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Rheumatoid Arthritis: medications don't seem to help

Oct 23, 2014 6:00 AM

I have Rheumatoid Arthritis and have been on many drugs: methotrexate, hydro chloroquine, Leflunomide, and prednisone (not all at once). I have also taken Humira, Remicade, Enbrel, Xeljans, and a few others, one after the other. I have now been on Orencia since March. I was hoping that it was starting to work, but I don't think so. Has anyone else experienced this? I know of people who have been helped by these medications and now have very little pain and joint damage, so I know they work for some.

Oct 23, 2014 7:59 PM

I'm using Enbrel for Psoriasis and these biologics are a b... I don't have an answer for you but will be happy to ask my rheumatologist when I see him next week.

Oct 24, 2014 4:55 PM

I've been on Orencia since March as well. I have confidence that I'm better than I was on Benlysta, but no empirical proof. Honestly, I rely a lot on pain meds. I have not had any ill effects at least. I wish prednisone and cortisone did not come at such a high cost! I know they make me feel better, and able to do more. I am very fatigued and have really poor sleep. I'm tired and sleepy all the time, but I have trouble sleeping at night. Sorry I didn't really answer your question. :(

Oct 26, 2014 11:44 AM

Hi! I have been on Plaquenil, Methotrexate,Humira, Enbrel and Orencia. I have also been on tapering dose of Prednisone a few times a year. I have to say that the 1st time I was on Enbrel and Methotrexate was when I felt good. However, I had a upper respiratory infection and my Rheumatologist took me off on both meds and started me on Orencia and Arava. I tried Orencia for approximately 6 months and I did not feel like it worked on me. I switched to Humira and still did not get relief. I'm now back on Enbrel for 8 weeks, I hope that i will feel better soon.

Nov 03, 2014 9:37 PM

I was on a infusion called a actemera its amazing I went in in a wheelchair and came walking out unfortunately insurance won't pay for it so I lost it my advice if u have jra or ra ask for actemera

Nov 06, 2014 11:50 PM

If insurance does not cover it try getting the manufacture to help pay for the cost I take Cimzia and they have co pay assist program

Nov 07, 2014 6:48 AM

I've been on mtx, humera, enbrel, cymbalta, orencia, plaquenil, and prednisone. I recently stopped taking the plaquenil due to increased pain, fever, vision changes. Nine of these meds give me the relief I think they should. I've decided I might be asking too much, that I'm not going to feel as Good as i think I should. Currently on prednisone dose pack. I hope you have better luck in your journey than I have.

Nov 18, 2014 9:35 AM

Janmar- I'm sorry to hear about your struggles. By any chance, do you have Sero-negative RA? One differentiation of Sero-negative is that blood tests don't show positive for the RA factor. The reason I ask is because I have Sero-negative RA (SNRA) and my rhuematoligist told me that SNRA is most likely a subset or form of rhuematoid arthritis but that it is often far more difficult to diagnose because it doesn't test positive to the typical tests and is far more difficult to treat because it doesn't respond to the typical blends of medicines that RA does.
I, too, have been on plaquenil, leflunamide, Cymbal ra, prednisone, methotrexate tablets, methotrexate injections, humira, Orencia, and am now on actemra injections. I don't know yet if it works - I am just 2 doses into this new regimen, but I do know that when I started this medicine, the rheumatologist told me it was the last medicine he could give me to inject at home. The rest would have to be administered via monthly infusions. I have been hesitant to try those since the regular injections have made me so sick with no results.
I did have a period of time where I was feeling a bit better, but the combination of Orencia and methotrexate injections caused me severe, stabbing pain in my stomach and I had to stop both. It was when I stopped methotrexate that I gradually became worse and worse as the medicine left my body. The good news is that if actemra does work, even a little, I can increase the injections to weekly and can still add in methotrexate to further fine tune.
In my opinion, you have to have either a fantastic Rheumatologist or a fantastic general practitioner that is willing to fight with the Rheumatologist. I am fortunate to have both now, but I went through 4 rheumatologists before finding the one I have now.
Hang in there!! I don't feel significantly better YET, but absolutely believe I will. Sometimes, just having faith is all you have, but it seems to be enough for a while until something can change. Give your meds however long your doctor feels is necessary and then demand a change if it's not working. I do believe that the rheumatologists care a great deal but can get frustrated like any of us.
My kids and I will say a few prayers for you tonight - hopefully you can get some short term relief from one of your doctors! Hang in there!!!

May 06, 2015 12:01 PM

None of the medications worked for me then we tried Simponi infusions and that has worked like a dream. Not sure if it is the drug or having it administered by infusion. Then much of my issue was my expectations and lack of information being given me. I had no clue I was stuck with RA for the rest of my life and these drugs may or may not allow me to have a fraction of the life I had before.

Don't allow, "giving up," to be a part of your struggle. Get mad and fight back, take control and if your insurance refuses medication that is helping then demand to know why. The reason we pay for insurance is to save and extend our lives, not to give them the power to decide if we are worth saving.

Take control, it feels good! :-)

Aug 16, 2015 11:23 AM

Im 45 I was offically diagnosed with RA about 5 years ago... I have Sero-negative RA (looking back i started showing and symptoms in my early 30s) suffered a great deal years before that .. the final dx was fibro because no one had any ideas before i got lucky with a rheumatologist who looked beyond the blood work. I cant take metho because i have a lot of nodule damage due to how long i went un diagnosed. So they started me aggressive right away. Originally started enbrel which offered quick relief for about a year but it only kept the moving flares at bay as long as i was mostly idle .. i was still always stiff and in some kind of pain most days. I was afraid to switch meds but finally switched to orecncia infusions about 6 months ago. My doc warned me it would take about 6 months before i would know if it would be helpful or not so you might need a couple more months before u will start to get any relief.

I feel better than i have in 10 years and ive been able to do things i didn't think i would ever be able to do again. Like yard work.

I started to feel good about a month ago . Had a great productive 2 weeks then not so great for about a week and a half then back to how good i felt the 2 weeks prior.

Unfortunately i think we will always have bad periods no matter what medication we find to be some what helpful. I've learned not to get too excited when i have a good spell cuz it really messes with my head when i get a bad spell. Ive learned over the years what is more likely to trigger flares (stress is a huge one) and I listen to my body .. i used to stop doing whatever i was doing when it starts to hurt. . Now i stop before that whenever possible because i have a better handle on how long my body will let me do something before it will cause me pain.

Its a long and slow process learning how to take care of yourself with this kind of disease. I honestly never thought i would be able to say to someone else don't give up or loose hope because you will find a treatment that works for you and they are coming up with more options everday! I wish you the best of luck and hope u find one that helps you soon even if it does not turn out to be the orecncia.

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