I have been taking the tocilucimub injection for over 4 years to control the rheumatoid arthritis pain. It worked for one year but now I suffer from constant pain and joint swelling. All blood test looks normal but joint pain and tendinitis comes and goes week after weeks. My Rheumatologist is only interested in blood test but she is not really care when I tried to explain my pain for the past 6 months. Now the only thing that give me some relief is steroid injection every 3 months .I am able to lead a decent quality of life.
Are there new treatment for rheumatoid arthritis? - NRAS
Are there new treatment for rheumatoid arthritis?
You need to try to make yourself heard by the rheumatologist - perhaps write a letter explaining how you feel and that you wonder whether a different drug would help? Or whether the doctor thinks the pain is due to something else and, if so, what?
There are loads of drugs available and tocilizmab is not cheap so it's not a question of money.
Have a look at the NRAS website treatment pages. That will give you some idea of the large range of treatments now available.
Then you need to contact the medical team again firmly and politely with a list of why you think that a change is necessary. Blood tests are not the only guide!
Yes there are more drugs out there now.I was on Tocy for 7 years when it stopped working I am now on Baricitnib which seems to be starting to work.My last Rhumy used to say the bloods are important but more so how are you feeling as bloods do not show everything.
I have just changed from Tocy to Cimzia, too early to say if it is working but fingers crossed.
The nurse who gave me the loading dose said she administers 25 different biologics, so there is certainly choice!
Keep trying
Have your doctors said why you’ve been kept on a drug for three years if it’s not working anymore? Are you just in pain or do you have inflammation/swelling ? I’d keep on at them to get them to listen to you, it’s sad we have to be persistent like this but it’s the way it seems to be for a lot of people. Let us know how you get on and 🤞 for you that you are listened to soon.
Don’t let the steroid injections continue as your only treatment...it’s of course nice not to be in pain...but what damage is occurring?
If your doctor will not prescribe suitable Dmards...ask to be referred to a different rheumatologist.
Steroids have their part to play....but not as the only treatment long term.
I think that it is also worth remembering that biologics slow down the destruction rate of your Rheumy, it does not actually 'stop' it, so without meds it will be more destructive!
My dearest friend has been having injections at the hospital into various joints only so many a year and I do not know what they are. She has been having them for the past 6 or 7 years. She currently is in such pain she talks of suicide, She is on liquid morphine and recently was given an opoid tablet form. She has been referred to chronic pain clinic and said is did not help at all. She is 85 and takes little or no exercise. I have urged her to find a physiotherapist because I believe this would help her. I am 76 and for the past few years have had knee problems, my physio said it is because I am not active enough and have let me thigh etc muscles lose their tone and they are not holding the knee in place as they should, I also had a shoulder problem and had given up knitting, my physio urged me to start again to improve the muscle tone in my arms and shoulders,, I did and over a period of 2 years my shoulder pain is much improved and my fingers remain flexible and normal. This physio urged me not to have any injections if offered into my knees because he told me that although they help alleviate the pain they destroy tissue and ultimately will no longer work and the patient is left worse off, This seems to be happening to my dear friend, So, exercise seems to be the best help for arthritis but how much are doctors and specialists suggesting this??? And what about these injections? No one pointed out to my friend the consequences of them??? By the way I do leg exercises 3 times a week with ankle weights and have had marvellous results regarding my knees!
I totally agree - exercise is the key as well as eating right. Although I have a sore hand I push through as best I can even if it's 5 minutes of my day I shall do something. There are so many great videos on YouTube.
4 years ago with RA I couldn't even walk- I am so grateful.