1. < Autoimmune Diseases

Manage/Mitigate Rinvoq side effects

Posted by gma33 @gma33, Feb 18 10:00am

Taking Rinvoq to control autoimmune full body rash. Side effects have included Shingles, pink eye, RSV, mouth ulcers, migraine headaches, cellulitis . Don't want to discontinue Rinvoq since nothing else seems to keep the rash in check but cannot continue with these debilitating side effects. Anything that would help mitigate them?

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Feb 19 9:40pm

@gma33 I’m so sorry that this very unpleasant situation has brought you to Mayo Clinic Connect. What autoimmune disease are you trying to medicate? This will help me point you in the right direction for some help. You must remember that Rinvocq is like many autoimmune medicines in that it depresses the immune system, so you have to be extra careful in preventing infections. What has your doctor said about all these side effects?

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1 reply
gma33 | @gma33 | Feb 25 8:14am
In reply to @becsbuddy "@gma33 I’m so sorry that this very unpleasant situation has brought you to Mayo Clinic Connect...." + (show)
@becsbuddy

@gma33 I’m so sorry that this very unpleasant situation has brought you to Mayo Clinic Connect. What autoimmune disease are you trying to medicate? This will help me point you in the right direction for some help. You must remember that Rinvocq is like many autoimmune medicines in that it depresses the immune system, so you have to be extra careful in preventing infections. What has your doctor said about all these side effects?

Jump to this post

Sorry Becky for the delayed reply. Yes, after 14 years of having to use medications like Rinvoq, I know they depress the immune system. As one after the other eventually failed to control my autoimmune disease, which manifests as a painful, full body rash, Rinvoq was managing to keep the rash at bay. However, the side effects are now making it difficult to live a normal life. Doctors, in an effort to continue use of the drug, treat the issues as they arise which is not helpful. By joining MCC I was hoping, irrationally perhaps, to see if anyone had found a way to either mitigate these horrific ARs or even eliminate them. Perhaps by some homeopathic remedies or changing dosage? I am at a crossroads now, as the latest side effect, cellulitis around my eyes (!) is dissipating after a course of antibiotics. Fortunately, I am able to work from home, which allows me to keep my job and reduce exposure to bacteria and viruses, but they still seem to find me. My dermatologist just retired so I also need to find one willing and able to treat autoimmune diseases. Thank you for your interest and any advice you may be able to offer.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Feb 25 4:34pm
In reply to @gma33 "Sorry Becky for the delayed reply. Yes, after 14 years of having to use medications like..." + (show)
@gma33

Sorry Becky for the delayed reply. Yes, after 14 years of having to use medications like Rinvoq, I know they depress the immune system. As one after the other eventually failed to control my autoimmune disease, which manifests as a painful, full body rash, Rinvoq was managing to keep the rash at bay. However, the side effects are now making it difficult to live a normal life. Doctors, in an effort to continue use of the drug, treat the issues as they arise which is not helpful. By joining MCC I was hoping, irrationally perhaps, to see if anyone had found a way to either mitigate these horrific ARs or even eliminate them. Perhaps by some homeopathic remedies or changing dosage? I am at a crossroads now, as the latest side effect, cellulitis around my eyes (!) is dissipating after a course of antibiotics. Fortunately, I am able to work from home, which allows me to keep my job and reduce exposure to bacteria and viruses, but they still seem to find me. My dermatologist just retired so I also need to find one willing and able to treat autoimmune diseases. Thank you for your interest and any advice you may be able to offer.

Jump to this post

@gma33 so difficult! And I’m so sorry that you have to go thru this. Since you are looking for a new dermatologist, you might try contacting GARD, Genetic and Rare Diseases. They try to keep a list of autoimmune-knowledgeable doctors. https://rarediseases.info.nih.gov/
Or you can try the National Organization for Rare Diseases:
https://rarediseases.org/
They also keep lists of rheumatologists, in case you’re not happy with your current doctors.
You really deserve to have good care! Will you make some calls tomorrow?

REPLY
1 reply
gma33 | @gma33 | Feb 28 9:28am
In reply to @becsbuddy "@gma33 so difficult! And I’m so sorry that you have to go thru this. Since you..." + (show)
@becsbuddy

@gma33 so difficult! And I’m so sorry that you have to go thru this. Since you are looking for a new dermatologist, you might try contacting GARD, Genetic and Rare Diseases. They try to keep a list of autoimmune-knowledgeable doctors. https://rarediseases.info.nih.gov/
Or you can try the National Organization for Rare Diseases:
https://rarediseases.org/
They also keep lists of rheumatologists, in case you’re not happy with your current doctors.
You really deserve to have good care! Will you make some calls tomorrow?

Jump to this post

Thanks for the information Becky. I'm also in the middle of changing health insurance plans. As soon as that is settled, I will definitely check the links you have provided. Again, thanks for your empathetic response. It was comforting!

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