How was your journey to diagnosis?: The last (almost... - NRAS

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How was your journey to diagnosis?

Clokii profile image

The last (almost) three months has just been super frustrating for me and I don’t know where I stand! I’d love to hear other people’s stories...

How has your rheumatology journey been?

Was your path to treatment straightforward and did you feel better soon after?

When did you really feel like you were getting somewhere and getting on track with symptoms and managing your condition?

30 Replies

Hi! No not straightforward at all! Initially told negative, then 5 years later positive. Got a drug that ‘worked’ in the end. Took 5 years after diagnosis to get to that. It’s a complicated game. My only advice is never give up, and you are never ‘bothering’ your consultant, nurse etc.

Clokii profile image
Clokii in reply to Madmusiclover

I’m glad to hear you found the right treatment, sounds like you had a horrifically long and complicated journey to treatment and diagnosis!

Unfortunately everything from diagnosis to getting the right drugs is not an exact science with RA.......but don’t get disheartened ....your rheumatologist will prescribe the right treatment as soon as possible. Try to keep positive...don’t think because the first drug you are prescribed doesn’t immediately put you right back to where you were before you were diagnosed ....that you have some how failed.....

So hang on in there & be positive..... never think because you read somebody here has a bad time on a certain drug that it will be the same for you because that definitely isn’t the case.

Was first diagnosed with fibromyalgia then months later had to be hospitalised for a week on drugs.Given news I had both that and rheumatoid arthritis.Had to struggle further for a while as was sent home by mistake without medication. Methotrexate was great but damaged my liver so roller coaster of different meds.Then 3 biologic didn’t work. For another of my immune conditions I asked to be referred to hospital in London.They were amazing and got my local stubborn rheumatologist to agree to a 4th biologic of which has worked for me these last few years.I am struggling a bit at moment and same rheumatologist ignores so for me the pain never ends.Hope your journey will be smoother

Clokii profile image
Clokii in reply to Fra22-57

I’m glad you were eventually able to find meds that worked for you and I’m sorry to hear about your stubborn rheumatologist! I hope you manage to get through to them and get what you need to feel better.... I really think that they don’t understand the impact and just see you as a set of symptoms sometimes!

Fra22-57 profile image
Fra22-57 in reply to Clokii

Thankyou.I saw him last week for my yearly visit.wrote down lots of new symptoms. He just said it was all to do with my auto immune diseases.got letter in post that was also sent to gp.there was no mention of what I said but there was a symptom I hadn't..lol

I was originally told I didn’t have it then 5 years later was diagnosed. ( 4 years ago) Started MTX which worked well leading a normal life , hydroxychloroquine added but I was allergic. MTX worked well for 12 months but slowly stopped working and 18 months after diagnosis all hell broke loose. Mobility and fatigue crippling . I lost my dream job and only worked 2 1/2 hours a day but that was a struggle . Sulfasalazine added but again allergic. Started a biologic in January 20 initially started good but after 8 weeks having problems...COVID put paid to any change in treatment I could not walk or use my hands fatigue meant life passed me by. My meds were causing more problems than helping. Started baricitnib in December and now starting to get somewhere. Mobility is good and fatigue being managed. I do have nerve and ligaments damage with some joints permanently disfigured. I’m only 40% of the person I was . I was very fit and my life was very very busy . I’m hoping to slowly rebuild my fitness but need to sort out feet and ankle damage first . I’m getting there but I realise I will never be the person I was.

Clokii profile image
Clokii in reply to J1707

Oh god, that sounds horrendous! I’m so sorry you had to go through that but I’m glad the new drug is helping and I really hope things continue to improve for you!

Fra22-57 profile image
Fra22-57 in reply to J1707

I gave heard a lot of good things about baricitnib so hope life does improve immensely for you on it. I admire your spirit so hope your fitness builds up for you

Madmusiclover profile image
Madmusiclover in reply to J1707

That sounds awful. The acceptance of loss of who we are/were is the hardest thing. I hope they find you another drug. ❤️

It took about three years until I had complete control over my life again, but only about 18 months to get to 90%. I was blessed with a brilliant consultant who guided me into self management right from the start.

Living with RA can be frustrating, but it doesn't have to be. You can read about many people's journeys on the NRAS website. Some are very inspiring. There is an app developed with the NHS and NRAS by Ampersand Health which I would highly recommend to you. It's very useful tool. Good luck and stay in touch.

I call it long RA

In a word, long! First diagnosed with polymyalgia and told the pain in my knee was age related wear and tear. Have since had that knee replaced due to significant rheumatoid damage.

