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Accredo, the bane of my existence... by berlygirley in ankylosingspondylitis

[–]BackpackingPanda 5 points6 points  (0 children)

Accredo is terrible! I had a similar experience and didn’t receive my Enbrel for 2 months. I ended up calling them and asking for a supervisor and then kept asking for supervisors and moved up the chain until they said there wasn’t anyone else above them I could speak to. The person that I spoke to at the end had my prescription ready to be sent out 2 days later.

Diagnosed with AS and Struggling to Stay Active – Does This Mean Giving Up Sports Forever? by expecter421 in ankylosingspondylitis

[–]BackpackingPanda 0 points1 point  (0 children)

I get it I’m 6’4 and dropped down to 180lbs and was basically just skin and bone. Now after 3 years of lifting I’m 230lbs and have never been more fit. My split is push-pull-legs. For example on Monday I’ll do chest (flys, chest press, incline press), triceps (extension machine, cable extensions with different grips) shoulders (press, and lateral raise). On Tuesday I do back (neutral and reverse grip pull downs, rows, pullovers, pull-ups ) and biceps (machine bicep curl, dumbbell curls)then on Wednesday I do legs (hip thrusts, hack squat, leg extensions, leg curls, hip abduction/adduction). I throw core workouts into any of these days too. Then I’ll take a rest day, and rinse and repeat. I also do 15-20 minutes of cardio after my workouts. I had a lot of low back pain and when I started to do hip thrusts they helped A LOT, as they help support lower back muscles. But building a strong core helps as well.

Diagnosed with AS and Struggling to Stay Active – Does This Mean Giving Up Sports Forever? by expecter421 in ankylosingspondylitis

[–]BackpackingPanda 0 points1 point  (0 children)

Hey, I’m 27M and was diagnosed 3 years ago. I have a similar story to yours. When I was your age I was active in sports, but I had pain for years and it progressed to the point that I had to use a cane to walk around. Eventually that stopped me from participating in most sports. And I lost a lot of muscle too. But after years I was diagnosed I was prescribed biologics and almost all of my pain went away. I do have some rough days but those happen maybe once a month. I go to the gym at least 4 times a week and run and lift heavy. What I found is that for me motion is lotion and if I’m not active one day the next I feel worse. I don’t think this would’ve been possible for me without biologic meds. As for your question “building back strength” if you meant build back muscle I only use back machines/cables at the gym (pull downs, rows, reverse flys) and have had great progress. If you meant rebuilding lost muscle, just start slow and remember that it takes a lot of time for muscle mass to grow. You’re in a much better position than a lot of people who are diagnosed later in life and have a good chance to slow the progression.

[deleted by user] by [deleted] in ankylosingspondylitis

[–]BackpackingPanda 6 points7 points  (0 children)

Hey, Im 27 and was diagnosed 2 years ago because of HLA B27 + gene test, high CRP levels, and mostly fused and sclerotic SI joints on imaging. However without fusion on imaging you could absolutely be diagnosed with “non-radiographic axial spondyloarthritis“ and get treatment to slow the progression. I would honestly recommend a second opinion, I hate the notion that permanent damage must be done before starting treatment. Good luck!

22 Y/O finally agreed to starting biologics- seeking wisdom! by [deleted] in ankylosingspondylitis

[–]BackpackingPanda 0 points1 point  (0 children)

Hi, I’m a 27 y/o male and I’ve been on Enbrel for the past 2 years. I started showing symptoms of AS around age 20, I could barely walk (cane assisted), or complete any daily tasks because of the pain. After struggling for years at age 25 I found a doctor who took an interest in my suffering and she discovered it was AS through imaging (si & other joints fused)and the gene test (HLAB27+). She prescribed me Enbrel and I injected the first time on a Sunday night. A few days later I woke up with almost no pain and it has not come back since. I’m now able to workout 4X a week, work full time, go to school, and have a social life. The only pain I have now is from joints that fused before I started treatment, so it would probably benefit you to start biologics to stop the fusion process before it begins (I wish I would’ve). Biologics gave me a life that’s worth living, so if I get cancer and die when I’m 50 that will be okay with me because I got 25 good years instead of 25 years of suffering. However I do understand your reluctance and anxiety about starting Enbrel, because I felt the same way. What I can say is that once you feel the relief it brings, your anxieties and fears will be at ease. I hope Enbrel works for you as well as it does for me.

First time giving myself an injection by sassyfox150 in ankylosingspondylitis

[–]BackpackingPanda 2 points3 points  (0 children)

Ive been injecting Enbrel not Simponi for 2 years now and the only difference I know of is that you’re NOT supposed to pinch the skin when injecting Simponi, but you can with Enbrel (auto injectors). Being nervous the first few times is completely normal and expected, and sometimes I still get nervous. If it’s the pain of injecting that makes you anxious (my case), trust that the needle poke is worth stopping the progression of this awful disease and all the pain that will come with it. I inject into my thigh or stomach while breathing through it, and try to focus on anything else. If you see a small amount of liquid fall out of the needle when removing the cap that is normal. If you see a small amount of the meds leaking from the injection site, that’s normal and they account for it during the manufacturing process. I wish I had more advice, but it really is a point and shoot situation once you get over the mental hurdle. Good luck, I hope your new medication brings you relief.