Update on tofacitanib problems.

[Leics]

Morning all hope you are all ok.

Managed to get in touch with rheumy again as I found out yesterday that an ultrasound scan I need to have before they sort out different meds won’t be for another 4-5 months and I’ve been unmedicated for two months already and struggling to say the least. Well I’m very pleased and surprised that they got back to me yesterday and emailed my consultant and he’s agreed to see me in his emergency clinic next week. I cannot tell you how relieved I am because the pain and debility is getting worse and worse but I’m sure that’s no surprise to many of you.

So all I can add is if you’re struggling get in touch with your consultant secretary and see what they can do. I know it maybe a postcode lottery but with any luck (and I consider myself very fortunate) they will see you if it’s urgent.

Have a good day and gentle hugs to those who need it 🤗

[Hidden]

So glad you managed to get an appointment. Hope that you are feeling better soon 😊

[Leics in reply to Hidden]

Thanks LynneB 🤞eh.

[Otto11]

Glad you got sorted. I was in a similar position to you a few years ago when Humira stopped working. It was a 16 week wait for ultrasound by which time my ankle was so swollen I had a partially torn tendon which 5 years on still hasn’t healed properly & most likely never will. It was then 2 more months for funding before starting Rituximab. I wish I had been more proactive x

[Leics in reply to Otto11]

Yeah I’ve had similar with my shoulder had 18 months of hell before it totally seized up and my collarbone fractured picking up a coffee. Luckily I stuck to my guns when that happened and told fracture clinic they couldn’t just discharge me before someone took action to sort it so surgery that time and I had torn tendons too. Also snapped my ACL with the smallest stumble coz my knees had been so bad for so long. I should have learned by now but nope haha.

[Otto11 in reply to Leics]

🙁 it’s not good x