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Somewhere along the line medical people,researchers,pharmaceuticals join lay people in believing nonsensical commercials.
Don’t you know a pill or a jab and PRODcan run on the beach with their dog and prepare a lovely meal and entertain. All in one day,,, no sweat, no pain, no payback?
They need to look in different directions.
The research completed to date has definitely plataued due to researchers constantly looking in the same or similar areas of immune system suppression. They need to go back to the beginning and start looking for the cause again. Current research streams are stuck in a loop. We need fresh eyes on this urgently!
I have lived with this disease for at least 30 years.I take a biologic and also plaquinil daily. This helps but is not enough to stop the progress of this disease. We who have RA usually have other auto-immune diseases as well. Because of my age I am not able to take any pain medicine except over the counter like Tylenol. So I live with pain daily. Until there is a cure for RA and the other auto immune diseases there should never be a stop to the research. I pray for a cure for this every day and for all those who suffer mostly in silence. I am a member of RA Warriors and we all try to give each other emotional support and understanding. At least we are trying to gain further insight from each other. I know there are many more diseases that need a cure as well and don’t mean to sound greedy in my quest for a cure. I did the drug study for Humira many years ago and took this drug for about 10 years. At one time I did go into remission but it was short lived. I later changed to Orencia and this helps but as I sit here today in pain I know this is not the end all the biologics claim. Please continue the research until a cure is found! Not only because of the pain but also the internal problems that go along with it.
With talk of PRD and RA should also come a discussion of pain management.
All of the breakthroughs are great, but the pain, swelling and related issues are being ,IMO, overshadowed by this country’s “opioid epidemic “.
For the first time since being diagnosed with RA back in 2005 I was almost pain free. 50 mcg of Fentanyl transderm every 3 days had me almost fully functioning. But with the CDCs guidance and the overrwatch of the monitoring agencies, my pain doctor is being directed to take me off the only thing that has worked! Somewhere in my genes is some kind of issuse with pain meds. My 2 sons and I all have a reduced response to opioids, which means to get any relief the dosing must be at the higher end of the scale. Under the new guidelines 90 mg morphine equivalent is the max dose for anyone, no exceptions.
Just like how RA affects everyone differently, how each person responds to pain meds is also different. However the CDC in their infinite wisdom (sarcasm ON) thinks that a single dosing limit will work for everyone.
As it typical, the Govt doesn’t care about the individual, only the masses. What a crock.
Back in the pain game, again.
I agree, Liz! Seems like we’re just spinning our wheels looking at some “new” version of the same thing. If we don’t understand what causes this disease, it will be difficult to stop it.
Thank you Dana, for the Great post!
And thanks to all the commentors on rawarrior for your insight – adding to my understanding and way to think about and try to describe what’s going so wrong re: RD treatment.
The lies in the commercials are sickeningly dismissive.
The pain that hunts us down is treated as a non-symptom. Their responses: get psychiatric treatment – or stop being a crybaby and get out there and exercise. (I AM trying to exercise! I used to love my exercise routine! But for decades now, the pain and the sickness have put up barriers, and exercise can cause brand new destruction I never completely recover from.) With everything I try to do, in any area, I have to remain cautious.
To the FDA, to the medical associations, to the arthritis association, we are “arthritis patients”.
God only will help us. The medical establishment and big pharma, will not. (how dare we criticize their medicines and methods! Don’t we know this form of “arthritis” is now controlled! Just stop your attention seeking, and get on with your life! …If only we could. Is there anything we want more?
I actually do repeatedly thank God that Kelly has never stopped her attention seeking – for our attention and for the medical industries’. I have followed the blog for almost 5 years. If only I had found it sooner. It changed my identity, and how I approach trying to get this genetic disease treated.
I have never found a more courageous community than the one posting here. I don’t know if I am up to their standards, but I am trying to be (some of the time, anyways, ha ha).
I have taken notes from the blog for years; which is enormously helpful. But to have “RA Unmasked” at my fingertips is much better. I tried to read it all in one night (lol). But I can pick it up any time now to read, reread, and underline (cautiously, with a rular).
If you haven’t bought it yet, try to do so (e-format or paper).
I am eager for the next book. But I know how impossibly hard such an undertaking as “RA Unmasked” is. It’s hard to believe it’s actually been done. This is an impossible dream for anyone suffering from this killer disease.
will continue trying to be an rawarrior,
Clare
Thank you Kelly for all you do to enlighten people about this terrible disease call rheumatoid arthritis. I have not bought your book yet but I do intend to get it. I am so happy to have found the RA Warrior website. The interaction between those of us who have RA is amazing. I have made so many friends that are almost like family. Only someone with RA can understand what this disease can do and how better to cope with everyday struggles. I appreciate what you do and pray there will be a cure soon. God bless you!
Welcome Kaye. I’m sorry you needed to find us, but glad you did.