Advice for someone with very recent diagnosis and starting on the journey of investigation, treatment, etc?

[Aporiac]

I'm 61 (male) and was diagnosed with RA about 6 weeks ago (by a specialist at my first referral appointment following physical exam and blood tests). I'd really appreciate advice on what I should reasonably expect in terms of investigations & treatment now that I've been diagnosed. I'd especially like to know the likely timetable because I don't want to be in more pain than I need to be for longer than I need to be (call me selfish!). Past experience of the NHS tells me if you are not actively engaged, including regularly making yourself a pain in the rase, they can easily forget about you. Is that other people's experience (if they've got RA)? I'm in Warwickshire, England, BTW.

[Sheila_G]

Hi and welcome to the forum. You have got a positive diagnosis. That is good because you can now be started on medication asap. You said you were diagnosed by a specialist, presumably a rheumatologist. I am surprised you haven't been started on meds already. Have you been given an appointment for the clinic or are you still waiting. There are many different stories on here about how they were treated initially, meds, experience of follow up appointments etc. It is very different for everyone. I personally have had exceptional care for the past 19 years plus. When I was daignosed by a blood test I went for a private first appointment with a rheumatologist then continued on the NHS. I have no complaints as far as rheumatology goes. They have been amazing. I hope you find the same experience. Good luck

[Aporiac in reply to Sheila_G]

I'm so glad you've had such a positive experience from your dealings with rheumatology departments, specialists, etc. I can't even imagine being 19 years down the road with RA, although I expect you have the advantage of being an expert in your own right by now!

Yes, by 'specialist' I meant a rheumatologist. Interestingly, I followed your example, albeit nearly two decades later, and had a private consult because I was in a lot of pain (and had been for months and it clearly wasn't going away) and was struggling to get past the receptionist at my local surgery, let alone get my GP to take an interest!

Luckily, I did a bit of Web research, discovered that my symptoms matched classic RA so perfectly I didn't see how it could be anything else. I also found the NICE guidance on the management of the condition, which mentions the need for URGENT specialist referral and treatment if the condition is suspected. I couldn't see anything happening urgently at my GP practice, and had no idea how long I'd have to wait to see a rheumatologist following an NHS referral, even assuming I could wake up my GP, so I made an appointment for a private consult instead.

The rheumatologist confirmed the RA diagnosis, gave me a script for 28 days of prednisolone, and told me I should start to feel the benefit within 48 hours. She also said she'd refer me to her NHS clinic because I didn't have insurance, and someone on her team would be in touch shortly. A couple of weeks later I got a letter from the NHS Trust confirming a telephone appointment with a rheumatology nurse for 10th Aug (i.e. today - hence my post yesterday - I was trying to get informed prior to talking to the nurse!). I also received notice of an out-patient appointment with the consultant on 18th Nov.

I've now had the telephone conversation with the rheumatology nurse and it seems the consultant screwed up. She should have started me on Methotrexate (because commencing treatment with DMARDs should be immediate following RA diagnosis, and Methotrexate is the recommended first-line drug) as well as prescribing prednisolone as a 'bridge.' We think what happened is that the consultant didn't realise there would be a six week delay between referring me and me being 'adopted' into the NHS, during which time the prednisolone would run out, symptoms would return, and I'd be in the dark and on my own!

Anyway, the nurse was lovely and it seems I'm on the radar now! She going to order a chest X-ray, and a couple of blood tests that I must have prior to starting Methotrexate (which the consultant should also have done!) She's also going to give me a second 'bridging' prednisolone script to help with the pain (a lower dose than before, and also 'tapering,' but for 6 weeks.) And I've now got a number to call if I've got questions or things get really bad.

The consultant was right about one thing: after starting prednisolone I did feel the benefit within 48 hours. In fact, my symptoms started lifting almost immediately, and after 24 hours I was completely pain-free and was literally dancing around the room! I thought God had reached out and touched me with His hands! I went from a hobbling old man to a twenty year old in the space of a day! It didn't last long because I foolishly had the Pfizer Covid jab, which I didn't react well to, and by the time I'd recovered from that I was on half the steroid dose and the RA symptoms were starting to push through again! If I can get back to somewhere closer to the dancing twenty year-old and further away from the hobbling old man I'll be very happy! Here's hoping!

