Hi! I wrote on here a few months back asking advice on finding someone to look outside the box after being treated for 5 years for sero neg RA and was no further on. Got a lot of interesting feedback from people on here, thank you, so thought I'd update you and ask your opinion on a couple of other things.
After another flare (well don't think it's actually ever rested just think it's been masked by the prednisolone) after managing to stay off the prednisolone (really struggling though) for three weeks, I ended up at the GP as an emergency as my ribs were so constricted I was struggling to expand my lungs so couldn't breathe properly. Phonecall to the 'helpline' (a joke really to call it that when the answer message says it could be three days before they get back to you) at the rheumatology dept proved fruitless as no-one got back to me & I was seriously deteriorating quite rapidly. The GP also found it really hard to contact someone & finally (after phoning the consultants secretary to get an answerphone message saying no-one will get this message for a week & the 'helpline' mailbox must have been full as it just went dead) spoke to the receptionist who found someone who told her to fax her findings & someone would contact me that afternoon. No-one did of course but the GP got a fax that evening from my consultant saying to give me a Depo Medrone IM injection but I must have misunderstood to stop the Methotrexate. Had he not read my notes or blood results? Or maybe the specialist nurse who spoke to me hadn't updated my notes. My ALT had skyrocketed with the NSAIDs & Methotrexate combo & she had phoned me to tell me it had & to leave off the methotrexate for two weeks & then get my bloods checked & we'd go from there!! VERY frustrating dept!!!! GP then relayed this via fax to my consultant to ask if he still wanted me to go back onto Methotrexate so soon. Needless to say we heard nothing for 6 weeks when I saw and asked the specialist nurse when the 'rapid access clinic' appointment she promised me was likely to come through. When she originally said she'd put me on the list for reassessment at this rapid access clinic (you'd think the hint would be in the name wouldn't you?) she did mention it would be 4-6 weeks. Really wanted reassessing without the steroids as that's never happened. Consultant had said RA was in remission when I was still on a low dose. As soon as I came off them it all went pear shaped again. Once again I was being assessed on steroids!!!
Anyway also mention the 'Enthesitis' possibility to GP (thank you earthwitch and agoflow4 for mentioning it) who also hadn't heard of it. Told her about Chapel Allerton & she agreed it's worth a consultation. Against my better judgement she said she's ask my consultant whether he could recommend someone in Leeds (she's a new GP so she's still young and naive) as he would be happy to have someone question him. Of course his letter back was rather curt (think I'm now looked at as a bit of a nuisance) saying I have no signs of enthesitis. However GP has still referred me to someone at Leeds so I have an appointment in March Putting my faith in that as a positive way forward, for now, as I'm feeling very let down by the lack of support from my present rheumatology dept & after 5+ years I'm still unmanaged & stuck in a rut.
On another note (yeah, I realise I'm going on) when I finally got to see someone in the rapid access clinic it was a very good SPR who I've never seen before. He took time and most importantly listened. He reckons I've now added Fibromyalgia to my list and wants me to start on a small dose of either Amitriptyline or Gabapentin. Very reluctant to start on another drug especially with my ALT now not being brill folowing the Methotrexate and NSADs episode. And even more reluctant to start on one that is addictive and can add to my already substantial steroid weight gain. So I'm after any thoughts on either of these. Before I was diagnosed I was given Nortriptyline - which is a derivative of Amitriptyline - for the originaI head clanging I had before this showed itself as RA and I didn't particularly like the spaced out feel. Is Amitryptaline any better or Is Gabapentin any better? Any experiences would be greatly appreciated.