Soon be into my 7th month without RA meds. Since stopping meds my consultant has refused to see me. My GP had no luck either. Finally contacted a patient advisor and I am in the process of writing to head of the hospital. I was on Tocicilizumab which helped the RA but caused severe pain in my shoulders. She wasn't interested that I was in tears with the pain as a box was ticked for the RA. I tried it for 17 weeks came off for. 5 weeks shoulders improved tried again for the f 13 weeks pain returned. Since then very little contact even via GP. Seen a nurse a couple of times but none of them came back to me. I am Trying cannibis but it is slowly stopping working.. Letter should go out next week. So many dates and reports to mention I have 2 A4 full of dates and notes from when all this kicked off. It has all been very trying. Let you know when a result is achieved.
A continuation : Soon be into my 7th month without RA... - NRAS
A continuation
Have you tried to be referred to another rheumatologist?
My GP tried but no result. My intention is to ask to be referred by hospital aftercresponsevto letter.
I know you have mention you are in contact with a patient advisor. Years ago an arrogant consultant rheumatologist told me he didn’t think I has ra! He even had the audacity to put in my letter to the gp, who let me know! I then wrote a letter to the head of department questioning why if I did not have ra had I been on DMARDs for years! Long story short I now get a look in from the department head(prof) every time I am changing treatment or challenging my treatment. Every complaint you write to the hospital has to be logged, fully investigated and responded to. The message is that as patients we need to be responsible for our health, this also includes patient choice. You have the right to stop treatment when the side effects are out weighing the benefits, your treatment should be a choice and negotiation of risk and benefits. Remember you are the one who will live with ra for the rest of your life and you have the right to challenge your treatment to ensure you have an acceptable quality of life.
Of note the arrogant consultant left the the hospital soon after my complaint, which must have been a bit of a come down as it is a regional centre for research.
Thank you for this I have never been a complainer but I am angry at being ignored by the whole department.
I hope it all goes well maggie and that you don't have to wait too long. x
I am sorry to hear this. I recently asked for a break in taking medicine and there were no problem with this at all. I explained to my rheumatology nurse why I wanted to do this and asked him to talk me through the risks. We agreed on a plan in case I had a bad flare up and he arranged for an appointment with my rheumatologist in February which suits me well. There were no tension nor judgement m. I felt heard and fully taking part in my therapeutic choices.
To me, it’s how it should happen every time. My nurse and my rheumatologist both are aware of the psychological effects of having a chronic illness. They are very caring whilst being upfront with risk and consequences. I am treated with respect and dignity and what I think or how I feel matters.
I am sorry to hear this is not the case for you.
Hang in there and yes have a word with PALS. I have always found them to be effective. I didn’t get on with my first rheumatology nurse and I was changed to my current one who is fantastic. Made a world of difference.
Good luck
Thank you encouraging words . I have never been a complainer but this time I am angry and disappointed at my treatment even my GP is frustrated .
Well Maggie you are doing the right thing. Your rheumatolgist sounds very intransigent. I too had a bad experience with tocilizumab. It affected all my muscles and shoulders and even though my bloods looked as I was in remission I was in terrible pain. Fortunately for me my rheumatolgist said he could not ignore how I was feeling and blood results do not tell the whole story so he stopped it after 16 weeks. The muscle pain diminished over a few weeks and I was put on Abatacept. The improvement was immense. A good rheumatolgist should listen to what you are saying about how you feel. Stick with it. You deserve to be listened to.
Sounds like you had the same affect from Toc as me. All these replies are giving me strenggh
Yes stick to your guns. Record all your reactions to the TOC (which I think you already have anyway) I know it works well for some but we are not all the same. I did a lot of research at the time because I expected a fight because my bloods looked so good but fortunately for me I was listened to. Good luck and let us know how you go on.
I will do and yes I have it all written down. Nurses haven't got back to me either. Too scared to go against the consultant. Thank you again a boost to my confidence will let you know
If it's any help, whilst I was doing my research, I found out that tocilizumab can cause myositis(muscle pain) but is considered a very rare side effect. I can't find the article at the moment but I will carry on trying.
It does sound insane. If you are in pain you should ask to see someone from the Rheumatology Department for an ‘emergency consultation’. A lot aren't doing F2F, but 7 months without meds should be a red flag surely. Deary me 🥺
Good luck. You’ve been having a really, bad time.
What can I hope for?
RA Doctors never tested my blood
How long to get on right meds?
Off meds as we want to try for our first baby
