Hello everyone!
I am brand new to this forum and would like some input on a difficult issue I've been having. While I know there is no "right" or "wrong" answer, I would still appreciate opinions.

That having been said, my name is Rachel. I was diagnosed with AS about two years ago and have been taking Remicade ever since to help manage everything. It all started when I was about 7. I would have horrible aches and pains in my back, knees and wrists. Unfortunately, my mother didn't think there was anything really wrong with me and the one time we did go to my PCP about it, it was simply written off as "growing pains".

I dealt with all of that on an "on and off" basis until I was 17. I was in high school at the time (also had gym class) when suddenly my knees became incredibly swollen. Eventually it became a problem for me to walk. My PCP sent me to an Orthopedic Surgeon who did a slew of tests. Originally it was thought that I had torn my catilage somehow in gym. I came back ANA positive. The Orth. Surgeon sent me to a Rheumatologist.

The first Rheumatologist diagnosed me with Lupus. I had never had a Malar Rash, but I was photosensitive. She put me on Naproxen and HCQ. I kept insisting that I wasn't seeing any results. My back was still inflamed and in pain as well as my knees. After about six months of that therapy, my knee swelling went down a bit to the point where I could walk without assistance. I still felt that all of my symptoms weren't managed. After about a year and a half, I left this Rheumatologist to get a second opinion from another.

The next Rheumatologist was much more aggressive than the first. On our first meeting, I sat down in his office with him. He looked over my charts for about ten minutes and then asked a slew of questions. After about twenty minutes of me being in his office, he announced that I didn't have Lupus. Of course, this through me for a loop. What did he mean, I didn't have Lupus?! Of course I did! But he patiently explained to me that I didn't have enough of the symptoms to qualify for a diagnosis of Lupus. He told me he thought I had something called Ankylosing Spondylitis.

So now comes the tricky part. I have been dealing with this for most of my life and am still very young. The new Rheumatologist started me off on Indomethacin and Naproxen. When I didn't respond to that, we went up to Methotrexate. When that didn't work, we dropped all of that and went to Remicade. I am now on the highest dosage that I can take at my current weight (which is 8 vials).

I started to have a symptom with something that seemed unrelated to AS; migraines. The would be right about my eyes and would completely wipe me out. The only way to get rid of them would be to sleep them off. After consulting the Rheumatologist and my PCP, I was sent to a Neurologist. She ordered a CT and MRI on my skull and top of spine. The results came back and my brain was fine, but of course my spine wasn't. C2, C3, and C4 are fused together; as well as C6 and C7. She told me that this explained my limited motion in my neck (which Physical Therapists had always told me was because I wasn't limber enough).

When I went back to my Rheumatologist and told him this, he said that he wasn't surprised. The AS that I have is very aggressive and is in advanced stages. I asked him what else we can do (I am currently on Remicade, Indomethacin, Cymbalta, and Percocet) and his response was that there is nothing more to do and we have to see how the disease will take it's course.

Of course, this upset me quite a bit. I hate feeling powerless to anything, let alone my own body. I am thinking about seeking a new Rheumatologist, but I don't know if they will just tell me exactly what he did. I am also going back to College at the end of this week (August 27th) and finding a new Rheumatologist would just be one more thing to stress me, but it may be important. I guess what I really need is guidance. My mother isn't much of a help, she keeps asking when I'll be "totally disabled" and wants me to live with her for SS benefits (which I don't think I could get anyway). My father thinks that this whole thing is pretty much made up in my head, so I don't even try to talk to him anymore. My boyfriend is very supportive, but it's stressing for him at times.

In short, AS sucks.

I'm sorry this was such a ramble, but I hope you have good advise. Thank you for reading.

damage is damage, what's done is done. Now you have to stop further damage.

A new rheumy - I'd say yes. Don't give the old one the heave ho, keep him on the side until you find one you really love. It can take a while. You are going to be with this doc the rest of your life - better find one you like and one who isnt' going to give up on you. If they give up - freakin run! There's always new drugs and things to try.

Why did they take you off MTX? They should have just ADDED REmicade to it? You can develope antibodies to remicade without MTX! And there are other drugs out there too, humira, enbrel, simponi, cimzia, orencia, rituxan.... just cuz one didn't do the best doesn't mean another wont. And quite frankly, you should still be on a NSAID, if you can take them (some people have stomach issues that prevent NSAID useage).