Took 3yrs to find suitable dmard. Didn’t get on with my consultant, she had a very perfunctory manner. Requested a change and it’s like night and day.

It’s such a life changing disease and my initial rheumatologist treated it like an in growing toenail! Gave me drugs, handed me a leaflet and sent me on my (miserable) way!

Brychni profile image
Brychni in reply to Sjhoney

Same here! She turned in her swivel chair and said, as though reading me my rights:'I am diagnosing you with Undifferentiated Inflammatory Arthritis and I want you to take hydroxychloroquine - are you happy to take hydroxychloroquine?'

Me: errm, OK then.

Consultant: here's a leaflet

Me: what about some more blood tests?

Consultant: there's no point in blood tests; we've seen the inflammation on the scan.

Me: Ok then

Sjhoney profile image
Sjhoney in reply to Brychni

That’s shocking! My diagnosis coincided with the onset of menopause featuring dreadful anxiety.

I’m not sure if the medication exacerbated it but I was a nervous wreck.

She told me if I didn’t take my meds there was nothing she could do for me. I honestly didn’t know what to do, felt totally lost. It all came to a head when my CRP rocketed even tho I was taking meds, GP said I’d need an emergency appt with rheumatologist but I told her I wanted a different one. Just wish I’d done it sooner. It’s so important to have a good relationship with your consultant.

Undifferentiated? What the heck does she mean?

Well it's a kind of 'guess who' of inflammatory arthritis! It could be RA, PsA or AS only time can tell and if you whack it with DMARDS the hope is that you'll never find out.

Clokii profile image
Clokii in reply to Brychni

Wow, these experiences are horrendous!! I’ve also been diagnosed with undifferentiated inflammatory arthritis but haven’t got a treatment plan yet.... I’ve finally got through an appointment for ultrasounds on my hands and a face to face with the consultant so I’m hoping that I’ll finally get somewhere over the next couple of weeks!

Brychni profile image
Brychni in reply to Clokii

If you head over to NRAS community you will see my history so far. Honestly, I'm at the end of my tether with it all. My diagnosis was such a surprise - I also had the scan on hands and wrists - but the care so far has been pathetic. My next rheumatology appointment is with a private consultant which a relative is funding but I have had no proper follow up since diagnosis over a year ago and apparently the scan to monitor what's going on is 'not available at the moment because of covid'. As I am seronegative (which means it could be PsA or AS) there is no other way of knowing if the methotrexate and hydroxychloroquine has had any effect. So I stopped taking it and the only response was 'OK, quite right not to take it if it's not doing anything.'

All I want is to know how my 'treatment' is going and if it's working and I'm not prepared to carry on with fortnightly blood tests for pretty nasty drugs without any kind of monitoring. Especially as I have developed more symptoms since being on them. In the month since I stopped taking them some things are creeping back so maybe it wasn't the right thing to do but consultant was so dismissive, she even said it sounded like a lot of my issues were 'mechanical' and mtx couldn't help with that. This is in total contrast to what she and the rheum nurse told me when I was doubtful about my diagnosis and then taking the DMARDS which was 'you've got to take them or you'll become disabled'.

I have been on the verge of making a complaint but what with the migraines etc I just can't be bothered. What I want is to know if my illness is being successfully treated.

Good luck - where are you based?

Brychni profile image
Brychni in reply to Clokii

Just realised that I answered the wrong post! This was for someone asking about hrt...

In a word, hell. Symptoms began at age 16 in my lower back. Was fobbed off for years about that as a separate issue. In my mid 20s, I started to suffer from bouts of crippling fatigue and problems with a hip, in addition to randomly swelling and painful joints that would last anywhere from 6 weeks to 9 months. I was in agony for 9 months with a toe, to the point I had to go up and down stairs on my bum, but even though I was referred to rheumatology, they said they didn’t have a clue what was wrong with me. After rheum and the toe had finally settled, I ended up with podiatry, who quickly diagnosed me with hallux limitus, which is a type of arthritic condition found in the big toe, but it’s actually that the joint was wrecked by the 9 month flare of RD I’d had.

