The latest from my Rheumatologist

Seems as though the stenosis is not in the tailbone, or sacrum, but above it going up to just above the waist. I thought this problem area had been just from disc and facet, but it is all of the above. He said what I was feeling in the sacrum and tailbone was all from the SI joints, it was referred pain, or in other words pain that radiates from the SI joints. The SI joint destruction from my Psoriatic Arthritis is my biggest problem of all, that is why it is so difficult for me to ride in a car, but that the stenosis would cause the pains down the legs, though it is not too bad.

The neck also has mild stenosis, the nerve roots of the spine are being pinched, and the hump is where all of the muscles connect, he is putting me on Xanaflex for that as most muscle relaxants have done nothing. He said this is a med stronger than the ones I have taken in the past, it is used by those who have MS, and if taken at night should help me to sleep.

Also changing my Enbrel 50 mg auto shot weekly, to a different form of Enbrel, one that has to be mixed, that I give through a regular needle every 3 days. He is trying to prevent the drag I am getting the day before my shot time.

He again told me that although I have had this a LONG TIME, he feels as though the progression is getting slowed down, and that I am getting better. He said that even though I had the collapse after over-doing and ending up on the floor and later in the ER is a sign I am getting better if I can even try to over do it to that extent!

My life the last 8 years has been nothing but the fight of almost getting there, and then continuously crashing, collapsing, but I'll push on, just like we all do!

He actually LOOKED at the MRIs of the neck and lumbar, rather than take the word of the Radiologist! That impressed me. For all I know, he saved it to his computer for comparison later, after the next ones.

I now have an even better understanding of what is going on with me, so in 2 weeks it's off to the GP, to relay all of this, and see what he thinks!

Well that is good news. My grandma took her Enbrel every three days it worked well. She now gets a different med through I’ve every 6 weeks due to the insurance.
I am so happy for u that u should get better pain relief and b able to sleep. I am glad that your disease has slowed.
Hugs
Stephanie

Well it sounds like it was a productive appointment. Isn't it wonderful when a doctor listens to you and takes the time to explain what is going on? It may not always be the good news we want, but confidence in your doctor is so reassuring! I can hear the relief in your writing and happy that you've gotten some news. Hallelujah! hugs~ Sandi

I know it is a relief. Right now I'm trying to get over the car ride and the exhaustion of going. Thanks!

Wow. So many nasty illnesses in so many different spots. All I could think was "ouch ouch OUCH," whenever I read about where your pain is and what's causing it. Especially the pinched nerves in the neck. That has to hurt like Hades!

Thank goodness that you're getting some new meds and some tweaks with the old ones.

As terribly painful as it was to get, I wonder if you'd benefit from radio ablation? It might be worth asking your doctor, SK. It does help with referred pain in the SI area due to arthritis. And yes, yes it was awful for about 3 weeks afterwards, I won't lie.

You know, it's really great to know that the Enbrel is working and slowing down the PsA, and your renewed energy during the holidays was a good sign. Now you just need to learn how to deal with that renewed energy without crashing and ending up in the ER.

Your doc is good. Blessings that you got him, SK. You're gonna kick that PsA in the butt!

I'm glad to hear that things are being taken care of :)

I tried many of the ones from the DC, but I guess I have a short neck rather than a long neck and they just never fit right, they created more problems than they cured. I sleep on a regular foam pillow. I paid a substantial amount for it about 10 years ago, it's well broken in, been through the washer many times now.

Haven't tried the 'dog bones' though. I might have to look at them to see if they are as 'exaggerated' as the other ones. I have even tried rolling up a tee or a hand towel, may try that again since I can no longer sleep on my sides, can only lay that way for a minute before getting on my back, and that is probably the SI joint problem too.

He was more optimistic than I, but he is working so hard to make me as well as he can, I did not want to be a downer, of course I had just had the car ride over the rough back roads, and went over about 4 RR tracks just before the office, and even through the wait, still could not even stand up straight by the time he came in, so I was not feeling too optimistic!

He wanted to give me Leqaquin to have at home in case I started running a fever since I am on an immune suppressant, but I told him no thanks, not that. Been through the Achilles tendon rupture twice, it had NOT helped my well being. So I have to check with my GP on what he gave me last time, since I have a Penicillin allergy, and get those here.

Will have to mail in the scripts so not sure what the muscle relaxant will do yet, will take some time to get those.