Humira Infections -- how do you handle each infection?

Posted by happilyalive @happilyalive, Jul 17 8:45pm

Hi, My Rheumatologist is preparing to put me on Humira and has warned me that infections may happen often. I also have hypertension, Anemia,Ckd, Diabetes, AS and PSA. I am searching for tips, advice or even what some of you do to handle these infections without ending up in a hospital somewhere. Have to admit this terrifies me.

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All of us with RA get those warnings because it is endemic to the immunosuppressant class of drugs whether that is Humira or Enbrel or one of the infused drugs like Remicade.

To manage the pain and joint deformity we live with risk of other health issues.

So… I avoid large crowds such as concerts. I wear masks in places such as planes and in Church. I wash my hands frequently. I buy my groceries on Tuesday morning or at night when fewer people are in the store. I always wear masks in a hospital or Doctor office (lots of sick people in there 🙄).

When most people get a bronchial infection, they just power through it, with or without antibiotics. When we get it, we have to be urgent and intentional about conquering it. Otherwise we could end up in a hospital with pneumonia.

So it shouldn't control your life. But a healthy mission to avoid infection is smart.

I used to be on Humira and had an awesome response. Will you also be on methotrexate?

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@pb50

All of us with RA get those warnings because it is endemic to the immunosuppressant class of drugs whether that is Humira or Enbrel or one of the infused drugs like Remicade.

To manage the pain and joint deformity we live with risk of other health issues.

So… I avoid large crowds such as concerts. I wear masks in places such as planes and in Church. I wash my hands frequently. I buy my groceries on Tuesday morning or at night when fewer people are in the store. I always wear masks in a hospital or Doctor office (lots of sick people in there 🙄).

When most people get a bronchial infection, they just power through it, with or without antibiotics. When we get it, we have to be urgent and intentional about conquering it. Otherwise we could end up in a hospital with pneumonia.

So it shouldn't control your life. But a healthy mission to avoid infection is smart.

I used to be on Humira and had an awesome response. Will you also be on methotrexate?

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Thank you for filling me in on what you do to avoid being sick. I'm not certain yet as if the doctor is putting me on the methotrexate. He did say he is adding Prednisone and warned me that I would have to increase my insulin. I will purchase more masks and be prepared to wear them anytime I go near a store or for a doctor appointment. I appreciate you letting me know that you had an awesome response when you were on Humira. I'm hoping it takes some of the pain away and stops more damage from happening. May I ask what you are on now? I'm wishing you the best and appreciating all of the advice and informaion you provided. It helps. Do you get sick often?

REPLY

that was years ago when i was on methotrexate with Humira .. the nausea only lasted a few weeks... and then after a couple of years it made my liver enzymes go up and the doc kept lowering the dose until it no longer prevented me developing antibodies to Humira and I had to stop taking Humira... switched to Enbrel - less prone for antibodies. But ultimately i couldn't tolerate the methotrexate due to increased liver enzymes. i really never missed it. there's a belief that the biologic and methotrexate are better together than either is alone. but if it was doing anything for me, i'm not sure what that was.

FYI I had improvement in less than a week after starting Humira - and I had a very hard acute onset, so was in misery. I hope the same for you!!

Prednisone surprises me. in my experience, I had a short term course of low dose prednisone until we settled on the permanent medication of Humira. You have to taper off of it because it's a steroid, but it's destructive to bones so you won't be on it long i'm sure. But your pain will go away for sure. .. and yes, it will spike your blood sugar.

I'm on a drug called Remicade - i get infusions in my doctor's office every six weeks. It's been a wonder drug for me.

I recommend you go to Amazon and search for real ginger teabags and peppermint tea bags. much of what you find in grocery and pharmacy is just flavoring - which is no help whatsoever. I prefer ginger for nausea but many folks prefer peppermint - get some of each - not very expensive.

