My Story... What a Pain in the Neck

So glad I found this group, I have a feeling I'll be spending quite a bit of time here. Here's a little about me:

I'm 48 y/o active mom with a full time crazy stressful job and have had psoriasis since I was a young child, which for the most part is manageable with creams. About a year ago I started having severe neck pain with stiffness and thought it was the way I was sleeping so I went out and bought those really expensive memory foam pillows and nothing worked. A few months after that I started having really bad shoulder pain and thought it was just from my neck pain. Within a few months I could barely lift my arm up so I went to the ortho and he dx me with frozen shoulder. The pain in my neck and shoulder finally went away after about 6 months - as suddenly as it started but I still had/have limited motion in my shoulder.

Fast forward a few months and Wham got hit with severe burning in my feet and full on neck pain was back and then heel pain in my achilles tendon area. Now I started suspecting something was up and I had been really exhausted and not feeling normal - can't put my finger on exactly what that was/is like but just not myself and that something wasn't right. Meanwhile the neck pain is still horrible along with the feet/heel issue. A couple of weeks later, the tips of my fingers swell, all of them, splitting apart the cuticles on all of my fingers. Did I mention that my toe nails turned white...yep.. all of them.

I thought that was a good time to go the Dr. I went to my GP 2 weeks ago and she ordered some blood work which came back positive for HLA-B27. Not a big surprise since my brother has Ankylosing Spondolitis and is also positive for that marker. She is suspecting Psoriatic Arthritis with spondlitis affecting my neck.

The Rhemy had a cancellation for tomorrow so I snagged it so we can figure out what to do from here. Every day is like a big surprise, I never know where I'm going to hurt next. My brother is only a year older than me and his started last year and his spine is already 30% fused so I'm a little scared. It's weird how it hit us at exactly the same age and our parents never had anything like this, not even psoriasis.

Glad to find others that have walked in my shoes ( or with my crazy painful feet lol).

Wow, WM that is a lot of stuff going on. Welcome to the group. Please let us know how your appointment goes tomorrow. Hopefully you will end up with a plan to start feeling better.

Well you are either coming or going from the doc so won't give you any words of wisdom.... Glad you got in quickly and hope you can get something going pretty quickly. Sounds like it needs to. It is very unusual for AS to pop up at 48. I'm guessing you and your brother haven been either ignoring symptoms OR have very high pain thresholds........

Anxious to hear what the doc comes up with. We are here as you start the process................

Wow what a great Dr. Very thorough - full medical assessment and consultation, was there for 1 1/2 hours. She ordered more blood work, chest x-ray and full spine x-rays. She examined every joint, spine, rash or boil.

She said that it's definitely PsA with spondylitis of the cervical spine. She said my choices were Methotrexate or sulfasalazine for peripheral joints and Humira, Enbrel or Remicade for spine.

I have another apt for 7/31 to discuss the test results and begin a treatment. My biggest problem is that I have such a hard time swallowing pills that I'm worried about having to swallow large ones in which case I'm screwed.

Anyone have suggestions for which med works the best of the ones above with the least side effects? And of course pill size....lol



tntlamb said:

Well you are either coming or going from the doc so won't give you any words of wisdom.... Glad you got in quickly and hope you can get something going pretty quickly. Sounds like it needs to. It is very unusual for AS to pop up at 48. I'm guessing you and your brother haven been either ignoring symptoms OR have very high pain thresholds........

Anxious to hear what the doc comes up with. We are here as you start the process................

Well this is either good news or bad news.................. You don't need to worry about pills. All the biologics are injections except those that are given IV. Were it me I'd choose MTX by injection (there are pills but more side effects with them - I'm not thinking large pills not to mention a handful is what you want) and Enbrel. The shots are nothing barely different than an insulin needle. Even my grandaughter gives herself her shots with out a murmmur.

Welcome to our club sorry you had to join.

WM, once you get past the bad news of having PsA/Sp, it’s all good. It sounds as if you have a very thorough rheumatologist who believes in early and aggressive treatment. That’s a big win, and that’s how you are going to get the best outcome possible. Congratulations on having achieved this much already. There will be some members who are envious!

Lamb’s solution for your pill problem is what I’d do too – the injectable methotrexate is less likely to give you side effects, as he says. The shots are non-events, really – a minute, once a week and done. And you stand a good chance of responding well.

The Newbies’ Guide has lots of articles which you will find good reading. Have you picked up a copy of the book that I recommend in Book Reviews (above)? I can’t remember whether I recommended it to you or not.

Welcome here! I hope that you find this a good place for support and information.

Gotta put in my 2 cents worth: Enbrel is great!