I think I'm actually improving. My anxiety is much less and this dialogue with you and the other good people here has helped me tremendously. I've always been someone who's worried about the future even before I had AS. This disease will kinda force me to live in the now and change my way of thinking.
I do have AS. In 2012 after about 3-4 years of symptoms my x-rays showed erosion in my sacroliliac joint on one side. The rest of my spine was clear. I was put on Enbrel two months later and I'm still on it to this day. I barely had any pain until it started creeping back about two months ago.
My ROM is normal in my spine for all movements, and strangely my lumbar spine movement is even above average. I can touch the floor without bending my knees.
My neck has always been my main concern. It's the part that's most affected even though I didn't have any radiographic evidence in that region in 2012. I have about 80 degrees rotation to the left, 45 degrees to the right, with normal up and down and nearly normal tilt. But when I'm flaring it's the first section that loses motion. I always feel like my muscles, tendons and ligaments are very tense, almost calcified.
I normally don't have pain in my neck if i'm not stretching it while flaring. On a normal day it's just tight but painless.
I'm scared about my neck because I think it's the thing that people will notice the most. If you can't turn your head at all people start asking questions that I don't want to answer. And I think a stiff neck gives someone an odd look. It's stupid I know. And superficial.
Does your dad have any movement in his neck? Has he been fused for a long time?
Thanks for talking to me. Your posts do help. A lot. I wish you the best.
I have the same issue with my lumbar spine. No fusion but basically no movement. When I bend down to touch my toes, I bend from my thoracic spine. My lumbar spine stays flat and just doesn't bend. Apparently, that is a feature of AS. There's not really anything I can do about it except keep up with PT. PT hasn't actually increased my mobility but helps with the pain.
Since besides PT there is nothing I can do, I figure no point in worrying about it!
Have you tried PT for your neck? Or trigger point injections? Those helped me a lot with pain.
seymour, do you have radiographic evidence of sacroiliitis on your x-rays? Erosions, sclerosis etc.? Because if you don't, then you don't actually have AS, you have axial spondyloarthritis. Many people with axial spondyloarthritis NEVER progress to AS. I can't remember what percentage - let me see if I can find it.
Just wondering...figured if it is non-radiographic axial SpA, that might ease your worries about fusion!
I also want to add that my dad does have fusion in his neck. He also has fully fused SI joints and has had many hip replacements, starting at 32 (or maybe 34, I can't remember). He works full time, travels for work a lot, gardens and lives a full life. His philosophy is to just ignore the AS and live his life. I'm not saying anyone should ignore their AS - they should certainly see their rheumatologists regularly and stay on their medications and stretch and exercise. But there is no point focusing all your energy on what might happen.
But I've learned to focus on what I can do vs. what I cannot do. I'm a twin and have not graduated from college yet. My twin is healthy and has graduated from college and is working full time. I have AS and inflammatory bowel disease and a number of other conditions. I've had to take 2.5 years off from college to get my health under control. It's hard. And it's not fair. But it is what it is. And I try my best not to dwell on it.
Ok. So I have been flairing pretty badly and I figure my biologic may be on the way out. I was at the doctor looking for something to deal with the pain and while I had the option of pills, he recommended CBD Oil and said it's been good for some of his patients and that it would probably be better with less side effects.
I ended up with a prescription and used it for the first time this morning. My mind is absolutely blown. I have used it in a vaporizer, but on a day like this where I am one day away from my biologic injection, it's rainy and usually I am on two Tylenol arthritis and a 500mg Naproxen. I have had some cbd oil from a licensed producer and I am virtually pain free and have been sitting here getting work done all day. Usually I am sitting up, laying down, standing up, stretching, complaining, etc. Right now I am doing good.
The website Needy Meds is a bit confusing to use, but its pretty good at finding discount and copay assistance programs for many medications and diseases. I entered Simponi and it pulled this up - http://www.needymeds.org/brand-drug/name/Simponi -- if you scroll down, it lists a phone number for people with Medicare to call. It appears there may be a program that provides assistance, dependent on meeting financial criteria.
Actually, when my neck is more restricted my trapezius hurts near the shoulders when I turn my head from side to side. I always feel like the restriction comes from the occipital region, from ligaments rather than the actual cervical vertebrae. I can hear crunching noises in the occipital muscles and that's where it feels like it's blocking. If I move my head while feeling my cervical spine with my finger I can feel the vertebrae move.
