After missing 5 days of barcitnib 5 weeks ago I’ve just not picked up and haven’t got back to where I was . I rang the helpline 2 weeks ago asking for a steroid but new nurse useless said no and wouldn’t listen to my explanation so ended up with a f2f . Upshot was I got a steroid injection. Apparently barcitnib leaves the system very quickly but can take up to 3 months before it starts working properly again… missing it won’t happen again.
He’s really pleased with my orthotics but noticed toes are lifting and curling under and is referring me . Feet examination??? Nearly fainted.. no one has bothered before . ( this bloke is a new senior registrar told him he’s a keeper) .
There was also a 4th year student on placement as well . I asked him what did he want to specialise in . He said Gp ( as there is such a shortage) or respiratory . I said there’s a shortage of rheumatologists. He replied OMG this a difficult placement. This disease baffles me and I just can’t get my head around it as it’s so complicated. I said how do you think we feel . 😁 just sitting back waiting for the steroid to kick in .
I’d no idea it took so long to get Baricitinib back on track after missing 5 of them. 😢😱. Glad you got to see someone good and you had a steroid shot. Hopes this tides you over till the RA med working again. 💗
I am very glad to hear that you got your steroid injection and I'm keeping my fingers crossed that it'll kick in very soon! You know I've been off baricitinib for 6 days now and I really feel the symptoms coming back (I've been in remission for so long, I forgot what active RA is like! It's it's not very nice is it!!). If I wasn't on oral steroids I guess it would be much worse though. I'm tempted to ask for an increase of the Prednisone or maybe an additional injection.
I'm at the hospital tomorrow for my first Kevzara injection, feeling a bit apprehensive about the change from baricitinib (it has worked very well for almost 3 years), I think it's a great medication!! But I really hope it won't take 3 months for baricitinib to start working again for you...
It seems like you're in good hands and that it was a productive appointment 👍
Let us know how you get on and have a very nice day 🍀
Ah, please do tell how you managed to get a F2F with your rheumy! Were there magic words you had to utter if so spill the beans!!
Hope you can soon get some relief.
I've realised it was August 2019 when I had my last F2F with mine although I've had two phone appointments with him since then. However I never feel the latter are that good as he will focus on blood test results and it seems he's rather dismissive of my remarks about RA problems like fatigue, swelling, tenderness and joint pain.
As I'm starting to have some problems now I've written a letter to him (copy to the GP) listing my problems so at least it will be harder for them to be overlooked.
Hate to rub salt etc . This my 4th f2f since February. I feel like they are making up for last year . I didn’t ask for this appointment I had a nurse on the help line who didn’t listen and couldn’t or wouldn’t do anything without emailing my rheumatologist. All I asked for was a steroid injection . Sounds like your rheumatologist isn’t proactive. I’ve a review in September booked already another f2f .
Thanks . Barcitnib worked really quickly at the beginning never thought fir a minute missing just 5 days would cause this amount of upset . He was loving to me , told to stop beating myself up . He said we are all human and mistakes happen. Can’t wait for steroid injection to kick in . X
Pleased to hear your appointment sounded worthwhile. Hope that steroid jab kicks in quickly!
Can't believe your medication takes upto 3 months to become effective again. That was a hard way to find out!
As for the doc looking at your feet- well you were honoured! Perhaps they just stop once they reach Consultant status. They've done their "foot" quota by then.😆 To be fair though, my old rheumatologist would always look at my feet - he would even help me with shoes and socks ......... God, I miss him!!
Interesting to hear the views of the med student. It's a real shame rheumatology doesn't attract more people. After all, who wouldn't want to see the same lovely patients year after year, after year ......😉😄
Hope you can relax now, and wait for that steroid boost. Take care xx😊
Oh thanks K. Yep lesson learnt I was gobsmacked when he said that long asked him to repeat it . He said often takes longer to work after a break can hardly believe 5 days is a break 🤷♀️. I always know when a steroid injection is going to work ( they don’t always) but I got a bad headache Few hours later and fell asleep.. a sure sign it is working for me .
Yeah rheumatology isn’t glamorous but live in hope Covid May bread a new generation of rheumatologists as long Covid displays many of our symptoms.
I really like this new bloke he even put a pen mark where he wanted to inject and put a little plaster on my butt 😂😂
Cunning plan didn’t have the total desired effect 😂😂😂x
Nearly passed out !!! When he said take your shoes and socks off I want to check your feet.. numerous appointments and GPs never even a sniff 😁( pardon the pun) in over 5 years of diagnosis.
Glad you got a f2f J. I haven't had a review f2f or over the phone for over 12 months. I've had a few flares but fortunately they haven't lasted very long. Last time I rang the helpline a few weeks ago they said they weren't doing reviews as a general thing because they were still trying to catch up with hundreds of referrals from GPs. As I'm coping at the moment I'm not pushing them for a review. Hope your referral comes through quickly for your poor tootsies.
I hope the steroid injection provides some relief for you soon. I didnt realise baricitinib leaves your system so quickly, I have forgotten the odd days to take it, so I will make sure I don't in future. I do hope it starts working just as well again x
Oh thank you . Steroid is doing it’s magic almost fully Mobil. Wish I could have it all the time . Shame there such bad side effects . I will never ever miss it again . Have so many things in place to prevent a repeat . 😁x
Hi lovely I am so pleased that you had such a good appointment. Amazing that it takes so long for a medication to get back into your system when missing just five days. I hope the steroid injections are still working their magic for you xx
My infection hasn’t returned some my child dose of strawberry syrup bedtime antibiotics is doing the trick. I am having good and bad days with my RA but hoping the more biologic I can get in my system the more I will get back on my feet. One day at a time. x
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Outcome of f2f
PIP UPDATE: Very short notice F2F
Off topic: F2F
Both of us at the hospital this morning.
