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Humira - how immunocompromised are you?

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Posted 1/27/2022 12:12 PM (GMT -8)
Been on Humira 8 months. I worry about INFECTION constantly. Actually, the worry has taken over my life. Shoulder pain? “SEPTIC SHOULDER!” Hip pain? “SEPTIC HIP!” Wrist pain? “SEPTIC WRIST!” Had a tooth pulled. “INFECTED TOOTH SOCKET!!” Feeling kinda’ rundown? “SEPSIS!!!”

My mind is a terrible place to be. Constantly taking my temperature for the “tell-tell” sign of infection.

Don’t even mention covid. Haven’t seen another human being in a year lol.

What I wanna know is….”Just how immunocompromising is this stuff?”

My brother-in-law law is fighting cancer. (Chemo). They had family in for Christmas. Didn’t seem to bother him. Never got sick (none did).

Is Humira as bad as chemo? Diabetes? HIV? Just where on the scale does this drug fall in comparison to…say…other illnesses and things that cause one’s immune system to be compromised?

I’ll go out on a limb here. I just read where close to half of the covid deaths involved diabetes. I have to believe…very few covid deaths have been attributed to Humira for UC. (If any, at least appreciably so).

Where on the continuum of “”Immunocomprosed” does Humira for UC put one?

Thanks /rant lol
Posted 1/27/2022 1:00 PM (GMT -8)
Island Time, in the past I was on Remicade every 4 weeks, then on to Humira. Of course, we weren't dealing with the virus back then either. However, if you read about these drugs like many others, you will see the disclaimer that says it may lower the immune system, that does not mean it will happen. This is their way of CYA routine. We have a very good friend that is a transplant patient, the medication he takes is a much, much higher than what an IBD patient takes. He is careful but does not live in constant fear.

There was an earlier study showing some biologics gave a little edge in preventing catching the virus along with the shots. I haven't seen the study in quite some time, so I'm not sure where they are at now.

If I remember right you are in remission, enjoy it. Look for ways to distract your mind, mindfullness is good but it takes a lot of practice. If you can't rein in the negative thoughts, get some talk therapy going, life is just too short.
Posted 1/27/2022 1:10 PM (GMT -8)
Here's some info about how IBD patients on various medications have fared with Covid -- scroll down to see the data on meds. Looks like people on anti-tnf meds like humira & remicade had the least number of hospitalizations and deaths

https://covidibd.org/current-data/
Posted 1/27/2022 1:14 PM (GMT -8)
Humira can actually help fight off covid infections.

I haven't gotten sick any more frequently since I started on the biologic route back in 2019 or since I've been on Xeljanz since last June. I haven't even gotten a cold since before covid started. I'm not around a lot of people, but I do see my boyfriend and he works around lots of people. I've gone into gas stations and quick trips into stores without a mask on the past several months, too, although I still wear one most the time if I'm going to be in there for long. I eat a fairly healthy vegan diet, and I'm sure that helps my immune system quite a bit.
Posted 1/27/2022 3:07 PM (GMT -8)
Well, got a project done since posting. First time my mind has been clear in probably a month.

@Straydog…you remembered correctly. I am in remission. Stress seems to manifest itself physically with me (I’m just a very “sensitive” person lol). Really, stress has done this to me most of my entire adult life. Throw this Humira in there and you’ll see me off to the races with every ache and pain a 63 year man can have. I don’t want to ask this (but, it’s a part of facing my demons)…didn’t you say one time that you had a septic hip while on Humira? And you had to get off of it because of that? Do you think Humira played a role in that?

@CC….Thanks for the tables CC. I had bookmarked that site months ago but had thought they had quit keeping it current. It’s good to see it’s still there. Comforting as well. Thanks!

@Sara…It’s so refreshing to see that your signature says that you are in remission!! I had a bit of a respiratory infection during my loading Humira doses. My thinking is…that really colored the way I’ve been viewing this drug. I haven’t been sick since. This has been between my ears…that’s where 80% of my problems are found!


My therapist is on speed dial. Spoke with her earlier. She says…”You’ve been dying of something ever since I’ve known you!” Lol.

Back door lock repaired. Getting out and walking clears my brain. For what ever reason…and I’m not sure what that reason is…but, for whatever reason, it takes me getting MAD before I can leave something like this behind and begin to do things that are good for my thought processes.

…and that’s where I am.
Posted 1/27/2022 4:07 PM (GMT -8)

island time said...
Been on Humira 8 months. I worry about INFECTION constantly. Actually, the worry has taken over my life. Shoulder pain? “SEPTIC SHOULDER!” Hip pain? “SEPTIC HIP!” Wrist pain? “SEPTIC WRIST!” Had a tooth pulled. “INFECTED TOOTH SOCKET!!” Feeling kinda’ rundown? “SEPSIS!!!”

My mind is a terrible place to be. Constantly taking my temperature for the “tell-tell” sign of infection.

Don’t even mention covid. Haven’t seen another human being in a year lol.

What I wanna know is….”Just how immunocompromising is this stuff?”

My brother-in-law law is fighting cancer. (Chemo). They had family in for Christmas. Didn’t seem to bother him. Never got sick (none did).

Is Humira as bad as chemo? Diabetes? HIV? Just where on the scale does this drug fall in comparison to…say…other illnesses and things that cause one’s immune system to be compromised?

