off methotrexate and hurting

[GranAmie]

rheumatologist stopped mtx 4 wks ago as chest clinic dr. wanted lung ct scan 'just to be sure' .altho gp's steroid nosedrops had clearedup cough .am told by clinic dr's secretary that scan request marked as 'routine' so may be waiting months. tried explaining my diffs; said she'd ring back but nowt. gave and took ibuprofen again last night. What else to do? wd going private speed it all up and at what cost. ideas, folks pse. GPs have no sway with consultants here in N Ireland I'm told.

[helixhelix]

I think a pretty firm conversation with rheumy team needed. 1) do they have any sway in getting an earlier CT scan 2) what do they recommend in the interim as don't want to have worse long term result from being off RA drugs - so alternative DMARD? better anti-inflammatory? A steroid shot to tie you over? Basically push them hard that it's not acceptable to be left hanging like this with no treatment for an unknown length of time and you expect them to come up with a solution......Good luck!

[GranAmie in reply to helixhelix]

thanks so much helixhelix! 2different hospitals so no sway at all. - and only 3 miles apart. think i blotted copybook by asking re cbd oil - got no reply on that though. now offered steroid jab but think i can manage now - ibuprofen at night, cbd oil mornings and 2.5 - 3 mg prednisolone at luch. will see how that goes - just needed to scream. xx

[jeremy76charnwood]

I came off Mtx injections as I found that it made my thinking slower and less able to cope in group situations, also my RA was not halted if I did too much movement during the day, however the flare ups have returned and I cope with ibuprofen and co-codimol if I take them as soon as the flare up begins, certainly better than the brain fog.

[Karen77]

Good luck. I've been put off MTX and still off 6 months later. Sending virtual hugs in solidarity.

[Harimah]

I totally understand where your coming from,....I've been taken off methetrexate too because of increasing breathlessness and am taking prednisilone and using tiotropium which isn't helping at all,....My GP sent me for an x-ray and says I have mild copd and she'll see me in 4 weeks and that's it, In the meantime I feel as if i'm dying ,....I know there's thousands of RA sufferers and i'm not special but I feel as if no one cares and this is how i'll always be