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Biologic caused infections

Posted by apopson @apopson, Dec 12, 2023

Recently hospitalized 3 times. Each time for a week. Infection in hand that extended to elbows.
A week later infection in knee then left rib area that is very painful. Infection control physician said may need to remove the fluid from this area. All of these infection areas are on left side. Dr said from biologic
Has been on Vancomycin for almost a month.
Has anyone experienced this from the biologic
depressing there immune system. He stopped it 6 weeks ago.

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apopson | @apopson | Dec 17, 2023
In reply to @rashida "Has anyone had any experiences with Otezla? I will be starting on it as soon as..." + (show)
@rashida

Has anyone had any experiences with Otezla? I will be starting on it as soon as my government (Ontario) plan approves it for my scalp psoriasis. Been on two biologics before - first, Stelara and the Skyrizi - and neither helped. I asked to go on Otezla because I was tired of injections and because it seems lesser of all evils where side effects are concerned. It also can be taken orally. I have fatty liver disease and unfortunately there is no oral medication I can take that won’t affect my liver.

I was on Methotrexate for about three or four years and it worked great - cleared all psoriasis - but I was told I couldn’t continue taking it because of my FLD history. As soon as I started tapering off it, my psoriasis returned, then returned with a vengeance once I came off Methotrexate completely. I went on the biologics (first Stelara, then Skyrizi) and they have done nothing for me. I also have Lichen Planus and Lichen Sclerosis, and apparently Otezla clears that also, which is why I chose to go on this biologic, but I still am worried about the other side effects.

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Prayers that it will work for you with no bad side effects

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1 reply
rashida | @rashida | Dec 17, 2023
In reply to @apopson "Prayers that it will work for you with no bad side effects" + (show)
@apopson

Prayers that it will work for you with no bad side effects

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@apopson thank you.

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Linda Moross | @lmoross | Dec 18, 2023
In reply to @dadcue "My question was going to be how many IVs were restarted before a central line was..." + (show)
@dadcue

My question was going to be how many IVs were restarted before a central line was placed. I didn't want to assume anything but weeks of vancomycin is tough! Not fun for the nurses either.

So Actemra is stopped ... are you back on prednisone? I'm not a fan of prednisone either because it nearly killed me. I was in intensive care for a few days.

I have stopped Actemra twice but I didn't do so well. I keep telling my rheumatologist that I'm willing to stop Actemra again just to see what happens. Three times is a charm they say.

Anyway ... I'm extremely sorry you had to go through all of that!

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At least 3-4 were started before the central line. No actemra and no prednisone. I actually believe the PMR is gone. At least I hope so. My recent SED and CRP are elevated some, but I don’t feel typical PMR symptoms. I think it may due to some leftover pleural effusion from the pneumonia.
I was on Actemra for a year before stopping. I had tapered very slowly off prednisone after starting the biologic.
I had PMR for five years and was told by a university of Iowa doctor that it usually “disappears” in 1-5 years. Fingers crossed.
Hoping the same for you. Freedom from the disease and all associated medications.

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2 replies
DadCue | @dadcue | Dec 19, 2023
In reply to @lmoross "At least 3-4 were started before the central line. No actemra and no prednisone. I actually..." + (show)
@lmoross

At least 3-4 were started before the central line. No actemra and no prednisone. I actually believe the PMR is gone. At least I hope so. My recent SED and CRP are elevated some, but I don’t feel typical PMR symptoms. I think it may due to some leftover pleural effusion from the pneumonia.
I was on Actemra for a year before stopping. I had tapered very slowly off prednisone after starting the biologic.
I had PMR for five years and was told by a university of Iowa doctor that it usually “disappears” in 1-5 years. Fingers crossed.
Hoping the same for you. Freedom from the disease and all associated medications.

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Do you know Dr. Tuetken? She was my rheumatologist at the University of Iowa for 15 years. I could still message her for advice and she would respond. I haven't seen her in a few years because I'm now going to the VA hospital across the street from the University. Dr Teutken saved me when PMR was diagnosed. I had many problems that cropped up after PMR was diagnosed.

I really think I can stop Actemra. I believe PMR is gone too. I had a couple of "interruptions" when Actemra was stopped but it was restarted. I didn't do well when Actemra was stopped. Now there seems to be a reluctance to ever stop Actemra.

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3 replies
apopson | @apopson | Dec 19, 2023
In reply to @lmoross "At least 3-4 were started before the central line. No actemra and no prednisone. I actually..." + (show)
@lmoross

At least 3-4 were started before the central line. No actemra and no prednisone. I actually believe the PMR is gone. At least I hope so. My recent SED and CRP are elevated some, but I don’t feel typical PMR symptoms. I think it may due to some leftover pleural effusion from the pneumonia.
I was on Actemra for a year before stopping. I had tapered very slowly off prednisone after starting the biologic.
I had PMR for five years and was told by a university of Iowa doctor that it usually “disappears” in 1-5 years. Fingers crossed.
Hoping the same for you. Freedom from the disease and all associated medications.