I’ll go out on a limb here. I just read where close to half of the covid deaths involved diabetes. I have to believe…very few covid deaths have been attributed to Humira for UC. (If any, at least appreciably so).

Where on the continuum of “”Immunocomprosed” does Humira for UC put one?

Thanks /rant lol

I started Humira 2 months before COVID. Every time I read something about COVID it say except if you are immunocompromised… occasionally I see severely immunocompromised. So I have the same question as you. I am a teacher and our school requires masks and I wear a kn95 but I definitely am not out and about like a lot of my friends because I don’t know the answer to your question.
Posted 1/27/2022 5:25 PM (GMT -8)
Trust me, I COMPLETELY understand. It's understandable to be scared of these meds and also for all of us to have health anxiety, AND we can still work towards building lives worth living and taking actions based on our values despite those fears. Glad you got out for that walk.

And thank you, remission sure is sweet relief. You'll be ok.
Posted 1/27/2022 5:34 PM (GMT -8)
Island Time, nope it wasn't me that had a hip infection. I never got sick while on either drug, if anything I was healthier. Until I got on Remicade, it seemed like every other month I was in the hospital. While I live in a very large metroplex, I had lousy gi drs. A nurse friend told me about my gi & he practices about 35 miles from my home in a small town, he's worth every mile too. They had a small town hospital, everybody knew everybody. I had to do a lot of walking to get to the infusion room, was possibly exposed to who knows what, but never got sick while going for infusions. At first I got a little paranoid, but that went away.

I had to laugh at what your therapist said about you always dying from something. I had a great therapist & she ended up moving out of state. I was with her almost 2 years & I learned a lot from her. I still use a lot of the things she recommended to this day. I'm 67, so I hope I will be able to remember these things for a long time, lol.
Posted 2/5/2022 2:40 AM (GMT -8)
This is me right now waiting on entyvio. My GI said he’s never had a patient on biologics or immunosuppressants get sick or infections on either. I’ve also just read entyvio patients did not have an increased risks of post operative infections for non intestinal surgeries
Posted 2/5/2022 6:09 AM (GMT -8)
I agree with stray dog with enjoy remission and life is short. I decided that if I’m going to be on a biologic I might as well enjoy my life as much as possible. I take lexapro for my anxiety and it has improved my gut and my mind. I had severe anxiety on Humira as a side effect so not sure if that is happening to you. I had the Delta variant last August and recovered without respiratory issues . My whole family had omicron and I didn’t get it. I’m vaxed and boosted … not much more I can do but not going to waste this remission that’s for sure . The only people I know who were hospitalized were not vaxed at all.
Posted 2/5/2022 11:46 PM (GMT -8)

Sara14 said...
Trust me, I COMPLETELY understand. It's understandable to be scared of these meds and also for all of us to have health anxiety, AND we can still work towards building lives worth living and taking actions based on our values despite those fears. Glad you got out for that walk.

And thank you, remission sure is sweet relief. You'll be ok.


Hi Sara I read your bio said finally off steroids? Was it difficult? Im down to 10mg on my second taper and feeling nervous
Posted 2/6/2022 4:29 AM (GMT -8)
Hi. I am on Remicade. I have had Sepsis 3 times now. The worse one for me was prior to being on Remicade.

The first time I was very Ill. I had not been diagnosed with UC/Crohn's yet. I was going to the bathroom 30 times a day and suddenly one day I just could not get out of bed. I had been going to a GI but bloodwork and biopsy was normal. It was only when I had sepsis and was in the hospital for 10 days that it was diagnosed as UC

The last 2 we caught it very early and I did fine. It is scarey though. I have a fistula that was dumping "mucus" by my urethra and it caused a UTI. I developed kidney cramps, went in for that and suddenly I was staying. No idea that I was septic. No fever...just plummeting blood pressure and I was freezing cold.

I understand your fear. I was like that too. Looking at my aches and pains, seeing sepsis lurking everywhere. The times I least expected it was when it happened.

So I dunno... I do agree with everyone else. If you are fixated on it I would talk to someone. Life is short. Remicade continues to help me so for me...it's the right thing to do.

On your Prednisone. A slow taper always works better for me..I also have to remind myself that Prednisone makes me very anxious and periodically I have to get "talked down" from a near panic attack while on it.

Good luck.

Clo
Posted 2/6/2022 7:04 AM (GMT -8)
Theanxiousiaries: I was only able to get off steroids last year without UC symptoms returning after I started Xeljanz. Took 9 weeks on Xeljanz and I was in symptomatic remission. I was stuck on steroids for most of 2+ years. A lot of that was budesonide but lots of courses of pred, too. Good luck, hope you can get off them soon!
Posted 2/6/2022 8:19 PM (GMT -8)

Sara14 said...
Theanxiousiaries: I was only able to get off steroids last year without UC symptoms returning after I started Xeljanz. Took 9 weeks on Xeljanz and I was in symptomatic remission. I was stuck on steroids for most of 2+ years. A lot of that was budesonide but lots of courses of pred, too. Good luck, hope you can get off them soon!

. Thanks Sara I was referring more towards the pred withdrawals. I’m feeling very depressed at 10mg
Posted 2/7/2022 11:35 AM (GMT -8)
Sorry to hear that. I commented on your other post. That should go away a week or so after you're off it completely. Unfortunately, it can suck in the meantime. You were on a crazy high dose, too.
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