Oh I was so dreading appointment 🤷‍♀️: Hi everyone... - NRAS

NRAS

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Oh I was so dreading appointment 🤷‍♀️

Leics
Leics

Hi everyone,

Well long story short, I had a planned appointment with rheumy consultant this lunchtime. Here’s where I am at the moment. Had 6 weeks antibiotic treatment coz my immune system is pants I was started on olumiant (1st treatment for 5 years) not because my RA was in remission but because old consultant said I was untreatable. I have the most amazing new consultant hence the Olumiant but only had 10 days of 2.5mg and problems began its absolutely to do with antibiotics which I’m never any good with I found I made every excuse under the sun because Baracitinib or Olumiant was beginning to help. So antibiotic and Baracitinib stopped. Still have gut symptoms and a few other issues but starting to crash and burn again with joint pain ++++. Anyway to the point was dreading seeing consultant who was wonderful in sorting this treatment out but he listened, agreed and is putting into action a new plan even got a short course of oral steroids to tied me over, which I was very surprised about because other docs have said no coz of immune system but I know he knows me and is in discussion with immuno about me too. I realise I’m a bit of enigma when it comes to treatment options but I’m so glad there’s consultants out there who listen to patients and still feel they’re not prepared to allow anyone to suffer as I have been without thinking outside the box.

I hope everyone is ok and not suffering too much in the cold 🥶 My faith is restored that there is help out there and that light is beginning to shine in that dark tunnel. Hooray 😀😃

I needn’t have worried about appointment all is back on track sort of lol.

14 Replies

That's good news. Had my 2nd appointment yesterday and the consultant listened and was very good unlike the first time when undiagnosed and left disappointed. I hope your treatment really helps.

I'm pleased you had a good appointment, it makes such a difference especially when you' re dreading it. He obviously listened & to have a plan is encouraging, I hope things improve with the course of steroids, should help over Christmas.

Leics
Leics in reply to nomoreheels

Yep fingers crossed could do without any more issues for a while.

This is a massive step in going forwards with your treatment

So great to hear that Consultant really on your case and wanting to help

Super

Wishing you all the very best

😊

Leics
Leics in reply to Stormpetrel

Oh thanks it means a lot to know that we are all routing for one another.

Hidden
Hidden

If Doc both listened and took action thats what I call a good appt.!

Yep I agree with comments wish all doctors and consultants were this good. Doubt any of us would moan about appointments. Got to admit they’ve made many mistakes with me in the past and recently I was doing all the chasing to get new treatment and was sent to A&E coz of blood test result which turned out to be an error of some sort (either GP or lab) and found out I wasn’t being monitored at all big no no for me so as you can imagine I was pretty angry again. Not perfect but I used to work in pathology for NHS I know the issues better than most. Hey ho we move on and live to fight another day lol. But ever positive and proactive as we have to be.

Good news for you,i have a new rheumy and he is putting me on that drug as well next month. He too has put me on steroids until i go back next month. What a coincidence hey.xxx

Leics
Leics in reply to sylvi

Haha that is strange maybe there’s a bit more continuity going on between consultants that we aren’t privy to.

Yesterday seems to have been a good day for appointments ! several of us reported a good experience . Maybe there was someting in the air !

Seriously , Pleased that things moved on a bit for you.

Leics
Leics in reply to Mmrr

Thanks been a few hiccups but getting there 👍

Hi,

I so agree with you, I have had lots of treatments for my RA over the six years, some awful side effects pain in leg so could not walk etc, but since starting Olumiant six months ago joint much better but three lots of infections and antibiotics. I tried stopping the 2mg I take a day and my joint pain back, staying with it just hate the ulcer came up twice in my throat.

Hope all goes well with you this time and also agree about consultants being rushed and not listening to you.

Take Care

Leics
Leics in reply to Teatrees

Thanks. Olumiant is now back on changed antibiotics and doing well. No infections so far and bloods are good. I have noticed I’m better with steroids and olumiant combined but I will settle for the good improvement since starting back on olumiant. Seeing consultant again on Friday this week so we will see if I stay with just the 2mg olumiant and antibiotic cover or see if low dose steroids are an option too. I have found that having a ‘live yogurt’ every day really helps to keep me healthy especially with my immune system. Perhaps a probiotic or yogurt would stop you getting ulcers too. Worth a try. I’m so lucky to finally have a great consultant who cares and listens and has changed my life for the better. Hope the Olumiant continues to help you too even with the odd glitch.

You are so right and I have a kind RA Nurse, thanks I will keep up with the yogart and good luck.

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