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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: Is There A "Light" TNF Inhibitor? theyoungestmuse 10/20/19 08:22 PM
If you research there are meds that lower TNFa. I remember Buproprion and I think even fexofenadine. High dose fish oil and maybe high dose vitamin A. Research first though because I looked this stuff up years back. I do the EPA and vitamin A.

There are some folks who use reduced doses of biologics. I have heard of Enbrel being taken once every 3 or 4 weeks instead of weekly. I suspect this is going to be me with Cosentyx or Taltz. I am tantalized by the experience where I stopped Cosentyx and the side effects were gone before the pain came back

I have even had an increase in pain just in the past two weeks. Today I got desperate and took a shot of Cosentyx. I hate getting to that point where you are desperate and will grab at whatever gives you relief. I took pain medicine on the job Friday. I've gone gradually from twice per month to twice per week and now every other day(pain meds). It's usually just tramadol with apap but a few weeks ago I had to break into the Norco stash. This won't work. So I took the shot. I won't take another one anytime soon but I had to try. My mind was running through the things I had done. I forgot my chair cushion on Thursday or I got overheated yesterday but in the end the pain was too intense and nothing was working so I had to give it a shot-all puns intended.
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: Claritan D MichaelSean 10/19/19 03:55 PM
So I conducted a little experiment on myself. On Thursday and Friday I took Claritan only ... no D. The pain returned. This morning, I took a Claritan D. The pain was gone about two hours after I took the pill. So it's definitely the D that's relieving my pain. Which squares with my previous experience of Adderall taking away my pain and also jives with that study you cited.

When I took Humira (which also inhibits TNF production) my pain relief was nearly instantaneous. As in I had results the very next day. Which, from what I understand, isn't unheard of but very unusual. So it's definitely the TNF that's causing my issues. But I was so sick and nauseous when on Humira, so I'm reluctant to start taking it again.

I feel like I need something that does what the Claritan D does ... inhibits the TNF production, but not to the extreme extent that Humira does. Is there something that inhibits TNF production only a little bit? I don't know what that drug is. Otezla maybe? I'd have to research how that particular drug works. All I know about it is that it's a pill and that there are no routine lab work requirements when you take it.
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: CBD contraindicated with NSAIDs Imnotsure 10/18/19 11:19 AM
Originally Posted by MichaelSean
I've never tried CBD oil because the real thing is pretty easily available where I live. What I HAVE noticed ... and I've never found an explanation as to why ... is that while cannabis helped with my pain for a few hours, the next day it was so much worse. The only way I can explain it is that it felt like I was swollen on the inside. So for that reason my cannabis use is pretty limited.

You're more pain the next day because your body is reacting to The plant tannins. I was the same way with cannabis. It would cause me more inflammation the next day and severe sternum pain. I had to vape THC distillates to avoid the reaction.

Anyway this is good news for you because it sounds like you can control AS very easily with diet. Some people are very food sensitive with AS symptoms such as myself.
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: Failed with all biologics WhiteCell 10/18/19 12:35 AM
Well I can say for sure that I am here for you. I've been on Remicade without problems however the AS itself has been a constant companion with multiple eye surgeries and cardiac picnic...

Glad that even though the pain is present that it's tolerable and you do feel better....You are clearly strong. good to know you.
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General Message Board for Ankylosing Spondylitis and Related Diseases Jump to new posts
Re: Biologic Holiday theyoungestmuse 10/17/19 03:22 PM
I basically feel like I have just as many functional impairments while on biologics as off but they are just different. I too got a grace period of a few months where the stomach issues calmed down. My sister who is a nurse has suggested that I may get by with a lower dose than normal. She may be right.

On Simponi I got really weird dissociative symptoms. I depersonalized and derealized. I simply cannot tolerate the TNFi. I can tolerate IL17i but apparently they mess with my gut over time.

I am taking celecoxib 100mg every 36 hours, an over-the-counter version of Vascepa(EPA-fish-oil) and high dose vitamin A They are keeping things calm enough but I haven't felt healthy since I started biologics so yes I don't know what my next step is.
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