Over the course of 10 years, I was back and forth repeatedly for knees, hips, feet, along with my back regularly flaring. It was only when I moved in 2019, by which time my hands were starting to niggle, that I finally managed to get a diagnosis of inflammatory arthritis. We’re 99.9% certain it’s psoriatic in nature. The big ‘problem’ in my case is that I’m totally seronegative: even with a knee the size of a football, all of my bloods are within normal, including crp and esr. This is very common in PsA, but was the main reason everyone - including a rheumatologist that should know better! - kept telling me it couldn’t possibly be arthritis, and the fatigue was just stress as I’m single dad to a kid with very complex needs. Even when I went to my new GP with the worsening hand niggles, they said the same. They did send me for x-rays on several of the involved joints, but x-rays are generally useless with RD, and other than a bit of OA in a knee and one hip showed nothing, so they also concluded it was nothing in particular. It was when the niggle in one little finger turned into an excruciating bout of swelling similar to my historical toe that they sent me for an ultrasound. The sonographer pretty much told me then and there that I had inflammatory arthritis. It took 20 years of symptoms, and 10 years of banging my head against a brick wall, but at 36, I finally got a diagnosis, along with confirmation via MRI that my sacroiliac joints and lower back are involved. My ‘weak’ back is nothing of the sort, and had they taken it a bit more seriously, I do wonder whether that might have got me diagnosed sooner, and potentially prevented some of the joint damage I have as a result of not getting treatment and the disease left running rampant for years.

Flash forward 15 months, and things are better than they were, but I’m not yet under control. I had mtx initially, along with pred, but after 4 months still couldn’t get off the steroids. They added in Leflunomide, and that got me straight enough to get off the pred, but subsequent dose increases of mtx and lef didn’t make a huge difference. After months of saying I didn’t think it did anything at all (and a very disheartening consultation with a rheum before Christmas), we binned the mtx about a month ago and I’m currently no worse for it, although I’ve been struggling with worsened symptoms since January anyway. Now waiting to start sulfasalazine alongside the lef, but if this doesn’t work, then the next conversation will be biologics, and I’m temporarily hampered by a dodgy blood result last week. In spite of all this, though, I’m optimistic that I’ll end up with a regime that works, it’s just being realistic that it may take some time.

First 6 months was hell. I use to struggle to get out of bed in the morning and use to cry in the shower all the time. Thought I wouldn’t live a normal life etc been on MTX over a year now and don’t think about RA most of the time. I’m probably one of the lucky ones and hopefully it stays that way. It’s always good to hear a positive story when you’re in a bad place I have a baby and work 50/60 hours a week exercise regularly etc I would say currently RA has zero effect on my life.

I was lucky to have been referred to a Rheumatologist who really knew his stuff, so diagnosis was fine. Unfortunately, he was very old school because he would tell me what treatment I needed, without discussion and never listening. He was dismissive of my queries and questions, he was also sarcastic about my research especially when it came from the web. The result - a rebellious patient! When he retired I had 3 successive Rheumy's who were overstretched and consultations were perfunctory and best.I hit the jackpot when I moved to Scotland 4 years ago, my rheumy team (never had a team before) are amazing. My GP is brilliant, whenever I contact them they react quickly. To add to that my local pharmacist is so helpful.

Of course, my RA was quite mild for much of that time, now it is quite severe so I really appreciate the great job being done and the support I get.

From first severe symptoms to diagnosis 2 months. My symptoms really started in Dec 5 years ago although I had had mild pain in my knees for some time before that. One of my knees was red, hot, swollen and painful so thought I’d knocked it. Then 48 hours later it was ok - and the other knee swelled up. Was suspicious that this was strange esp as one of my hands had also swollen. Trip to gp after Christmas who arranged for blood tests, x rays and a ‘semi- urgent’ rheumatology appointment - got one for March. Horrendous pain in all joints by mid Jan untouched by pain killers. Rheumatoid factor and other factor positive plus raised inflammation markers. A week of steroids after which pain back within 2 days. Back to gp who was at first reluctant to prescribe more steroids until I’d seen rheumatologist - but did. Repeat of ESR inflammation levels which had increased to 4 times the level 3 weeks before. Urgent rheum app at beg of Feb and diagnosis of sero-positive RD ( mainly by ‘history’ etc as steroids had dampened the pain) Put on mtx and hydroxychloroquine (this later changed to sulfasalazine because of eye problems). X rays showed osteo arthritis in knees. Continued on reducing dose of steroids until that Sept (2016) .Nowadays have v little day to day pain (long may that last!) unless I overdo it when I begin to stiffen up again.

My first cousin and a niece both also have RD.

Ongoing problems for ages, eventually referred to a rheumatologist who said go and enjoy your life! Got a second opinion from a hospital in a different county and got a diagnosis of probable RA. With endless problems which almost always disappeared the days before an appointment with Rheumatology it prob took 3 yrs to get a diagnosis. Now been thro hydroxy, Sulfasalazine, Mtx and now on LEF, one hip replacement and still daily swelling in various joints I am told that I am not bad enough for biologics. It is a battle, but trying to be optimistic because Jyseleca is coming soon and that is specifically for people like me - 6 yrs later and not much further forward really, I am so looking forward to this new drug.

