Thoughts on overall prognosis of RA
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Hi All,
I was diagnosed in September 2014 with RA. I was put on Leflunomide 10mg but it felt that not much other than my foot pain went away. The dosage was increased to 20mg, but just about the same time I increased the dosage, I started seeing a new Rheumy, and she put me on Methotrexate of 15mg in stead of the Leflunomide.
Within a few weeks I could feel old pains come back that I hadn't realized the Leflunomide had taken away. She told me it was due to the change of meds (even though they are both DMARDS) and to give it time. Also, I was in line to get in on a clinical trial for Enbrel and the only way I could get on that trial was to be on MTX for 3 months.
Still, more pain and the loss of hair was much worse than when on the Leflunomide and the fatigue even felt worse. WhenI told my Rheumy this, this time she said that none of the DMARDS would really work for me because my RA was very involved and only the biologics like Enbrel would do any good for me.
Unfortunately, I found out recently that the trial I was supposed to start on next month closed before I could get on it. Needless to say, I was devastated. I had just kept thinking that all of the pain and fatigue would be taken care of when I got on the Enbrel and now it's not going to happen.
When I saw my Rheumy for my follow up a couple of weeks ago, again I told her that the MTX was doing less for my RA than the Leflunomide. This time she said I needed to give it 3 months. Well, I've been on it for 2 and 1/2 months and it seems that by now, I should be feeling at least a little better; not worse, right?
I work as a medical lab registration clerk and I see RA patients daily who tell me that the Enbrel worked for a short time for them, but stopped and even though they're still on it, along with the MTX, nothing really helps.
My Rheumy is out this week but I decided on my own to start taking my Leflunomide again and stop the MTX, since it wasn't helping and there's no clinical trials to get on at the moment. AND, it appears that Enbrel isn't the 'end-all, be-all' drug my Rheumy says it is. I know that everyone reacts to meds differently, but right now I'm feeling completely hopeless.
It seems like no matter what I end up on, I'm never going to get rid of this awful fatigue along with the daily pain and the bad flare ups. For those of you that have had it for several years, what is the REAL prognosis of RA? Will I ever feel better? Is there a good drug out there? I just feel so depressed and hopeless that I'm not going to find anything to help me. I can't stand living the way I'm living right now. Never knowing if I can work a full day, never knowing if I'll be too tired for events that I plan...I'm 50 years old and I feel 80. Thanks for letting me vent. I'm just feeling really down today.
0 likes, 25 replies
kim94523 slm222
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My dad had RA, my grandma, my cousin has it too... and - ironically - my nutricianist doc! She believes Humira CURED her and she's a naturopath! She believes it will be discovered in years to come that these (or similar biologics) can actually re-train the immune response to this devil-protein that is huring us. Although her MD doesn't know it (as she's supposed to be taking Humira 2x per per month), she weaned herself nearly off of it, taking it only once ever 6 to 8 weeks. And she had RA BAD... as in deformed fingers and toes bad. So, I am really optimistic about Humira.
I did Google Daniela's advice, which is good advice so you should too. In my case, I am quite sure my diagnosis is correct because of my specific symptoms, family history and Anti-CCP test, which can only be RA. Did you have an Anti-CCP test?
As for the MTX, my doctor told me MTX stops the "Human Anti-Human Antibody" (not a typo) that can cause biologics not to work. Apparently, biologics can stop working or not work because, like getting an organ transplant, biologics are from humans so the body can reject them. MTX stops the body from rejecting the biologic.
I also know from my dad and cousin that sometimes different cocktails of drugs are needed... and what works today may not work in a few months or years.
It sucks the big one for sure. But I think there is hope. I am near your age (48) and had to really mourn the loss of my old self. I still get escited to do things and plan them in my mind, only to try and get so exhausted, I literally cry from it... from the sheer exhaustion and the depression from the sheer exhaustion.
I hope you allow yourself to grieve this diagnosis and come out the other side feeling determined to find the right drug for you and, ultimately, remission and relief... for however long it lasts.
cheria kim94523
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kim94523 cheria
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cheria kim94523
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cheria kim94523
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slm222 kim94523
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Thanks so much for your response. Yes, I too have very elevated rheumatoid factor as well as extremely high CCP levels so we're quite certain it is RA. I know all the meds will react differently for each person and I'm trying to stay positive, but it gets hard sometimes.
I'm not on the Enbrel because the only way I can afford it is through the clinical trials where everything is paid for. I was supposed to get on a trial next mmonth, but they ended up closing it early.
I know there's probably something out there to work eventually, I'm just so tired of being tired. I wish you all the best!!
cheria slm222
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slm222 cheria
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I know what you mean about the Methotrexate. I did not like it at all. It actually increased my pain. And my hair loss was massive. My Rheumy said it's what everyone is on, but I saw no benefit from it. I'm not against trying a biologic, but I hear a lot of people, like yourself, get nothing out of it. Or it's short-lived. I just wish there was a magic cure. I have no insurance so it makes it tough. Guess I just have to keep thinking positive and hope for something that actually helps.
cheria slm222
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TreatMeGently cheria
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I have read a lot about methotrexate - and once read that it increases intestinal permeability (as gliadin does).
Given recent stuff about the role of gut immune responses to specific bacteria in RA - I am conjuring an image of King Canute holding back the tide of stuff flooding in to our bodies - perhaps the reason why Biologics work at first but eventually are unable to address the sheer load and variation of immune responses.
barbara58180 slm222
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Please talk to your doctor.
slm222 barbara58180
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I didn't go off drugs completely. I just went back to my other RA drug that I was taking before the MTX, which was helping MORE than the MTX. The MTX brought on more pain for me. More fatigue. I am tired of being tired and I'd rather get back on the Leflunomide than stay on the MTX. My doc was on vacation this week so I changed without telling her, but I did call her staff and tell them to let her know.
cheria barbara58180
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barbara58180 slm222
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So it's just my experience. You need to do what's best for you.
I now have a cray toe, I'm adding fish oils, lots of Voltaren gel, and it may. . . get better. Very frustrating disease. You just don't know what's going to work.
Best of luck to all!!!
cheria barbara58180
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slm222 cheria
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It is frustrating dealing with the Rhuematologist as she says one thing, but then changes and defends MTX on other occasions. At first she told me that none of the DMARDS would help me because my numbers are so high that the RA is in full mode. But then when I complained about the MTX not working as well as the Leflunomide, she told me it was due to changing drugs, and then it was because I needed to wait 3 months...when I had already been on it just 2 weeks short of 3 months. I find it hard to believe that 2 more weeks would make a difference.
I know she won't be happy with me changing the med on my own, but I know my body better than anyone else and I know that the MTX was definitely not helping me. I'll check out Magnesium supplements. Thanks again.
slm222 barbara58180
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barbara58180 slm222
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t even need the eye drops for my dry eye. Too bad.
Good luck.
I found magnesisum does nothing but help me sleep a little better, and too much will give diareah.
Good luck!
cheria barbara58180
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amy46043 slm222
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cheria slm222
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cheria
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