Good luck and reach out anytime!
Pam

REPLY

i failed to answer your core question as to how I handle infection. I let my Doc know asap if I believe I have an infection - he decides how he wants to validate that. We don't want to go willy nilly with antibiotics, so if my white count or whatever blood level he is interested in isn't worrisome, he will tell me to treat symptoms and let him know asap if I start a fever.

that includes any invasive dental work or surgery. In those cases - like a tooth absess and they want extract the tooth, if it's at all optional, he will tell me when the window is best in terms of avoiding infection around when I load up via infusion on immunosuppressants.

work out with your doc how he wants to field questions to him or his nurse..

REPLY
@pb50

i failed to answer your core question as to how I handle infection. I let my Doc know asap if I believe I have an infection - he decides how he wants to validate that. We don't want to go willy nilly with antibiotics, so if my white count or whatever blood level he is interested in isn't worrisome, he will tell me to treat symptoms and let him know asap if I start a fever.

that includes any invasive dental work or surgery. In those cases - like a tooth absess and they want extract the tooth, if it's at all optional, he will tell me when the window is best in terms of avoiding infection around when I load up via infusion on immunosuppressants.

work out with your doc how he wants to field questions to him or his nurse..

Jump to this post

Thank you for your response to my question. I had not even thought of dental issues. That helps tremendously to let my doctor also know about upcoming dental procedures. I live in a small town where the Rheumatologist only comes into town one day during a month. Getting an appointment with him on short notice may not happen so I'm hoping my general practitioner will pick up the slack on handling infections that appear. I appreciate your taking the time to advise me on this issue. Do you often get infections of various types?

REPLY
@pb50

that was years ago when i was on methotrexate with Humira .. the nausea only lasted a few weeks... and then after a couple of years it made my liver enzymes go up and the doc kept lowering the dose until it no longer prevented me developing antibodies to Humira and I had to stop taking Humira... switched to Enbrel - less prone for antibodies. But ultimately i couldn't tolerate the methotrexate due to increased liver enzymes. i really never missed it. there's a belief that the biologic and methotrexate are better together than either is alone. but if it was doing anything for me, i'm not sure what that was.

FYI I had improvement in less than a week after starting Humira - and I had a very hard acute onset, so was in misery. I hope the same for you!!

Prednisone surprises me. in my experience, I had a short term course of low dose prednisone until we settled on the permanent medication of Humira. You have to taper off of it because it's a steroid, but it's destructive to bones so you won't be on it long i'm sure. But your pain will go away for sure. .. and yes, it will spike your blood sugar.

I'm on a drug called Remicade - i get infusions in my doctor's office every six weeks. It's been a wonder drug for me.

I recommend you go to Amazon and search for real ginger teabags and peppermint tea bags. much of what you find in grocery and pharmacy is just flavoring - which is no help whatsoever. I prefer ginger for nausea but many folks prefer peppermint - get some of each - not very expensive.

Good luck and reach out anytime!
Pam

Jump to this post

Thank you and God bless you for your response to my question. I also hope that I'm not on Prednisone for very long. Having high glucose numbers is not something I look forward to, but getting the pain to ease is something I hope happens very soon. 🙂

Also, thank you for letting me know about the Ginger and Peppermint tea on Amazon. I have some that I purchased from our local store and it helps a little so I look forward to trying a better variety of it. I will be getting both types.

All advice is greatly appreciated to both you and others. I hope and pray that your infusions are done by someone that doesn't miss when administering them. I've had both horrible phlebotomists and also great ones.

Thank you again for your help and advice. I hope my experience with Humira is also good. Have a great day and I hope you experience no pain in the immediate future.

REPLY
@happilyalive

Thank you for filling me in on what you do to avoid being sick. I'm not certain yet as if the doctor is putting me on the methotrexate. He did say he is adding Prednisone and warned me that I would have to increase my insulin. I will purchase more masks and be prepared to wear them anytime I go near a store or for a doctor appointment. I appreciate you letting me know that you had an awesome response when you were on Humira. I'm hoping it takes some of the pain away and stops more damage from happening. May I ask what you are on now? I'm wishing you the best and appreciating all of the advice and informaion you provided. It helps. Do you get sick often?

Jump to this post

almost never but I am VERY careful with avoiding crowds and wearing masks, etc.

