NRAS
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Getting massively stressed about my rheumy appointment on Tuesday :(

I have a rheumy appointment on Tuesday that I've had to beg and beg for. I was diagnosed in September last year and they couldn't do enough for me but then I failed on my fourth dmard in February and became persona non grata.

My symptoms have got worse and worse and I am at the end of my tether. According to three GPs and an occupational health doctor I have obvious swelling in all my fingers, my knees which one described as wobbling like a jelly. Swollen ankles and swollen elbows. My bloods however are normal now. Last year all these symptoms were described by the hospital as RA. In June however I had an ultrasound on my fingers that did not show inflammation only fluid. After putting a complaint in I was seen by a consultant who again said well there is a bit of fluid, try some anti-depressants.

I am totally at the end of my tether, I am in constant pain, I can't bend my knees or ankles, my hands are so stiff I've lost all my dexterity. The rheumatology physio confirmed all this.

I am terrified I am going to see the consultant on Tuesday and be told sorry can't see anything wrong. Nobody, not my GPs, not my Occ Heath doctor or the physio can understand why they keep saying they can't see such obvious swelling.

Has anyone else had this? I'm told I have extensive fluid in all my joints but no inflammation so I don't need treating. My GP has told me to refuse to move out of the clinic room until I get something done

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Hi I had similar .gets you upset .Surley.he will try 1st line medication .if not stick with gp not worth grief .painkillers physiotherapy maybe way ahead .that's wot sayed to me.he did say something similar it was unless there is inflammation in blood won't try disease modified drugs again cause of risks maybe thats wot a lot of them do .good luck and speak up at appointment maybe take someone with you ?

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What about the fluid, has anyone actually said what it is? It's just so odd that you've even had a confirmed diagnosis & I know there's this thing about the DMARDs (more questions on that later), an RD diagnosis doesn't just disappear, proof perfect with all your affected joints.

Now DMARDs... the ones you tried, did anyone think of returning to them individually at their lowest dose possible? Thinking of MTX at 5mg, HCQ at 200mg, SSZ at 500mg, LEF 10mg, thinking at lowest dose side effects should be less & they usually become less troublesome as your body becomes more tolerant of the med, then they could be increased over a longer period of time as you respond, or not. Also timing, did anyone think of the timing of your dose? Apols if all this was tried, just wanting to cover all options as go in a too high a dose & you risk the possibility of more side effects, it's common sense really.

Or, was any thought put into starting on steroids & NSAIDs? I know steroids aren't for everyone especially at higher doses but they can be less harmful sometimes when used at low doses or started higher & tapered until your inflammation is brought down then introduce a DMARD, at low dose, & remain on the NSAID.

Just my thoughts. Whatever happens I hope all goes as it ought on Tuesday. I trust it's a different Rheumy?

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Yes i failed on the dmards because I couldn't tolerate them. They were absolutely convinced I had RD because it showed in my bloods and because of all the swelling they now claim they and only they can't see

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Yes, but what about the dosing & timing? Is any of that helpful at all, or even worth discussing to at least get some control.

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Yes taking someone with you could be an idea - particularly if you have someone who is totally rock like who will not budge. Sounds as if the best would be get your GP to come with you! He/she sounds as if they have sense.

I imagine you have notes of everything, but I guess the most important is to stick to your polite (and entirely reasonable) demand that they continue to investigate the cause of your problems and find a treatment. And keep repeating that you cannot live as you are as symptoms are too debilitating.

If the most obvious symptom that they can see/feel etc is fluid on your joints has it ever been suggested that this should be analysed? Here's some info about this testing

labtestsonline.org.uk/under...

Anyway, I'll be routing for you and have all fingers crossed.

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NRAS suggested I ask about testing the fluid. Apparently they rarely do this now because of the risk of infection. My GO says the only disease that fits with my symptoms is RD and the fact that last year I had an abnormal anti-ccp would point to that. The hospital was adamant I had until it looked like I might cost them more

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The Hospital consultant is there to make a clinical decision as to the next line of treatment. I don’t believe ‘money’ is allowed to come into their decision making process and should not affect you getting the right treatment.

You haven’t mentioned what options are available to you but it might be helpful to have your own wish list.

Remember there are lots of folks supporting you including your GP. That is a bonus. Be thinking of you tomorrow.

BG

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He might take fluid out there and then .sore .he did that on my knee .you could ask

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Dear Helzbells

I was sceptical about changing consultants in the same Hospital but it worked out better than I could imagine as the new consultants gave me an accurate diagnosis and treatment plan.

