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...
It's been a tough last couple of days, and I'm looking for some advice / perspective. I've been luckily to be pain free for some time, but over the past couple of weeks several one-off aches are making me think this is something more than random, non-RA things.
I'm still on my high-test cocktail of Enbrel, MTX and plaquenil, but have had shoulder pain and lots of pain in my hand, esp where my thumb joins my palm. I've been attributing things to working out / different routines at gym, but I'm worried it is more than that. But what is dif than when I was diagnosed is that the mornings are good and things get worse as the day goes on. I'm really worried that the drug induced remission is going away. So in the meantime I've gone back to the GF diet plus all the naturopath stuff I'd stopped (still on meds).
For any of you who have had remission (drug induced or natural), what happened if it went away? I've been so lucky to be good for the past couple of years, and so scared it's changing. Is a flare the signal it's over, or can they be isolated?
It's a while til I see my rheumy - I will call her next week but wanted to check in with all of you over the weekend.
Thanks.
I'm still on my high-test cocktail of Enbrel, MTX and plaquenil, but have had shoulder pain and lots of pain in my hand, esp where my thumb joins my palm. I've been attributing things to working out / different routines at gym, but I'm worried it is more than that. But what is dif than when I was diagnosed is that the mornings are good and things get worse as the day goes on. I'm really worried that the drug induced remission is going away. So in the meantime I've gone back to the GF diet plus all the naturopath stuff I'd stopped (still on meds).
For any of you who have had remission (drug induced or natural), what happened if it went away? I've been so lucky to be good for the past couple of years, and so scared it's changing. Is a flare the signal it's over, or can they be isolated?
It's a while til I see my rheumy - I will call her next week but wanted to check in with all of you over the weekend.
Thanks.
Well after a rheumy visit and some common sense, I decided to cut back on what I was doing. I went from walking an hour every day to 30 minutes every 2-3 days. And the pain has not come back. I've learned from this group to pay attention to my body, and not to put too much pressure on myself. With RA, I have to admit that what I was able to do 3 years ago is not possible now.
I think we all just have to adapt as the years go by.
I'm curious to see what your rheumy says. Can you post an update when you hear back?
I hope you are still in remission and just need to adjust the stuff you are doing.
Have a great day!
Debbie
HOW LONG have you been on this cocktail? Some stop working. But the good news is there are lots of nredrugs coming out every day! I am now on Orencia and meth for 3 years of total remission!
OR, you might be having what I personally call "break through pain" ...or, you may be doing too much ....but if it persists or gets worse, see your doc, you may need a change in meds.
RASS, I've been on the triple-combo for just over 2 years, and have been in remission for almost the same time. She is scaling my drugs back, we have reduced MTX from a high of 0.8 ml each week to 0.4 ml each week (have reduced this over the past 18 mths gradually). Thinking by her is that she wants to have me at the lowest level of drugs to maintain remission, but acknowledges risks of the side effects of all of them, and wants to reduce exposure if possible. I'm on board with this plan, and while I've been feeling completely normal I worry about relapsing. I also worry about long term damage from the drugs. Yet also worried that by scaling back MTX that I'm building up antibodies to Enbrel. It's never easy! When we discussed what it would look like if it came back, she was honest - not a lot of people in my situation, but felt it would 'grumble', rather than hitting full strength overnight.
Debbie - I think (hope) you are right. I've been pushing things more lately, and may have overdone it, but never sure of whether the beast is back, or if I'm just too old to be keeping up with the 20 year olds in my gym classes :-)
WVMel - hopefully things calm down for you soon this summer.
I will keep you posted. Thanks again.
Achy.
There will be some bumps in the road. As with most chronic diseases it's not as simple as you find a treatment and that's it. So, in this case, it does sound like lowering the mtx led to some "break through pain."
relapse is not a term I have ever heard use din regards to RA. I have either been in remission or flare up for about ten years now. Either my biologicals are working and i am FIBE< like I have no disease at all, or every inch of my bod is SCREAMING in pain when they cease to work and i have to on pred until a new biological has time to kick in...that's been the course of my disease, as i said for the past decade. But everyone's path is different...
It is always a balancing act, balancing the side effects over quality of life. i go for quality of life every time because for me, life without biologicals is UNBEARABLE and not worth living!
Unless you have another major health risk, I advise doing the same. not worrying about long term risks cause it will just make you crazy! Every drug has risks!!! I have been taking all of this while battling LIVER DISEASE!!! there were treatments for my liver disease i was not allowed to take in order to stay on my RA meds. Those were difficult choices, i made them together with liver specialists and my rheumatologist. I am currently undergoing BOTH...new treatment for hep C while still on Orencia and mtx. It's been rough, but i;'m doing it...I get nausea at least twice a day, my heart pounds and i have trouble breathing, especially in these intolerable heat, and other side effects, by I am persevering...with ANEMIA...
I wish you luck. It's a long bumpy road... buckle up and always keep focused on the positive, there are a lot of diseases far worse than RA, and there are these wonderful drugs available for us now that weren't there when i was diagnosed almost 40 years ago...I became crippled and deformed prior to getting on biologicals! I am very GRATEFUL for the and for my wonderful docs!!!
Focusing on GRATITUDE is what keeps me going...that, and humor! We all laugh that no one knows what i'm pointing to cause my hands are so deformed!!! In my hep C Ds group we make all kinds of sick jokes!
http://www.dailystrength.org/c/Rheumatoid_Arthritis/forum/16709424-imprtant-info-re-treatment
"Relapse" is a term i associate with substance abuse treatment and kinda points a finger on the victim. Our disease is always there, we are either controlling it to a level of comfort or not..... HOPEFULLY, to FULL comfort, i.e. remission! But it's an ever changing game, as I said. I don't know how long the longest remission ever achieved to date is....I've been in remission almost a total of ten years with 2-3 major flare ups in between. I consider that a major achievement and if I can live out my life like that, I'll be very happy!
Before biologicals, my life was with RA was constant pain with mild relief and one surgery after another...and being a human guinea pig for every new drug and theory including gold injections.......it's all documented on my blog:
http://www.RA-SS.blogspot.com