Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group help please- desperate

hi all-

Went into the rhumy today to see if I actually have AS (dxed about 18 months ago, but no back issues and lots of red flags on the diagnosis).

I'm living in a new state, finally have insurance, and have not seen a doctor since May. I got really sick, hips got really bad.

Well... had some hip x-rays for the first time today (always had hip issues so no clue why they weren't x-rayed until now. I didn't ever think to ask because I was positive I didn't have AS). Hips are almost completely fused and there's a bone spur growing off of one of them.

The doc wants me to start enbrel asap. I told him I needed some time to think to which he was supportive. I am terrified of it.

He offered no other alternatives- and I don't think my insurance covers enbrel. On top of being terrified of taking it I am young (25), a student and unable to afford it.

I asked about LDN but he hadn't heard of it and was really against trying. Is anyone here fused at all and using it?

Should I be starting to file for disability? What does that even mean? How do I do that?

What else should I be looking into? What else should I be doing? I am so lost right now I can hardly tell you my name. I had to call my neighbor on the way home from the doctor's appointment because I forgot where she lived (and me therefore, I've been here since May)... I was going over to her house to talk about the appointment.

thanks -Kim

so sorry to hear how thrown you are, but i'm sure you'll get your bearings soon....the immediate impact can be unsettling.

if i were you, i'd ask the doctor about the 3 biologics options and ask him what to do if you don't think your insurance will pay. i'm pretty certain the doctor didn't mention other options because i think the medical community is convinced that these are the medicines most likely to have the biggest impact. i think its good that the doctor is wanting to treat it aggressively.

others can give input on the disability question. i suppose it doesn't hurt to try to be prepared for the future, but the future can be so unpredictable. i've read many times over how some people on here that are a bit older really thought they'd be disfunctional by now, but they're still living life fully. one person that comes to mind is steve (our resident lawyer; read some of his posts, i think they could help). i know there are others too, but his posts really come to mind; how he thought in his early 20s and now with hip replacements a while back and a family and out golfing and still lawyering and all. sorry steve, i know i'm butchering your story, but it really was an inspiration when i read it.

hang in there. once it sinks in, you'll know how to proceed.

sue

I can empathize well with your feelings of shock and disbelief at having your AS confirmed, and also with your concerns about starting a biologic. I had a somewhat similar experience this past summer. It took me several weeks to absorb fully what my doctor was telling me. I then spent another few weeks researching everything I could about AS and the biologics. I want to reiterate what Sue says on the disability question. With the right medications and treatments, and a relatively early diagnosis (which it seems like you have, since the back problems haven't started yet), you have a good chance at having a productive and satisfying life, with a job, family, etc. There's nothing "normal" about having to live with a chronic illness like AS, but it can be managed, with medication and careful treatment by a good rheumy. So please don't lose hope!

It sounds like your rheumy is trying to treat your AS very aggressively. This can be scary for us as newly diagnosed patients, but it really is a good thing. This is esp. true when there is hip involvement, which has been correlated with more aggressive cases of AS. I fretted about the decision to start a biologic until my body finally made it clear that it was the only choice. I started Remicade about a month ago and it seems to be helping. My fatigue and general well-being are much improved and the AS aches are diminished. They are still there and flare up from time to time, but the flares are much less severe and seem to be self-contained. I was disappointed to read a news item on the SAA website about a study that says that Remicade, like Enbrel, doesn't seem to stop disease progression over the long run. But what it does do is treat the clinical symptoms, so that we feel better and can live as normal a life as possible. I still struggle with the idea that, at some point down the road, I will have serious problems. But, for now and thanks in large part to Remicade (and Mobic), I have been able to get back to living my crazy life (I'm a college prof.).

Hang in there, take lots of deep breaths, read around, and I hope things get easier for you.

