NRAS

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RA & Fatique Updated!!

Hi All, an update to my previous post... rang to see my consultant after finding out I was 6 weeks overdo to see him & NO letter etc! Upshot, he was away again & saw the Specialist Nurse who fetched another consultant in who agreed that the swelling in hands, knees & feet were indicative of the current drugs not controlling it! The RN did a Das & I didn’t think to ask what it was, I’m a wally lol! But, her & the consultant have upped my MTX to 25mil & my SFZ to 6 x 500mg a day, gave me literature for biosimilars which are pending discussion with my own consultant when he comes back! Phew, am relieved that someone is finally taking notice, felt

Quite emotional! However, I have absolutely no faith in my own consultant & I am sure he will put the complete kibosh on it as he’s been very dismissive of any pain & swelling in the past by saying it’s fibromyalgia along with RA! I know I have not got Fibromyalgia....so we will see at my next appointment.. thank you to everyone who has commented & given me advice on my last post it’s very much appreciated😘

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Methotrexate

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Interesting as I keep getting fobbed off that my upper body pain is fibromyalgia and my knee pain is osteoporosis ( although there was no sign of that when I saw orthopaedics)

What was also interesting was that when I had to go on a course of steroids due to not being able to have my iv tozilixabab. Everything eased including the ‘fibromyalgia’ yet I didn’t think steroids worked for fibromyalgia.

I have a consultant who’s never there too 🙄

That’s about parallel with me. I was 62 1/2 when I was diagnosed & always have the feeling that if you are over 60 your quality of life is less important & cheaper drugs will do. I know I have not got Fibromyalgia & I get quite annoyed that this is used to fob me off when I say my Methotrexate is no longer adequate, instead of “stepping up” to better, albeit more expensive drugs. Still think my consultant will block them, no confidence in him at all..😘

Have another word with your consultant-I was put on biologics when I was well over 70 & my DAS had gone through the roof......I now have a much better quality of life ......in fact in a very good place.

I do agree though that you really do have to plug away as you get older...especially if you have a young enthusiastic rheumatologist.My rheumy maybe a bit ancient....he doesn’t promise unrealistic outcomes from drugs, but he does listen & prescribes what he thinks will work, & it’s not necessarily the latest wonder drug.

Thank you fingers crossed my consultant with have listened to the covering consultant & the nurse specialist by the time I see him on 8th May xx

You can ask to transfer to the other consultant it is within your choice to do so. If your not happy with him change darling.xxx

Yes but as he is covering for my consultant so unless he becomes permanent it a non starter 😢

Speak to PALS at the front of your hospital if your in the UK ask them for the change of consultant.xxx

Thank you xx

Sending love to you and hoping that you’ll begin to feel the benefit of the increased meds very soon 🤞🏻.

So glad you have got some results at last hope all goes well when you next see consultant xx

DAS is disease activity score. Nurse looks at hands fingers shoulders etc and checks how tender they are and that is an indication of how active the RA is.

Unfortunately though it’s not an exact science....clinicians don’t always give the same score to each joint & one point too few can leave you below the benchmark.

But you do need a DAS score of above 5.1 to be considered for biologics (in Scotland anyway). So it is useful to have it done. I asked my consultant to do mine, knowing it would be high, when I was challenging my treatment. On self assessment with the NRAS app I was scoring over 6. She scored me at 5.5, but a review put it up to 5.8.

So yes a bit subjective but 3 sets of scores easily agreed that I had high joint activity, well above the threshold for a change in meds.

So if you are sore, tender and swollen it's well worth doing.

Yes 5.1 is the usual DAS score needed in England by most health authorities.

But as I said, & as you have found it is subjective. Consultant A could conclude 5.0 & Consultant B 5.2....with B your doctor could apply for funding for Biologics ....with A he wouldn’t bother applying,

I can’t remember what mine was, but although the funding was approved it was 6 months from application to actually starting Rituximab.... but it was well worth the wait as I am now just about pain-free and have gone onto yearly infusions and hopefully will not need them even that regularly.

Yes, medicine is not as scientific as it claims to be anyway, everything is subjective to a degree, including interpretation of MRI/scans/bloods etc. And most of all ...diagnosis.......Which is why it is important to report all tender or sore joints, even those that are causing less trouble than the more troublesome ones.

I only waited 3 weeks to be started on biologics, but my DAS was high I had high synovial activity on MRI and was unmedicated.

