It's been a long time since I've posted.
Almost 4 years since diagnosed. 4 years of nothing working. 7 drugs, nothing works. 4 years of constant pain that you all understand.
How many drugs are there? What if I go through them all and nothing works? What if I'm crippled before I'm 60? What if I can't do the things with my husband that we do together? What if we finally get that trip to Italy and I can't walk?
I'm scared, I'm so sad, and I'm hurting in every joint from my toes to my neck.
So sorry to hear that nothing is working for you, I,ve just been diagnosed with RA, so still early days for me but I wanted to say, live every day to the full and with no regrets.
I suffered a stoke in 2012 , affecting my right side of body and visual field, but with determination managed to get back a good quality of life.
I am determined to use this experinece to guide me through this horible illness, keep fighting and challenging the doctors and consultants
Good luck
Thank you
Dear Interpreter, I completely understand your dilemma. I have walked that path and on my last drug now Humira, so crap right. Weight gain hair loss and last drug
In my experience only I found that I needed to augment this disease with some wholistic help and meditation so I researched every herb that helps with inflammation. I changed some of my diet mostly keto, and take supplements that seem to help. This is the only way I feel like I have any control over this body of mine and not to be funny but I listen to meditation every night on cell regeneration and healing my body. The fact that I have to work so hard just to maintain some quality of life is annoying and makes me angry at times but I realize that those feelings of anger fear resentment, grief etc only stress my body out and make me more sore. I also see a therapist which helps me out as well. So I just accepted my body and my pain and try and be I. The moment. The supplements I take are Thundergod root , Cinnamon, Ashwaganda, Dragonfruit, L theanine, keampferol, Magnesium, Celery Seed, Juniper Berry, Saffron, Cholesterol less supplements and I think that’s it. Some of this is for high cholesterol, some for bringing down blood sugar, inflammation which all is connected for me to m’y RA. Good luck to you and you will get to a point where you will find what works for you and this will help you on your journey. 🙏
Thank you so much for the list. I will be checking them out. Blessings
Am hoping you have an involved consultant for RA. I have been through a host of meds but am now more stable. Cannot go all I could before but mostly joints are manageable. Occasional flares and more prone to infection.
Everyone ends up with a different mix. I have a baseline of weekly Methotrexate/daily hydroxychloroquine and folic acid.- boosted by etoricoxib and full round of paracetamol Plus weekly biologic Tocilizumab
I can walk my dogs a few miles, look after my Grandbaby, manage most household stuff cleaning out chickens etc. digging allotment varies - thst is not a two days in a row thing. Once or twice a year I may end up with a general steroid jab to reduce flaring joints but life is ok. I do also have osteo arthritis and have had both hips replaced now.
Important to keep track of your symptoms with all new meds. I have found that methotrexate though it disagrees with me on higher doses is manageable on a low dose and seems to keep the biologic from failing.
I am 4 years in now. I did have to take early retirement from teaching but also care for Mum and sister.
Big ups to all the rheumatologists at Bath RUH. They have been and continue to be amazing. Important to not be too stoical at times and make use of the rheumatology helpline for your hospital when needed. Good luck.
