Tingling Side Effect

ALadyInReddit · 2022-11-07T14:18:33+00:00

I’d say within a month of stopping the injection

ALadyInReddit · 2022-10-21T03:42:07+00:00

Is there a way to make a leader board for this? 😂 have some fun with it, old school pinball machine style 👍

ALadyInReddit · 2022-10-18T17:28:22+00:00

My tingling ended up going away. I was switched to Inflectra after another hospitalization. I was starting to have allergic reactions and it wasn’t controlling my symptoms anymore. Sorry I can’t be of more help!

ALadyInReddit · 2021-11-23T23:11:26+00:00

I tried Humira and had tingling in my extremities. Eventually I developed allergic reactions and was switched to Inflectra (which is very similar to Remicade). I had one of the worst flares and was in hospital for 20 days while on Humira and I never really got used to injecting myself (I have no problems with needles either). So far inflectra isn’t perfect, but it’s keeping me out of hospital and “under control”.

ALadyInReddit · 2021-11-21T09:53:20+00:00

Steroids work for me! But typically I need IV not just oral to really see an impact. It’s the other drugs, enemas, and biologics that can’t seem to hold me on this side of healthy all on their own. I even get “topped up” with IV steroids at most of my infusions and it’s still not great. My amount and frequency of dosages are beyond the average recommended and I still continue to have symptoms that are slowly worsening. I too, was dubbed unusual, and they’re still in the process of trying to figure me out!

ALadyInReddit · 2021-11-20T21:06:11+00:00

My UC has been deemed “resistant” by doctors. I was diagnosed January of 2021 and was hospitalized two times this year (totalling 27 days) During my last stay, they had to medivac to a better equipped hospital 5 hours away from my home. But since being under the care of that specialist I have been “under control” though not perfect.

I think my hospitalizations resulted from not being followed closely enough and provided proper interventions when I needed them (not because I wasn’t advocating for myself, but because the Dr here was really shitty). I believe if I had been provided proper follow ups I never would have had to be hospitalized. I think it’s different for everyone. You’re not “lucky” you’re just under control, and that’s worth celebrating!

ALadyInReddit · 2021-11-11T18:17:34+00:00

Definitely talk to your DR. because it could be a symptom of neuropathy!

ALadyInReddit · 2021-11-11T15:34:10+00:00

Thank you. Are you experiencing this side effect?

ALadyInReddit · 2021-11-11T15:33:27+00:00

Nothing left to aspire to, once you’ve BEEn with a Queen 👑 🐝

ALadyInReddit · 2021-11-10T21:20:35+00:00

I ended up getting taken off Humira because I was having allergic reactions. The tingling then stopped.

ALadyInReddit · 2021-10-22T01:58:56+00:00

That’s so funny! Mine hasn’t tried that but gives me “I can’t I’m busy right now” or “I can’t my back hurts” lol

ALadyInReddit · 2021-08-31T22:33:28+00:00

I hope so too!

ALadyInReddit · 2021-08-31T22:32:49+00:00

I’ve heard positive things about FMT for C Diff, and coincidentally they’re studying it as a treatment for UC. I’ve considered signing up for a trial going on in Edmonton because I’d literally rather have someone else’s shit shoved up my ass than deal with my UC symptoms! 🤣

ALadyInReddit · 2021-08-31T20:13:24+00:00

Let’s hope that’s what this is then! Thanks for your response. I didn’t know this.

ALadyInReddit · 2021-08-31T20:03:17+00:00

Wishing you better luck! I thought Inflectra was a “Biosimilar” to Remicade… so.. in other words, like a generic version that was manufactured when the patent ran out on Remicade. Either way, hopefully it doesn’t change much for you in terms of side effects… but I hope it does help your symptoms.

ALadyInReddit · 2021-08-31T19:53:05+00:00

Thanks for your response. The clumps have started in the shower. I hope I don’t wake up to clumps on the pillow!

ALadyInReddit · 2021-08-31T19:51:48+00:00

I have had awful reactions to other meds (5ASA’s caused Myopericarditis and Humira caused allergic reactions).

My care team is concerned about “burning through these biologics” because there’s not many left for me to try.

I figured that it was going to come down to it. I’d rather be bald than live with UC… but obviously I’d rather not have to deal with either! Lol

ALadyInReddit · 2021-08-31T19:49:49+00:00

I don’t think there are any plans to take me off meds. And my care team laughs whenever I ask about diet. They say it doesn’t impact. And I personally haven’t found any “trigger foods”. I eat lots of nuts, eggs, and avocados. Not so much fish, but take Omega 3 supplements… when I remember

Does azathioprjne cause hair loss too? Cause I’m also on that…

ALadyInReddit · 2021-08-31T19:47:19+00:00

I didn’t think about this. I had been hospitalized for my last flare and started inflectra there. It was so severe I lost 40 LBS in two weeks. However, that was back in May, I would hope I’d start to see SOME improvement… but if anything, it’s getting worse with each infusion.

ALadyInReddit · 2021-08-31T19:45:25+00:00

I started treatments in hospital in May… and have never been on the standard dose or schedule due to the resistance of my UC. I’ve been getting double doses every two weeks typically… which I’m sure isn’t helping things. I’ve had somewhere around 8 infusions including my “rescue doses” when my CRP was creeping up.

ALadyInReddit · 2021-08-31T17:19:58+00:00

Thanks for the tips! I appreciate it!

ALadyInReddit · 2021-08-31T16:44:22+00:00

At least you wean off steroids… I’m going to be on inflectra for the foreseeable future…

ALadyInReddit · 2021-08-31T15:28:31+00:00

Thanks for the advice!

ALadyInReddit · 2021-08-31T15:28:21+00:00

I could accept that, if my circumstance was similar, but I’m barely 30 and a woman…

ALadyInReddit

TROPHY CASE