Monnica

I can empathize with the terror at starting a biologic agent. I am in medical school so I am constantly around sick people. I have become a sanitation fanatic! So far I haven't had any problems and have even started to notice some reduction in my SI pain. In the past week I have not woken up in the middle of the night in pain (I just realized that). I am even considering running a half-marathon in a two weeks! Is it Enbrel or placebo effect? Either way I will take it!!!
As far as insurance... I am on a student health plan that covers drugs with a maximum of $100 per ILLNESS! I just picked up a 3 month supply and it was $5447.99. I had a quick assist card so I only had to pay $50 (that is less than 1%). The only way that I am able to get Enbrel is through the assistance of an angel. I spoke to one of the deans at my school about my situation. One thing led to another and the right person heard. One of the other deans is married to a dermatologist who regularly prescribes Enbrel. She has a very wealthy clientele and her Enbrel rep takes good care of her. The very next day I was handed 14 'samples' and the quick assist card which covered another 3 months. Her rep has agreed to continue to supply her and her 2 partners with regular samples. She is going to pass them to me until I finish school and get real insurance.
My advice to you is first contact Enbrel directly. They will call your insurance company and find out what your coverage is. If that doesn't pan out talk to the administration at your school. It is worth it. I am not sure that I would have been able to continue medical school experiencing the constant pain and insomnia that I have been suffering through. Good luck! Feel free to PM me with any questions.

Hey Kim,
I can understand your fears both of AS and the Enbrel as a treatment. I have been on biologics for several years now, beginning with Remicade and now Enbrel.

As for the financial end of it, Trish offered a great idea, I know some drug companies offer assistance to patients that can't afford their meds. My own silverlining came in the way I receive my Enbrel. When I was on Remicade I had a home health agency that came to my home and gave me my infusions here. When I had to change to Enbrel I was able to still get the meds from the home health agency. By the meds coming through the home health my insurance considered it to be a treatment rather than a medication and paid 100%. I know all insurance plans are different but it might be an avenue to look at.

I wish you the best with whatever decision you make. KickAS is always here.

Keep Kickin'AS
Chris

Hi Kim,
gosh, what a stressful day you had--and you must feel as though you are living in a bad dream. But take heart from what others have said here, and take it a day at a time. Take time to research your medication options and remember to take care of yourself--take breaks to stretch and eat well. Keep posting. I'll be thinking of you!
Jan

Kim, I'm not sure what you're more thrown by, the firm dx, the amount of damage to your hips, or the Enbrel. It's a huge load to be handed all in one appointment. The good thing is, it's now confirmed. Damage to your hips doesn't mean necessarily that you will end up on disability right away. You can still live your life, but you may have to be creative about how you accomplish things.

As for Enbrel, ask your doctor to put you in touch with Enliven (Enbrel support area) to see if they have financial help for people on Enbrel. Get as much info as you can from them. Talk to people here. So many people have regained their lives through the biologic meds and now, after over 10 years of data on them, they are finding that some of these meds' potential side effects are not as bad as they'd initially thought they might be.

And breathe. Honestly, stop and take a deep breath. You'll be OK.

Warm hugs,

Welcome. I am glad you found this site. There is so much to learn about this wonderful disease. and this is where I found out more than my doctor had time to tell me in shot visits. Everything in a visit like that is overwhelming, I know. When I was dx. I had already been on steriods and nsaids. They didn't help. my Rheummy started me off on Humira and then Enbrel. Unfortunately for me it didn't work. But many people, as you have read, have had wondeful success with the TNF's. there are programs available and it's not charity, its part of the medical community helping people get treatment that helps. From what I have seen on this site. The people who have to apply for disability have many issues going on, me included. I still have hope I can get my health under control and return to work someday. I know a couple of people here are trying new drugs and I am hoping to try these also. I wish you luck and give yourself time to adjust to the news.

Hi kim,
I went through a similiar experience as you with the shock, fear of disability and fear of the meds. I have to tell you that what helps me is living each day at a time and as Inanna stated, to take a deep breath and not overwhelm yourself with the dx. Hang in there!