valsan

[Ruffles13]

I had a terrible flare up about 5 years ago. I was put on a biologic , which was like a miracle. I had to stop this in May as I have bladder cancer it is now October and I havnt been out of the house for 3 weeks so much pain in shoulders neck and hands. I’ve take paracetamol and ibrufen but nothing seems to work. Has anyone else been in this situation. And what did you find helped please.

[medway-lady]

I’m so sorry to read this and can your GP not help ? I’m shocked that your Oncologist hasn’t addressed the issue or talked to your RA team to discuss a way forward and suggest you ask about possibly pain patches or even going back onto RA meds. A lot like MTX which is far from perfect do cross over with other uses so urge you to contact your medical professionals.

[Ruffles13 in reply to medway-lady]

I can never get hold of doctors or anyone just left holding on phone. Then get cut off as you get nearer. I have made an appointment now private. As I can’t go on like this anymore . Let’s hope I can get some help there .

[AgedCrone in reply to Ruffles13]

I’m so sorry you are in so much pain. Are you able to email your GP practice ?I find once an email gets through to somebody …..it’s ON RECORD…. And something is done about it.

Or you could phone PALS at the hospital and put get put through to the oncology department.

Somebody should then come back to you with some help with some pain control….or there is always calling 119… they will be able to give you the phone number of somebody who will help you.

I really hope you have some success.

[wishbone]

My shoulders, elbows, wrists and hands have troubled me for a few years, but since stopping baricitinib a week ago courtesy of a UTI, I'm now in serious pain.

Even at the best of times I still suffer and have been taking tramadol and paracetamol combo daily for years. It does help, but I still need to include a very ocassionl 250mg naproxen tablet . I find naproxen very good but only take it when things are really bad because of stomach and cardiac issues. I probably shouldn't be taking it at all but what can you do when in this sort of pain.

I just hope this UTI clears soon with the antibiotics I'm taking so can restart baricitinib.

Hope you manage to get some decent relief soon.

[zen4]

This is a devastating situation for you. I do agree though that the oncologist should liaise with your rheumatologist to sort you out another medication for the RA that will not adversely affect your cancer treatment . There are so many different treatments for RA now but of course except for steroids they all take a couple of months to be effective. Sometimes a private appointment speeds things up, particularly for surgery if they work for the NHS as well, but sometimes the NHS won't accept the private consultation and prescriptions and you end up starting again or paying hundreds of pounds for each prescription. I would therefore speak to the oncologist and rheumatologist and get them talking to each other. Go through a secretary they are often very helpful. You have to be persistent and the way you are probably feeling that will be particularly hard for you. Hope you have some help soon