NRAS
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So far not so good

It’s been a little while since I last wrote on here. Everyone was so supportive then and I’m in some need of support again. In October my GP referred me to the Rheumatologist because of severe pain and swelling in all of my joints. Blood tests suggested RA. Since then It has been an uphill slog. Initially my GP put me on anti-inflammatory medication to give me some relief while I waited to see the specialist, but It had a bad reaction with my asthma and I’m no longer able to have anti-inflammatories. I work full time, (although the bad reaction kept me off and on steroids for a week) The steroids gave me some relief in my joints. But now they have finished and all I’m on is paracetamol, I’m in agony again. I’ve been given co codamol too but I’m reluctant to take them when I need to drive and work. My appointment isn’t until March, 5 months from referral 😩 initially it was May but the asthma reaction brought it forward.....

Can anyone suggest anything that might help me until March?

I’ve also convinced myself I’m going to have a heart attack or stroke before I even get seen, which means I’m pretty anxious too.

I’ve also developed swollen glands in my neck, which are also associated with RA apparently and really uncomfortable, can I do anything about that?

Despite telling myself I was going to stay positive, I’m really struggling and all in all, I feel rotten, frustrated and scared.

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Hi it is a hard one .can you no try other ones with paracetomal .dyhydracodine maybe .not as strong you might manage .or similar .just tweeting finding something that won't make you drowsy .another thing you can try and don't feel your a pain is phone hospital your rumatologist receptionist every 2 weeks and ask if any cancellations it sometimes works and sometimes gets you seen quicker if they ask why your phoneing and you tell them your in a bad way good luck take care

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Hi,

I am sorry you're unwell and I'm sorry your rheumatology appointment is so far in the future. If you are able to travel, have you tried asking for an appointment at another hospital? The hospital near me has long waiting times for appointments, but by casting a wider net I was able to get an earlier appointment. I got one at one of the community hospitals in a nearby village. It's actually the same rheumatology trust. It's not a convenient location, but like you, I just want to get started finding out exactly what's wrong.

Additionally, as you have new symptoms, a new GP appointment may help getting you an "urgent referral" label which may help getting an earlier appointment.

Best wishes,

Emilie

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Thank you for replying Emily. Unfortunately where I live, (Isle of Man) there is only 1 hospital. But anyone else following this and seeing your advise will hopefully do as you suggest. 😊

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I see. I just had a look at wikipedia, I didn't realise the Isle of Man had such a small number of inhabitants, no wonder there's only one hospital! Then I guess Ajay575's advice is best: call regularly to ask about cancellation (or get on a waiting list if that's a possibility).

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Hi Laura, I got my first symptoms ( trigger fingers) last March and I suggested to my GP that instead of me having to wait to see an NHS Rheumatologist, that I see one privately which he agreed was a good idea. So I googled local private Rheumatologists and got an appointment in two days. The Rheumatologist started me on Hydroxychloroquine, so I was on that, throughout the 6-8 weeks before my NHS appointment came through. He also wrote the referral letter to the NHS consultant. It was worth every penny to get started on treatment so quickly. I must say I got the shock of my life when he said inflammatory arthritis. I hadn't been expecting that at all ! BTW I love the Isle of Man. Have spent a lot of time there over past few years staying in Onchan.

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Hi, havent been on here for a while but really felt for you. I would go back to your GP and say everything you've said here, particularly the pain and distress it's causing you; write it down if you have to, you are not a hypochondriac! Ask if they can get you earlier/emergency appointment: I got emergency one within 2 weeks after fingers started swelling on top of 6 months of random symptoms/ suggestions: asthma, copd, tenosynovitis, hip i couldn't walk on, drop in, gp's appointments etc etc. I had seen same nurse twice, she was great. Most strong pain killers make you feel dopey: had tramadol after sleepless painful nights though no one wants that all the time; tell them current painkillers have no effect. I only got through work by sleeping 3 hours a night when I got in and kept having time off.

None of the above is medical advice, I'm no GP,, but 3 months sounds an awful long time and time is of the essence with this. Really good luck, you're important too!

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Thank you Kerena. Mine was a bit of a rant wasn’t it 😊

It’s all so frustrating and scary. I’ve emailed the hospital to find out about paying privately for the 1st consultation, just to get my foot in the door quicker. You can’t really put a price on your health, although it galls me slightly that I have to resort to that.

