1. < Autoimmune Diseases

Biologics side affects

Posted by dokahi52 @dokahi52, Jan 23, 2023

I cannot take Entyvio due to massive swelling. Humira is ineffective. But my immune system is now shot due to over a year of taking Humira. Interested in side effects of biologics. I’m thinking of quitting them as they appear to be more harmful than good. Crohns does not affect me too much as long as I watch my diet. Fatigue being an issue at 70 y/o.

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marcy1344 | @marcy1344 | Jan 31, 2023
In reply to @nanabear "Looking for comments on Entyvio side effects. I have ulcerative colitis brought on by surgery to..." + (show)
@nanabear

Looking for comments on Entyvio side effects. I have ulcerative colitis brought on by surgery to remove part of my colon due to a sigmoid stricture. After 2 years of treating symptoms and not getting much in the way of results I was put on Entyvio after a month long flare in early Fall. I finished my 3 "loading doses" 2 weeks apart at the end of DEC. It has solved all my problems! I then developed bronchitis a week later which progressed to vision symptoms including eyeball pain when moving them and then different versions of aural migraines w/no pain in a 2 week period. Got another one 2 days ago that has not gone away - going on 36 hours now. Spent yesterday in the ER being worked up for a stroke. CT scan, blood work, EKG showed no problems. They called in an ophthalmologist who said it was migraine, looked up ENTYVIO and said it's a side effect ....anyone have any similar experience? I'm a newbie - 79 yr old female in the care of a Gastro Dr as well as an ophthalmologist as I am scheduled for cataract surgery in one month. Bronchitis and vision problems are both listed in ENTYVIO side effects

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Hi I have crohns/colitis I was on Entyvio too but came off it bad side effects as well. I had constant headache especially with light or the sunshine I had to wear sunglasses all the time.One of my eye's was red like bloodshot and progressed worse as time went on.I went to hospital and they said it was uveitis it can come with crohns as it's autoimmune. I am still getting flair ups using steroids in my eye to clear it.I never had uveitis before I went on entyvio I think it's a side effect I am left with. I am waiting to start a new biologic now I'm not having much luck with any at the moment I have been on a good few.Humira,remicade, the only thing that seems to be working for me is steroids unfortunately.

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sllee | @sllee | Jan 31, 2023
In reply to @mercyreigns "I have a diagnosis of psoriatic arthritis. I was on methotrexate and had lots side effects...." + (show)
@mercyreigns

I have a diagnosis of psoriatic arthritis. I was on methotrexate and had lots side effects. hair loss yeast infections then i was on humira shots.. so so ill pneumonia cysts not good. i dont take anything but natural and cbd oil and cream does help for swelling days.

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I didn’t treat my spondylitis for about eight years; one, I had a scare with CMV and hospital stay; and two, my Rheumatologist retired and finding a new one that would accept his diagnosis was nil. Now I am paying for it with full spinal damage. Even though the methotrexate and hydroxychloroquine have my inflammatory numbers completely down I hurt from the damage done those years. I hope you can find something that will work for you and slow the progression.

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2 replies
DadCue | @dadcue | Jan 31, 2023
In reply to @sllee "I didn’t treat my spondylitis for about eight years; one, I had a scare with CMV..." + (show)
@sllee

I didn’t treat my spondylitis for about eight years; one, I had a scare with CMV and hospital stay; and two, my Rheumatologist retired and finding a new one that would accept his diagnosis was nil. Now I am paying for it with full spinal damage. Even though the methotrexate and hydroxychloroquine have my inflammatory numbers completely down I hurt from the damage done those years. I hope you can find something that will work for you and slow the progression.

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I'm in the same boat. I was diagnosed with spondylitis about 30 years ago. I also had an aggressive type of uveitis along with spondylitis. My ophthalmologist treated the uveitis aggressively with high dose prednisone whenever it flared. I always had leftover prednisone on hand to treat the pain caused by flares of reactive arthritis.

I never saw a rheumatologist until 15 years ago when I was diagnosed with PMR in addition to spondylitis. I needed to take about 40 mg of prednisone daily for the first few years to keep all my autoimmune conditions quiet.

About 4 years ago when I was unable to taper off prednisone, a biologic called Actemra (tocilizumab) was tried. I was then able to taper off prednisone and now everything is being managed with Actemra. I have taken Actemra for 4 years and haven't had any serious side effects while taking Actemra.

Prednisone managed the pain reasonably well. Unfortunately, prednisone didn't prevent the inflammatory damage. My lumbar spine is now a disaster zone. I'm seeing a neurosurgeon tomorrow to discuss a lumbar fusion. The surgeon has said that an MRI shows that the nerve roots from my lumbar spine are being "crushed." I have a fair amount of nerve damage to go with everything else.

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mercyreigns | @mercyreigns | Jan 31, 2023
In reply to @sllee "I didn’t treat my spondylitis for about eight years; one, I had a scare with CMV..." + (show)
@sllee

I didn’t treat my spondylitis for about eight years; one, I had a scare with CMV and hospital stay; and two, my Rheumatologist retired and finding a new one that would accept his diagnosis was nil. Now I am paying for it with full spinal damage. Even though the methotrexate and hydroxychloroquine have my inflammatory numbers completely down I hurt from the damage done those years. I hope you can find something that will work for you and slow the progression.

Jump to this post

Hello.. For one I know as a believer in Jesus Christ He alone can heal me.. I believe God does use medications. He alone sets the stage .. For me any biologic didnt work and honestly i take natural remedies.. I pray daily walk and watch my diet.. I know many that take medications and they have alot of other conditions, which I believe are side effects of the meds.. I know in my heart God will heal me with the natural and my cooperation in diet, exercise.. Im not dissing anyone who takes medications. I was in bed with pneumonia when i was on biologics. I have had pneumonia 4 times.. I am presently recovering from covid pneumonia from Jan 2020.. I have long haul and some days i just dont feel good.. So I pray you are healed and find the right cure. For me my faith is.. Jesus can only heal me.. Thanks for the reply.

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