That's what I told my rheumy in 2012 and she said she believed it may come from fusion, then we did X-rays and I had zero fusion, not even beginning. I may have permanently damaged some soft tissue I don't know. Most of that lost ROM never came back on my right side even on biologics but my left side almost went back to normal. Same thing with looking up and tilting.
Also if I push with my hand I can almost reach full ROM. But my muscles alone cant do it.
Thanks for reminding me that AS is slow. I'm always afraid that while my treatment is less effective I'm having permanent damage and progression and that's why I'm on a hurry to try something else!
yes, I guess it is a little scary. Although I have bee diagnosed fairly recently (approx 3 months ago) with AS, and the neck hurts since 3 months, in the last few days crunching in my neck on both the vertebra's sides appeared. I was not able to decrease CRP/VSH to the normal levels with NSAIDS until now. But I suppose after 3 months of Symptoms and on NSAIDS, I cannot fuse right?
My insurance covered Otezla with a biologic, but I had to fail MTX and other DMARDs first (I have basically been on them all - MTX, Arava, Sulfasalazine, Plaquenil etc). Otezla has helped a lot with my feet. Both with my achilles tendons and with plantar fasciitis. And with ankle pain and swelling. I still have some foot pain, but even that is much better on Otezla.
The other thing that really helped my feet was wearing supportive shoes (sneakers) all the time, with custom made orthotics. A podiatrist can make them.
SouthernMoss, I really should make an account. My mom doesn't really use this one though, so I wonder if there is some way just to change my username.
Seymour, considering your pain has increased, I bet your rheumatologist will monitor you carefully. You also have to remember that AS is a SLOW disease. It takes years to fuse. My SI joints have been fusing for 6 years. Since I have been on biologics that whole time, they haven't fully fused.
In early studies, they thought biologics did not prevent disease progression. Later they realized that those studies were too short - only two years long. So it looked like biologics were not preventing progression and might even be increasing it. But when they looked at studies that went for 5-10 years, the effects of biologics were MUCH more clear. They very clearly reduced the odds of progression by 50% or so.
My point is really that you won't fuse overnight. Especially considering you are on a biologic. I would really push for an MRI of your neck simply for your peace of mind. It will show if there is inflammation and how much (if there is inflammation at all). Pain can come from many sources. Nobody here is denying that you are in pain - clearly you are. All we are saying is that it may not be AS, and even if it is AS, it's better not to freak out! The pain is REAL - whether it is muscular, anxiety related, inflammatory or simply postural.
Losing ROM does not necessarily mean you are fusing. It could simply mean you have very tight muscles. With my neck, I have also lost ROM but my PT thinks it's because my trapezius muscles are so tight. He expects my ROM to increase as I continue with PT.
I agree with SouthernMoss about taking an NSAID regularly. There are LOTS of NSAIDs and I had to try about 12 before I found the right one. Celebrex is known to be easiest on the stomach. Mobic is also used a lot. I take my NSAID with a PPI - if I don't, I get gastritis. For me, dealing with gastritis periodically is worth it for the pain relief I get with NSAIDs.
Would that copay apply all year or just until you emerge from the so-called "donut hole"? Note that I'm not personally affected yet, but my mother is. She is able to manipulate her retirement income such that she qualifies for a different drug manufacturer assistance program for people on government insurance. It is an income-based program, as she has to send them copies of her tax return each year.
I think Methotrexate would be a good next step for your achilles. It's worked well for many people over the years. And if it doesn't help, your rheumy can use that failure as ammunition to appeal your insurance's denial of Otezla.
CBMom's daughter, you have a lot of wisdom. You should set up your own account so we can tell when it's you posting.
Seymour, the question of how long to wait is not really something we can answer. We can share our own experiences, as others in this thread have done, but the final decision has to be one you and your rheumy make based on your own circumstances. I don't think your rheumy is going to let you get to a CRP of 60 and fusion before she changes your treatment plan. So try not to stress over that for now. As the old saying goes, don't borrow trouble.
