Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
Well it's now been one full year since my symptoms first struck me down. I just wanna say thanks to all of you that have gave me support, advice, and some ra 101. I have learned so much about the disease and ra meds over the last year, and it's been 90 percent from you very nice understanding people.
I have came to the conclusion that they can't effectively treat it unless you are just one of the lucky ones. Even if they get your ra feeling better, it's just temporary until the med stops working or the side effects get to much to handle. I can deal with it in its current condition as I have gotten somewhat use to my daily struggles with stiffness and pain. It will continue to get worse I'm sure to the point to where I won't be able to do much. My knuckles are already showing some bad stuff. Half of the meds we take, they don't even know why they work but that they just do. What kinda answer is that for strong poisonous meds they are asking us to take.
Started with mtx and weathered through the side effects for 8 months only to be removed because of elevated enzymes. I didn't mind since the mtx wasn't doing anything for me anyway. I've been taking plaquenil for the last 4 months without any results. My rheumy seems great and I have no complaints as I feel he is doing the best to treat me and my ihardheadedness. I don't even know if thats a word. I think he wants to try avara or possibly a biologic next but I'm not sure I wanna go this route. He says the plaquenil just isnt strong enough for my condition and will change some things around pending on some bloodwork results. Ive been off the mtx for over three months now so hopefully my liver numbers are looking better. The side effects on the bios are scary as heck. I do know one thing is I'm gonna give it another try or two with the meds and if I don't get anything to work in the next few months then I might just throw in the towel. It's a shame when it comes down to pick your poison. Sorry for being so negative but I'm just fed up at the moment. Thanks daily strength for giving me this great place to spout it out.
I have came to the conclusion that they can't effectively treat it unless you are just one of the lucky ones. Even if they get your ra feeling better, it's just temporary until the med stops working or the side effects get to much to handle. I can deal with it in its current condition as I have gotten somewhat use to my daily struggles with stiffness and pain. It will continue to get worse I'm sure to the point to where I won't be able to do much. My knuckles are already showing some bad stuff. Half of the meds we take, they don't even know why they work but that they just do. What kinda answer is that for strong poisonous meds they are asking us to take.
Started with mtx and weathered through the side effects for 8 months only to be removed because of elevated enzymes. I didn't mind since the mtx wasn't doing anything for me anyway. I've been taking plaquenil for the last 4 months without any results. My rheumy seems great and I have no complaints as I feel he is doing the best to treat me and my ihardheadedness. I don't even know if thats a word. I think he wants to try avara or possibly a biologic next but I'm not sure I wanna go this route. He says the plaquenil just isnt strong enough for my condition and will change some things around pending on some bloodwork results. Ive been off the mtx for over three months now so hopefully my liver numbers are looking better. The side effects on the bios are scary as heck. I do know one thing is I'm gonna give it another try or two with the meds and if I don't get anything to work in the next few months then I might just throw in the towel. It's a shame when it comes down to pick your poison. Sorry for being so negative but I'm just fed up at the moment. Thanks daily strength for giving me this great place to spout it out.
I'd totally be willing to try these again. I'm not mad they didn't work but I am angry I hurt and that my symptoms continue and aren't typical. It's easy to get scared and angry.
I hope you find a drug that DOES work for you. Hurting 24/7 is just not right!
It seems to me that getting what might be called a full remission from any drug treatment is a rare thing. For most people, drug treatment success falls into a big gray area that may change over time.
My analogy is a pot of boiling water. For me the MTX has turned down the fire but the pot still boils if I stop tossing Prednisone ice cubes into it every day. I am currently at 3.5 ice cubes, down from 6 at one time. My goal is to turn the fire down to a bare simmer where I can stop with the Prednisone and it doesn't boil over. I no longer expect that I can ever turn off the fire entirely, but I haven't found the right drug combination and dosage yet to get that low simmer. I may add Plaquenil/Sulfasalazine in the near future. Hope that works because I can't take biologics.
First 3 months were intolerable-I was an invalid-unable to attend to my own personal needs.
MTX for a few months along with 40 mgs of prednisone got me back to functional. It was a looooonnnnnnngggg taper off the prednisone.
Once I was on less than 15 mgs I had pain. Not intolerable however. Just never was pain free again and never felt well like pre-RA Tried Humira for awhile with the MTX-didn't see significant improvement but got some sinus infections. I hated self injections and stopped.
Year 3 on MTX my liver enzymes elevated and it was stopped.
They returned to normal. I felt no different off the MTX than on so dr. decided to keep me off but monitor me every 3 months.
I was so bad at presentation that the dr. didn't take me seriously at my appts. when I would look like the picture of health despite my daily tenderness in joints and feeling unwell. Late 2014 I had a bad enough flare in the wrists, hands, ankles feet to cause swelling which I took pictures of and brought to my RD visit,
Wow- that caught his attention and he put me on prednisone which took care of the flare and caused me to gain 10 lbs so far, my belly bloat looks even worse and I am tapering off. So now the tender joints, slight swell etc.- he has started Plaquenil. I dislike MTX because I enjoy a nightly cocktail and damn it RA is not going to rob me of it. As I said- it never allowed me to be pain free or gave me a feeling of well-being anyway.
Just started it so we shall see.
I have accepted my new normal. I don't ever expect to be pin free and as long as my tender joints don't stop me from going to work or brushing my teeth, holding a pencil etc.... I'm happy.
I just wanna say thanks for listening and taking a few minutes to share your experiences. Sometimes you just have to gets things off your chest and what better place than here where others share a lot of the same struggles. Finding the right meds is challenging. Dealing with the anxiety and not knowing what the disease holds for my future is tough. I still count my blessings and realize it could always be worse.
Pw
A year ago, my doctor tested me for the MTHFR gene mutation and I have it. Sounds bad, but the good news is that it's super easy to treat. I stay away from folic acid and take a special sort of folate.
The MTHFR gene mutation makes it hard to absorb folate from food and folate is critical to cell function - especially to neurological function.
They're not positive RA is impacted by it, but mine seems better. Especially in terms of strength and energy. I just feel so much better.
The test is cheap (under $100). And I got my folate tested at the same time so I knew how much to take. The folate runs about $7/month. If your doctor won't test, you can get the MTHFR part tested through 23andme for $99.
Hope it gives some folks a good answer.