Mostly i interact with my doc over scheduling dental procedures like a root canal or an extraction - he may talk with the dentist or whatever to say he needs me outside the two week window prior or after an infusion - that is when my immune system is weakest. You should ask your visiting rheumy what protocol he would prefer in terms of knowing how to schedule for maximum immune response.

mostly i engage to avoid infections not respond to them..

REPLY
@pb50

almost never but I am VERY careful with avoiding crowds and wearing masks, etc.

Mostly i interact with my doc over scheduling dental procedures like a root canal or an extraction - he may talk with the dentist or whatever to say he needs me outside the two week window prior or after an infusion - that is when my immune system is weakest. You should ask your visiting rheumy what protocol he would prefer in terms of knowing how to schedule for maximum immune response.

mostly i engage to avoid infections not respond to them..

Jump to this post

Thank you for the advice on asking my Rheumy what protocol he would prefer I follow in terms of knowing how to schedule for maximum immune response. I will be joining you in engaging at all times to avoid infections. Any tips, thoughts, advice or knowledge you, or anyone passes on to me will be implemented. The thought of getting compromised in any way is something I definitely don't want to happen. It's not only for my sake, but I am my husband's caretaker also. There is no way I want either of us sick. I appreciate the information. Thank you.

REPLY
@happilyalive

Thank you for filling me in on what you do to avoid being sick. I'm not certain yet as if the doctor is putting me on the methotrexate. He did say he is adding Prednisone and warned me that I would have to increase my insulin. I will purchase more masks and be prepared to wear them anytime I go near a store or for a doctor appointment. I appreciate you letting me know that you had an awesome response when you were on Humira. I'm hoping it takes some of the pain away and stops more damage from happening. May I ask what you are on now? I'm wishing you the best and appreciating all of the advice and informaion you provided. It helps. Do you get sick often?

Jump to this post

@happilyalive Welcome to Mayo Clinic Connect. I see that you’ve already had contact with one of our beat question answers! I’ve been on prednisone for 6 years (have trouble coming off) and mycophenylate ( another immune suppressant) and I’ve never had an infection that got out of control. I know of a very good urgent care center near me, so I go there , if needed.
Another thing I always did was to wear gloves when traveling. I was constantly flying to Washington , DC, because my mother was dying. Luckily, the independent living facility, had very good infection and isolation rules. What can you add to the precautions list?
Just be cautious and aware, not scared. I bet you’ll be a master at this!

REPLY
@becsbuddy

@happilyalive Welcome to Mayo Clinic Connect. I see that you’ve already had contact with one of our beat question answers! I’ve been on prednisone for 6 years (have trouble coming off) and mycophenylate ( another immune suppressant) and I’ve never had an infection that got out of control. I know of a very good urgent care center near me, so I go there , if needed.
Another thing I always did was to wear gloves when traveling. I was constantly flying to Washington , DC, because my mother was dying. Luckily, the independent living facility, had very good infection and isolation rules. What can you add to the precautions list?
Just be cautious and aware, not scared. I bet you’ll be a master at this!

Jump to this post

Wow, you are a very encouraging person that I already appreciate very much. Thank you for letting me know that you have been on Prednisone for six years and I'm sorry that you have trouble coming off of it. Did it help you alot while you have been on it? I have not heard of Mycophenylate, but I'm also new to this world and am still learning. I am very happy that you've never had an infection to get out of control. You are very blessed.
Thankfully, our small town is in the process of getting an emergency care clinic as I type this letter. I appreciate your letting me know that you go to yours, if needed. I will be heading into ours as soon as they open to get their phone number and see their procedure so I can be prepared. Hopefully I'll never need to visit them again.
I was sorry to hear about your mother dying but appreciate learning about wearing gloves. I will begin looking for some of them immediately and thankfully fall things are beginning to come into the stores. I will also be looking up infection prevention and isolation rules to learn more. Thanks for letting me know about that.
Each of you have been amazing at responding to my worries, questions and giving me advice. Please don't feel like you have to stop. I have much to learn and am grateful.

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