My vote - get to someone else! It took me 5 years and numerous rheumys to find one that's a keeper! Maybe someone in New Hampshire can recommend one?

Best
Jewelz

Thanks Jewelz!

I wasn't sure about the MTX. I had done research before and saw things similar to what you have said, but (stupidly) I assumed my Rheumatologist would know best. I don't think he's "given up" on me, he's just suddenly taking a much more passive approach.

After reading your post I called my Rheumatologist's office and requested a refill of MTX and Naproxen, so we will see how this goes.

Along with being on Percocets for immediate relief, I also have Lidocaine patches for my lower back. PCP said it would be best to use when pain is the worst, but I find they fall off easily. Not sure what to do about that.

Thanks again Jewelz! Hopefully this will help.

I would ask current rheumy to try one of the other tnf's as one seems to work for one person better than another. I think that it is not fair for anyone to expect you to wait and see how much damage will be done to you when there are other treatments available. I agree with Jewelz that mtx should have continue with the remicaid. Don't give up, see what this doctor will do once confronted and if he is not willing to help you fight, get another doctor.

Welcome, you have come to a good place for information and support. You sound like a fighter which is a good thing.

AS does suck!

Sounds like you are getting closer to a good rheumy but not quite there yet... this site has an area with reccomended doctors you may want to check out.

I am just so sick and tired of the doctors not knowing what to do with me. I complain about something, get a bunch of tests that come back normal, start the cycle all over again. Sad that your dad doesn't understand, it's hard for people to understand what they can't see. We look "normal" how could we feel as bad as we say we do?!?! I'm always being told strengthen when things hurt, so over it! There's so much unknown about this disease, but the last person you want to give up on you is your doc.

Stay strong get let spodny keep you from doing school! xo

p.s. I take Enbrel and Cymbalta, Enbrel helps but doesn't take it completely away.

Ok, when I had a rhuemy who told me there was nothing else to do. I went to a big research hospital. When I saw the new doctor, I told her that that dr had said there is nothing else to do and I want/need aggressive treatment. I did not bad mouth any of the drs (did that once before and that does not help) just said I need aggressive treatment.

This dr has never failed to provide another options and believe me I have been on many many different combinations-all which help for a time and then stopped working.

Sorry about the fusing, who know when that happened. Sorry try to focus on the future because focusing on what could have been. I know, been there done that.

Sorry. Anna

Thank you Tia and Michelly.

I try to be a fighter, but some days are harder than others. When I was diagnosed with Lupus, I went through my whole mourning stage and being sorry for myself, but now I'm honestly just trying to live my life as best I can.

Maybe it's time to try something other than Remicade.

Rachel

Thank you Anna. I made an appointment with Lahey Clinic (huge hospital in Boston), so I'm hoping I can do what you just described. I'll be sure to tell them that I want an aggressive treatment.

I try not to focus on the "could have beens", but once in a great while everything kind of overwhelms me.

Rachel

Rachel,

I'm so sorry you have to deal with so much at a young age. You sound like a very brave and resourceful person. I think it's great you made an appt with the Lahey clinic. I hope you find a Rheumy who will do more for you.

If this does not happen, please don't give up. I've been through three rheumy's in five years. The first two insisted I had AS and I went through Enbrel, Humira and Remicade, each lasting 18 months to two years and never really giving me enough relief to live my life very well.

The third says I don't have AS and put me on Sulfasalizine. Seventy-five percent of my pain was gone in a month. It frightened me that I was giving up TNF's, but he turned out to be right. If I'd gotten no relief from him, I would be looking for a new Rheumy.

It's your life so do whatever it takes to live it to the fullest.

Let us know how your appt at Lahey goes.

My thoughts are with you.

Best regards,
Mariposa

If I were in your shoes and to a degree I am (started with symptoms at 18 yrs old now 55) I would get myself to one of the local centers of excellence for arthritis. I would think NYC or the Mayo in Rochester. I would make an appointment for a 2nd opinion and take everything. These appointments take work and typically take 1-3 days of tests. Insurance may pay for it as a 2nd opinion esp given your new onset of headaches. In this way you can have top people review your case consult with your MD's and their teams in Rochester or NYC. I wish you verve and pain free days young lady.