Thank you very much for responding to my post

[Sheila_G in reply to Aporiac]

I am pleased you are on the radar now. It is interesting to hear how people are diagnosed now and what the procedure is. At my initial private consultation I was given a general steroid injection which also enabled me to dance all evening at my nephew's wedding the following week. I was also seen in the clinic on NHS two weeks later. Of course we didn't have a pandemic then so it was easier to get in. I also had a wonderful GP who, heard my problems, sent me for blood test immediately, got the results and gave me the diagnosis, all within 24 hours. Amazing. I have had some bad times in my 19 years post diagnosis but I am now linedancing every day and feeling great apart from the occasional flare ups. I hope mxt works as well for you and you can polish your dancing shoes very soon.

[Aporiac in reply to Sheila_G]

"I hope .... you can polish your dancing shoes very soon."

Me too! Thanks for all of your general positivity - it's very heartening.

I never even knew I wanted to dance until I couldn't, lol. There's definitely a lesson in that about mundane stuff that you wouldn't even think about until you find it's been taken away from you or made considerably more difficult.

I had the strangest of experiences a few days ago where I needed 50 kgs of concrete for a small DIY job, but had completely ruled it out as something I'd be able to do myself. However, I had a couple of pretty good days and decided to have a go. I managed to mix it, and cast it using nothing but sweat and a shovel. It hurt like heck, and took a while, but it felt bloody great that I was able to do it! What would normally be a tedious chore became something precious! I suspect one of the hardest challenges may be adjusting my outlook, and finding positives wherever they can be found.

I must say, though, that you seem to have been fortunate with your GP and the NHS. It may be, as you have suggested, that there is a Covid factor, but sometimes it's just down to people. Hopefully, I've just had a shaky start and that pattern won't continue, although I'm going to take on board the advice of many here to stay informed and proactive. All the best.

[Sheila_G in reply to Aporiac]

I think the best advice is probably, don't give in to it but listen to your body. If it doesn't like it it will let you know. All the best.

[Llanberisman in reply to Aporiac]

My experience was very similar to yours, OP…paid for private consultation and had an RA diagnosis. Prescribed preds and moved back into the NHS. Preds were good, but not a long term solution. The NHS consultant started me on methotrexate tablets, after all the tests, with a plan to reduce the preds. Then subsequently added hydroxychloroquine and sulfasalazine. Three years on, I’d say the meds manage the RA, but I still suffer aches and pains, which move around and are a damn nuisance.

Learning to live with it is tough, but such is life.

[Aporiac in reply to Llanberisman]

I can believe that learning to live with RA is going to be tough at times because it's a bit of an elephant that once it enters the room isn't going anywhere! The "this is for life" thought is a bit daunting, but maybe it's going to be necessary to avoid such reflections, and just focus on smaller scale stuff.

The aches and pains that "move around" is a bit of an understatement and is actually quite funny in a black-humoured sort of way when you think about it. It's the strangest and most random of conditions!

For example, I can have my whole left hand, including wrist, thumb and every finger badly swollen, completely unusable, and extremely painful from the tips of my fingers all the way up my forearm as far as my elbow (which feels like an instrument of torture has been screwed into the bone), which then gradually subsides. And then a day later I wake up and just one joint on one finger of the right hand really hurts, lol.

What's that all about? How can it be so general in extent one day, and then decide to play games the next as if it's mocking me, and saying, "Look at the tricks I can play! I can hurt you a lot, or I can hurt you a little - it just depends on my mood!" I can see why people unfamiliar with the condition might be sceptical about the accounts of people who have it and may conclude, "Nothing could be that random - it must be in their head!"

I'm amazed at the amount and quality of the feedback to my question on this forum, Thank you for yours.

[Llanberisman in reply to Aporiac]

You describe the condition far better than I do. I’ve switched to injecting methotrexate now, which is an improvement and recommended. Keep smiling!

[Hidden]

I am so sorry you have had to join us but welcome.

RA can be difficult to treat as everyone one is different and one treatment does not fit all. Some get lucky and the first drug works for them and they are leading a normal life others have a more difficult time . The problem with RA medication is it takes about 3 months before we know if it’s working if it is great but many will try a combination of drugs often having Multiple drugs (cocktail) and as it takes so long for each drug to potentially work patience is one thing we learn .

Yes being proactive is a must . Contact your clinic/Gp if your in pain . Things are very unsettled at the moment due to Covid but starting to improve.

Best advice I was given was keep a diary with photos so you can show your team . Appointments are often rushed and we forget what we want to ask . Rest when in pain but keep moving.. I know very contradictory but we all have to find our own balance.

