On Monday I had a call from a rheummy nurse asking how I was getting on (I was on week 10 of Benepali, had to have a steroid injection 3 weeks before). I explained I was struggling, particularly in my hands and wrists. Not great as I am full time carer to my 86 year old mum. She asked what I was taking to cope with the pain, and I explained I was taking tramadol, had a wee stash of steroid tablets that I was using sparingly. She said she would talk to my consultant. On Tuesday I had a call from one of the Registrars and she gave me an appointment for yesterday.
Fantastic I felt like royalty. My consultant said she would normally see 14 patients in a day now she is being restricted to 3 and they are only priority patients who are having problems however she can do telephone consultations (she wasn’t even allowed to do that at the beginning as it was if it ain’t broke don’t fix it, and they thought if they phoned patients they would get more to deal with) they were dealing with the ones who were contacting them as a priority.
Anyway after an examination, I got a steroid injection into my hand (yes and it hurt like hell). We talked over the options (this will be my 6th different treatment) and I opted for another weekly injection rather than daily tablets. She gave me steroid tablets to take until I feel better with the new drug. I opted to go ahead with Tocilizumab and really hope this is the drug that is going to make me feel better and turn my life around. I have had R.A. for over 20 years but the last 18 months have been pure hell.
I had my bloods taken and shown how to do the new injection. At no time did I feel unsafe, in fact it was the opposite.
My R.A. team are complete angels and make me feel so much better. Please nobody suffer, if you are struggling contact your R.A. team.
Written by
Knit12
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You are so lucky to have such a fantastic team that give you confidence.
Unfortunately for my care, two consultants left the staff (one relocated, one retired) two years ago and have yet to be replaced. Consultants came from other hospitals to do occasional reviews, but there is no follow up. The specialist nurse who I can contact is not good and, I think, is so overworked that she muddled me up with someone else on one occasion and wrote referral letters which were about someone else's history and problems.
So sorry old timer I know I am very lucky. I relocated 2 years ago and was worried after having a very good team where I was. I was so relieved to find I have this particular consultant as she says stress is to be avoided and it must be stressful for you going. Have you ever commented on the service you get there is a UK site that allows you to anonymously comment on your treatment for Your particular hospital. They have to read it and respond and will direct your comment to the particular people involved. I will dig out the name of the site and post it
I am so happy you've got such a good rheumatology team helping you. It makes all the difference when you feel listened to and are treated like a valuable patient.
Great news that your care is good I’m on this drug and it’s been the best one for me so after failing on 3 other biological drugs I’ve also been taking off methotrexate as it was affecting my lungs and liver xxx
It sure is I’ve now been on sulphasalazine, methotrexate tablets, methotrexate injections, Amgevita and Benepali. Really hoping this works. The good thing about Benepali was I had no side effects but it wasn’t controlling my rheumatoid arthritis. Very swollen and painful joints. Hope it gets better for you x
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It makes all the difference when you feel listened to and are treated like a valuable patient.
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