Post # 1
Hi everyone, normally I only post about my upcoming wedding but have come to the Bee to ask a personal question to all of you with family who have been diagnosed with R.A. My sister who is 32 was diagnosed at 18 with a severe case of R.A. and has struggled with flare ups and swollen/disfigured joints for since the diagnoses. She is so young and such as beautiful person I hate to see her struggle with this illness. She has put off having a baby (for reasons related to her disease) and cannot work AT ALL. She struggles with the idea of taking biologics (Enbrel or Humera) due to the cancer risks. PLEASE bees, if you have ANY experiences both positive and negative send them to me. She is beginning to lose hope that there will be a medication that will alleviate some of her pain.
Post # 3
I am 28 and I too was diagnosed with RA at 18. I am on Enbrel and have been for over 2 years. I have no problems with it, had far more with methotrexate. I too was scared because of the cancer risk but I’ve been fine. I wouldn’t like your sister to take that as gospel and end up sick.
I think it’s a risk. But all medication comes with risks – methotrexate comes with a side effect of ‘occasional death’, you have to weigh up the risks with the benefits and always discuss it with health professionals (I am a qualified OT and am very high functioning; I’ve not had a flare up in nearly 3 years)
I would be more than happy to talk to your sister about my experiences and would gladly PM you my private email address if you or your sister would like to talk about it more.
Post # 4
Totally agree w/ PP that all meds come w/ risks – even Tylenol! Some natural remedies can have side effects. I am back on Celebrex and no biologics right now (LOVED Humira!). I got ulcers from Celebrex 8 years ago and when I made the choice to go back on it (along w/ my rheumatologist), I thought long and hard. I know what the risks are w/ Celebrex bt the benefits outweigh the potential side effects for me. This may be dumb but when I was most recently on Humira, I hate injecting myself. PLus the pharmacy was out of the pens that make it easier, and I didn’t want to wait for them to come in. Enter my partner: he’s an RN (and in grad school to be a nurse practitioner). He injected me at home (he’s also done IVs on me at home – hey, it sometimes stops me from going to the ER!). I feel really tired on days I get injections. Just totally wiped out. If your sister isn’t a member of Chronic Babe, definitely suggest it to her. It’s for women w/ all sorts of chronic health conditions, and then there are different groups she can join (there’s a lupus one that I’m on that’s awesome). She may get more feedback about biologics on that site – and its been so helpful for me). Also, if it helps, I feel like I have a more negative experience on Prednisone than Humira. If your sister wants to talk to me, PM me and I will give you my email and cell phone number. I’ve been diagnosed w/ RA since I was a kid (I got diagnosed at the same time they gave me my lupus dx. I was 10 or 11). No prob if you don’t, but I know for me meeting people with similar issues has helped. [sweet side story: my best friend EVER has lupus too and it’s so different to talk to her and tell her that my joints hurt or I’m worn out b/c she just GETS IT and other people are all “But you look good!” or they just don’t get it. I don’t get mad at them, but to have a friend who understands? PRICELESS. For real.)
Post # 5
Ohh wow! Thanks I never heard of Chronic Babe I am going to suggest it to her. Thank you both for your time in posting! It really means a lot. I know I sent both of these messages to my Sister and she was just happy to hear some responses! I will be introducing her to Chronic Babe right now!
Thanks again ladies!!
Post # 6
I’ve had RA since I was about 3 (so 20 years) and have been on Humira for three years now. I started it because I went through a really bad flare and never could get back to the level of management I previously had with just methotrexate. Giving yourself injections sucks, but at least it’s only every other week (for most, anyway). Humira allowed me to get back to a great level of management; almost no pain or stiffness.
That said, I noticed a small but dark-colored mole (almost black–different from my other moles and freckles) on my arm this past spring, and a biopsy determined that it was “abnormal”–not cancerous, but with the potential to become so. The dermatologist removed all of it and gave me a full-body exam just to be safe. Upon hearing about this my rheumatologist was a little concerned–he said that an increased risk of skin cancer is really the only type of cancer risk that biologics have been tied to, at least so far. I don’t tan or spend much time in the sun anyway, so I’m continuing Humira with the understanding that I need to be aware of my skin and get a full-body dermatological exam every year just to keep an eye on things. It’s a little concerning, but not something I worry about much–skin cancer is very treatable, especially if you catch things very early.
Sorry for the long response, but to sum that up, it sounds like your sister is in a place where she might really benefit from a biologic. The cancer risk is there, but not huge from what I understand. I was on Humira for two years before this mole removal, and I’d say things got really good within 6 months of starting it. It’s definitely worth a try–if it works well, she can always wean off of it and see if her pain levels can be maintained using only methotrexate or other drugs.