed with Enthesitis, and what worked for them. My wonderful dr. says it's a crap shoot, that nothing works 100% but some patients get 40-50% , I'd be happy with that!!! Thoughts???
NEL, it’s different for everyone - certainly enthesitis is a big part of my disease. As it is with most. Enbrel was great for me till my disease changed (bowel involvement added - Enbrel not so useful there). Humira then has been my saviour - I reckon I get 80% improvement! except when in a flare, and if I take all my vitamins, do my yoga, and am generally a good girl, I get even more 
But a big part of the reason I answered - I was a hiker - 20k in the wilderness for fun, then six weeks after PsA, I had to rest on the one long block between my office and car park… It really does get better
Hi Jen , Your reply made me feel better , thanks, the only one who has what I have is my daughter. My family,
my teacher friends, no one has this. They're all living their lives as they should, just bad luck I guess. I still don't understand, I spent my whole life eating right, exercising as a teenage till last year (61) and look what it got me! I hope it does get better. By the way I love the name Jen, it's my nieces.
NEL, it so frustrating, isn’t it, that the people In your day to day life, just can’t conceive of the things you need to deal with… And I’m not hiking 20k again (yet), but I do go to the gym, go camping with my family, work and holiday overseas, and even go horseriding and waterskiing on occasion (I don’t do either well any more, but that doesn’t stop me having fun!). It does get better
I also forgot to say, for me I ice the enthesitis if I think I’ve actually done any damage, but when the darn tendons just tighten and inflame because they are cranky, nothing works better for me than a warm hydrotherapy spa. Closely followed by Rodney yee yoga.
NEL... I have enthesitis also. While my joints were much better on Enbrel and Humira, the only drug that's done anything for the enthesitis is Otezla. I was also very athletic before this and agree with Jen that it does get better :)
KoyptHu said:
NEL... I have enthesitis also. While my joints were much better on Enbrel and Humira, the only drug that's done anything for the enthesitis is Otezla. I was also very athletic before this and agree with Jen that it does get better :)
I wrote that my daughter was on otezla and it only gave her 10%, and stomach issues , nausea first month
it is the "safest' I'm going to try Stelara, and then otezla. Did you have stomach issues? Good luck
Hi NEL,
Enthesitis has been bad for me. My inflammation is now pretty well controlled. There is hope.
I started with Naproxen. It helped, but caused stomach pain. Tried Humira (gave me Shingles).
Now I’m on Enbrel, Injected Methotrexate, Celebrex (along with omeprazole to protect stomach). The Enbrel took a few months to work. The Methotrexate helps with peripheral pain and swelling (my knees, ankles and feet). The Celebrex helps with pain and stiffness.
Besides meds, I found a low carb diet (no grains, no legumes) helped my gut and malabsorption issues.
When in a flare hot water is my friend. Walking in chest deep water in warm water therapy pool helped loosen those tight tendons. Even a hot shower helps.
I went from not being able to walk one block to walking two miles. I still can’t ride a bike, the repetitive motion sends me in a flare. Walking and water therapy/swimming is the best. Snorkel with your face down in water if you have neck issues.
Everyone is different with the amount of activity they can do.
Get the inflammation controlled as best you can. Trial and error for Meds and Therapies.
Biologics can be game changers.
Best wishes!
Hi Nel, I had an appointment with my Rheumy yesterday and we are going to start the process of applying for a biologic. I have Enthesitis and hope to go on Enbrel. My current treatment is my third combination of Dmards...Leflunomide and Plaquinel. I will remain on the Leflunomide with the Enbrel to start as it apparently increases the effectiveness of the biologic.
After my last flare in my right shoulder...I am so ready to try this! I was an avid runner when my disease progressed everything stopped. I hope to get back to a more active life...maybe not running but swimming and hiking would be wonderful! Wishing you great success with Stelara!
How did this work for you,? I have never enthesitis and thought stelara was the drug of choice for it but it’s not working. My first 24 hrs was a miracle. No pain anywhere!!! Haven’t felt like that for 30 yrs. Wish I could take a shot every day…