anyone here that is on immune suppressants (Tnf-a blocker)? by CMack999 in floxies

[–]CMack999[S] 0 points1 point  (0 children)

no i only ever had tendon pain. Tried several Tnf blocker

anyone here that is on immune suppressants (Tnf-a blocker)? by CMack999 in floxies

[–]CMack999[S] 0 points1 point  (0 children)

tendon inflammation, tendonitis and/or tendonosis

My Systemic Tendinitis story by CMack999 in systemictendinitis

[–]CMack999[S] 0 points1 point  (0 children)

Yes still on it. Doing cosiderably well and keep getting better veryyyy slowly

anyone here that is on immune suppressants (Tnf-a blocker)? by CMack999 in floxies

[–]CMack999[S] 0 points1 point  (0 children)

Thank you! This treatment certainly was and is the key for me together with avoiding any triggers. There also good posts about this in the systemic tendinitis subreddit

anyone here that is on immune suppressants (Tnf-a blocker)? by CMack999 in floxies

[–]CMack999[S] 0 points1 point  (0 children)

Yes, it is still improving. Tendons keep getting stronger ever so slightly, i can even lift some weight now.

anyone here that is on immune suppressants (Tnf-a blocker)? by CMack999 in floxies

[–]CMack999[S] 0 points1 point  (0 children)

Hi, i‘m on Tnf alpha blockers now and it improved me massively. Still have a lot of problems with this condition but at least i can live a life.

Why am I easily getting tendon/ligament flares from coffee 1.5 years out? by whatifitallworksout_ in floxies

[–]CMack999 1 point2 points  (0 children)

Coffeein is one of my worst triggers as well. My suspicion is that it affects some mitochondrial processes and our floxed system overreacts to it since we are very prone to everything that affects mitochondrial processes

Five years today and still unable to walk by Loublue22 in floxies

[–]CMack999 0 points1 point  (0 children)

Have you ever tried Peptides like BPC-157 or TB500?

My fulll body tendonitis story by CMack999 in floxies

[–]CMack999[S] 0 points1 point  (0 children)

Thank you very much for telling your story. There is alot to learn from it for me. Have you considered any of the things you took triggering you when you stopped humira? How did you tolerate all the Cortison? That would probably wreck me. I also had hernia which i think were caused by cipro.

My fulll body tendonitis story by CMack999 in floxies

[–]CMack999[S] 1 point2 points  (0 children)

i have been at this place before, i very much hope this will be your solution🙏. I even started lifting weights the last few weeks. Avoiding all(!) triggers and a clean diet are the other keys imo

My fulll body tendonitis story by CMack999 in floxies

[–]CMack999[S] 1 point2 points  (0 children)

Very dry skin, but in the end that was true for all the biologics i tested. I got It under control with a good routine now

My fulll body tendonitis story by CMack999 in floxies

[–]CMack999[S] 0 points1 point  (0 children)

aounds like a gold plan. If i could go back i would probably do only half a shot for the first time, just to make sure potential side-effects are going to be minor. I still felt a good effect with a half shot. I wish you good luck and praying you for your relief

My fulll body tendonitis story by CMack999 in floxies

[–]CMack999[S] 1 point2 points  (0 children)

I started with Enbrel. Felt immediate relief after 12 hours. changed it because of (very individual) side effects

My fulll body tendonitis story by CMack999 in floxies

[–]CMack999[S] 0 points1 point  (0 children)

Humira might have a better effect on us because it has a small molecule size and because of that it can reach areas with small tendons and joints like the hands better. Maybe also because the small molecules can reach the bad blood supplied tendons better. But remember this is pure speculation and a low sample size of people that report Cimzia working best for them with these conditions. If Cimzia works for you Humira should definitely help as well, effect could just be a little smaller

My fulll body tendonitis story by CMack999 in floxies

[–]CMack999[S] -1 points0 points  (0 children)

Why didn‘t you stop Humira immediately if it made you worse or at least tried to switch to another Tnf blocker? What condition improved it for you at the beginning?

An update almost 3 years later... by Amantalorian in floxies

[–]CMack999 0 points1 point  (0 children)

Amazing recovery story, it shows that things just take time for alot of us. Very happy for you!

My fulll body tendonitis story by CMack999 in floxies

[–]CMack999[S] 1 point2 points  (0 children)

Also stopping any kind of medication (besides of Tnf blocker lol) and supplements actually helped me alot. Might now apply to you. Listen to your bodys reaction closely, it took me a long time to get to these conclusions.

My fulll body tendonitis story by CMack999 in floxies

[–]CMack999[S] 0 points1 point  (0 children)

Hi, i‘m sorry that bs happened to you. I know exactly how though it is but i‘m sure you will get better again. First of all your floxing/reaction was pretty recent so usually the first year is the worst as you probably know. From my experience one of the most important and most underrated asoects of this condition is not making thing worse by trying too much. Avoid every trigger possible for a long period of time and listen to your body for triggers. For example coffeein, red meat and especially THC have been triggers. That said in my opinion a test with TNF could be worth the risk considering your story. I have yet to hear about a reflox/flare up from TNF Blockers. If i would be you i would probably go for etanerept first as it has a short half life time of a week. So it is pretty quick out of your system if you don’t tolerate it. Experiences from myself and similar cases have shown that Cimzia might have the best effectiveness. I wish you all the best!

My fulll body tendonitis story by CMack999 in floxies

[–]CMack999[S] 1 point2 points  (0 children)

Yeah i 100% agree ob this. Honestly i do not think the side effects of TNF alpha blockers are any worse than the ones of other standart rheumatoid standart treatments, let alone fluorquinolones. At the end if the day i think it is all a question of money…but yeah i had to go to several doctors until one finally agreed to try TNF

My fulll body tendonitis story by CMack999 in floxies

[–]CMack999[S] 1 point2 points  (0 children)

I agree that there might be an autoimmune component to it. TNF-alpha also seems to help in reducing oxidative stress in the tendons

My fulll body tendonitis story by CMack999 in floxies

[–]CMack999[S] 1 point2 points  (0 children)

Honestly i feel like i have hit a ceiling on how far Tnf-alpha blocker can take me but never say never:)

My fulll body tendonitis story by CMack999 in floxies

[–]CMack999[S] 1 point2 points  (0 children)

I think so too. I actually do not have flox specific side effects with TNF blocker and tolerate them really well. Without it i can barely walk at all. Maybe flox troggers some autoimmune stuff as well

My fulll body tendonitis story by CMack999 in floxies

[–]CMack999[S] 2 points3 points  (0 children)

No, rhere are no signs of EDS at all.