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V. Complaints. Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
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Rheumatoid arthritis is an incurable auto-immune disease. The body immune system attacks its own joints producing inflammation, causing destruction of cartilage and pain. The only treatments available are palliative. They modify the body's immune response in order to reduce the joint inflammatory reaction and diminish the pain. Methotrexate is one classic drug commonly used. However, some more powerful new drugs that are administered by IV infusion, have been recently been released. All drugs that manipulate the body's immune system reactions, are DANGEROUS. They open the door to getting horrible lethal infections, including some forms of blood cancer. That's why many people who have received organ transplants eventually die. Because they are given these anti-immune drugs for life, to prevent the transplanted organ from being rejected by the body's immune system. By doing so, the body becomes powerless for fighting the slightest infection. They frequently die from sepsis. The same dangers lurk over patients of rheumatoid arthritis treated with the new drugs via IV infusion. Drugs that modify the ways the immune system reacts, are double-edge swords. I'm not saying not to use them, but to be well aware of the potential side effects you will be facing if you accept any of those IV infusion drugs for RA. Are the benefits worth the risks?
Additional information to the above: 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.
Though she is only 60 my step-daughter gets this. You will be told of both short term and long term possible side effects. The medication has been a great help to her, so the risks are weighed in the whole thing. They are not a lot different from the risks of the prior injectible-at-home medication. 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.
AlvaDeer, thank you for your comments, makes me feel good to read them. 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'd listen to AlvaDeer who's daughter has had excellent results with IV infusion therapy for RA! Not anyone who's telling you nonsensical stories about people 'eventually dying from transplants' due to being immuno-suppressed from meds. Guess what? We all die eventually! Shocking, I know. Phil Lesh had a liver transplant 24 years ago & is alive and well today, performing at concerts all the time these days & urging people to become donors.
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.
TChamp always represents our doom-and-gloom side of things, but at least even T. does say the OP should make her own decision. RA is progressive over the years, and eventually one has a choice to either live with severe crippling or take what our (yes, flawed, but at times miraculous) system has to offer. When one see the word "lymphoma" on the docket of side effects it does come as a bit of a shock. However, like I said, the benefits, the statistics of getting side effects or not, must all be weighed by the individual. 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!
Greetings Tired07, 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!
By proceeding, I agree that I understand the following disclosures:
I. How We Work in Washington.
Based on your preferences, we provide you with information about one or more of our contracted senior living providers ("Participating Communities") and provide your Senior Living Care Information to Participating Communities. The Participating Communities may contact you directly regarding their services.
APFM does not endorse or recommend any provider. It is your sole responsibility to select the appropriate care for yourself or your loved one. We work with both you and the Participating Communities in your search. We do not permit our Advisors to have an ownership interest in Participating Communities.
II. How We Are Paid.
We do not charge you any fee – we are paid by the Participating Communities. Some Participating Communities pay us a percentage of the first month's standard rate for the rent and care services you select. We invoice these fees after the senior moves in.
III. When We Tour.
APFM tours certain Participating Communities in Washington (typically more in metropolitan areas than in rural areas.) During the 12 month period prior to December 31, 2017, we toured 86.2% of Participating Communities with capacity for 20 or more residents.
IV. No Obligation or Commitment.
You have no obligation to use or to continue to use our services. Because you pay no fee to us, you will never need to ask for a refund.
V. Complaints.
Please contact our Family Feedback Line at (866) 584-7340 or ConsumerFeedback@aplaceformom.com to report any complaint. Consumers have many avenues to address a dispute with any referral service company, including the right to file a complaint with the Attorney General's office at: Consumer Protection Division, 800 5th Avenue, Ste. 2000, Seattle, 98104 or 800-551-4636.
VI. No Waiver of Your Rights.
APFM does not (and may not) require or even ask consumers seeking senior housing or care services in Washington State to sign waivers of liability for losses of personal property or injury or to sign waivers of any rights established under law.
I agree that:
A.
I authorize A Place For Mom ("APFM") to collect certain personal and contact detail information, as well as relevant health care information about me or from me about the senior family member or relative I am assisting ("Senior Living Care Information").
B.
APFM may provide information to me electronically. My electronic signature on agreements and documents has the same effect as if I signed them in ink.
C.
APFM may send all communications to me electronically via e-mail or by access to an APFM web site.
D.
If I want a paper copy, I can print a copy of the Disclosures or download the Disclosures for my records.
E.
This E-Sign Acknowledgement and Authorization applies to these Disclosures and all future Disclosures related to APFM's services, unless I revoke my authorization. You may revoke this authorization in writing at any time (except where we have already disclosed information before receiving your revocation.) This authorization will expire after one year.
F.
You consent to APFM's reaching out to you using a phone system than can auto-dial numbers (we miss rotary phones, too!), but this consent is not required to use our service.
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
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!
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!