After struggling for 20 years, finally went to GP and refused to be fobbed off. He diagnosed me with polymyalgia and gave me steroids. When I tried to reduce them, pain became unbearable. Saw different GP who referred me to rheumatology. Hospital would not accept referral, so another GP visit, who battled on my behalf to get referral accepted. By this time, had not been able to lie down for a year and could not walk more than a few yards. Waited 6 months to be seen and was told that I imagined it! Both angry and depressed, went to see rheumatologist privately, who said immediately that I needed biologics, so wrote to my GP requesting a referral on the NHS. GP did that and although I have to travel to another county, cannot fault the care I have had. Trouble is that the drugs are all trial and error so there is a lot of waiting involved. Still cannot walk far but can lie down and sleep well. Makes all the difference., so am grateful for that.

I think I am one of the very lucky one where my RA has been in remission after a year and a half treatment.

I am a sero negative. I had been a very healthy person and always lived a very healthy and active lifestyle. Suddenly my 2 knees started to be in pain. A week later I could not take it anymore and went to see a doctor.

My knees were swollen and very painful. The doctor suggested a blood test and the results were ok a day later. He said I should be ok after a week of the medicines.

A week later I went back to see him again as my fingers started to curl in, swollen and painful too. He immediately referred me to a rheumatologist.

Blood tests and X-Ray again before my rheumy started any treatment. 3 weeks later I almost couldn’t walk when I went for my 2 nd appointment.

My blood results again good and my x-Ray was normal. I am glad that she is a very experienced rheumatologist and she told me that though my blood test was ok but I had all the RA symptoms so she would give me immediate treatment.

I used to wake up around 1 to 2 am because of the pain. It used to take about 5 to 6 hours before I could get out of bed. Before Mtx kicked, I was in horrible pain and I was so depressed intended to end my painful life.

Mtx gave me a lot of side effects too. But my rheumy said the benefits would outweigh all these side effects and she insisted I continued with Mtx. I am glad I did.

Mtx kicked in about 6 months later and I could feel the immediately reduced in pain level. I knew I would be ok since.

A lot of low impact exercises I did. A lot of appointments with the occupational therapist and physiotherapist. My body swell liked a balloon in the first 2 months. Then I had muscles wastage after 4 months. I was like a walking skeleton then.

Most of the side effects were gone after about a year of Mtx. When my liver was bad, my rheumy decided to reduce the dosage of Mtx. My condition was already quite stable then hence no issue to reduce the dosage. Again a month before that, leflunomide was added to speed up my recovery.

I have been in remission since Nov 2015. I am glad I have my life back. I still continue to exercise to build my strength and to ensure the flexibility of my joints.

The journey has been very painful, I am sure all of us know this. But once we get the right medicines, we can have our life back. Don’t give up!

I think I suffered mild symptoms for a long time, mainly in my feet. They would hurt off & on , especially in mornings then felt better as the day progressed. My GP diagnosed me with Plantar Fasciitis back then. In May-June 2018 it started getting worse, by Nov I had trouble getting up from bed, putting on clothes, walking , climbing up & down stairs and generally every little thing in my life. Fortunately my GP did a blood test in Aug and referred me to Rheumatologist right away seeing elevated RF & inflammatory markers. By the time I saw the specialist though I had terrible time, left knee was swollen and I had to go to Orthopedic specialist to drain the fluid in the knee joint. Rheumatologist then did more tests and confirmed sero positive RA and started me on Prednisolone right away then Mtx 15 mg Inj in Jan 2019. I started feeling better as soon as Pred was given & was in remission by March. So all in all I would say it took me 6-8 months from starting symptoms to diagnosis to feeling better.

Hope you get yours sorted out soon. Once you start treatment that works you will be back to your normal self. Good luck!

I was fortunate, or unfortunate, in that my presentation was classical and severe. I was referred immediately to the Rheumatic Hospital at Bath and a diagnosis made. Treatment was started but in those days, not very effectively.

But the difficulties came later when, as I moved around the country, the medical people questioned the original diagnosis as I didn't have erosions and was sero-negative.

If there's pain, and no explanation, it might well be RA/RD, but they won't think to look for it. (That is why machine -based diagnosis might be a good idea). Darn, I'm feeling cynical today.

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