Need someone to look outside the box

[Lynnels]

Hi!

I'm new to this but hoping someone can advise me.

I was diagnosed with RA (serum negative) about 5 years ago and still haven't manage to get it to a manageable level without steroids. The only time I have ever been assessed without steroids was before diagnosis. I have now been on IV Tocilizamab (along with steroids and Methotrexate) for over a year and on paper I am now looking good. My consultant tells me I'm in remission but as soon as I come off the steroids everything flares up again. He tells me this is all Osteoarthritis but I am not convinced. It is hard to get to see anyone (three days for a telephone helpline reply by specialist nurses and 6 weeks wait for the rapid (????) access clinic appointment.)

I've come to the conclusion I need a totally new look on this and am willing to pay for it, but what I don't want is someone with the same "sight" as the consultant I already have as after all this time I'm sure something is being missed. So my question is how do I find someone good with a different outlook and someone who will look outside the box? Can anyone in the North West area of England recommend anyone? Am I better looking for an all round Auto Immune specialist rather than just a RA consultant? Thanks for listening/reading.

[babssara]

Hi Lynnels. There is (so I've heard) a very good team in Manchester which deal with all things autoimmune, including RA. Don't want to say too much as I do not have first hand experience. I am sure you will get replies from more knowledgeable people of this forum.

Good look with the hunt for a good specialist.

Babs

[Lynnels in reply to babssara]

Hi Babs!

Thanks for your reply. I am in Manchester (although could be in a different part and I don't want to publicly knock a particular hospital, especially as I am a nurse and (or did - off sick again!) work there) However sadly I have to say it's not doing it for me. I don't know if you want to name the hospital you were referring to

Lynne

[nomoreheels]

Welcome Lynnels. I'm seropositive but I also have OA & along with MTX & the usual add-on's I'm on low dose maintenance deflazacort. I've tried coming off them but toward the end of tapering I flare. I think it's a bit lazy of my Rheumy to keep me on them & not explore options if I'm honest but I do think it helps as far as my OA is concerned. She's handed over general OA care to my GP who's very understanding & prescribes a few pain relief/ muscle relaxant meds & a pain relief patch but like you would prefer a new pair of eyes who will look at the whole. As my Rheumy's on extended leave I see a different Rheumy on Monday & intend going over my history in the hope that he's cut from different cloth. If I have any joy I'll pm you, I'm also in the North West but of course it stretches quite a way so unsure if we're local.

[Lynnels in reply to nomoreheels]

Hi!

Thanks for replying.

It will be interesting to see if anything new comes from the new Rheumy. Fingers crossed for you ... keep me updated. Interestingly, my RA consultant reckons that steroids do not help with OA which is why he's been keen (as I have) for me to get off the Prednisolone and onto NSAIDs However I am so much worse off them and having got to desperation last week did as my Specialist nurse suggested and took a 4 day blast to get me through the last few days of a holiday abroad .... and it helped!! Conflicting to say the least. Now struggling again. And because the combo of Methotrexate and top doses of NSAIDs have sent my ALT through the roof, now can't take them.

Good luck on Monday

[flow4]

I am considering Chapel Allerton at Leeds. I also have a dx of sero-negative RA and OA, plus also hypermobility syndrome. But I am pretty sure that a lot of the pain I get is enthesopathy, and my GP (who has seen it when I've been flaring) agrees it could be, and that's characteristic of the spondyloarthritis-es rather than RA, so I feel like there are still unanswered questions... Leeds Teaching Hospital Trust have specialists and have produced this website: enthesis.info/

[Lynnels in reply to flow4]

That is sooooo interesting! Got to admit I'd never heard of it and reading down about related injuries, even more so, as I now also suffer from bilateral trochanteric bursitis and golfers elbow.

Really got me thinking. Let me know if you pursue it.

[babssara in reply to flow4]

Flow, what a belter you are!!!! This link is amazing. I'm asking Coco to download it as I think there is an awful lot in it that she would be able to relate to.

Thanks again you star

X

[flow4 in reply to babssara]

You're both welcome. I'd never heard of it either until a few months ago. I think it was Earthwitch who first said the word 'enthesitis' to me, and then I found that website, and bells started ringing all over the place!

Good luck, and I hope it helps you both.

[helixhelix]

Have you talked to your GP about how you're feeling? It could be worth asking if he/she would be prepared to refer you elsewhere for a second opinion. Yes, doctors do stick together, but they are also human and able to understand that having trust & confidence is a very important part of treatment. Plus, a GP would know the issues with long term use of steroids so would also u deerstalker d your concerns. Nothing to lose by asking?

[earthwitch in reply to helixhelix]

Agree, and as flow4 suggests, ask your GP to refer you to a rheumatologist known to have an interest in spondyloarthritis rather than just RA, and with a specific request to assess you for spondyloarthritis. It seems to me that too many people get a "seronegative RA" diagnosis without being fully assessed for spondyloarthritis, which to be fair is often a lot harder to diagnose. Its quite important to get the right diagnosis, because spondy doesn't usually respond to DMARDs in the same way as RA and so needs different treatment. Interestingly, one of the criteria for diagnosing spondy is a positive response to steroids (and NSAIDs).