Please ask as many questions as you want this site is amazingly supportive as well as knowledgeable.

[Deeb1764 in reply to Hidden]

Agree with @J1707 this is a good start

[medway-lady in reply to Hidden]

Good advice, and here though Covid is making life very difficult the NHS is open but long delays. It's worse now than it was 6 months ago. The Dermatology service is quoting 8/10 months before they can see anyone so my husband has gone private Bingo " Are you free Thursday at 4.30pm ?" I'm lucky no need to see RA team but understand RA is opening up for F2F now. xx

[Kags1068 in reply to Hidden]

Excellent advice J xx😊

[Aporiac in reply to Hidden]

Thank you very much for the various tips. I must say I have to agree with your statement that this site is amazingly supportive and knowledgable. I've had so many responses to my questions, and all of them thoughtful and helpful.

I'll certainly start keeping a diary, including photos, as you suggest. As I've noted elsewhere in response to another comment, this condition is mindbogglingly random. It seems to be controlled by a capricious demon with a sense of humour, who is constantly planning new surprises in terms of the extent and severity of the next attack! It's also easy to get lost in the present because that's typically shaking you by the collar and demanding your attention (for good or bad!), but that means that stuff that happened just a couple of days ago can sometimes feel like the distant past.

Finding strategies for dealing with the pain is tricky. Mood has a big impact - sometimes I feel stronger and braver than at other times. That is one advantage of things moving around so much - the part of your body that hurts like heck today will hurt less in due course as every part of your skeleton gets its fair share, lol.

[Piwacket]

Hi welcome to our group which is an amazing source of knowledge and support

I was diagnosed in February 2020

All of our experiences will all be very different - i became quite poorly very quickly but had excellent support from my Rheumaltolgy team.

When starting my medication I had fortnightly blood tests and the team were constantly checking up on me as results were never good.

I started on methotrexate and different combinations of medication coping with reactions to some of these meds it seemed I was not improving and was constantly at hospital or doctors and this was when I was sheilding at the height of the first wave of pandemic so I cannot thank NHS enough for protecting and looking after me.

I never had to chase NHS up as blood test monitoring told the story they needed to know.

I continued on methotrexate but 7 months from diagnosis I was started on a biologic and I have never looked back and although I am not quite the same as I was before I am pretty close

Emotionally it has been a roller coaster ride but life has settled down

My rheumatology team are very accessible from my consultant‘a secretary to registrars and nurses someone always responds to me so I never feel hesitant to contact them via phone or email and hope you have the same experience. I live in Cheshire

[Aporiac in reply to Piwacket]

Thank you for recounting your experiences.

It's very valuable to know about differences and similarities (and the bits that are likely to be general versus stuff that is specific to, say, the way the condition expresses itself in one person).

I think the NHS is a bit ragged at the moment for understandable reasons, and maybe that specific factor has been in play for me. Hopefully, 'normality' is gradually being restored.

It's great that you haven't had to do any chasing, although there are enough comments here advising monitoring one's own condition and treatment to suggest that your experience of having someone properly managing your case isn't universal. I've had my first one-to-one contact with my Trust's Rheumatology team today (albeit over the phone), which seemed to go well. They have a few follow-up actions so I'll get an idea of how switched on they are quite soon. Fingers crossed (not due to RA, hopefully!)

[Piwacket in reply to Aporiac]

So pleased for you that your first appointment seemed to go well - I do agree with lots of the comments about being proactive which I am now, if necessary, by email and phone

We definitely should not be in any more pain or discomfort than necessary

We all have stories to tell and I certainly take comfort on the forum from shared experiences

Good luck

[Brushwork]

Welcome to the forum.Being well informed and proactive certainly helps.

From my experience of moving to 3 different health boards while having RA is that they vary enormously. This is further proven by various accounts on here.

I am currently treated under Rheumatology at Aberdeen RI and they are extremely good. When I first moved here, assessments were all redone, even though I had previously been diagnosed and was currently on meds. I was offered access to physio, psychological counselling, and anything else necessary. There are a team of specialist nurses, and I was given contact information for them and advised that if I had any problems I should make contact immediately.

The whole team are good, better than I had experienced elsewhere.

Consultations are generally pretty good, as mostly you are listened too and treatment plans are discussed.

I am pretty well informed and I do make contact with the Rheumy team whenever I feel it necessary. I am also quite assertive and will refuse treatments that I don't consider right for me.

I hope you are lucky and have a good team.

