I love the app! Anyways, I was wondering if anyone else still suffers from flares on Enbrel. After six shots I was feeling amazing, then BAM!! I spent several very busy days on my feet preparing for my daughter’s graduation. By the actual day of graduation my feet and ankles were so swollen and tender I could barely walk along with my bakers cysts. Suddenly my whole body began flaring again. My rheumy added mtx back because he felt that my improvement may have been in part because I still had some of the methotrexate in my system and over time it wore off. I am still waiting to see if it will improve with the combining of the Enbrel and mtx. Meanwhile it has been a severe blow to my morale. So sad …
Hey TigerGirl,
I was on Enbrel a few years back and it worked ok, not great. Then it just stopped having any good effect on me so switched to Remicade. I think most bialogics work better with Methotrexate. I'm not having much luck with any of the drugs. I'm full time in a wheelchair now. The most my meds do is keep the major flairs to a minimal, but as soon as I start to walk around I get them again. I hope the mthx works for you
Yes I get flares if I over do things or get stressed. My rhuemy likens enbrel to a blanket with a few holes in it which allows some inflammation through at flare time. I use a three day course of 20mg a day prednisone but I believe MTX and Arava are also used. Once I hit the flarewith pred. I have been quickly ok and they seem to be getting further apart.
Thank you Terri_d and Allan for replying. I’m a little new to this and learning quickly that it is going to take some trading medicines to figure out what works. I really didn’t want to go back on the mtx bc it made me so sick but I guess I’m gonna have to suck it up. My doc did reduce the dose so hopefully that will help. I am so bummed about how bad this flare up was and how it has lasted… Like is this the new norm? Every time I stand for any length of time now puff go my knees, ankles and feet. I think you’re right , Allan, I am gonna have to break down and take my emergency prednisone… Oh how I hate that stuff. It’s comforting to know that I am not abnormal.
Hi I don’t feel as though I get flares coz my symptoms never go away. I feel like I’m in a constant flare and have been like this for the last 3 years. I am currently taking Enbrel and have been since January but it hasn’t worked for me hope I find something soon because I’m losing the will to live xx
Catherine,
I rea your bio. You have had PsA for such a long time. I can only imagine how much strength it must take to overcome this disease day after day. You are truly an inspiration to me! You must not give up! Each of us has gifts and blessings to offer the world. What are your loves and hobbies? I know you must be so tired from the constant pain. Can you switch to another Rheumatologist? If you are feeling despair the worst thing to do is do nothing. Please go to your doctor and share your feelings because they are completely understandable. This disease sucks! But you are bigger than it and deserve a beautiful life. It’s not fair that we have to fight so hard to be heard, believed or understood. Hugs to you!!!
Hi Tigergirl I think I am just having one of them feeling sorry for myself days I am going to see the rheumatologi on the 20th so will tell him then he wants me to stay on the Enbrel for another 6 months and try leflunamide on top just wish I could find something that works. The more it drags on the more negative I become in thinking that I will ever find something that works. I am quite a strong willed person most of the time but like everyone else I have bad days think that today is just one of those. I am just about hanging on to my job hoping that i will be better soon I take each day as it comes and don’t think to much beyond that I cope better that way. I try to look at the positives in life like the children I have a nice home and never really want for anything so should be grateful in that respect. I have a little allotment at the bottom of the garden and a greenhouse full of plants and that is my hobbie when I feel upto it if not the children look after it for me. don’t worry about me the sadness will not last to long I usually pick myself back up and keep on going. Hope your flare is over soon thanks for the reply you made me feel so much better take care Cath xx
Well having a bad day or five is certainly to be understood and I am right there with you. I have had to reassess my hobbies since getting this disease. I used to be able to strip wallpaper or paint an entire room, knit and crochet, or even refinish furniture. NOW I have to ask for help for so many things I get frustrated and mad at myself. And the fatigue annoys me. Kudos for you to being able to work! That alone is a feat to be proud of. I used to teach but quit about ten years ago. Since getting PsA I have started painting pictures instead of walls and I,too, have a garden! My husband built me a raised bed garden this year. I really enjoy it. He even put benches around the sides so I can sit and garden. I painted it a color called weathered glass, sort of a pale turquoise blue. I also like to do canning and sewing. I just made homemade vanilla extract and homemade stevia extract. I finally figured out I had to do what I can do and enjoy it. The frustrating thing to me is my weak immune system. I catch everything! And once I catch it there is no shaking it. I am very ill right now with a terrible cough and no voice, but I refuse to take antibiotics because then I would have to stop my methotrexate again. I feel like there is always a roadblock. Thank goodness for our helpers.