[Lynnels in reply to earthwitch]

Yeah this is very interesting to hear about (see my reply to flow4) Had zero response to Methotrexate (on it's own) Sulfasalazine, Humira and Azathioprine made me very ill. Still on Methotrexate and Hydroxychloroquine along with the IV Toc although query either of them are having any effect. All inflammation markers came down for the first time on Toc though, and with Toc and Prednisolone I'm better than I've ever been. It's just when you take the Pred away!! Especially as NSAIDs clash with Methotrexate and cause my ALT to skyrocket.

Is your info from experience? Thank you for replying.

[earthwitch in reply to Lynnels]

I do have ankylosing spondylitis (which is one of the forms of spondyloarthritis) and do have widespread enthesitis as part of that as well as a lot of inflammatory back pain. NSAIDs and presnisolone work really well with me. The only DMARDs that are known to have any impact on spondy are MTX and SSZ (and some doctors will also use hydroxychloroquine) - but if they do work, they usually only work on the peripheral disease (hands and feet) and not on the spinal inflammation. The treatment pathway for spondy is usually NSAIDs and maybe MTX or SSZ, then when NSAIDs are no longer tolerated, straight to antitnfs, however a lot of rheumatologists seem to want to persist with DMARDs for far too long first.

[flow4 in reply to earthwitch]

I'm grateful to you, earthwitch, for first saying 'enthesitis' to me, because I'm pretty sure that's the major cause of my pain. And although I now have a diagnosis of sero-neg RA, and a locum rheumy currently who isn't remotely interested in enthesophathy, I am keeping it in mind...

Switching consultants has a major disadvantage for me, as I discovered a couple of years ago, because there is no routine data sharing arrangement between Chapel Allerton and my own area, so when their X-rays picked up that I needed a hip replacement, it took months for that fact to trickle back to my health records and I was lucky that I'd just changed to a more diligent GP who reviewed the xray report that had come separately from the rheumy one, and spotted it.

I've just had 2.5 glorious almost-pain-free weeks following my first-ever steroid injection, which sadly is starting to wear off now... And I've been put on hydroxychloroquine, so I'm waiting to see if that helps. My GP assures me this would be the first course of treatment if my diagnosis was SpA or PsA too, so I'm happy to give it a go and keep my fingers crossed...

[Lynnels in reply to helixhelix]

Hi!

GP is as frustrated as I am!! Did have a 2nd opinion about a year ago at another Manchester hospital and he said he would have gone down the same line of treatment. He, of course was looking in the same box as my consultant with all the tests that I'd already had. Just think something's being missed and I'm being diagnosed as one of the 'job lots' if you know what I mean.

[sylvi]

I have just recently come off steroids and my hands are not very clever,but i can cope with them. I don't know about the north west as i live in the midlands,but as has been said before speak to your gp and ask their opinion. I am not as bad as i thought i would be after many years of steroids to be honest,but thats just me. Hugs and i hope you you get some answers.xxxx

[Lynnels in reply to sylvi]

Thanks! As I've said in a previous reply GP is as frustrated as I am (I see her monthly) Just feel I need a new set of eyes. Previous posts from Flow4 and Earthwitch are interesting and may seek in that direction if only to feel I'm doing something positive about the situation.

[babssara in reply to Lynnels]

Lynne I've messaged you.

Babs

[earthwitch in reply to Lynnels]

check out the information on spondyloarthritis at the National Ankylosing Spondylitis Society website. May give you some more ammunition (if you meet some of the diagnostic criteria there) for a different assessment.

[Hidden]

Hi Lynne

It doesn't make it any easier being a Nurse! I too am a Nurse in Canada and was diagnosed with zero negative RA almost 18 months ago.

Clint Paddison has an interesting program. I haven't gone on it but I am reading about it and thinking it would be so great to not have to rely on these toxic medications. I have had to use cortisone regularly in conjunction with all the different DMARDS and now it's Methotrexate & CIMZIA. I get very little from the 3 minute visit to the Rheumatologist once every three months so I am working hard to find out what works for me through diet, exercise, meditation. I am hopeful!

God luck! Cheers Doreen

Paddison Program, 105/290 Burns Bay Road, Lane Cove, New South Wales 2066, Australia

[Lynnels]

Just an update ... After another flare (well don't think it's actually ever rested just think it's been masked by the prednisolone) 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 rheumatoligy 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 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 sp 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 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've heard nothing (over four weeks now) Had bloods taken at the dept over 2 weeks ago, got my book back & my ALT is significantly down. And still heard absolutely nothing. So still not on Methotrexate. And no further to what to do next. 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.

Actually quite comfortable ATM (not ace but very livable) following IM steroid injection & actually feeling better in myself off the Methotrexate which I have always thought wasn't doing me any favours so no rush to go back on it. Also seem to be losing a little weight (does methotrexate put weight on you as well as steroids?) So how long does Depo Medrone (120mg) IM last for? And how often can you have it?

Anyway also mention the 'Enthesitis' possibility to GP who also hadn't heard of it. Told her about Chapel Allerton & she agreed it's worth a consultation. So finding out some info to who the consultant is who is specialising in it - does anyone here know? 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.