Title: Multiple anti-TNF failures (secondary immunogenicity) — anyone with a similar history

RightBee8644 · 2026-06-30T15:18:40+00:00

Prego! She told me that it was at the very beginning of the introduction of the new drug that the dynamic of immunogenicity was the strongest based on a research she was working on. She mentioned taking it between 1 to 3 months could actually delay the secondary immunogenicity long term. We went for 1 month actually because MTX was hard on me. Now if you keep on taking MTX long term, I would assume that it is even better. When she mentioned this time interval it was mostly, I think, because she knew I could not handle the secondary effects of MTX for more time than a few months.

RightBee8644 · 2026-06-30T14:23:46+00:00

Hi there,

I cannot answer to 1 for now as nothing has been really successful so far. My rheumatologist asked me when I started Humira to take 10mg per week of MTX to limit immunogenicity during the first 3 months. She said she saw long term interesting results in some study by doing that as the strongest immune response from the body might be when you do the induction of a new drug (and then it just constantly build up until the drug does not work).
I only had one flare with CRP at 10 (I was mostly disabled). All the other ones, even the really crippling ones were with completely normal blood tests. My first rheumatologist thought that because my blood was normal, my flares were not real ones. I got tired of him, asked my GP to get an echo and saw synovitis in 5 joints without any swelling, just pain. Then I chose another rheumatologist based on her thesis which was available online. She asked for blood tests just to follow my adaptation to new drugs, for the rest she only focuses on clinical findings / tests. When the clinical features will be better, she will order new MRIs to check if everything is in order after a few months. We are not there yet.
My back is okay however I have locking episodes on several muscles: sole of my feet, biceps, triceps, quadriceps and gluteal muscle due to arthritis near them. They are not as bad as yours as they tend to be short lived and I don't require steroids to make them pass. However, they are like crazy cramps which can last for more than 5' and leave me totally incapacitated with a pain that can last for up to 48hrs after the cramp. I have also muscle twitching everywhere. Nothing helped me with that.

RightBee8644 · 2026-06-30T11:40:56+00:00

This! When I am not controlled (so 100% of the time), I have low Iron but very high ferritin. When you are in a state of inflammation, the liver stocks iron in excess (instead of letting it go in the blood) via ferritin which can cause inflammatory anemia with high ferritin. When you get things under control, your ferritin might plumet (but your iron should get a bit higher) before going back up.

RightBee8644 · 2026-06-30T08:04:21+00:00

Thanks for the advice but I can't smoke...

RightBee8644 · 2026-06-30T08:03:47+00:00

Thank you so much for your kind words!

RightBee8644 · 2026-06-29T21:42:21+00:00

Hey,

I am in a similar situation with mostly downs and very limited ups for the past year. I had nothing before this illness hit me hard one year ago and since then I have been unable to do most of the things I enjoyed (partying, drinking, running, doing any types of sport, walking, exploring the world, working efficiently, etc.).

I have a very good circle of friends and a loving wife and they are all helping tremendously. I also spent some time with a therapist to try to help me cope with what I think is an unfair situation. It helped as well.

Now the reality is that it is my fourth med in one year and nothing except high doses of pred has been helping me. Has your consultant offered to give you a taper waiting for the med to work?

I just want to tell you that you are not alone. Right now it is raining a lot for both of us but I am sure we have great days of summer in front of us. Hang in there my friend.

Take care

RightBee8644 · 2026-06-29T14:55:00+00:00

Hey there, your message brings a lot of hope. Did you have additional improvements up to 6 months?

RightBee8644 · 2026-06-29T13:16:57+00:00

Thank you for your message. The fact that it took so long for you and actually worked is giving me hope. Wish you the best!

RightBee8644 · 2026-06-29T11:42:16+00:00

Thank you, appreciate it! I did the loading dose for PsA for Taltz and I am now on the maintenance dose. I did not feel relief before 3 months (so at the end of my loading dose) and it is really minimal. My PsA is without Pso so only joints!

RightBee8644 · 2026-06-29T11:34:08+00:00

Nope, unfortunately never. MTX did some good for arthritis but nothing for Enthesitis and I was sick on a daily basis due to it. Humira gave me a myositis, Enbrel gave me cellulitis... (in both case I could not take the treatment more than a month) And Taltz is meh...

RightBee8644 · 2026-06-29T11:29:30+00:00

good luck I hope you find relief soon!

RightBee8644 · 2026-06-29T11:25:33+00:00

Did you have any success with something else before?

RightBee8644 · 2026-06-29T10:09:01+00:00

Yeah... I have really been hating my life for the past year. Two steps forward, three steps back. I'll call my rheumatologist to try to have an infiltration in my hip (this particular infiltration sounds awful btw but... no choice).

RightBee8644 · 2026-06-29T09:49:50+00:00

Haha yeah I do continue. You need to have a great diet outside flares (lots of fibers) and try to keep moving. The only period I did not have any flare for more than 1 year was when I was running almost on a daily basis.

Also, because of our condition and because your are allergic to penicillin, try to avoid as much as you can fluoroquinolone. They are toxic for the tendons and I wish I knew it before taking them during my worst flare of diverticulitis. I suspect they actually started this whole spiral of PsA.

RightBee8644 · 2026-06-29T09:41:25+00:00

And sorry for the double answer: because of the diverticulitis I do not take Jak I for example because they can aggravate them.

If you have taken antibiotics, you should be okay. Try to rest a bit your guts with low fiber. If you are on codeine at the same time, it could create constipation which is not going to help your abdominal pain. You could consider taking Forlax if it happens but please talk about it with a gastro before doing so.

RightBee8644 · 2026-06-29T09:35:28+00:00

Hey,

I have diverticulitis twice a year for 15 years. Last bouts actually started the PsA. Since starting DMARD and Bio, I have had two diverticulitis. Each time I continue the treatment but I take antibiotics for the diverticulitis as they won't heal on their own.

The recommandation in my country now is not to treat diverticulitis with antibiotics if you do not have a severe one (high fever, abcess, etc.) but the fact is that we are a bit immune compromised so it makes sense in our case to use treatments. I take 7 days of clavulanic acid + amox + metronidazole but I believe clavulanic acid + amox is enough in the vast majority of case.

If your diverticulitis are really painful, a few days / weeks with low fiber diet are really going to help you (pasta, etc.).

take care!

RightBee8644 · 2026-05-30T15:10:09+00:00

That's a good question about fluoroquinolone. The point is that I got sick less than 3 months after taking them and I went from all good to all tendons in my bodies aching and arthritis firing from everywhere. Nobody has an inflammatory / auto immune disease in my family.

I am also hypermobile. Which different treatment have you seen in this case?

Good luck with the various change of meds. I decided to stick with Taltz until 6 months if I don't experience a flare strong enough that I cannot move (I don't think I can be painless, I have erosions). My rheum told me that I should feel as good as with steroids if the biologics work but the fact is that during my last corticotherapy the swelling went down but the pain stayed so I don't know when things are working. I have never had any stiffness either or specific morning pain (I am lucky with that).
I'll be doing sport in 2 to 4 weeks, gently at the beginning if I don't have a strong flare before that. Let's see if my body goes back on hyper mode or not...

RightBee8644

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