Anyone told they had RA/PsA and then told it was something else?
Has anyone here been misdiagnosed?: Anyone told they... - NRAS
Has anyone here been misdiagnosed?
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Brychni
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Having doubts about your diagnosis ?
yes...although I suspect this is not unusual! In denial - well not so much denial but putting it simply I just don't feel bad enough to warrant starting methotrexate.
I'm still feeling quite energetic after the steroid injection. The pains I had aren't as bad. I've been reading more thoroughly about osteoarthritis and overall my symptoms are very similar and the outcomes for OA are much more positive especially if you stay fit and do the physio.
Good that the steroid injection are working now, i might be totally wrong but the fact the injection is working points to the cause of the pain is inflammation and osteoarthritis isn't so much inflammation but wear and tear isn't it ? Not that I know that much about it !
You could totally be in denial, its such a hard thing to get your head around , i guess we must go through stages and hopefully end up accepting it. I'm totally messed up about it and ping pong between being laid back and crying because I don't want it! I'm thinking I need some therapy or something , I spend an unhealthy amount of time on here just so i can speak to people who understand!
just put some grisly pictures of my hands up!!
I am more of a chunky stature but my fingers are similar to yours as in swelling. Also get it on and in between knuckles. I feel like Kenny Everett when he put those massive hands on.
The white fingers have you been told what this is, Raynaulds ?
It's so easy to drive yourself into an anxious mess with Google, feel a new pain or prescribed a new drug amd its so tempting to Google it but what does it really bring? I'm trying to keep off it (please remind me of this ha ha ).
Hi Liz - yes I have Raynaud's and rheumatologist offered me yet more drugs but the weather was getting warmer and I declined. Over the years GPs have always gone about the Raynauds and suggested scleroderma (even though it's not even called that any more) - anyway just found this on Versus - the last paragraph:
How is systemic sclerosis likely to affect me?
Systemic sclerosis affects everyone differently, so it’s hard to say how it might affect you.
This is a long-term condition, however the serious problems it can cause are rare.
About one in five people with systemic sclerosis will also have symptoms of another condition, such as lupus, Sjogren’s syndrome or inflammatory arthritis. These conditions will also need treatment.
Your hands look a lot better than mine Brychni and Im only a year into diagnosis. I’ve stopped taking my meds because nothing was working and like you I don’t feel bad enough to warrant taking these types of drugs . But reading everyone’s experiences on here, I know I should be pushing for help. I really think I need therapy to get my head around this to be honest. I would warn you that you probably feel great because of the steroid injections and they will wear off. I’m sorry if I’m not being helpful , I just want to let you know you’re not alone feeling this way.
Hi LinaM - what is your 'diagnosis story'? x
I thought I’d replied to this but if disappeared lol! I am seronegative so it was a good four years of fingers growing stiffer and out of shape before I was referred. I’ve been diagnosed with ‘ inflammatory arthritis” and methotrexate injections made no difference after 10 months . The steroid shot I got was amazing and made me think I was cured by the clean eating diet I’d started 😂How naive I was! I too drive myself nuts on google so now stay off it except to buy shoes and handbags hehe.
🤣that's brilliant advice!! I love it. Need more shoes, especially comfy ones! Really into Adidas Gazelles at the moment and I can get my orthotics into them...
So where are you now with meds/pain?
My fingers are all painful and like you , the pain jumps from finger to finger randomly . I can handle the pain but the worrying thing is they are bending to the side and there’s obviously something bad happening. I told the rheumatologist I’d stopped mtx because of side effects and the fact I wasn’t getting blood tests and he just sent me an appointment for next August !!!!
If you have been diagnosed with R.A. you would be most unwise not to listen to your Rheumatologist.
Dr Google & anything you have researched may not be the best place to find out what- if anything - you need to be treated for.
Osteo Arthritis is not an auto immune disease....if you don’t trust your Consultant to have correctly diagnosed you....maybe you should ask for a second opinion?
Believe me Rheumatologists don’t go looking for RA patients,... & they don’t prescribe Methotrexate on a whim....but to help you stay feeling as well as you say you now feel.
Steroids...like Prednisolone & Depomedrone can make you feel on top of the world...but it’s a fool’s paradise - because at the same time.....without DMards(Mtx) your joints & possibly organs can be developing damage that will only become. apparent way down the line.....when you may not feel as energetic as you do now.
Do make sure of your diagnosis before you refuse a drug that could save you a lot of pain & anxiety in the future.
Nobody on this site wants R.A.....but we have it, & we are jolly glad to be getting the drugs that eventually help us to live reasonably comfortable lives.
I know Aged Crone and I understand that prevention is what it's all about. However, the rheumatologist did send me off with 'probably OA' twice and then sent for an MRI on my neck because at the time it was nearly always painful and stiff and then for reasons which still perplex me, an ultrasound on my hands, fingers and a little way onto my wrists. It was a different kind of ultrasound to a baby scan and was carried out by a specialist who only spoke twice: first to ask how my pain was today and I said something vague because I had never had pain in my hands at that stage and I had thought the ultrasound was also for my neck! The second thing she said as she was wiping the gel off was that ' it all looks fine'.
I went home determined to get some physiotherapy for my neck and sacroiliac joint pain, which I got, although it was all a bit vague and not that helpful and so I put all my niggles down to age (I 'm 49 , 42 ish when I first started to go to GP about it) and possibly perimenopause etc, perhaps a bit of joint hypermobility like my daughter. I was determined to exercise my way to health!
