Can a GP commence treatment for RA while waiting on Rheumy appointment?

[luckyduck]

Following months of symptoms and different diagnosis, my GP has decided to start me on Sulfasalazine with 20mg Prednisolone and monitor every 2 wks. Has anyone else been treated this way. Also is it possible that i have a different dissorder to RA. What other conditions improve with steroids. I was previously (2003) diagnosed with Fibro Myalgia. Could it be a flare up? How can they tell the difference??

[Philip]

Hi, with fibromyalgia you DONT get any swelling as you do with RA, perhaps have another word with your GP about your worries and concerns, that way either he can put your mind at ease or try to speed up your Rheumy app.

I hope you find the answers you are looking for.

[luckyduck in reply to Philip]

Thanks Philip Thats very helpful.

[earthwitch]

Its definitely not usual for a GP to start treatment that hasn't been ordered by a rheumatologist, but in your case I can kind of understand it if the GP thinks you have an inflammatory arthritis and the rheumatologist doesnt. If you respond well to the RA meds then it may help you get an RA diagnosis. I don't quite understand starting both SSZ and prednisolone at the same time though. I had a rheumatologist do a steroid trial first, as that shows quite quickly if there is an underlying inflammatory condition. If that was positive then I guess it would be worth starting the SSZ. On the other hand, I guess the thinking might be that it will take some time to build up the SSZ in your system, so the prednisolone can cover you in the meantime.

Any kind of inflammatory condition can improve with steroids, and not just RA -- spondyloarthritis (AS or PsA)will also usually improve quite dramatically on that kind of dose. Fibromyalgia shouldn't improve with steroids as it isn't an inflammatory condition - and if it does improve, hints at the diagnosis being wrong.

I'd still be a little concerned about long term treatment just by a GP, so as soon as you show some response, ask your GP to refer you back to the rheumatologist (or to a new rheumatologist) with the new information.

[luckyduck in reply to earthwitch]

Tks for your very comprehensive reply Earthwitch. The reason for the SSZ and Pred treatment is that GP did steroid test and I dramatically improved. In fact I could walk unaided in a matter of hours. My symptoms showed signs of returning when I dropped to 10mg so he decided to start Sulfa and give Pred 20 as well.I think myself I would be happier being overseen by a Rheumy.

[earthwitch in reply to luckyduck]

I would be thinking the same as you - even a GP interested in rheumatology isn't going to have the expertise of a rheumatologist. Try asking again to be referred, saying just what you have said here - that you would be happier being overseen by a rheumy, and having a rheumatologist confirm the correct diagnosis, which isn't necessarily RA - it might just as easily be one of the spondyloarthritis group if it was dramatically helped by steroids. Also, its not a good idea to stay on that amount of steroids any longer than you absolutely have to.

[Hidden]

Hi - yes I was started by my GP on Sulfasalazine. He knew I would have a long wait despite a very early referral and he was sufficiently convinced by my blood results and by my symptoms that I had an inflammatory rheumatic disease. He felt concerned that the long wait to see a rheumatologist could leave me outside the recommended "window of opportunity" to treat it. Unfortunately after 3 weeks on Sulfa I became very ill and ended up in hospital from a bad reaction to this DMARD so I had to stop. However many people to well on this drug and it is well tried and tested having been around for a long time. I'm a bit unsure about why they want to keep you on Prednisolone too though as it will be hard to tell if the Sulfa is working or not unless they wean you off after a few weeks once the Sulfa is in your system properly.

[luckyduck in reply to Hidden]

Sorry to hear you were so unwell. Its good to know that other GP's are prescribing as anyone Ive spoken to had to wait for treatment by hosp staff or rheumatologist. I wasnt sure as my GP is a bit 'Maverick'!

[Hidden in reply to luckyduck]

Sometimes we need mavericks! He did say he wouldn't prescribe any other DMARDs but felt quite safe with Sulfa. My rheumy consultant eventually wrote and said he would prefer to see me med free but it was too late. A Kenalog jab had already been administered and steroids stay in my system for ages so this prolonged my diagnosis. I would agree with Cathie - try to wean yourself off them if possible - especially in time for your next consultation. Twitchy

[cathie]

It's worth knowing that it can be quite tricky to taper off the pred. I didn't know that and I'm not finding it easy to come off three months on 10 mg.

[Zigzager in reply to cathie]

Hi Cathy, I have found tapering 1 mg per month works for me. Slow but effective.

[cathie in reply to Zigzager]

I'm trying one a week, so if I find it hard after 7 I might try yours. Are you off completely

[Zigzager in reply to cathie]

Down to 4 mgs from 10 mgs, but got off completely this way before. This was for a mega flare.

