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Thanks for sharing your story. My 12 yo was just diagnosed with AS and started Humira yesterday. I'm intensely waiting for the Inverse Vaccine or Revolobio 1805 or the BIOCAD drug just released in Russia and now available widely there for AS (but I'm not going to Russia). There are quite a few autoimmune long term remission treatments coming, but not fast enough.

update video brother

Before I was on biologics my SI joints were the main cause of my pain. I've been on medication now for a little over a year, it has changed mylife but I do worry the damage has already been done.

Update video??

So interesting that the disease progresses despite no pain! I think that's one of my fears. I started having symptoms less than year ago at age 27 and started biologics very shortly after symptom onset (~6 months) which is pretty unheard of especially for women. I think my prompt diagnosis is partly because I'm very stubborn and kept bothering doctors about my pain because I knew it wasn't normal lol. Anyway, I'm hopeful to prevent disease progression as much as possible but this video helps me paint a potentially more realistic picture of what could happen. I also have peripheral involvement in basically every joint (so rude) so I am curious if damage will be less but more widespread over time. I'm responding incredibly well to cimzia but I also changed my diet pretty significantly. I hope you continue to be pain free. I am sure your experience having a chronic condition helps shape you into a better physician for your patients! Thanks for sharing your story. It's very helpful for someone newly diagnosed.

I've had a number of diagnosis over the years (about 26 years now), never really found the true answer as I am just not progressing the way one would expect AS to do (had several MRIs). Only thing that worked for me were about 3 rhizotomies (easily tolerated under wake sedation)., they are not permanent, but each time I was left with less pain, almost like steps... so I generally have much lower pain levels, although I still get the same pains, just less sore, and less downtime.. I initially had the AS diagnosed by a nuclear physician.. I had to drink stuff and then they scanned me... It showed a clear colour picture of the inflammation... it was a bit of a relief cause finally I had something could show... backacke is not like your leg fell off, other people can;t see your pain.

Humira injections didn’t hurt me either but it did nothing for me

Thank you for posting these videos. I was diagnosed last year and your vids have helped me understand and get through starting biologics as well as managing this disease. Also, I feel you on the SI joints. I have edemas in my right SI from it and without the biologics it’s extremely painful.

This is a very important video to actually know how well biologics worked from the inside.

Hope to see your next update video soon!

Brother, keep posting updates it gives us a companion to look at. I have a question I am also on biologics do people often develop resistence to a biologic drug?

Absolute miracle drug saved my life

Better than humira or cimzia?

Really interesting thanks I get costochondritis and lung tightness too. So glad biologics seems to be working for you from last vid. Lol also need to stretch too! It's hard getting that routine. Take care and hope doing good

Wishing you all the best 😊

Good to see you doing well and I hope you get over that infection soon. I have been on Humira now for almost 2 years for AS. It's encouraging to see someone on biologics for years and years with good results, despite some changes in medicine of course which seems to be inevitable. Unfortunately my insurance company may be looking to start me on biosimilars next year but will keep Humira as long as possible as its been the most effective without any major issues. Curious, as a long term biologic user do you see any other docs for preventative screening such as dermatologist or the like? I get tested for TB once a year but developing a malignancy scares me the most. I plan on getting routine skin checks and maybe a slightly early colonoscopy. Despite feeling like i'm cursed sometimes with an autoimmune disease, i also feel blessed as millions of people have it much worse. I pray for all those suffering out there that they find some treatment to make life enjoyable for them again. It can be so hard but we just have to put one fit in front of the other. Take care brother.

Thanks for sharing your experience. I have wanted to make one of these as well to share my 30 years with AS. My Humira experience was not good at all. My symptoms were greatly reduced almost immediately, but unfortunately, I got one of the not-uncommon side effects of the drug: extreme insomnia that continued for 4 years after I stopped taking it. I never had any trouble sleeping before Humira. It was so severe it nearly killed me and my experience brought reps from the drug maker to study my case. And the drug stopped working after just 5 months. As the video mentions, there are significant risks with these medications. Later, I ended up going on an old drug for psoriatic arthritis called leflunomide combined with an antibiotic (Dapsone). After 30 days I felt so much better. That same combination of drugs is still working after 7 years. It totally stopped my 2-year cycle of uveitis and I have not noticed any side effects. I have very little pain now and retired my canes and crutches. Sometimes the new fancy drugs are not the way to go. A 30-day supply of leflunomide costs about $20 to Humira's $2500. My "miracle drug" was 2 generic pills-one from the 1930s (Dapsone) and one from the 1990s. Newer is not always better unless you are describing drug company profits. Don't give up if you have a bad drug experience. Keep trying and you will find one that works for you. Every case is unique.

Make a update video

Hey man! I’m a 22 year old and was diagnosed with AS 2 years ago. I went through the NSAID route and it caused major stomach discomfort. My doc is suggesting I try enbrel. I’ve watched your videos on biologics and to be honest still find myself anxious of weakened immune system effects. I’m still able to do most day to day things with AS but struggle to play tennis for long periods and end up in pain for days after sometimes. My doctor also mentioned more severe (but very rare) side effects of different cancers. Currently trying to decide whether to start the biologic or wait as long as I can until I absolutely 100% need it. I know each person is different, but would love to hear any insight you have about how you decided to start and your rationale with the potential side effects. Your videos are really helpful, thank you

Hi,,it’s nice to get this update and know you’re doing well. I first found your page when I was about to begin enbrel. I also had to get off it after 5-6 months because of a tingling sensation in my arms and shoulder that would not stop… very frightening and At the time my doctors scared me and told me it might be MS! I’ve been In cosyntanx and have moved from the north east to sunny San Diego. All my symptoms are gone! My aches and pains are gone and I attribute it not to cosyntanx which wasnt helping me much anymore when I was still living in NY but to the weather in Cali. I would strongly recommend moving to sunny warm Southern California.. it’s changed my life for the better !