In the meantime, try taking an NSAID for a while if you aren't already and can tolerate it. Or take arthritis-strength Tylenol. Not just here or there, but on a regimen so that you have a steady amount in your bloodstream. Try some of the OTC stuff like Salon Pas patches (with or without lidocaine), Aspercreme (with or without lidocaine), BioFreeze, etc. Or try a prescription topical NSAID like Voltaren gel. Ask your rheumy or your primary for a PT referral for your neck. Ask whether a TENS unit might help. Someone made a post recently about the Quell units, you might check into those too.
Started Cosentyx yesterday and aside from insomnia last night, I’m feeling pretty good. Even though I didn’t sleep, I don’t really feel fatigued. The various IL-17 inhibitors are my only remaining options due to the aforementioned melanoma while on Simponi. Hoping and praying this works and I can have some relief apart from opioids and massive NSAID and prednisone doses. It’s been 3.5 years of daily struggles since the melanoma dx.
It’s OK Winston, I annoy myself too. I’m not crazy you know. I do see that I’m completely overthinking this and blowing everything out of proportion.
See my question is this: how long should I wait? How long should I tolerate daily pain and increasing stiffness until I know it’s time to switch?
I don’t want to switch prematurely. But in only a month I’ve already started losing some ROM in my neck again. I don’t want to wait until I have a CRP of 60 and fusion before switching to a more effective treatment.
I really don’t know how I should approach this. Anxiety is one thing but there is very real AS symptoms returning too. I’m not a crazy person. Not yet anyway 🙂
I apologize if my last comment to you was a bit harsh, but a comment my rheumatologist made to me when I was still in the diagnostic phase of my disease, when we still weren't 100% sure what was going on with me and my anxiety was at its peak, has really stuck with me. He actually raised his voice at me in frustration and said, "Stop trying to give yourself things you don't have!" It helped, and it still helps when I'm feeling a little anxious about things.
Another option might be to take a short course of steroids and see if that helps the pain. Sometimes a steroid taper will calm things down for me and then I don't have to switch biologics.
Another option might be dose escalation. In psoriasis, Enbrel is given at higher doses - 50 mg twice a week for 3 months. You could try that. I have done that with every single biologic I have been on - escalated the dose or frequency before moving on to something else.
You could also add an NSAID if you aren't already on one.
You have 4 anti-TNFs plus Cosentyx. If, in the worst case, like you said, each lasts only 2 years that gives 8 years on anti-TNFs. Plus another two on Cosentyx. Plus another two if you try both Simponi and Simponi Aria (IV version).
I have done ALL of this. Like you, I worried a lot about running out of options. When you start biologics at 15, your options diminish fairly quickly, especially since at the time, only Enbrel, Humira and Remicade were given to kids.
I can tell you honestly that my anxiety made everything worse. It made me hyperaware of every site of pain. It made me think I was flaring when I wasn't. It can cause muscle spasms. It can make minor pain into major pain. It caused many sleepless night. It has taken years of working with a therapist and now I'm better at bracketing that anxiety. The thing is, it's out of your control. You have no idea how long these drugs will last. But I can tell you this for sure - there are several more biologics in the works. I see Dr. Reveille in Texas, who is a big AS researcher. He always tells me what is the next option coming down the pipeline.
You have 10 years or so before you even have to worry about what is coming down the pipeline. And it could be much longer. There are people who last between 5-10 years on a single biologic.
Right now, you aren't even sure you're in a flare. Honestly, from reading your other threads, all of your symptoms sound muscular (shoulder blade pain for example is often from a muscle spasm in that area). Your inflammatory markers are perfect. If you are really worried, I would encourage you to see your rheumatologist and have her examine your joints and ask for an MRI of your spine.
And most definitely keep seeing a psychologist.
Anxious people can work on becoming less anxious. For me it has taken a lot of time and I'm not always good at it, but it's pointless to worry about stuff you can't control. And anyway, I can guarantee that in 10 years, there will be other options.
I have ZERO FDA approved options left now. Do I worry? YES!!! Do I let it take over my life? NO! I'm going to enjoy this biologic while it works, instead of focusing on the fact that it might fail one day and then I'll have nothing left. I have tried Enbrel, Humira, Remicade, Simponi, Remicade (higher dose), Simponi Aria, Humira (again), Cimzia and Cosentyx, all with different combinations of DMARDs. I'm 24 so I have a long time to go.