[luckyduck in reply to cathie]

Hi Cathie, Im only on Pred a few days with dramatic improvement at 20mg. When I started to reduce to15 and then 10 the pain increased. I do hope I can come off it smoothly as I have recently been diagnosed also with Osteoporosis. Im 50y but feel more like 70y a lot of the time!!! Many tks for your reply

[cathie in reply to luckyduck]

I understand it's much easier when it's a short period. Hope it goes well for you

[nomoreheels in reply to cathie]

You're so right cathie. I'd been on low dose (3mg) on & off for about 4 years & then continually for a year tapering off last Jan & Feb as I'm osteopenic borderline osteoporotic. My GP reinstated them last April as I was in a state near to the end of tapering & I'll see what my Rheumy says about that & which route to go when I see her next month. Hoping she'll review all my meds & suggest a better mix!

[earthwitch in reply to cathie]

My GP seems to understand Pred, and believes that it can be hard to taper off after even just a couple of weeks. The problem with pred is that the effect isn't at all long lasting, so its very tempting to stay on it, when really its best use is as a bridge while other treatment kicks in, or to give a bit of short term and temporary relief for the breakthrough pain of a bad flare. I only ever take it now for ten days to two weeks maximum. I'm not able to take any of the other meds at the moment so I do end up having to have it far more often than I'd like, although my GP is happy for me to have it every three months if I need to.

[luckyduck]

Thanks all. I havent seen a Rheumy for many years since my diagnosis of Fibro Myalgia in 2003. I have a chronic back condition, so to be honest, I have endured any pain from waist down believing it was to do with nerve damage. It was when my sister was diagnosed and treated recently with RA that I identified with her description of pain in wrist,finger and anklejoint also from time to time in my knee and hip. (My Mam also has RA). GP had checked me last year but was sero neg and again in March this year. He has always believed I have RA due to heat and swelling (and my symptoms disappeared early this year when on steroids for lung prob). My recent bloods did show slight elevation in reactive protein and Ferritin was high. Doc did another steroid trial last week reducing meds every 3 days 20mg-5mg and I dramatically improved. I mean amazing! I was on crutches for ankle pain (after attending A&E twice in a few weeks with unbearable pain) and after few hours on Prednisilone I was walking around practically pain free! When the med reduced to 10mg symptoms returned so he decided to up the dose again and start me on Sulfasalazine. Im a little worried as while he seems a good GP, he is a bit of a Maverick so Im wondering if I should 1. wait and see how I get on with this treatment or 2. push to get a Private appt with Rheum as I will be waiting over a year in the Public system.

[luckyduck]

Just one more point, I have never experienced tiredness like recently! I suffered insomnia for years and could cope with very little sleep but now Im sleeping 12+ hours and waking still tired. I havent started the Sulfazanine yet so Im just on my usual meds Analgestic and Morphine patch and now steroids. Is tiredness a factor of RA?

[nomoreheels]

My treatment was slightly different as I wasn't diagnosed in the UK but my GP did my bloods to confirm RD & asked me to try & cope on ibuprofen in the interim but asked me to stop it a few days before further blood tests used as a base line for the diagnostic clinic. I was sent the following week to the clinic for a full assessment & was prescribed celecoxib, corticosteroid, hydroxychloroquine & pain relief to put me on until my appointment with my consultant 3 months later who did his own tests, bloods, xrays etc. & prescribed his preferred meds.

My reply may or may not help rather another aspect of early treatment.

[luckyduck in reply to nomoreheels]

That is helpful nomorewheels. Im in Ireland and the wait for Rheumy is about 14-16mths unless you attend A&E or pay privately. I was in A&E with severe ankle pain -but because I was treated with suspected injury in my ankle (despite me saying I had not injured it), they are not prepared to investigate now for RA. Even though practice nurse in hosp says he thinks this is my prob, so GP has now taken the 'Bull by the Horns' and is progressing treatment! What a really unfortunate health system we have.

[nomoreheels in reply to luckyduck]

That's a crazily long waiting time, & not good to boot clogging up over stretched A&Es is it? They can't be expected to provide specialist advice or treatment as the visit with your ankle proved. Private consultations aren't an option unless you've made the decision yourself in investing in medical insurance & why should we having paid our taxes for the NHS all our lives? I thought is was bad enough on the mainland with 6 monthly Rheumy appointments but your situation is far worse.

Pleased though you are now on the road to being treated & just hope that no long term damage has resulted in the delay. But do wonder why the delay when there is obviously family history.

Keep us updated with how your get on. Just a thought, do you have a cancellation list in operation in Ireland? If you're able to attend at late notice & there is such a thing in place there it might be worth mentioning it to your GP to fast track you.

[ciarao in reply to luckyduck]

Oh no don't tell me the wait is that long. My gp told me she has marked my case urgent and would expect me to be seen in 3 to 4 weeks!! I'm also in Ireland, in Dublin.