Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Back from Rheumy appt

I went for my 3 month appt with my rheumy today,and I am just as confused as ever.

as a refresher I have had spondylitis or AS since I was 20, just diagnosed in oct.now 46. The doc started me on enbrel with in 2wks all of my old muscular back pain was gone, but soon after I developed alot of odd pains, never experienced before. tinnitus, ankle pain, heel pain, stiff hamstrings, pain in my wrist, extreme fatigue. after 6 weeks of enbrel she advised me to temporarily suspend it, until the new symptoms disappeared, then resume. I stayed off of it for 6 weeks. Alot of but not all the symptoms went away, then I resumed the enbrel, heel pain has done nothing but get worse. as well as leg stiffness. Back pain is still better than it was.

Today she said my symptoms were "wierd" told me she wants be to start taking naproxen again, and quit the enbrel for 3 months. If all of these symptoms go away, then we will look at humira. I had taken naproxen and ibuprofen for 20 yrs till they just plain stopped working. Im just not sure about all of this, it just doesnt make sense to me. Today when I walked into the clinic, i was the only patient there. during my journey to find out what was wrong with me. I went to pain management docs, neurologist and orthopedic surgeons. A couple of these docs told me that I needed to see a Rheumy. When I told them I already had and appt at this hospital. 2 of them told me, it was a good place to be diagnosed, but not treated. even though the clinic was empty, she still only spent 15 minutes with me and seemed rushed. I am wondering if I should move on. Should I give this doc more time? I dont want to be a patient thats hopping docs all of the time, but when your only seeing them every 3 months it dont take long to run into yrs. I am getting very discouraged. I have had this for along time, it just seems like these people just dont give a rip. I am quite distressed.

I would move on. Trust your gut. Before my symptoms were better controlled the rheumy was seeing me every 30 days with emails in between. Now it's 3 months for maintenance because I've been improving. It sucks when the dr doesn't seem to care. The sad part is she/he probably doesn't. That's just how it is. Lots of people lose compassion when they see the same thing day in and day out. That just highlights the fact that it's up to you to get the care you need because if you don't seek good care then people will probably give you subpar care, sadly. There are other treatments for you at least. Maybe you can take pred until your symptoms are under control or pain meds just short term? Or a different NSAID? Sulfasalazine helps me greatly.

Good luck.....

This is exactly what my gut is telling me. I didn't mention that I called with a question 6 weeks ago. I was concerned with my feet slowly getting worse. There is no choice but to leave a message. No one ever called me back. I asked her about this. I was told that they had a lot of problems with nurses that I was. Or the only one that had called and not received return calls. It takes so long to get in to see these docs.

If you have the luxury of picking from multiple rheumy offices one of the things you might consider is asking if there is a way to send questions to them electronically. My obgyn answers questions on a personal website for the office and my rheumy is amazing and actually gives patients his work email. I have never had much luck with communicating over the phone. Either I don't get called back, my messages are relayed incorrectly, or we play phone tag for days.

Yes I asked her if she could be contacted by email she said no. That would be so much more simple.

Bax,

I would move on. I've had this way too long to have the wrong Dr.s. She gave you the bum's rush and wasn't showing concern or even helping you. My Rheumatologist has me go up on my Prednisone without even calling when my heel is killing me. Your Dr. didn't even suggest that much.

I would not jump doctors, rheumatologist are few and far between, plus the cost of getting a new doctor is expensive.
I understand your frustration, my heel pain lasted 4 years, painful to walk and could not sleep on my back due to the heel pain, slightest pressure would cause pain. I had no idea it was AS related, quack did exploritory surgery as nothing helped. Even put me is casts to reduce the movement of my tendons along with anti inflamatory meds.
I agree with your doctor, your symptoms are weird, the pain moves around to different parts of your body, again..weird, even the name of the disease is "weird" don't be to expecting too much from your doctor, it's treatable but not cureable. If she had it she would still agree that the pains are weird, no rhyme or reason as to why the pain moves to different parts.
It's the middle of the night here, can't sleep due to pain in my lower back which seems to every night and every time I try to sleep.
Although your pain sounds weird it's not unheard of, eventually it will stop hurting in your feet and move to another part of your body. At least that's how my life is...weird.
seems a lot is focused on the fusion of the spine and hips, but it can affect your eyes as well. Seems it has no limitations, how can your eyes be affected from AS when it's a disease of the spine?

It is really hard to get in with a rheumatologist. It wouldn't hurt to look for a different one but hold on to what you have until you are sure with a new one.

Elmerfudd, I hope you got some sleep. How are you?

Well I went ahead and made an appt with a new Rheumy a while back, its a good thing too. Im 2 weeks out from my next appt with my old rheumy, clinic called yesterday and said that she had left to go into private practice. My new Rheumy's office called and told me that they had a cancellation for tommorrow. I had them put me on a standby list, me appt wasnt until 9-10..

this couldnt have happend at a better time. My old rheumy had switched me to Humira. Its not working at all. My old back and neck pains are coming back a little more each day. The enbrel had knocked all of that out, but gave me alot of side effects. Im hoping for the best. Ive been tempted to take one of those enbrel shots that I have left over