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Many people with immune system issues like RA need RELIEF from disease processes, not fear mongering and anecdotal stories about worst case scenarios. It's rare to find a person who dies from 'the slightest infection' when they're immuno-suppressed, and the same thing goes for sepsis, which is easily treated these days with broad spectrum antibiotics. Immuno-suppressed individuals ALSO take certain medications as prophylactics to prevent infections from setting in in the first place. Your friends' doctor will paint a FULL picture so they can be given the best guidance. They won't just hear the worst case scenarios, but the truth about the pros and cons involved in cutting edge new medical technology designed to HELP elders with debilitating diseases like RA.
Best of luck!
Reading the side effects on an aspirin tin is enough to make one cringe. And they CAN and DO happen. But statistically you weigh it, then you decide whether or not to purchase that ticket to ride.
I think we have to decide for ourselves. And we have to do the best we can with our own decisions. There's really little choice. But for these medications my stepdaughter would be totally crippled at this point. Instead she is out there teaching special ed, planting a marvelous garden and harvesting string beans and tomatoes. Will there be a price to pay for these new medications? Perhaps. And that is known. And will be dealt with when it must be. Meanwhile, life is to be lived as best we can and with as much quality. She's a smart gal, like our OP, and will deal with it as it comes. With HOPE.
As an RN the one thing I was always taught was not to rob patients of "hope". And to let them make their OWN informated decisions. In the most dire circumstances in life hope and automony are often the only life preservers we have. I would be the last to strip them away.
I believe our OP is smart enough and capable enough to discuss with her own MD, and to weigh options and act for herself.
Some of us walk about with a permanent rain cloud affixed over our parade. Some of us are unrealistically oblivious to dangers. I think the best thing about Forum is that we get a whole range of opinions to choose from and consider; that's at best. At worst, of course, we end our OPs sitting confused as ever.
That's the OTHER thing about having any medical issue. EVERYONE OUT THERE has an opinion about what YOU should do. Hee hee!
These new drugs are called Disease Modifying, Anti-Rheumatic Disease Drugs (DMARD) or Biologics for RA. They are administered by IV infusion. The DMARD drugs do not cure the disease, they only reduce the severity of the RA symptoms. When they work, there is a relief in joint inflammation and pain. However, it's possible that they will stop working after a while. Then other drugs of the same category can be tried. If the treatment is stopped, the RA symptoms come back as before. Besides their serious side-effects, they are extremely expensive. About $5000. a month.
As to others and their experience, you do need to know that the experience of one person may not in any way mirror your own experience as our bodies, our reactions or lack of them is about as individual as a thumbprint.
When I was put on tamoxifen for 5 years after my breast cancer 35 years ago, I mistakenly misunderstood the drug and thought it was an estrogen REPLACEMENT and not an anti-estrogen. Even as a nurse I was so overwhelmed at the time I got this whole thing about docking stations on a cell confused. I guess because I THOUGHT this would replace my lost estrogen (from menopause brought on by chemo), I loved this medication and felt great on it. Meanwhile, all around me, my Sisters in the battle were complaining about its side effects. Would have been funny, but wasn't.
Wishing you good luck and hope you will update on your experience for us here.
At 83, I am currently gathering info
on how to approach my hip arthritis re pain relief / possible op-or not-taking into account all about myself both medical and emotional....
As you say ' In the most dire circumstances in life hope and automony are often the only life preservers we have.'
So I will weigh the options. So far I don't take painkillers but am now getting close to trying some because the pain is getting so intense when walking. Have to walk to survive-enjoy living-- at home on my own!! I like your realistic and compassionate approach and wish the best for you and your friends and family xo
I am 58 yo, female and have been dx with RA for like 25 years or more.
I have taken most of the IV infusion drugs, and at first found myself sitting in a chair like Tom Hanks in Philadelphia, hooked up to Remicade at 10k a unit. I was taking 10 units. It worked for a while, then I went on to the others, so many that it seems hard to remember them all. The most recent RA doc tells me I did not fit with the Methotrexate models as the add on and now has me on the other class of drugs on the other side of the spectrum. My point is that no matter which one or how much you get it is an individual experience. Mine were all good at one time, but slowly I had to move around until I found the one that works best for me. Hope that helps!