Unfortunately with very short NHS appointments it’s not usually possible to have the luxury of deciding which joints are most troublesome....I speak to people in the rheumy clinics who are in a bad way & they really don’t get long enough to consults to discuss anything in such detail......

In my area they are cancelling the supposedly 6 monthly Regulatory appointment with your Consultant if you are in Biologics...mine was moved from March to September....thankfully I’m not bothered, but if I were in need of seeing my rheumatologist I would be not be very happy.

After a long time of poor care I don't allow myself to be rushed anymore AC and have vocalised this to my consultant. I won't apologise for demanding good care, I expect it and have said so. To a degree you get what you accept.

I take time to prepare for appointments and take summary sheets of my progress and deterioration. I insist on covering the top 2/3 bullet points of each, it doesn't usually take long. I then submit the sheet for admission into my hospital notes.

If we go off track and the BS begins.... I interrupt and say I still have xxx to speak about with you.......My partner takes written notes throughout the consultation and regularly mirrors what is being said and asks for clarification if necessary. She recognises his orange notepad now and smiles. Good.

The summary sheets are all there in my notes, I've seen them and have them through a FOI request. The summary sheets also include a summary of my previous appointment her. No wriggle room given to say anyone didn't know, or I didn't report...whatever.... that is long past.

Everything is there in writing for all to see and I told her I had my notes through FOI.

The quality of my care has improved immensely and my relationship has improved with my consultant, we even had a we chat about although she is Italian her mother tongue is German, her homeland etc, all very pleasant, whilst she was filling in electronic forms on my behalf. My last appointment lasted 15 minutes, my allotted time. Previous ones have ran over to 50 minutes, as we refused to budge until I was listened too. If needed I would do it again.

I encourage everyone to do what it takes to get good care and have written about my experience on here before. You do not need to accept BS.

Advocates are available through the NHS, if people do not feel confident to speak as an equal with Drs.

Expect good care as the norm, if it is not forth coming take action.

If we all did this , I expect the quality of care would improve.

Goodness......you really have had a hard time if it, but I fear you are are not alone, & many people would just not know how to start on such a detailed process.....& I suspect advocates are not easily found these days?

I have been extremely fortunate and haven’t had to go to such lengths. In fact I have always had the most supportive of rheumatologists - I have only had two in 20 years, & both have listened to my tales of woe, & the treatments I have received have eventually borne fruit & I am a lot better than I ever expected to be. But it has taken twenty years.......& during that time I have made sure I made the best of the good times & just accepted the bad times as gracefully as I could...Because mostly I didn’t have the energy to do anything else.

I hope your new drugs start working soon .....I think the one thing,I recommend to anybody still waiting to find a suitable treatment is to try to be patient...... I know whenever I failed on yet another drug, that becoming angry & impatient only made me feel worse...it took me a long time but for me it seems to have worked.

You are lucky AC I've had c#$p from GPs, who are absolutely useless as far as RD is concerned, they are a danger to my health. I've had a rheumatologist who simply did not believe me as I am seronegative 'computer says no' type, now retired. My new rheumatologist was influenced by her, but to be fair to her when I dug my heels in and provided lots of evidence from FOI and personal reading , she began to listen. I'm happy with what she is doing for me now. But many, if not most people would not have challenged in the way I have done.

As for an advocate, many charities will help. I never attend an appointment on my own, and always take notes and always provide a summary sheet. It scares NHS and DWP staff into listening. I'm sorry it has to be this way, but it is not of my doing.

I don’t see my GP here for anything if I can help it. When I first went on to Rtx I naïvely thought my GP might vaguely know what it was until one of them asked if I had it every month. In my previous GP practice my Doctor admitted he knew nothing about RA but was very sympathetic and always referred me to my rheumatologist when I asked...& was generally sympathetic & didn't try to deal with problems himself.

This month I’ve been offered a live vaccine .....thankfully I have access to GP’s if I need one, but luckily I rarely do.

If Rtx keeps working I might only need to see my rheumy once a Year! Here’s hoping!

I so know where you are coming from , I had awful uncaring Rheumys. I had the same one now for six years dreading her retiring, as she understands me and is excellent, gives me all the time I need . Thinking of you Elizabeth x

Thank you, yes I dread seeing my consultant, doesn’t make it any easier to cope with this disease xx

NRAS

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