Good luck and go gently.

[MorganCat]

Hi , I live in south warwickshire . I’ve got OA and inflammatory arthritis , RA not showing in my bloods . Each visit I’ve had a plan of action and a follow up letter detailing what was discussed . I had bloods done after first appointment think that’s was Jan , then i had X-rays of my joints and ultrasound of hand feet and knees . Follow up appointment to discuss outcome of tests , in March . Had a few appointments after then started dmard medication in May . The care I have had has been fantastic , by the time I get home I get a message from

The mycare app to tell me my next appointment. Do you have the rheumatologist care line number ? I would give them a call and ask to speak to the nurse about the pain.

[Fra22-57]

You need treatment and quick to dampen down this disease.It should of been discussed with you about treatment n medication on your appointment or next one.If not enquire about it.It is not curable but is liveable.It is not a quick fix with treatments and steroids could be introduced depending how bad you are or get.I am still on them 9 years later plus a combination of meds and biologic.Still not pain free but not crying 😭 in pain like I was.Thing is once you get one auto immune disease you could get more.Wish I was the same but rely on husband to help me especially walking as have tripping and leg giving way etc due to one disease..I am 63 and would love to still be able to work n not have to rely on others.Wish you well

[GinnyE]

My GP referred me to Rheumatologist due to sudden onset of pain (mirrored) and preliminary blood tests. When I saw the Rheumatologist a short time later (they rang me to say more blood tests confirmed Strongly Positive result and wanted to see me quickly as sooner treated better chance of "treating to target of no pain or joint damage" he organised chest x Ray, breathing test and xrays of hands and feet to see a) damage of joints (none noted) and b) assess if lungs ok before putting me on 10 mg of methotexate. This was in January 2019. Since then had a few break out flares when I was given steroid for pain and swelling, and the methotrexate injections increased steadily to 20 mg with folic acid to help with any nausea. So, you should be on a medication and should have had the preliminary tests, in my opinion. I don't like to tempt fate but I haven't had a flare since Christmas. Hope this info helps.

[Helen-NRAS Moderator]

Good morning. If you would like support, information or just someone to talk to, our NRAS helpline is open every weekday from 9.30am to 4.30pm nras.org.uk/helpline/ 0800 298 7650. Or have a look at our website nras.org.uk. Best wishes.

[Boxerlady]

I was also diagnosed at my first rheumatology appointment in Spring 2019 (at 59.)The consultant told me that I'd be sent for some X-rays and then would start treatment at my next appointment which would be with one of the rheumatology nurses. I left with both appointments and within a few weeks was on DMARDS.I was told that my next appointment with the consultant would be six months later and was given the rheumatology nurse helpline number.

My clinic has been great; appointments have been irregular due to Covid but the nurse helpline is great (always get a call back the same day) and I've had appointments as necessary and had my medication changed.

Hopefully you'll get started on medication soon; it can take time to find the right one(s) for you and they do take time to work but you should be offered pain relief meantime. I've got to the stage where I don't need pain relief and apart from some morning stiffness and the odd twinge, my joints are good. My consultant treated my RA aggressively (which I was happy with) and so far, so good! 😊

[CagneysMum]

Hi. A previously fit (slightly overweight) but healthy 57 year old woman. I was diagnosed with RA 3 years ago following a misdiagnosed frozen shoulder left side and then torn bicep in right side. Looked at other causes when hands subsequently also swelled up.

All my joints (including jaw!) decided to join in over the following 3 months and I was in a bad way for 6 months (wheelchair at lowest point) despite painkillers and steroid intervention. It took me 18 months altogether of trying different drug combinations before I was able to start on a biologic which has been a complete game changer for me. Now on hydroxychloroquine, methotrexate, Amgevita and back to normal (joints a bit stiff and generally get tired more easily but very little pain and no joint distortion that I know of so far 🤞).

I live in the West Midlands area, my hospital team aren’t the most proactive (which I put down to Covid staffing issues?) but they do respond well when prompted and do seem to listen. I like (feel an affinity with) some members of the team better than others for different reasons. I don’t get to see my consultant as a matter of course now that my RA is controlled, but I have been able to insist on access when I needed it. Made sure I got hold of direct numbers and emails where possible for any ‘urgent’ situations. I attend hospital for regular two monthly blood tests and they contact me if any issues or concerns. I always ask for copies of my blood test results to be able to monitor my own progress …. and to remind myself of just how much things have improved.

