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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@happilyalive

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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Ive been on Prednisone for 7 months. Tried to get IVIG but no go so now Im headed for Cellcept for multiple autoimmune diseases. In addition to the above precautions I carry Listerine strips, alcohol pads, Nozin nasal solution, & isopropyl based hand sanitizer. It’s a lot but one of my diseases is Antiphospholipid syndrome which makes blood clot as does Covid, so I’m not taking any chances! It makes me less anxious so I do what I have to. The isolation (I miss live music) is pretty wild but, it’s my life so…

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@pamelalaa

Ive been on Prednisone for 7 months. Tried to get IVIG but no go so now Im headed for Cellcept for multiple autoimmune diseases. In addition to the above precautions I carry Listerine strips, alcohol pads, Nozin nasal solution, & isopropyl based hand sanitizer. It’s a lot but one of my diseases is Antiphospholipid syndrome which makes blood clot as does Covid, so I’m not taking any chances! It makes me less anxious so I do what I have to. The isolation (I miss live music) is pretty wild but, it’s my life so…

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I greatly appreciate your letting me know what you have for precautions in protecting yourself from hopefully getting sick at any time. I am going to copy them and just added them to the store list. I have never heard of Nozin so am hoping that any nasal solution will work.

May I ask if you had a Covid shot? My Hematologist in the city I moved from advised me that if I had one since I was anemic, that the shot would have trouble binding with the little iron that I had and would be very ineffective. I've heard mixed messages from several doctors regarding this issue.

I am very glad that you aren't taking any chances with your health in getting sick. That's important and we can never take our health lightly.

One other question--what kind of diet do you eat that provides the best nutritional benefits for autoimmune? Currently I am on a Renal Diet and hope that is good but know that I may have to make some changes.

Thank you for writing and letting me know. No wonder you miss live music. The isolation can get hard. Hopefully hobbies will help somewhat. I don't know if you have any, but hope that you do and other things also to bust up the isolation boredom that sometimes happens.

I look forward to more information and advice. Thank you immensely for your help.

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@happilyalive

I greatly appreciate your letting me know what you have for precautions in protecting yourself from hopefully getting sick at any time. I am going to copy them and just added them to the store list. I have never heard of Nozin so am hoping that any nasal solution will work.

May I ask if you had a Covid shot? My Hematologist in the city I moved from advised me that if I had one since I was anemic, that the shot would have trouble binding with the little iron that I had and would be very ineffective. I've heard mixed messages from several doctors regarding this issue.

I am very glad that you aren't taking any chances with your health in getting sick. That's important and we can never take our health lightly.

One other question--what kind of diet do you eat that provides the best nutritional benefits for autoimmune? Currently I am on a Renal Diet and hope that is good but know that I may have to make some changes.

Thank you for writing and letting me know. No wonder you miss live music. The isolation can get hard. Hopefully hobbies will help somewhat. I don't know if you have any, but hope that you do and other things also to bust up the isolation boredom that sometimes happens.

I look forward to more information and advice. Thank you immensely for your help.

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I’ve had Covid shots every 6 months since the beginning. My rheum said I shouldn’t bc he was afraid of activating my haywire immune system. I’m anemic too but he didn’t say anything about that. My neuro (also have MG) said he felt I should/could give it a try. Autoimmune disease is so individual, my best advice is read peer reviewed studies, trust your docs, and trust your gut. My health is much worse but that’s not surprising w/o COVID, so I have no idea who was right but I figured the beast I know was preferred. I have not tested positive for COVID yet and I do have some antibodies per a blood test so, I’ll stick with the plan as long as the science doesn’t change.

Sadly, I’m not doing great with diet rn. I like to stay away from sugar & red meat. I have loads of food sensitivities & allergies so it’s tricky. I’ve done elimination diets but I’ve heard good things about AIP, just can’t seem to get the energy to do necessary prep. Of course, your nutritionist, dietician, & doc should help you with the right diet for you. I will say my favorite new product is “Just Egg”. It’s a vegan substitute that’s actually really good & allergy safe!

Yep. Hobbies help. Mobility makes them hurt but it’s ok. Short, creative stints & ergonomics are everything :).

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@pamelalaa

Ive been on Prednisone for 7 months. Tried to get IVIG but no go so now Im headed for Cellcept for multiple autoimmune diseases. In addition to the above precautions I carry Listerine strips, alcohol pads, Nozin nasal solution, & isopropyl based hand sanitizer. It’s a lot but one of my diseases is Antiphospholipid syndrome which makes blood clot as does Covid, so I’m not taking any chances! It makes me less anxious so I do what I have to. The isolation (I miss live music) is pretty wild but, it’s my life so…

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I didn't know what Cellcept was so looked it up. I do hope that it works for you. Please let me know how it goes. I was sorry to read that you have multiple autoimmune diseases. That must be miserable at times. You are wise to take every precaution you can think of to avoid getting ill. I totally wish you the best in every way.

