tacrolimus 1mg

[Alicepirate]

so I ‘m on tacrolimus 1mg after taking 0.5mg with no results I had a month on nothing between dose change because of prescription mess up but feeling awful my joints are so bad at the moment struggling to move arms or walk or anything I’m only 47 and feeling quite sorry for myself . The top of both arms has been agony for a month and can no longer drive at the mo ☹️ As so weak and one knee is massive but can’t use stick as hands so bad .

Has anyone got any experience with tacrolimus and how long it took to work I know we all different obviously but don’t know anyone else on this drug so I’m just wondering and would be nice to hear a cheery experience. 😁

Many thanks I’ve told GP and Rheumy how bad joint are but sure everyone know what it like with the NHS at the mo . I have zero appointments booked at the mo and last one in July was cancelled thus delay in prescription ☹️

[CallMeSunny]

See Elaine777 post (from 5 years ago): some helpful comments there for you hopefully. Type Tacrolimus in the Search box. Good luck.

[janmary]

Sorry I can’t help about the drug - but you seem to be in urgent need of a rheum review and some short term treatment- perhaps steroids or analgesic - until long term treatment kicks in. can you contact the department helpline or secretary to ask for an urgent appointment

[Alicepirate in reply to janmary]

Tacrolimus was increased a few weeks ago to the 1mg so think I’ll have to wait a few months to see results to get appointment, my rheumatologist , v difficult to get appointments . ☹️ But think alot of people have same issues . I’ve pro actively made an appointment to have some acupuncture hopefully that may help somewhat . I’ve flagged the pain and immobility with gp they’ve written to rheumatologist but from past situations it takes months to get appointments. it’s a bit tricky as can’t take NSIDS or PPI on Tacrolimus it seems either , I will pop and see pharmacist maybe they can help . Thankyou both for replies and taking the time 💗😃

[oldtimer2]

I do think that you need to nag your rheumatology team - nicely of course! They are not being as responsive as they should, and you should be getting more support...Do you have a rheumatology helpline? If so, keep in touch with the specialist nurse and keep asking for help.

[Alicepirate in reply to oldtimer2]

It’s only open Monday or Wednesday morning between 9-12 and it’s an answer phone so will only be Wednesday this week and they don’t often get back to you . It’s just tricky I was under another hospital that was a lot better and I’m on the edge of a county so think I might change gp and then hopefully rheumatologist I think 🤔 just the hassle of doing it when feeling rubbish but think it will be better in the long run 💗

[oldtimer]

Yes that's sensible if you feel you're getting nowhere.