Hello brother. I was taking sulfa and now im on mesalazine becouse is better for my stomach. I was recently diagnosed and symptoms was started in september last year. Was hell for me but I hope for better. Im happy to see you pain free and happy!

Hello, great to see you pain free. Have you came over the symptoms of infection? Is there relief now?

My anxiety got really bad on humira 🥺

Brother, can you tell me, my father is 54 years old, retired from the army and the source of his alcohol and smoking.Is it right to give him simpson injection? Spondylitis he have

Hi…how are you doing now??

Thank you for sharing.

Ive been diagnosed recently 3 months ago not having symptoms before si diagnosed pretty early but now nobody want s to put me on biologic and im in pain, they just give me sulfasalazine wich is not helping too much. Btw im from Romania

Brown girl, fellow physician with undifferentiated spondy here. About to take the plunge and start Humira. Was told that patients don’t usually have issues going off on and the drug, so glad you shared your personal experience with it. How have you done with occupational exposures? Of course this is one of my biggest concerns.

Tmr ima take my first simponi injection and I don’t feel safe taking it

Tmr ima take my first simponi injection and idk if I feel safe with it once I saw the side effects

I started Humira for Ankylosing spondylitis 4 weeks ago. No noticeable improvement. How long did it take for you?

Thank you for posting these vids. I was diagnosed this year with AS. Started Enbrel about a month ago. Very scary to start the meds. Results were awesome and quick but after my last injection I’m having some similar nuero effects. Some numbness in hands as well as dizziness. Rheum took me off Enbrel and wants to try Taltz. The side effects are still here after a week but it’s comforting to hear that your side effects cleared up. Thank you for documenting your journey.

Finally.. I’m really not alone .. thanx for videos

Thank you for your updates! So glad to hear the treatment is still working for you. If you ever have a moment, could your go over how you were diagnosed? What were your symptoms and how it affected you. In one of your videos I believe you shared you were a teen. AS is hereditary- does anyone in your family have it? How do you manage daily? Has it changed your diet and lifestyle?

can you tell me your instagram or facebook?

Glad to hear from you! Did wonder what you had been up to.

Hey man, good to know you're doing well. Started Golimumab two months ago, two doses on, and I'm feeling way better than I was in years. Hope we'll both keep on improving! Will start some exercise soon. Are you able to exercise in general? Cheers

Hi my friend, I need to ask you something. How long did it take you to realize your improvement? I've been in actemra (another biologic treatment for 2 weeks, and I see nothing), some people told me, it generally takes time. I feel awful, because my illness is very active and mi medication seems to be a waste of time. I hope you can give me more lights. Thanks a lot for your help

Can you update your experience please

I’m going to use Simponi I’m 43 woman suffering from AS, did you use Humera? Which one better?

How was the diagnosis made. Rhuematoid factor? Cause sometimes the basic tests don't always show it if it's seronegative.

Hey,. I have AS, I was first put on Humira and it lasted three months when the pain started returning. I’ve been on Simponi for 5 or six years now and I definitely know there was a difference. During Covid my delivery was delayed and the pain returned and I was grateful to have it back. But now that I know what I know I’m wondering if I can survive without it. I do not know anyone personally with anklylosing spondylitis so I’m grateful to have found your video thank you for doing it. I woke up at 21 thereabouts and couldn’t walk. I could not use my legs without causing myself excruciating pain. This lasted until I was 45, until I got on Simponi I agree with feeling stiff in colder weather,. So I stay warm as much as I can. I actually have been conditioning myself to be OK in cooler temperatures. However when it gets too cold I start to feel ill and my body tenses up because I can feel the pain coming on.

would love more updates, man, especially about what are you being able to do and what you still have to avoid, in terms physical activities or anything else in general. really great to have found your channel. from a fellow AS sufferer.

Thank you. I am battling my attitude I have such a poor attitude most times always uncomfortable and I feel like how dare the world add on to it I just want change

Would love to hear any updates! You give such good details compared to other people with this disease

I've got the Spondylitis rheumatoid arthritis fibromyalgia degenerative disc disease it sucks at all sucks and I never even had a suicidal thought until I started having these problems imagine waking up in your mid 20s gradually diving into unexplained pain and you don't know why I wouldn't wish it on my worst enemy

Yeah I know the feeling you just changes you it's constant torture you become a rotten person you hate being around people you no longer enjoy things you used to enjoy and then on top of that you have everybody Under the Sun telling you it's all in your head and then you got doctors basically looking at you like you're a drug seeker and not lifting a finger to help you oh you're too young you're too young f*** you

Hey man, similar story here went un diagnosed for 10 years and finally about to start simponi, however rightnow i feel great 0 issues on 0 medications. Starting these injections seems like alot when im feeling good, but when im feeling awful i would do anything to take the pain and stiffness away. Im 29 now and also workout alot. Has these injections affected your workouts or lifestyle in any way? Also what do you think about starting simponi when you arnt having symptoms. My first injection comes in 3 days

Any updates?

Do you struggle with sleep too whilst on biologics ?