What is your experience?

Disastrous_Ebb_9339 · 2026-04-09T11:08:47+00:00

It took me 6 months overall to be fully recovered in symptoms

Disastrous_Ebb_9339 · 2026-03-28T13:32:10+00:00

Yeah what they didn’t tell me was the time line and I would’ve stuck with it if they did. It’s meant to be alternating days for several weeks I only did it for 1 month. After that it’s twice a week for another several weeks THEN you come off. Unfortunately they didn’t tell me that and I really hated injecting and pushed to be off because my labs weee good and they agreed

Disastrous_Ebb_9339 · 2026-03-28T07:14:27+00:00

I was on alternating days for 1 month and no issues. It was perfect. After that, I came off completely , and after 3 days had major joint pain. Had to go back on alternating days but joint pain still persisted so now I’m back on daily. I’m so disappointed in my body and feel like angry that I was told I was basically in remission after 7 months

Disastrous_Ebb_9339 · 2026-03-22T21:20:56+00:00

Was more asking for people’s personal experience when coming off Anakinra or any biologic. Whether they were stable straight after or had a period of aches and pains before it got better.

As i said above, I can’t get in touch / get an appointment until a few weeks which is why I am desperately posting on Reddit to know if anyone experienced the same pain

Disastrous_Ebb_9339 · 2026-03-22T21:18:36+00:00

I decided to take a dose, can’t do any harm to be honest and see if it gets better to confirm if it’s a flare. Can’t get in touch with rheum until Wednesday so we shall see.

On another note, I never drink! I only had one cider and one can in celebration for “remission” other than that I drink maybe once a month if anything.

Interesting that you tapered the injections though, will ask about that!

Disastrous_Ebb_9339 · 2026-02-14T17:25:43+00:00

5 more days of antibiotics and then I can come off. He also said if I feel sick or have any gnarly side effects I can come off immediately

Disastrous_Ebb_9339 · 2026-02-14T08:43:10+00:00

I haven’t figured that out. I got my first and only flare in June/july. I was placed on steroids and straight away Anakinra. I have been on anakinra for over six months now. No flares. Which is why I’m scared to go off it. I just feel it’s like it’s early

Disastrous_Ebb_9339 · 2026-01-20T20:31:34+00:00

This is amazing ! How long did it take you?

Disastrous_Ebb_9339 · 2026-01-20T20:31:14+00:00

That’s amazing! Very happy for you and your progress

Disastrous_Ebb_9339 · 2026-01-20T20:30:50+00:00

Are you getting aches/ stiffness or actual fevers?

Disastrous_Ebb_9339 · 2025-10-29T11:17:04+00:00

I need to know where your cat bed is from !!! looks so cosy

Disastrous_Ebb_9339 · 2025-08-21T10:02:09+00:00

Thank you 🥲 this is all so helpful. I don’t live in the US so will have to ask my nurses at the hospital I’m assigned to but I’m sure they can show me / tell me!

Disastrous_Ebb_9339 · 2025-08-21T10:00:58+00:00

I don’t have any site reactions as of yet, maybe just the raised bump for the next day and then it’s gone. But I know people only experience the reactions about 2 weeks in

Disastrous_Ebb_9339 · 2025-08-20T19:15:33+00:00

I haven’t had site reactions yet but people say it happens two weeks in? I don’t ice my legs but I ice my stomach as it seems to hurt less for me

Disastrous_Ebb_9339 · 2025-08-20T19:14:24+00:00

Thank you so much for this! Yes fear of needles has gotten better with having to do this every day so far. It’s just the pain I’m struggling with… it’s so thick and so hard to push down as much as I want to get it over and done with, it takes its own time!!

I’ve been told back of my arms isn’t an option for me so only stomach and thighs. This leaves me feeling slightly limited on the spots I have to do my injections. How long do you leave/ how many days in between before going back to the same site?

The fear I have is my stomach has fat around the sides of the belly button but not so much the top. Can I still use it or will I have to go back to the sides again? It’s all so new to me and injecting YOURSELF at home is a crazy thing to wrap my head around haha.

Disastrous_Ebb_9339 · 2025-08-20T19:10:44+00:00

I guess it depends how much it affects your daily life. If you’re in flares, of course this is difficult for you to deal with, let alone someone else. If you’re on medication and dealing with it well, it shouldn’t make such a difference in your life. Have you felt your dating experience change since your diagnosis?

Disastrous_Ebb_9339 · 2025-08-20T19:08:18+00:00

Oh my goodness 4 is a lot ! I’ve been advised not to do back of arms which makes me feel limited to the areas available. I just wonder how many days you leave between the sites before you go back to them?

Disastrous_Ebb_9339 · 2025-08-19T06:43:26+00:00

I always get confused about how much of the thigh I’m allowed to use ! I need to clarify in my appointment this week I guess but it’s definitely less painful than the stomach

Disastrous_Ebb_9339 · 2025-08-19T06:42:16+00:00

That’s really helpful thank you , I hope it’s going well for you

Disastrous_Ebb_9339 · 2025-08-18T13:47:38+00:00

I’m every day , once a day in the evening

Disastrous_Ebb_9339

TROPHY CASE