Axial spa

[Needsome]

Hi

I was diagnosed with axial spa in 2017.

I was at my rheumy appointment today for the results of a new MRI.

There is no active inflammation, good, but there is chronic changes to my sacrum which arent new but there is thoracic changes which are new. What exactly is the meaning of "changes"? Are these the cause of my pain? Would sacrum and thoracic changes cause full spine and neck pain? I dont just have back pain i get tight sore fingers/wrists my elbows hurt, knee/ankle swelling, my heels hurt and toes hurt/ache, the 3 small toes on each foot have become rigid.

Is this normal to have these new changes while on biologics?

I feel i have been tossed by the way side... to carry on with biologic, cocodomal30/500, amytryptoline and ralvo patches.

Anyone any advice, thanks

[piglette]

Sadly although medications can be very helpful, they usually are just helpful in alleviating the problem, not being a cure, even the biologics! I think, as time goes by, our body changes as we get older which is true for everyone. I think you will need to talk to your doctors to answer your questions though.

[Needsome in reply to piglette]

The last words from the rheumy was continue with your meds and see me in 6 months.

[Batty1 in reply to Needsome]

I hear “see you in 6 months” after every Rheumy visit no matter how bad I feel piglette is correct the meds we take are a bandaid not a cure sadly.

[Runrig01]

Unfortunately biologics only slow progression in AS, they don’t halt it. It’s impossible to say how the changes will impact you, without knowing what these changes are. You really need to get a copy of the MRI report to have a better understanding re its impact.

I too have aggressive AS, my SI and ribs are fused, and it impacts every joint in my body. I take methotrexate which helps the peripheral symptoms, as biologics only really ease spinal pain.

I’m currently off my immunosuppressants after having foot surgery 5 weeks ago. AS resulted in calcifying tendons in my toes and partially dislocating them, so surgery was to correct this. My wounds are not healing well, which is why I’m still off my meds,so been off the meds for 7 weeks now. It seems to have unmasked inflammatory bowel disease. Last Sunday I had 2 rectal bleeds, losing around 500ml of blood. My white cells are also high, so they think that I have inflammatory bowel disease. I need to have an urgent colonoscopy in 2 weeks, when I’ll know for certain. However 60%of AS patients have subclinical IBD, and 10% have symptomatic IBD, so I wouldn’t be surprised.

[Needsome in reply to Runrig01]

Its all quite draining... i think i will have to get the report.

I had a colonscopy just before xmas due change in bowel habbits and blood in stool positive qfit of 77. 3 polyps were removed and no further action somthing else left in limbo.

I hope you get sorted.

[piglette in reply to Needsome]

I ask for and keep every check and report on me and file it as the medical profession do not seem that good at looking the information up!!

[Happyrosie]

the charity which you may be familiar with, NASS, might have some insight.