Big Day for me. Big Rant too.: At last, I start my... - NRAS

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Big Day for me. Big Rant too.

lifeboatann58 profile image
18 Replies

At last, I start my Bilogics today, got the nurse coming to show me how to inject my new medication, I've been put on Benepali, never heard of it, but hopefully it will work alongside the Methoraxate and Hydrochloride, (excuse my spelling please)

Went to see the Rheumatologist last month, but it was a locum, I came out in tears, more anger than anything, he asked how I was, so said about me just waiting on word to go on the Bilogics, he said your not going on Bilogics, said to go on them I would need tests for TB etc, x-rays, I said yes I've had them all done, just waiting on the results of my last urine sample. Well he sat in front of me and started touching the pressure point areas for the Fibromyalgia,(which I was/am flaring with) said we are putting you back to the beginning, sending you for mri scans on your wrists and bone density tests. Sounded like he was saying that I don't have RA (which would be fantastic) he didn't look at my notes or anything. Well by that time I had had enough, told him what I thought of him, and walked out,, followed by the nurse. She gave me a hug and told me to phone my Bilogics nurse, said go and phone him today, which I did, he says I've not got your notes in front of me, but I know that you are definitely going on Bilogics, I'll get this sorted asp, and this is the result. I START TODAY. YIPHEE. But from now on I am refusing to see a locum. I was expecting him to tell me to get back to work that day. That's my rant over. Has anyone else been treated like that?

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lifeboatann58
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18 Replies
popsmith1874 profile image
popsmith1874

Yes I had one clown a couple off years ago , she asked me why I had a walking stick I'd said firmly well if I didn't I'd be lying on the ground and you would need to pick me up , useless she was I'd have been better going to the vet

lifeboatann58 profile image
lifeboatann58 in reply topopsmith1874

It's terrible, things are hard enough for us, without the people who are supposed to help us making things worse. Thankfully there are not too many of them. 😕

Bon1 profile image
Bon1

I saw a rheum nurse who I now call the work experience girl. Not kidding i think the postman on my street knows more than her. i dread having to see her again.

lifeboatann58 profile image
lifeboatann58 in reply toBon1

It's bad when we wait 3 months to see them to get someone that's no interest. My Rheumy nurse has been great and now my Bilogics nurse Is too. Just when you get someone different that causes the problems. 😞

Sorry life boat ann - That is pretty horrible. I have NOT had that happen, but I will be honest. I have read of several people that the docs did that to. Push on a spot, ask if it hurts, then look away while you wince or tear up.

It took an orthopod insulting my mother in law a few years ago to make me stand up and back them down.. But now... not an issue..

So many are afraid to say to a doctor what they think, so I am proud of you that you were able to do so and take care of your care. Nice work!

lifeboatann58 profile image
lifeboatann58 in reply to

He saw how much pain I was in, and it seemed like he was saying that I never had Rheumatoid arthritis, that it was Fibromyalgia I had. That day I just couldn't believe what I was hearing. 😕😕

AgedCrone profile image
AgedCrone

I saw a locum who had never heard of Leflunomide.....seemed quite proud of the fact! He asked me what it was for....& when I told him said he didn't know anything about RA......again seemed quite happy to admit he didn't know......guess that is why he's a locum ...can't get a permanent job!

lifeboatann58 profile image
lifeboatann58 in reply toAgedCrone

That's amazing that he's never heard of that, I'm sure that's why they go to medical school. Saying that 2 Dr's at my surgery missed my RA, it took a young lass fresh out of uni to diagnose me, maybe because it was still fresh in her mind. 😋😋

AgedCrone profile image
AgedCrone in reply tolifeboatann58

But you would think a supposedly educated young man who has a medical qualification to work as a locum GP would LOOK IT UP for the next time he's asked,

My Rheumy often looks up an answer if I ask something he's not sure of .

The young man no longer works in the Practice!

lifeboatann58 profile image
lifeboatann58 in reply toAgedCrone

Definitely would think he would look into it, as really that's not just part of his training, more importantly it's his job. We can understand that they can't remember every illness/disease. But when a patient comes in and tells them there symptoms, if they don't immediately recognise them, they should be doing there homework to make sure they give there patient the best treatment. 😔😔😔😔

Mhairi54 profile image
Mhairi54

Not had an experience like that but just wanted to say that I recently started on Benepali and I'm already seeing the difference in my pain levels. The injections are so simple as well. Here's hoping you get some relief soon too.

lifeboatann58 profile image
lifeboatann58 in reply toMhairi54

Awwh that's great news, really happy that it's started working for you already, hopefully it will start quickly for me too. What other medication are you on with it? I have my Methoraxate injection, and take 2 Hydroxychloroquine a day. Also on amitriptyline, but that's for my Fibromyalgia. Feel like I am getting everything thrown at me at the moment. Which will be fantastic if it works. 😁😁😁😁

Mhairi54 profile image
Mhairi54 in reply tolifeboatann58

I also take 60mg etoricoxib daily, although hoping to start cutting this down/out soon. Also on Amitriptyline at night time. Was on far more different meds at the height of my flare but feeling much better now so hoping to get back to a bare minimum of meds if possible. This time last year, I didn't take any medication at all!!

Entero profile image
Entero

Hi, I'm sorry you've had this experience and particularly today having seen a new Consultant yesterday who basically called into question everything my previous consultant said. I had the strongest sense that his main motivation was to dismiss/ undermine the others position rather than help me. Sadly ego can clearly override clarity of care in these situations and I applaud you for walking out- well done!

AgedCrone profile image
AgedCrone in reply toEntero

I will probably be accused of being sexist here......but I have not found many senior women -in any profession - who rubbish their colleagues opinions as much as men do.

As you say it's ego......or maybe lack of confidence.....but for their patient's sake I wish they'd get over it!

lifeboatann58 profile image
lifeboatann58 in reply toEntero

Think you are spot on. He was right and everyone else was wrong. That's exactly what it seemed like. Xx😞😞

Gameo profile image
Gameo

Hi lifeboatman just to let you know l have been on the same injections as you and been on them for three months now. I did have one bruise but all in all that's not to bad after three months l am on hydro as well and steroids but touch wood feel good at the moment. As for your locum l have the same trouble from my rummy when ever l go to see him l have a coffee first in the hospital cafe and get more sense from the lady making my coffee . Now you are on the injections there are different ones to try if the benny does not work good luck and never give up.

.

lifeboatann58 profile image
lifeboatann58 in reply toGameo

Thank you. Really hope that this works, but I am not going to build my hopes up to much yet, been on the Methoraxate injection for over a year and the Hydroxychloride tablets for about 8/9months and they've not made much difference, but heyhoe, if this doesn't work on to the next one's. 😕😕

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