Remicade Day
Every six weeks, I spend half a day at my doctor’s office receiving an IV infusion of a drug called Remicade. Remicade is in a newish class of drugs that have made a huge difference in the lives of people with Rheumatoid Arthritis (and also, Crohns Disease). I have a love-hate relationship with it. I love it for how it’s enabled me to get out of bed in the morning and most of all, how it’s enabled me to type. But I hate it because I lose most of a day of work. I find it impossible to work while receiving it because I can’t type and I really can’t focus very well while at the doc’s. This is a small price to pay for a drug that has given me so much.
There is an unexpected bonus to receiving Remicade, one no one predicted, and that is that it’s often administered to a group of people at one time. For example, yesterday two other women and I shared four hours together, along with our great Remicade nurse, Pat. We chat and watch goofy daytime television and compare notes on our joints and our lives. It’s like having a little support group of fellow RA patients, and I think there is no substitute for being with people who understand one another’s plight. I always feel lifted up by witnessing the strength of others.
The downside of Remicade and all the other drugs used to treat autoimmune diseases is that they fade over time. I’ve been on Remicade for four or five years and have reached the maximum dose. Another downside is the long-term side effects, most of which are unknown at this time, but which include an increased risk of cancer. I’m taking those risks for quality of life now. It’s the sort of choice everyone has to make for him/herself. I’m thankful so much research is going on into RA and new drugs keep popping up, so I will have some alternatives when it no longer works. I don’t want to turn this into a political discussion, but the real answers to these diseases lay in stem cell research. Till then, I’m very grateful for the medications, the support groups, and voice recognition software.
Now, if you believe I can be cured by drinking Noni Juice, using magnets or cleansing my blood of excess iron, please keep your thoughts to yourself! Been there, done that, and have the damaged joints to attest to time wasted looking for the miracle cure. 🙂
Diane
Will not give you any advice as to cures-I totally agree. I was diagnosed with O. arthritis in my 20’s about the time of my hysterectomy for Endometriosis (?hormones and arthritis???I wonder???) Anyway, people have told me so many things-but because I have had 5 strokes (first one in my 20’s), have a bleeding ulcer, so many scars from Endometriosis that makes the pain worse) gallbladder out (last year), Fibromyalgia…etc…I can’t take ANYTHING for arthritis now but an over the counter and that doesn’t work. I CAN relate to you-the pain is always there and always has been since my 20’s (am now almost 59)…The only relief-a hot tub at the beach–no kidding…
Now-I am off my hormone patches because of the strokes and threat of breast cancer (mother) and feel even worse-I am so tired of people’s advice for all of this…I work full time-teaching at two schools-and started so late that can’t retire-am a grad student-almost finished…Diane–you are like I am-you keep going no matter what with the threat of cancer our shadow…I wish I could have hormones because of the quality of life–but I can’t…
I feel for you…you are gifted in the midst of this DISEASE–and for some reason-people think that JUST BECAUSE WE have arthritis and are in much pain (and swell so much) that we aren’t really ILL from anything-and should keep going.
You amaze me…you are a gift to the rest of us.
SORRY FOR THIS SERMON but your blog-about the advice-and all =got me going…
Thanks for listening…
brenda,
what’s the weirdest, funniest, or most aggravating advice you’ve been given by well-meaning friends or family? it’s usually couched in something like “my grandmother had arthritis and couldn’t even get out of bed. then she starting taking 9 gin-soaked raisins a day, and now she’s out dancing every night!” the funniest advice i’ve received was from a “friend” who said i should stop all medication and rub my swollen ankles and wrists with prepartion H. if only it were that easy!
I can’t exactly say “I feel your pain.” But I can say I understand. If there were miracles, my mother’s mother would have seen my mother’s 1st birthday and my father’s mother would have been able to see me walk down the stage at both my high school and college graduations. I fully believe in stem cell research, my one grandmother could have possibly benefited from it, and hope it passes through sometime soon. Then again my faith in that is low considering I also live in the first state to try to ban abortion. Anyways, when I say I understand, when I was 4 years oldish, I may have been 3 but I know one of my sisters was born. Anyways my cousin threw me on a bed (I was really small and weighed about 20 lbs) and I hit a loose spring and dislocated my shoulder. Thanks to the wonderful health care in 1984 I have to live with the constant pain in my shoulder. I am to the point of bone on bone grinding and dislocate my shoulder daily while getting dress and trying to do my job. Since where I live we have 2 seasons, Summer and Winter (it just tends to go from really hot to really cold no middle)That takes a huge toll on my shoulder and the pain gets bad when the weather constantly changes. There have been times I couldn’t even lift a pencil. But I keep going the best I can. Someday there will be something to help me. I am glad there is something that helps RA sufferers to a point. A woman I worked with a few years ago had it so bad she had limited use of her fingers. Sometimes they’d lock up. Anyways I shut up now because I can go on for a few hours if I really wanted to.
Of course the magnetic bracelet for the arthritis-to no avail
Lots of milk for ulcer-to no avail
Nightsweats and hot flashes-eat lots of fish…I am a vegetarian and have eaten no animals since 1992-so I laughed at that one.
The Endometriosis–a nurse told me that I didn’t really want children anyway…this to a woman (me) who took fertility drugs to get pregnant in the first place.
Arthritis-make sure I don’t drink tea, coffee, or soda (I don’t drink the first two…except this summer in London)…don’t eat sweets…vegetarians crave sweets esp. with no hormones… You name it-someone knows what I should do…but no one has the real answer…
This one gets to me: Every woman goes through menopause-just because you have gone through it 4 times (each time I am taken off hormones)-that’s life-accept it-get through it-everyone does eventually…
I haven’t any answers. I do try to be thankful in all situations (hard to do but it helps) and I can see that you do that also. I want to remind you that you have so much and you have such great talent. Even your dog is adorable 🙂 I don’t know what to do about the licking either LOL
Lorene
brenda, i got a hot flash just reading your comment.
lorene, thanks for the compliments!
I admire you so much for your courage and your sense of humor…my husband was my first hero and now your my second…
you just do what you gotta do.
I know exactly what you mean…you definitely have more to deal with then others, tho…your a very courageous woman…
Hi. I was just doing so me research to see if hot flashes had anything to do with Remicade. Your page came up. Anyway, nothing is helping. I’m on Remicade for psoriatic arthritis. I had been on an estrogen patch for hot flashes that just stopped working. Dr. increased dosage and gave me a pill form which still isn’t working. Told me to check in with my rheumatologist to see if Remicade causes flashes. I couldn’t find anything on that. Do you think it might? I don’t know. I’m getting frustrated and depressed about it. I’m hot all the time, but like you say, it’s great being able to walk. That was questionable at one time. Been on Remicade since 2003. I’m about where you are. It’s nice to have someone to relate to! I need to check out your books!!!!! Have a great day. Robin
Hi Robin! Welcome to the blog. I have had a terrible time with heat as well, but not sure it was due to the remicade. My doc recently put me on neurontin to try to help with the hot flashes and that has helped quite a bit. I also sleep much better! Good luck to you.