Do this obviously is unscientific but. How many team members here feel like they have their disease under control? What does that look like for you?
Answer Summary
Members responded to a question about disease control by sharing honest, mixed experiences, with some finding stability through biologics like... Read more
It's hard to imagine right now.
The other day I read a comment from someone with ms and it resonated with me.
They were talking about the flood of rx drug commercials for serious diseases.. And they way the make it seem .. First they tell the story of how bad the person was and then they are perscribed xyz medication and then they show them running and climbing mountains and making 100's of bag lunches all these actives.
So it would appear hey this is great but that's not my reality .. At least right now and after 5 years it gets harder to hold on to hope that one day that will be me!
well, that's like walking down a very slippery slope because as soon as I say yes, I will surely have the worst flare imaginable!! I don't really like the word control in the same sentence as rd, but OK, I think I do for the most part as far as horrible pain of rd goes. I believe with my unwaivering attitide with the meds that I faithfully take, I have come to a place where I am doing ok. However, I have to say I was thrown a curve ball when in August I was diagnosed with fibromyalgia, so now it's a whole new thing to deal with. Since then, I have also been dxd with spinal stenosis, spondylolythesis & lots of oa also in spine. I don't know, it just seems like ra or rd is usually not a singular diagnosis, it has lots of cousins & they like to play together! Along this line, I have been wondering if anyone has had the Vectra blood test done? It is a measurement taken from markers in our blood that indicates how active the rd is in our bodies. I have had 2 done in the past couple of years, both indicate that I still have moderate to severe ra activity going on. So go fiqure, it is a huge puzzle to me!
@A myRAteam Member I so needed a laugh today Thank You
. Actemera (in conjunction with a few other meds) is working for me by keeping inflammation under control and I wanted to know why if it was doing such a grand job why the hell I couldn't play basketball with my kids, cast a rod even vacuum the house when my welcome dvd showed a lady better and playing tennis,
My rheumy said they should come with a disclaimer as after 38 yrs of the disease being uncontrolled for no more than a few months at a time my joints are beyond redemption. Although the meds are now restricting further damage nothing can fix whats already been done. I'll never be without pain no matter how well the disease is now controlled.
So RA is under control(ish) but I would love a (non surgical) magic bullet to fix the damage ;)
In May I couldnt get out of bed or open my hands till the MTX started working which luckily for me was within a couple of weeks. I do have some bad flares and like to see those dissipate then go away forever but for the most part I would say I am stable. Eating better and exercising again which is helping alot. RD is so unpredictable so I just dont know if I am really managing it for real. Like to be positive and think I am.