Bubble life
So, just got my rx for Leflunomide 20mg. And the things it says about infection risk are startling. The paperwork says to avoid cuts & injuries -even goes so far to say i should use an electric razor because a standard razor would be more likely to cause cuts.
You gotta be kidding me right?
Firstly, I'm a lady that loves woodworking, gardening, doing projects, etc., so not doing any of those things would severely reduce the quality of my life.
Secondly, I'm super klutzy, I hurt/cut/bruise myself all the time just walking through my house.
Thridly, I am prone to sebaceous cyst & acne, so I pretty much have "wounds" all the time.
So, what am I supposed to do? Live in a bubble?
So my question is, how serious is this risk of infection? How many of y'all live the bubble life?
Any feedback would be most appreciated. Thanks in advance!
Ugh! How frustrating,
! I can just imagine how your head is spinning on this issue. Every medication has its long list of side effects and while the list may sound daunting, its worth still taking seriously and with much caution. Have you discussed any of your concerns with your doctor? It would be dreadful to have to give up on almost everything that you love to do, let alone still be at risk in your own home. Maybe there are some safety measures you can take to lower the chance of infection but again, it's worth getting the okay from your doctor. I did include two additional forums to this thread for your review where members have shared their experience takin this same medication. You can access it here- https://rheumatoidarthritis.net/forums/leflunomide, https://rheumatoidarthritis.net/stories/leflunomide. Hopefully you can create a lifestyle that keeps you enjoying the things you love and safe at the same time. All the best, Latoya (Team Member) thank you for the articles, read both, interesting that the meds seem to work for those folks, but unfortunate had to stop due to side effects. But this wasn't exactly the feedback i was looking for. Glad you gave it a read! I just wanted to share something in the mean time. As far as your additional question, it is my hope that other members chime in with their own experiences to offer you some more insight. When others do share their story, just keep in mind that everyone's experience and outcomes will be different. Here is some overall information on the Leflunomide- https://rheumatoidarthritis.net/treatment/arava. If there is any other way we can help or offer any information please let us know! Kindly, Latoya (Team Member)
Hi Pixelklo! I have been on Leflunomide for about a year now. Since I am a young mother of 3 and always out and about playing and attending soccer games; little trips, scrapes and booboo's are also a part of my life. As well as acne that turn cystic. When I started this medication, I really was not aware of all the things that you listed above. I just kept living my life. And while I did notice that yes, I bruise way easier and my cuts take a littler longer to heal, I haven't had any problems. I'm not a doctor, obviously, and everyone is different. But if I were you, I would just make sure that cuts and bumps are getting washed regularly and bandages with a good antibiotic ointment when necessary. As far as the acne, my Rheumatologist is somewhat of a herbalist and gave me some ideas of what I could put on my face to help the acne and my horrible rosacea. I had found products that have helped tremendously, message me if you are interested. I'm not on here to push products. Haha. Good luck!
wow! That's great to hear! My life would be, well, not my life if i couldn't enjoy my hobbies. Very glad to hear that infection seems to be low with you on Leflunomide. Do you 10mg or 20mg per day?
I would also be greatly interested in anything that helps keep the cystic acne in check! I've tried every home remedy from vinegar to baking soda, and even tried the most harsh chemical peels, nothing helps. My dad had cystic acne too, and neither of us sweat...something about our pores being tiny. Apparently the combination of these attributes causes cystic acne.
Thanks for your post! Great to hear a first-hand success story with similar issues!
I have been on a large variety of immunosuppressants over the years, including DMARDs and Biologics. I do feel my skin is more easily injured, but haven’t had problems with skin infections. I’m more careful to wear high quality gardening gloves and long sleeves and to wash out scratches well. Bruises do seem to take longer to heal, but aren’t very painful.
My liver didn’t tolerate Leflunomide, so I was only on it briefly. Interestingly, I seem to have tolerated biologics okay without raging infections, but while on methotrexate (with or without biologics) dental infections were a problem. I have had some tough bouts of bronchitis. It’s hard to say if this is because of my meds or the specific viruses that made many people ill this past winter.
For most of the year, I go about my life without lots of precautions. However, there was about a month this winter, when my region was in the throes of respiratory illnesses, that I did cut back on exposure to indoor crowds. And, while it breaks my heart, I now avoid my young grandchildren when they have a fever or new cough. As a retired Peds nurse, that’s a tough one!
As with everything RA, it’s about finding your own balance. I believe you can be hopeful that you can continue your hobbies, JoOkay great to hear about the lack of skin infections, this is definitely my biggest concern. I know the meds make lung infections more prevalent, so yes, hard to tell. Dental stuff is rough, I hope if I have to try methotrexate that doesn't happen to me. Sounds like you've been through the gambit a bit with meds! Do you feel you've found a drug(s) that work for you finally?
I already avoid sick people, because I'm always the one that gets sick, gets sick way worse and stays sick for a lot longer (2 months vs 2 weeks). Now I know that with RA, my immune system is weaker than most so it's nice to have an answer for that at least. So avoiding sick people won't be much of a change for me.
Hearing yours and susan's stories make me hopeful that I can do this without giving up my hobbies. Time will tell!
Thank you so much for your feedback!
