Some of you may remember me writing to ask how I could get my rheumatologist to really listen to me and I got some really helpful answers. The result was that I wrote an email to her to be read before she saw me and I went in on Monday feeling nervous but determined to be heard and listened to properly.
To my amazement, she was perfectly ok with me and examined me (which hadn't been done for a long time, agreed that my fingers and toes were swollen and also agreed to try me on a different medication. I have been asked to be tried on something different for several years to no avail so I was dumbstruck at this. The result is that I will be coming off Methotrexate and going on to Leflunomide after I have settled down from my upcoming operation. I am also going to have ultrasound scans on my feet and hands.
I saw a consultant yesterday at the hospital where I will be having the shoulder replacement done and was at first told that I would be likely to have the operation done in Jan or Feb next year. I said that I was disappointed to have to wait that long as I have already been on the list since February. A nurse who was there then mentioned that there might be one available for sometime next month due to a cancellation. She went to look and came back to ask if I was free to have it done on 14th November and I replied that whatever I might have on then would be cancelled in order to have the operation (I later found that I didn't have anything on then anyway).
So it's all systems go with operation on 14th of next month and when I settle down a bit from that, to try out a different medication.
I am so happy for you and wish you all the best for your op and of course to your new medication.
I want to come off Methotrexate as well but I have to wait until we can move to Scotland and have a new rheumatologist ...hopefully a good one who listens.
Thank you for your good wishes Lina. All these results have been a very long time coming. I wish you all the best too in your move to Scotland and that you get a good and a listening rheumatologist there. xx
Of course we remember the horrible time you were having and I’m really glad that you are finally being listened to. Great news about the op happening soon too. Best of luck and keep us updated with how you are doing.
Really happy to hear you had a pleasing appointment and I hope the new medication is more helpful than methotrexate. Wishing you a speedy recovery once you get your operation done 😄
Thank you Lee. I had a rheumatologist once who was dreadful. I took a short list of four things I needed to ask her all neatly typed out and asked her to look at it. She pushed it aside and said she hadn't got time to read it as her appointments were an hour late. I said that wasn't my fault and she said it wasn't her's either and refused to answer any questions. I reported her to PALS and changed to a different hospital and heard later that she had retired.
Very good news. Being polite, assertive and writing things down seems to be the winning combination in the world of RD. Expect good care and you are more likely to get it.
You have won through by being strong. A brighter Christmas and New Year look to be in the offering for you.
Many congrats on getting your shoulder op sorted. I too have to have a shoulder replacement but have been told that I have to wait until I'm 70, that's another 3 years, why I asked? I was told that the replacement joint would only last 10 years and I was too young. At 67???? So we agreed to meet up in November have an x-ray and then a discussion. I'm not holding out for a positive answer,. whish I had about £9 K to spare.
That's odd because I am 68 and wasn't told that at all. I think you will need to push it and maybe also look into what the NICE guidelines say about the age is for having it done. I also recently met a man in the clinic who had had it done and he didn't look that age, he looked more like he was in his fifties. Good Luck with it. xxx
Hi holly-willow, I'm dropping you this line to see if you have had your shoulder surgery, if yes, will you please do a write up about your experience, if no when do you go in? I'm seeing the surgeon on Thursday, the 28th, fingers crossed,
Hi holly good luck with op ,I'm awaiting shoulder replacement ,had hips knees and ankles done ,starting 17yrs ago severe RA ,diagnosed at 38 before biologics were available,had to fight really hard to get on anti tnf ,called at that time,this will be my third type in 15yrs,currently on certiluzimab ,can understand how hopeless you felt ,thank God you have are last been listened too,Hope you have plenty people supporting you ,this disease is like a life sentence people don,t realizes ,look forward to here your progress holly take care .
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