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Not a rant at all, totally justified. It is scary and debilitating. Can remember sitting outside first rheumatology feeling numb; I ve only being diagnosed since August. Hope you get some answers and treatment soon, didn't realise you were Isle of Man, sorry. I'm in city but everything seems to take so long doesn't it? I did have long lasting steroid shot at start until drugs kicked in, hopefully they give u something similar, good luck x

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Oh dear, that sounds awful! Go back to your gp, they need to give you something to help in the meantime. Why did you come off steroids? You should be able to take a smallish dose while your wait for your appt? You need to get on with your life which you’re obvs not able to do at the moment. Hope you get what you need 😊

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The steroids were to get my asthma back under control after an adverse reaction to the anti-inflammatory. I did feel so much better while I was taking the prednisone 🙂 almost youth like

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I really feel for you at this time. I went private to get ball rolling. I really hope you get sern very soon. Dont let it go....unfortunately those who pester often get seen sooner....not the way it should be but it often is.

IOM great place. My gran was manx spent many a lovely time there. Also 3 if my sibblings were born there.

All the best.

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It really is a lovely place.......until you need to see a rheumatologist 😄

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I wonder if it's possible that you have polymyalgia rheumatica rather than RA or maybe even both. The reason I am suggesting that is because PMR pain just not respond to pain medicine but it responds quite well to prednisone as long as it's a high enough dose. When your doctor did the blood work did he/she test your inflammation markers? The two that they typically look at for PMR is your sed rate (ESR) and your C-reactive protein. If these are elevated then it's a good chance you actually have PMR.

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This is very interesting and this is why I need to get my appointment isn’t it.

I have some of my results to hand but it’s all gobbledygook to me. Maybe someone in the know will have an idea.

C reactive = 1.7, Rheumatoid factor = 320, plasma viscosity = 1.76,Fibrinogen level = 5.74

😳😐🤪

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I really feel for you.

I've been diagnosed since 2001 when I was living in rural South West Cork in Southern Ireland. My symptoms were so severe that my GP said "Can you afford to go private?" I just about could and it was worth it. He immediately got me an appointment with one of the top men, within a week of me getting the mighty blow of long term illness diagnosis. I will always remember how I felt that day.

I was fast tracked onto a biological (Enbrel) and that was a miracle for me. The last two years have been more down than up because I had to change medication. I was almost as bad as that first year and it was so difficult. Had to phone Rheumatology and my GP a lot to get some additional pain relief - He's now prescribed Co codamol, which doesn't seem to make me drowsy like you experience, and Naprosyn which I only want to take in the short term.

The last Rheumatology assistant I saw gave me a full leaflet of Pain and Inflammation relief options. If you have a number maybe they could at least send you that. It gave me ammunition and information for when I saw my GP again,and he did prescribe me he 2 extra items. These have helped and I'm slowly reducing as I feel better. You can go around in circle between GP and Rheumatology. They leave it to GP's to prescribe non disease modifying drugs and, my GP at least, is reluctant to prescribe anything unless the Consultant requests it.

My big gripe is the lack of interaction between areas in the NHS

I hope that this helps

I really wish you some speedy help and support - try not to be scared just fight, push (politely)and be pro-active. I know how exhausting and demoralising it can be . Make it so the Health Care Team can't ignore you and know how bad things are for you.

Wishing you all the best

Michele

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There was/is someone else on here from Isle of Man who also had a dreadful time getting appointments. Not much help to you tho'!

But waiting till March is dreadful. If you can't afford or get access to a private appointment, as others have said you need to go back to GP and really push to get some support in the meantime. A steroid jab, or a low dose of steroids. 5mg or less for 3 months is apparently ok in terms of long term problems, although you will have to come off them well before your appointment.

As far as your result go, you don't list the units they were measured in but your C reactive protein and PV levels look normal, so you are not showing a lot of inflammation in your blood. But some of us don't. These tests can be high in both RA and PMR - diagnosis is a combination of a number of things the docs assess.

The Rheumatoid factor is strongly positive, which increases the likelihood that you do have an inflammatory disease but this test is only about 65% specific to RA. And without the units I can't suggest whether the fibrinogen is high, normal or low....

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Hi. So sorry to hear your plight. I was diagnosed with RA in January 2015 with ra positive blood results. Until your appointment in March you could perhaps take turmeric, ginger and/or garlic. All these are natural anti inflamatories and might give you some relief. Exercise also helps to loosen up your joints. Good luck and wishing you a good Christmas despite your joint pains. Dee

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Thank you Dee, that’s really helpful. Would I just add it to cooking or do I get something from the health food shop?

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