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Thank you and same to you.

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apopson | @apopson | Dec 19, 2023
In reply to @dadcue "Do you know Dr. Tuetken? She was my rheumatologist at the University of Iowa for 15..." + (show)
@dadcue

Do you know Dr. Tuetken? She was my rheumatologist at the University of Iowa for 15 years. I could still message her for advice and she would respond. I haven't seen her in a few years because I'm now going to the VA hospital across the street from the University. Dr Teutken saved me when PMR was diagnosed. I had many problems that cropped up after PMR was diagnosed.

I really think I can stop Actemra. I believe PMR is gone too. I had a couple of "interruptions" when Actemra was stopped but it was restarted. I didn't do well when Actemra was stopped. Now there seems to be a reluctance to ever stop Actemra.

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I di not know hər as I live in Pa.

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Linda Moross | @lmoross | Dec 19, 2023
In reply to @dadcue "Do you know Dr. Tuetken? She was my rheumatologist at the University of Iowa for 15..." + (show)
@dadcue

Do you know Dr. Tuetken? She was my rheumatologist at the University of Iowa for 15 years. I could still message her for advice and she would respond. I haven't seen her in a few years because I'm now going to the VA hospital across the street from the University. Dr Teutken saved me when PMR was diagnosed. I had many problems that cropped up after PMR was diagnosed.

I really think I can stop Actemra. I believe PMR is gone too. I had a couple of "interruptions" when Actemra was stopped but it was restarted. I didn't do well when Actemra was stopped. Now there seems to be a reluctance to ever stop Actemra.

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I had Dr. Scott Volgesang. Very nice man with a sense of humor that I also appreciate. He was the mentor for my local rheumatologist. I went to him for confirmation of PMR. I also had it confirmed at Mayo. They both believed my current rheumatologist is following the correct treatment plan.
Going off Actemra might be a good choice for you. I don’t believe I will ever do a biologic again. It changed my life forever in a negative way by the suppression of my immune system.

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2 replies
apopson | @apopson | Dec 19, 2023
In reply to @lmoross "I had Dr. Scott Volgesang. Very nice man with a sense of humor that I also..." + (show)
@lmoross

I had Dr. Scott Volgesang. Very nice man with a sense of humor that I also appreciate. He was the mentor for my local rheumatologist. I went to him for confirmation of PMR. I also had it confirmed at Mayo. They both believed my current rheumatologist is following the correct treatment plan.
Going off Actemra might be a good choice for you. I don’t believe I will ever do a biologic again. It changed my life forever in a negative way by the suppression of my immune system.

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I feel the same. No more biologics.

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1 reply
DadCue | @dadcue | Dec 19, 2023
In reply to @lmoross "I had Dr. Scott Volgesang. Very nice man with a sense of humor that I also..." + (show)
@lmoross

I had Dr. Scott Volgesang. Very nice man with a sense of humor that I also appreciate. He was the mentor for my local rheumatologist. I went to him for confirmation of PMR. I also had it confirmed at Mayo. They both believed my current rheumatologist is following the correct treatment plan.
Going off Actemra might be a good choice for you. I don’t believe I will ever do a biologic again. It changed my life forever in a negative way by the suppression of my immune system.

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I know Dr. Vogelgesang. I actually saw him long before I was diagnosed with PMR. I was diagnosed with reactive arthritis but it wasn't causing any problems.

I also had advanced degenerative arthritis in my right knee caused by a sports injury and knee surgery as a teenager. I was just wanting to "establish care" at UIHC but I wasn't having any difficulty at the time. I started having problems a few years later but I didn't reestablish care in rheumatology. That was a big mistake on my part. I should have went back much sooner than I did.

Dr Volgelgesang did have a good sense of humor. My knee was hurting more than anything. He said at 35 years old, I was too young to have a knee replacement. He said there wasn't much else that could be done except for NSAIDs. Then he asked one of the residents what was the "flavor of the month" for NSAIDs.

I saw him occasionally after that visit but not as a patient. He would always ask me how I was doing. I didn't tell him about my problems because I didn't think I was having a rheumatology problem. I was just having recurrent flares of uveitis and my ophthalmologist was treating flares of uveitis with prednisone. I was self medicating with left over prednisone which worked well for all the additional pain I was having. My knee wasn't hurting at all.

I didn't reestablish care in rheumatology until I was 52 years old when PMR was diagnosed in addition to reactive arthritis and uveitis.

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DadCue | @dadcue | Dec 19, 2023
In reply to @apopson "I feel the same. No more biologics." + (show)
@apopson

I feel the same. No more biologics.

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I want to stop my biologic too.

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