I hope this happens for you. You need a treatment plan to halt the progression of the attack on your joints. Fluid om Joints = erosion. Not good.

Is there someone who can go with you to support you? If not it may be helpful to make notes or bullet points you can refer to as sometimes we can forget things when under pressure or stress. Doctors should not be causing us unnecessary stress they are meant to help!

Can you phone NRAS helpline for support?

Hope the appointment has s positive outcome for you

Thinking of you. Let us all know how the consultant appointment goes.

BG

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Terrible - don't put up with this treatment or rather lack of it. I would love to come with you to your appointment. Ask - no INSIST on a rheumatoid factor blood test and several x-rays. This is after you have ask your consultant how long they have been in their job !!! Ask for another opinion from one of their colleagues. Ooo, it makes my blood boil - you'd never guess would you lol. Be polite but firm. All the best and take care xxxx

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Why don't you ask your GP to refer you to a different rheumatologist?

Sometimes that works.

Although I Hope your fears are groundless & your rheumy appointments goes well.

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I would follow the advice of your gp and refuse to leave.

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Unfortunately I have been through this with my GP or PCP. For over three years I told him there was something wrong.

Started in a finger, he said I sprained it ( i did not) wrists- said carpal tunnel, hands -overuse, feet - high heels ( I told him I never wear) then he blamed my running shoes, shoulder he told me I injured it at work ( I did not, just woke up and it hurt) my finger became stuck in an abnormal position and couldn’t be straightened. I had to crawl to bathroom on hands and knees to get to bathroom. Over and over he dismissed me and told me there is nothing wrong with me. I once brought someone with me, I told doctors I think I have RA. He asked why I thought that. I told him because if all my symptoms and my dad had RA. He literally laughed at me and told me RA does not run in families. He had taken numerous X-rays ( I believe he never looked at) and told me nothing was wrong with me

The nurse looked at my finger and was shocked she went and talked with this doctor and he agree to run a Lupis test

I was at the point I knew I was gonna loose my job. I was in agony. I went again to see this doctor, with a deep resolve. If he doesn’t help me I will never come back, I was stoic and determined. He looked at me and said “ I think you have RA” and sent me to a Rheumy.

Rheumy confirmed almost immediately from X-rays had three joints all eroding.

I went back to PCP and he made a comment about Rheumy not thing I had RA. I told him that’s not true, Rheumy gave diagnosis very promptly ( I did not tell PCP that Rheumy was pretty horrified at how long it took my PCP to refer me and seemed quite disgusted that he let me suffer for three years, Rheumy said the erosions could have been prevented with prompt treatment.

I told my PCP to look at my X-rays. He put them up and said “oh so you do have RA”

I do not go to this PCP anymore. That was about 3 years ago. He is now under investigation for using dirty tools. Anyone who saw him between 1979-2017 has to get HIV and Heptiptis blood tests. It’s was big in the local news as his practice was shut down. He’s up and running again I hear.

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Thank goodness your GPs and others can confirm the extent of your swelling and consequences of it. I wish you all the very best for Tuesday and sincerely hope the consultant does his job and comes up with the goods. Huge hugs

Jan

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Thanks everyone for all your support I really do appreciate it xxxcc

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Hi, sorry not had time to read through replies and hope this isn't repetitive. I'd try to go in there with a positive (fake it if necessary!) attitude that this consultant is there to help. My knowledge is limited, but it seems we don't all fit into an identical RD box and may show different signs clinically especially in the early days. Even if he's now unwilling to make a firm diagnosis based on latest results you expect at the very least a plan going forward and pain relief for now. Four Dmards between Sept and Feb seems a lot in a short period of time, particularly when we know how long these things take to work. Is it worth telling him you're happy to start from scratch and revisit the Dmards one by one to see if your tolerance can be improved? I'm in the early stages of RD, came on suddenly and I've seen 3 rheumatologists and scarily, diagnosis seems far from an exact science. Could the Dmards you've tried have contributed to your now-normal-ccp result? I hope he acknowledges that clinical results don't give the full picture. Try and approach it as if you trust he will help - and I hope he doesn't let you down. Best of luck.

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Hello Helzbells ,

Good luck with your appointment today. I hope you take a list of symptoms and treatments tried so far? Take a level headed friend with you who can help you be firm?

I hope you get an agreed treatment plan so you don't feel left in limbo anymore?

Best wishes xx

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How did the appointment go today?

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