They last routinely contacted me in February to see how biologics were doing and discussed (at my request) a review to be scheduled for July to reduce methotrexate or to stop hydroxychloroquine if progress was still good. Appointment has not materialised so far but I’m happy to coast for now while things are good and will prompt after winter/Flu season if I don’t hear anything.

Definitely be proactive and involved in your treatment journey but know when to push ….or not. Listen to their advice but read as much as you can and ask for input on this site. There’s unlikely to be an overnight solution because whilst a range of brilliant drugs are available, they work different for individuals so there is an element of trial and error. Not everyone needs biologics to achieve a good result but I wished I’d pushed sooner for this now and not been quite so patient and polite. The guidelines for suitability to access biologics has changed in recent months for the better, so your access to these is much better should you require them.

Best of luck on your journey 👍

[Green230461]

Welcome to the club that no one wants to join but when you do you find a great group of warriors!My experience started with a pain in the shoulder that travelled around my joints like a wildfire. Sometimes it burns itself out!

Keep a record of how you feel -which parts swell and which parts get better. Also emotional feelings some days you may feel down this is fatigue part of the disease. Not to be ignored can indicate a start of a flare- everything aches.

On the plus side drugs have improved tremendously over the last two decades so life can be good with a drug cocktail.

Watch out for increased cholesterol caused by certain drugs.

Keep well and best of luck🌺

[oldtimer]

Best place for accurate information is the NRAS website. There is a separate section for the newly diagnosed. I've had it over 30 years and treatment has changed out of all recognition for the better. But you're right, you will need to be pro-active or they will assume you are coping well.

[KeenGreen]

Hi, I’m a 61 year old male and also got diagnosed zero-negative RA in September 2020. I was given a steroid injection at my first referral appointment to reduce the pain and stiffness (multiple joints) which helped for a while and put on methotrexate 15mg initially. I did improve quite a lot after three months, but still some symptoms so my dose was increased to 20mg. I then got much better over the next three months and feel I’m now in remission (on MTX). I get a few pains, partly due to old injuries rather than RA, but haven’t had a flare since. Good luck.

[Kerensa21]

Nras website & helpline are great as others have said; they also do a number of free publications, including one for the newly diagnosednras.org.uk/product/new2ra/

and one on medications 👍 make sure rheumatology copy you in on all communications and keep you informed too. Best wishes

[helixhelix]

You’re doing it all right and going down the right path so far. Well done as it can be shock to be diagnosed and make you want to crawl into a box (preferably one filled with prednisone!).

I’m 11 years in, and doing just great. Not dancing, but then I didn’t at 20. But living a 95% normal life, pain free and as long as I don’t do daft things I am stable in remission.

The lessons I’ve learnt

- this is a self service disease. Don’t ask:don’t get.

- if you don’t already, learn how to talk to doctors. They need specific symptoms to respond to (not “I feel bad”) and everything a condensed and crisp as possible. Writing daily/weekly notes and lists are good.

- learn about your blood tests and keep on top of them. I personally avoided all alcohol for first 3 months on MTX until my blood tests showed my liver was coping just fine.

- look after yourself. Don’t smoke (if you do then stop now!). Try to keep moving and find a daily exercise you can do and enjoy doing. Sleep properly. And eat well - lots of debate about diet but the essence is that a good diet can do nothing but help (lots plants and fish, not too much fatty and sugary food).

- drink lots of water.

And try to be optimistic, for many of us this is a manageable disease. So read nothing more than 10 years old as it will be wrong!

[stbernhard]

Hello Aporiac, you already have a lot of very good answers to you post from the lovely people on this forum. Particularly those pointing out NRAS and the helpline. Please take time to get in touch with NRAS and study the material on their website. It was invaluable to me. I was diagnosed at sixty in 2009 and medication for RA has become far better and a greater variety is available, so you stand a very good chance to get he medication mix that works for you. As for a timetable, that is very difficult because every person is different and will react differently to treatment. In my experience what you do to help yourself and manage your life with RA is as important as the medication . Living with RA is never the end, it's just a different life. I lead a full happy and active life with RA and I wish the same for you.

[Carolsos]

Welcome to this lovely group, full of information and very helpful. I was diagnosed at 53, but had it a good ten years before I was diagnosed! My Ra team are brilliant! I live in North Lincolnshire, mtx changed my life I was able to go nearly back to my old life. I have just come off Mtx as it's stopped working and have just started biological Humeria, but am on leflumomide and hdy too. Take care