This is my 4th biologic (Orencia) and getting ready to start on my 3rd DMARD (Sulfasalazine). I have been on Methotrexate, Enbrel, Cimzia, Leflunomide and Actemra. Nothing has helped. Last 2 days I can hardly walk because of the pain in my hip. RA is a nasty thing. All i want to do is cry from this pain. Not sure if we will ever find the right combination to make me feel better. Trying to keep my spirits up so I dont put a damper on my kids and grandkids Xmas. Anyone else had trouble with their medications not working or tried other treatments that have worked for them ?
Merry Christmas to all of you, hope it is pain free
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Cin111
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Unfortunately a lot of us here have taken a long time to get settled on the right medication....so don't be too despondent....it will come right for you.
There is an answer for most people, but it does take time having to explore different combinations to hit just the right doses.
Are you takin any sort of inflammatory....that often helps dull the pain?
Try to enjoy Christmas with your family...but let them help out....you don't have to be Superwoman!
I haven't had much luck as yet. Tried sulfasalazine and leflunomide, and am due to start methotrexate. It can be very disheartening can't it...but I'm hopeful.
I get very impatient with myself. There's so much I want to do and can't due to agonising pain. I'm trying to just not push myself too much. Invariably when I do, I get awful pain, and the knock on frustration, and this just makes me feel worse!
Try not to do too much, and enjoy your family. I'm currently staying with my son who lives with a bunch of delightful (but messy) hippies. I'm resisting the urge to tidy up!
So sorry to read your plight. I too have trouble with my meds so often have to take breaks while I recover from side effects. Exercise helps a lot as well as supplements such as turmeric, ginger, garlic, which all have natural, anti inflammatory properties. I sympathise with you- the pain wakes me so early and it takes so long to get my joints working to be able to deal with the day. Wishing you all the best and happy christmas
Same here I have stopped Leflunomide after months of feeling so ill with nausea fatigue and night sweats. Within five weeks of stopping sweats and nausea have stopped. Still get tired but like you trying different supplements. Hip a problem just now and this wakes me early. Hope you have a good Christmas.
Hi Cin111, it’s a journey! I’ve had psa for 16 years and I’ve pretty much tried everything from metho, through to tacrolimus, then biologics, humira, enbrel, cimzia, remicade. Had to give up work 5 years ago as just couldn’t function anymore. I’m now on Stelara, hydroxychloroquine, celecoxib, co-codamol, supplements of curcumin, vit c, pro biotics, and recently added cannabinol, I’m not amazing but I can function for a few hours a day and I have a better quality of life than I have done for a while so I think you embrace that and be grateful you can do much at all! Have a great Christmas, go gently! X
Oh man .. you have been through the medications too. I too use CBD creams and lotions. They seem to take the edge off but I totally understand the embracing the good hours of the day. I truly never thought I would feel this bad most of the time. I hope you find some comfort during the holidays.
I know how it is. I did find that counselling, the pain clinic and various other methods helped me deal with an unpleasant reality! Acceptance also just made me feel more empowered if that makes sense. I really feel for you, and hope you have a lovely Christmas 🎄 x
Hoping Abatacept will be the one for you - it was for me after having Enbrel giving up on me after 7 years. I tried Humira for 9 months, a cycle of Rituximab and 5 months on Tocilizumab with no relief. Finally (but only after 9 months of taking it although some improvement after 6 it was not enough) Abatacept worked and changed my life. We kept trying the Abatacept as at the time I was running out of options and apart from 200mg hydroxychloroquine my body does not like DMARDS. Farm
Hi Farm. This is the biologic my consultant has placed me on. Starting in Jan, it’s tucked away in my fridge as I am a little apprehensive to be honest. Currently on MTX and hydroxy. Alas inflammation still in feet. Markers down though! My consultant feels this is the way to go. He has convinced me into taking, claiming many people don’t get this opportunity due to cost. However, it is a stronger but targetted drug. Do you experience any side effects?
In the early days the next day after injection I was very tired but not so noticeable now - I had to change injection day. My WBC and neutrophil counts are often low but due to not having any issues with this I was allowed to continue. I think it has pushed blood pressure up slightly. Overall it has been brilliant (once it kicked in). I find I have far fewer side effect on the biologic group than the DMARD group. I was so bad when I started it there was really no option but to try and perhaps that was why it took so long to work. Farm
I hope so too. I have been on it for only 3 months, keep hoping one of these days it will start working. wow that is crazy it can take that long. I guess I might still have a long road ahead of me. You have a very safe and happy holiday. I hope its a pain free one.
