Argh!!!

[Oxfordjojo]

Hi all, I have undifferentiated connective tissue disease and I’m having an awful flare up (the worst since diagnosis 3 years ago) causing bladder issues and pain and I can barely shuffle from one room to the next - mostly in bed. I’m getting a blood test tomorrow. Any ideas on how I might be ‘fixed’. I’m currently on hydroxychloroquine. Meloxicam and meverbine doing very little. Do you think the next step might be steroids to settle things down?

[Spanielmadlady]

Oh no . ....you may need steroids or another immunosuppressants like mmf or methotrexate xx

[Oxfordjojo in reply to Spanielmadlady]

Thank you!

[Spanielmadlady in reply to Oxfordjojo]

Its taken hydroxchloroquine, prednisolone and mmf to bring my lupus under control.im 2 years into a 4 year treatment plan x

[svfarmer]

Hi sorry your having a flaire up at the moment- it may be that you need some steroids to get it under control x

[Bakbre]

Just seen your post. I too have UCTD and it took about 4 years to get it under control. I was put on so many different tablets in that time I have difficulty remembering all of them. The problem with any of the medications we take is that it can take so long to start working, if it is ever going to and then when it doesn’t, having to start with something else. I was also on & off steroids which helped whilst I was taking them but soon stopped when I came off them again. In this time I also developed Rheumatoid Arthritis & Small Fibre Neuropathy.

This seemed to go on & on for me with only a few brief periods of respite until I got a new consultant who after reading my history decided that I would benefit from an infusion called Rituximab. After she explained all about the treatment to me, I decided I had nothing to lose and so she arranged for me to have it.

I call this my miracle treatment because after the first infusion for the first time in years I actually felt well. I have now been on it for 3 years. I get them every 6 months and I can honestly say it’s the best decision I’ve ever made. I still get the odd flare but these are usually as I am coming to the end of the 6 months and need a ‘top-up’.

If I was you I would have a word with your consultant or specialist nurse and ask them if it would benefit you. There are other infusions as well but Rituximab is the one I am on.

I know how worrying it is and how much pain you are in and I would like to wish you well and hope you get ‘fixed’ as you call it, very soon.