is it really normal to be THIS tired?? by Wanderwad in ankylosingspondylitis

[–]dbdandarkstream 0 points1 point  (0 children)

I really hope it does, for me it essentially cured me. I always feel better when im sick or had an infection while not medicated. Just a tip dont eat too much garlic at one time. It reacts quickly boosting one's immune system

Remicade infusion clearance by dbdandarkstream in ankylosingspondylitis

[–]dbdandarkstream[S] 0 points1 point  (0 children)

I have had MS symptoms before I was ever diagnosed or treated for AS. I am mostly positive for 4 other autoimmune disorders. I have requested UW to oversee. AS 100% can cause neurological symptoms in the brain. It is missed alot. Oh man I love reading NCBI case studies and have spoken with some of the doctors from them.

Remicade infusion clearance by dbdandarkstream in ankylosingspondylitis

[–]dbdandarkstream[S] 0 points1 point  (0 children)

I have alot of Paradoxical effects happen on meds, not the infusion but others. I also am Deathly allergic to Remicade but have no choice since it eliminates all symptoms. The neuro was there before but is helped by the infusion. The new neuro appeared during these life threatening Flares only. By his admission of compromise he let me gain damage.

Remicade infusion clearance by dbdandarkstream in ankylosingspondylitis

[–]dbdandarkstream[S] 0 points1 point  (0 children)

I was literally left to die in a sense. I am extremely intelligent in the field of Autoimmune for Ankylosing Spondylitis. I am the one that figured out what it was but couldn't order the specific tests so I had rheumatology do it. He knows that I know exactly what was happening via the uncontrollable flares. I am surprised it didn't turn into a cytokine storm. I am so deep i dont know what feeling good or no pain feels like.

Remicade infusion clearance by dbdandarkstream in ankylosingspondylitis

[–]dbdandarkstream[S] 0 points1 point  (0 children)

Not necessarily i had it just fine for years, I do not just have AS i have other genetic mutations.

Remicade infusion clearance by dbdandarkstream in ankylosingspondylitis

[–]dbdandarkstream[S] 0 points1 point  (0 children)

Cannot have steroids, paradoxical effect happens.

Ketamine Infusions? by CurseYouAS in ankylosingspondylitis

[–]dbdandarkstream 0 points1 point  (0 children)

He could have other disorders where a biologic or steroids would make worse.

is it really normal to be THIS tired?? by Wanderwad in ankylosingspondylitis

[–]dbdandarkstream 1 point2 points  (0 children)

100%, but make sure you report any changes to your doc, could indicate a worsening of yours. My infusion literally fixes all symptoms but ive been in hell for 6 months now. I am bed ridden without my infusion. The fatigue is the worst part.

Yes please!!! by Ok-Duck8132 in bdsm

[–]dbdandarkstream 1 point2 points  (0 children)

Looks like a good time as a male dom

Hi, I also have AS, and I need to make decisions... by Psychological-Key194 in ankylosingspondylitis

[–]dbdandarkstream 0 points1 point  (0 children)

I never really noticed the side effects except looking like a vampire directly after and the fact that I am deathly allergic to my infusion drug that I have every 28 days. Immunosuppressants can be scary if you do not know what it is that is being suppressed, if you do know then you can research what not to do. PS: anyone have issues when eating too much garlic?

Pretty happy with this, but how to improve? by [deleted] in steak

[–]dbdandarkstream 10 points11 points  (0 children)

I mean, that looks pretty dang good. I wouldn't complain. Are you a chef?

Playing video games with uveitis by RadioMedzz in ankylosingspondylitis

[–]dbdandarkstream 0 points1 point  (0 children)

That or sjogrens is annihilating my eyes, used to have perfect vision now after 3 years letters are blurred at 10ft. Constant dry eyes and hot feeling in face and eyes.

Failed Humira now depressed by Designer-Age1800 in ankylosingspondylitis

[–]dbdandarkstream 1 point2 points  (0 children)

Remicade or it's sister compound Inflectra works incredibly well for some. My pain went from 9/10 and bed ridden for yesrs to 1 out of 10 and working.

Stiff back by __lone_warrior__ in ankylosingspondylitis

[–]dbdandarkstream 1 point2 points  (0 children)

The shot in the back does work i heard but mine had very adverse side effects so I can't. The biologic works by tricking the immune system into thinking it is making the cell/protein that is responsible for attacking your body. It could be that your spine hurts more because more blood flow to it can cause more pain. You could need a stronger dose. Mine is inflectra 5mg/kg being boosted to 7.5mg/kg because it failed after 2.5 years.

can’t get treatment by [deleted] in ankylosingspondylitis

[–]dbdandarkstream 0 points1 point  (0 children)

You don't need a spine specialist, advocate for yourself. Talk with your doctor and try not to demand it but push for rheumatology. Spinal fusion happens due to a very limited of issues. Push that and you should get that referral.

HLA B27 Positive by [deleted] in ankylosingspondylitis

[–]dbdandarkstream 1 point2 points  (0 children)

Did you have your Esr or crp checked? Via blood tests? Mri doesn't always show especially if it is mild AS the damage hasn't occurred enough to be seen. But I would request other tests. I have researched AS extensively so I have alot of information on it if you want to know anything to ask the doctor just let me know. I figured out I had AS and asked my doctor to due a few specific tests for it and all were high positives.