Stronger Meds?: Anyone else had probs with getting... - NRAS

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Stronger Meds?

Anyone else had probs with getting stronger meds? Ellie got a emergency appt today at james Cook, (102 mile round waste of time today.) but we saw a registrar not consultant . She has been taking Piroxicam melt since Friday, 1 a day, 8 Tramadol & between 6 & 8 paracetamol a day. Had awful fatigue..which I assumed was the Lupus, yet the registrar has said to wean her off the Tramadol ?! I tried to get across that it`s not a continuous fatigue & that the tramadol does help the pain a no avail ?! Problems with the `nuclear `count in her bloods & the best bit ?...they wanted to admit her but Rheumatology dont do Peadiatric beds & paediatrics dont have any empty beds??!! So we have to wait for the call...even the nurses advised us to get her admitted through our GP.

Sorry to drone on, but really felt worthless & had a totally wasted trip today. Ellie totally demoralised.

4 Replies

Hi Ellie and mum,

I was diagnosed last summer- my GP has been more helpful with pain meds and the rheumatology nurses with drugs for the rheum.arthritis-i'm in Hartlepool and have a number to ring the nurses direct and they will talk to the consultant if i'm in a flare or have trouble with drugs or pain. They can arrange appts or changes to DMARDS via consultant. Not sure how it works at James Cook.

I don't know what Ellie has tried so far- paracetamol alone does absolutely nothing for me but works well in combination with codeine, either co codamol or solpadol (codeine phosphate and paracetamol) which is stronger. I do have tramadol for an unrelated condition but find it does make me very drowsy and so tend to avoid it unless desperate.

I hope Ellie gets sorted soon and finds a dmard and painkillers which work. I did get fab results from plaquenil but had to come off due to side effects of itching. My brother in law who has lupus has been on this for years without problem and is well controlled, so when they find something to suit it makes all the difference. Hang on in there something will eventually work. Good luck with the studying for GCSE'S (the Bookseat -£21.25 on Amazon is great for holding books when hands are sore!!)

Polly xx


Oh dear, I'd get straight on to your GP and explain what happened and ask if they could intervene to move things along more quickly.

If he/she wanted to admit her then they're obviously taking it all seriously, but how silly not to explain things to you more or tell you more about the next steps, and give you some help with managing pain. Did they give you more of a hint about what the 'problem' was with the nuclear test (I guess is a antinuclear antibody test) as this is normally a useful diagnostic test. Sounds as they didn't explain why they wanted Ellie weaned off Tramadol either, as there may well be a good reason given she's so young.

But often do find that I feel let down after a visit to consultant as it is something that I build up as being the answer to loads of problems, and then when that doesn't happen it feels horrid. So I really hope you'll get a bit further forward soon. Polly


Thanks, Polly,& Polly !

I really dont think the registrar understood that we were concerned about the pain relief not lasting & she thought we were worrying about the constant tiredness & drowsy episodes..(due to the lupus..which she looked quizzicaly at ) then checked her notes...oh yes she has Lupus too ! Codeine knocks Ellie out completley so that`s no go !

The lovely rheumatology nurse at James Cook rang this afternoon & I bombarded her with 1001 questions, Ellie is too young for the reumatology ward..she said it really isn`t `child / young people friendly. ..only admit onto there if a dire emergency. Shes` emailed the consultant that we saw initially, & said if it carries on over the !

Unlike the registrar yesterday she said the Piroxicam melt should be working by now too.

The rege didn`t elaborate at all on he `nuclear` test results, but he nurse today said it doesn`t tally with all other symptoms & results so heamatology are involved now too.

car broke down in me today too...fuel pump gone, thankfully wasn`t on way to Middlesborough yesterday...that`s just topped a dire week off beautifully ! xx


I pleased the nurse rang you,.so sorry you both are having a rough time

8 tramadol is a lot even for an adult not many adults take that many.., think that is why they are concerned? remind me how old she is again?. children under 16 are normally only prescribed a maximum of 2 a day in my health trust, also some drugs can aggravate the lupus symptoms it is possible to get drug induced lupus as well as systemic lupus.

Oramorph a fairly weak liquid form of morphine sulphate might be a possibility ask your Gp / rhuem nurse if this is suitable for Ellie x


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