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@pamelalaa

I’ve had Covid shots every 6 months since the beginning. My rheum said I shouldn’t bc he was afraid of activating my haywire immune system. I’m anemic too but he didn’t say anything about that. My neuro (also have MG) said he felt I should/could give it a try. Autoimmune disease is so individual, my best advice is read peer reviewed studies, trust your docs, and trust your gut. My health is much worse but that’s not surprising w/o COVID, so I have no idea who was right but I figured the beast I know was preferred. I have not tested positive for COVID yet and I do have some antibodies per a blood test so, I’ll stick with the plan as long as the science doesn’t change.

Sadly, I’m not doing great with diet rn. I like to stay away from sugar & red meat. I have loads of food sensitivities & allergies so it’s tricky. I’ve done elimination diets but I’ve heard good things about AIP, just can’t seem to get the energy to do necessary prep. Of course, your nutritionist, dietician, & doc should help you with the right diet for you. I will say my favorite new product is “Just Egg”. It’s a vegan substitute that’s actually really good & allergy safe!

Yep. Hobbies help. Mobility makes them hurt but it’s ok. Short, creative stints & ergonomics are everything :).

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Wow, Covid shots every six months was something I didn't even know was possible. I am learning a lot on this site. I appreciate your letting me know to read peer reviewed studies, trust your docs, and trust your gut. Sticking to what you feel is right for you and researching things is good. Proud of you for that.

I was sorry that your diet was going great. It does sound tricky with the food sensitivites and allergies. You also taught me that there is such a thing as an AIP diet. I will start researching it to tweak the Renal Diet. I have never heard of the "Just Egg" product but did look it up to learn that our local store carries it. Do you know if people allergic to eggs can eat it?

Thank you for writing and letting me know of products and information. I am taking notes. 🙂 Have a great day.

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@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?

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Do check your blood sugar often! It can get very high on prednisone, as I know, I am on it now for my back spasm.

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@ksdm

Do check your blood sugar often! It can get very high on prednisone, as I know, I am on it now for my back spasm.

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Hi ksdm, Yes, I check my blood sugar levels alot and have a sensor that also alerts me when it begins to go low or even too high. Some days I have to force myself to eat just to get it normalized again. Thanks for letting me know that the blood sugar can get very high on prednisone. I'm not certain what all to do regarding it getting high so will be talking with my Endo at the next appointment. How are you doing with your back spasms and what do you do to get your blood sugar down to a better number?

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@happilyalive

Wow, Covid shots every six months was something I didn't even know was possible. I am learning a lot on this site. I appreciate your letting me know to read peer reviewed studies, trust your docs, and trust your gut. Sticking to what you feel is right for you and researching things is good. Proud of you for that.

I was sorry that your diet was going great. It does sound tricky with the food sensitivites and allergies. You also taught me that there is such a thing as an AIP diet. I will start researching it to tweak the Renal Diet. I have never heard of the "Just Egg" product but did look it up to learn that our local store carries it. Do you know if people allergic to eggs can eat it?

Thank you for writing and letting me know of products and information. I am taking notes. 🙂 Have a great day.

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Ive had every covid shot and booster i could get. I guess that's been every six months for a couple of years now. I make sure to not get them in the four week window of two wks before and two after my infusion so i am more likely to have some level of immune response.

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@pb50

Ive had every covid shot and booster i could get. I guess that's been every six months for a couple of years now. I make sure to not get them in the four week window of two wks before and two after my infusion so i am more likely to have some level of immune response.

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pb50 -- I am glad that you are doing everything in your power to better your health. You have endured much with all of the shots and boosters while yet being smart enough to know the time frame that you need to pause them. You and all of the others who have helped me with information and knowledge are a true blessing. I hate that each of you are going through so much and hope that everyone gets some relief at some point soon. Thank you for sharing with me.

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@happilyalive

pb50 -- I am glad that you are doing everything in your power to better your health. You have endured much with all of the shots and boosters while yet being smart enough to know the time frame that you need to pause them. You and all of the others who have helped me with information and knowledge are a true blessing. I hate that each of you are going through so much and hope that everyone gets some relief at some point soon. Thank you for sharing with me.

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Oh thank you but I’m one of rhe lucky ones. I am very well controlled compared to so many. The occasional flare and recurrent trigger finger but all in all very lucky. And all the tips and tricks we are throwing at you can be learned over time.

Stay in touch!

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