Latest news on getting the specialist to listen and on shoulder replacement.

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.

[Lina282]

Hi

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.

Good luck xx

[Hidden in reply to Lina282]

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

[Lina282 in reply to Hidden]

Thank you. I hope so xx

[Lolabridge]

That’s good news. Being assertive has paid off for you, as it did for me this morning.

Hope the op is straightforward and that you make a speedy recovery.

[Hidden in reply to Lolabridge]

Thank you so much Lolabridge. x

[KittyJ]

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.

[Hidden in reply to KittyJ]

Thank you so much KittyJ. Yes I will keep you informed. xx

[Hidden]

Hidden that is lovely to hear that the email was read and a discussion had. You must have spent the time wondering if it was a dream!

[Hidden in reply to Hidden]

Yes, it all seemed a bit unbelievable Deeb.

[Pinkypie2018]

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 😄

[Hidden in reply to Pinkypie2018]

Thank you Pinkypie. x

[JFlay]

Good news! 👍

[Hidden]

Result!!! Shame we have to push to be heard. Will be thinking of you on the 14th November. Here’s to a speedy recovery

[Hidden in reply to Hidden]

Thank you so much J. x

[Happygranny1958]

Pleased you have had a good outcome. Not too long to wait for the operation, best wishes. X

[Hidden in reply to Happygranny1958]

Thank you Happy granny. xx

[Esmereld]

Great news. Really pleased for you.

[Hidden in reply to Esmereld]

Thank you Esmereld, it is lovely to be in this group and know how many people care. x

[Lee1945]

It is so good to hear that you are now being listened to!

We all need to be proactive and fight our own corners!

Maybe our doctors do not REALLY listen to some of the things we say?

Personally I find that I have more success when I politely set out my needs and concerns in writing

I hope that your surgery next month is successful and your recovery doesn't take too long!

My best wishes x

[Hidden in reply to Lee1945]

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.

[Yogi-bear123]

YAY!! Well done and speedy healing with your op.

[Hidden in reply to Yogi-bear123]

Thank you Yogi. x

[Biofreak]

Well done Holly. So glad you are being listened to at last. Hope all goes well with your op and let us know how you are doing when you can.

[Hidden in reply to Biofreak]

I will do Biofreak. Thank you for replying.

[Mmrr]

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.

[Hidden in reply to Mmrr]

Thank you Mmrr, it makes a person feel better to know that they are being listened to at last. xx

[Grayling]

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.

[Hidden in reply to Grayling]

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

[Grayling in reply to Hidden]

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,

[Hidden in reply to Grayling]

Hi Grayling, I have just done so. Xx

[Hobbits]

Wonderful news!!!

[Hidden in reply to Hobbits]

Thank you Hobbits.

[Elephant100]

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 .