I've only been at this since Sept and have only been on MTX which produced inflammed lung so went off and started Leflunomide. I can hardly walk this am my hip hurts so much. I feel your pain. I find this to be a cruel, exhausting, and compassion less disease due to lack of understanding of those that don't have the disease. Merry Christmas
I’m also on methotrexate started it in July this year and injections depo-medrone and on Wednesday I started sulfasalazine so it’s early days on it for me x
Yes, I have tried about 10 meds and only a couple have worked. Humira worked for about 18 months and Enbrel worked for about a year. Can’t tolerate mtx and am now on sulfasalazine. I recently started back on Humira about 6 years after it quit working. It worked pretty well for about 9 mos. Will be using Enbrel again after 1st of year. Just wanted to let you know you’re not alone on the no meds work merry go round. I am on prednisone again and may need to stay on it for some time. Maybe you can use that for a while during the holidays? RA is an awful disease. I try to remain hopeful that they are working on more meds and will soon find one for the many of us that haven’t found anything that works consistently. All my best to you!
I have had to take my Medrol (methylprednisolone) , cant tolerate prednisone. And it helps ease the pain but I sure don't like steroids. I just wish they would find one that worked for all of us.. My rheumy is going to the new pill one if I fail Orencia. I would rather a pill a day then a shot anyway. Out of all the biologics that I have taken I really think that Enbrel worked the best, it just didn't work for very long. I hope your second time around works for you.
I hope you find something that will eventually help you. Cimzia works well for me along with taking tumeric, ginger and juicing. I eat mostly organic foods and stay away from foods that cause inflammation.Try research a diet for arthritis. I also work out 5 days a week. I know how the pain is for this disease. Wishing you less pain
Thank you. I know I should change part of my diet, I try to eat non flammatory foods as well... but I have such a weekeness for dairy ... cheese .... lol and I know it is not a great food with our disease
I have tried all the conventional meds and was allergic to sulpalazine, leflunomide and methotrexate sent my liver results up the creek, following diagnosis 21/2 years ago. I have been on my first biological Benepali for 5 months now and the pain is worse than it ever was. Like you I am struggling to walk, sit or lay in bed comfortably and am trying to put a brave face on it until xmas is over. I’m due to see rheumy on 2nd January and hope. I know it can take a long time to get the right combo but I wish for all of us that have still not found it an answer in the new year. For everyone here I wish you all a happy and pain/problem free Christmas and new year.
Thank you. I feel for you too, and I hope you can find some pain relief. Never heard of Benepali ... Hope your rheumy takes you off of it since it isn't working and puts you on something else.
I feel your pain. I've tried ldn, prednisone, methotrexate, enbrel, cymbalta, lyrica, trazadone, diets, accupuncture, chiropractic, supplements, creams, medical marijuana, and a bunch more. Aside from slight relief from massage and pain meds, the pain is never ending and makes life living hell.
It's a lonely existence having to hear "see you in 3 months" from doctors time and time again. It makes you feel like you're never going to experience relief, wonder how you're going to pay the bills because of how hard it is to work, it effects your relationships. The fact there is no better system in place to help people with this disease is a sad thing. How are we suppose to pay for meds and bills if we can't function or think properly.
Hang in there as long as you can. I guess that's all we can do. It's tough I know. As others have said, don't feel you have to pull too much weight this holiday. Let friends and family know you're hurting and they will hopefully help out with things. Hope you find some relief shortly.
Oh my gosh ... the see you in 3 months .. such a nightmare when we feel as we do. I so understand your comment. I never would of thought years ago that I would be in this position, And somedays it is so hard to accept that we are going to be in pain everyday. Worrying about the bills is why I still continue to get up and go to work. It is so painful. I have tried CBD and it will ease the pain .. has a small bit of THC in it. But it still doesn't take it away. It only eases it for a small while.
Thank you for your kind words. You hang in there to.... Hope your find some relief as well.
Still trying to sort myour meds. Done hydroxy chloroquine and sulfasalazine still on methotrexate. Only pain killer I take is cocodamol. Start on biologic on Friday (baricitinib ) have also had more or less continuous steroids for 6 months. Still early days for me (16 months) so live in hope. Keep strong and hopefully have a better new year x
I understand absolutely as don't think I have yet had the right mrdication. The Orthopaedic Consultant carried out a mobilisation of my hip and packed it with drugs. Unfortunately instead of helping the hip last a while longer, the opposite happened and now I am in a list for a replacement hip. They say it will take nine months to recover, so I wonder what drugs will be used next??? Good luck in the New Year.
That is terrible. I hope you get that you have better success with the hip replacement. and have a short recovery time. Sending good thoughts your way.
my doctor has been trying to find something for the last two years that will work my liver can't take the pills even on a low dose. So I am not allowed to take any over the counter stuff for pain like ibuprofen. Even when I had strep throat I was not allowed to take anything because of my liver. Right now i am on enbrel and I don't think its working because I had to take 15 mg of prednisone this morning so I could use my arms and hands. I go back next month and she said something about starting iv's if it still isn't working. So that will be the 5th medication I will be trying when I go in. I am so over being in pain all the time except when she ups my prednisone and then I want to eat everything.
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