Then almost 2 months later I got the later telling me there was inflammation in my wrists and I was called back to rheumatology, totally bemused. All along my bloods had been negative - tested twice - except for antiphospholipid antibodies, also positive twice although no one has mentioned following that up. It did seem to be an issue though because she brought it up in all the consultations. Apparently it's a stroke risk and causes ***drumroll*** migraines.
I just wrote a long reply & it disappeared.
Basically it said..review all the replies you have received here....& stop consulting Dr Google!
Why don’t you make a list of what you don’t understand.. ...like who told you about strokes & migraines & who prescribed physio on your neck with no scan/X-ray?
Then telephone your rheumy nurse...she will have your clinical notes & will go through everything with you. She will then be able to speak to your Rheumatologist & ask why you have been Prescribed Methotrexate...but if as you say you had 2 RA sero+ test results....that does sound as if you are being treated for RA.
Right now it seems you are getting nowhere fast...& if you do have RA....the sooner you start treatment the better.
Hi Aged - I once mentioned red spots on my legs to rheum. nurse and asked if it could be vasculitis and she told me to stop 'overthinking'! 😆 Since last night I've done more reading (good quality!) and have learned that treatment for RD is similar to treamtents for sclero/raynaud's associated conditions and thinking back to the questions that the consultant asked me were veering in the direction of Raynaud's and sclero. First line treatments are the same, as others here have also pointed out.
at the bottom of my questioning is that I am terrified of mtx and although I haven't decided not to take it, I am worried that it is going to wipe me out when in fact I don't feel consistently bad. x
I’m an old lady...I took Mtx for 7 years......& had some of the best years of my rotten R.A. journey.At the same time I was diagnosed with cancer....so double whammy.
I wasn’t thrilled when my Rheumatologist suggested it...but he explained his reasoning, & as I trust him....I took it & it was successful.
Of course that doesn’t mean it will suit you...but until you have doctors you trust....who you feel are doing their best for you...I’m afraid all the “Good quality” reading in the world will not help you.....because research papers tell the broad spectrum.....& you need an individual diagnosis not muddied by if & buts.
So please .....either listen to your present clinicians....or ask your GP to refer you to a different doctor/hospital...don’t you think you are wasting valuable time without any appropriate treatment?
Hi AC - you've had a horrendous time. Is the cancer related to your RA? x
No of course not.....It was just bad luck.....but I saw the right doctors & my rheumatologist & my oncologist consulted each other & I am now as good as anyone on a 20+ years RA journey can be...& it’s pretty darned good.
A positive mental attitude has great benefits...even if you fall flat a few times before you hit success !
Please listen to your doctors....stop trying to second guess your condition & get some treatment started.Your doctors don’t have unlimited patience or time....if you don’t want to take their advice....they really can’t do anything to help you now can they?
We are all nervous when we start taking a new drug....but if we don’t try what our doctors prescribe....we will never know if we missed the best drug ever!
I know only too well some drugs can be worse than the disease.....we have all spent the night with our heads down the loo....or not got dressed for days on end.... because it was too painful to move...but then we found the right meds & forgot all the nasties & got on with our lives.
So on Monday make that call to your rheumy nurse, get her onside,& get things moving.
Good Luck! 😜🤕🤒
I only asked because of the increased risk of lymphoma - another member posted here recently that she had been diagnosed with both.x
You've hit the nail on the head about drug side effects being worse than disease and th's what I am worried about. We already have such a difficult existence: living in the middle of nowhere, children need to be driven around all over the place, only one (crap) car and no relatives to help. And of course my already pointless income will be gone next month (covid redundancies). And on top of all that I am now an added burden on the family, specifically my husband on whose shoulders all this rests, with hospital appointments, blood tests etc. the prospect of hideous side effects fills me with horror.
The Raynauds is going to be awful this year. It's been getting steadily worse but last winter, even coming out of a hot shower would set it off. Opening the car door, touching the steering wheel.
Brychni.....That was one person in thousands...not you!
All I can say is count your blessings & stop making life difficult for yourself.It’s time to bite the bullet, accept you need medical help, set about listening to your doctors & stop reading about every possible medical condition you are imagining you might have.....as if boring old RA isn’t enough.
Side effects of drugs stop when you stop taking them....but if you don’t try them you will never know if they could have helped you,
You are fortunate to have healthy children & a supportive husband. ....a lot of young people don’t even have a car...crappy or otherwise...so try to start looking at some of the really good stuff in your life.....your family will give you all the support they can...but you are the only one who can sort your health
I don’t know how old your children are...but give them age appropriate household tasks to do until you can can take over again. ...housework can wait..nobody ever wished they had done more cleaning.
Explain to your husband you must get medical help soon ...& once again ...listen to your doctors....they really don’t want to hear what you think you might have. They know you are scared & they will do their level best to help you...but theIr time is precious....& with a waiting room full of people who will listen to their advice & take the meds they prescribe... don’t you see if you keep fighting them...you will be the loser?
So think on & start to listen to the medics & help yourself to get on track to sorting out your health.
Sorry to be so blunt...but we have all been through the bad times...& 99% of us have moved to a better place by taking medical advice & drugs.
• in reply toBrychni
When I was suffering the worst of the RA, crippled and in terrible pain, it was my 76-year-old husband who had to wait on me hand and foot, virtually carry me up and down stairs, help me up from a chair or the toilet, help me wash and dress. Fortunately he is very healthy, but I felt I was a terrible burden and a worry to him. Once the MTX worked, I no longer needed all that care. You are sparing your husband one set of duties, but you could possibly be storing up even worse ones for him by turning down good, well-proven treatment. Please summon up your courage and take the MTX. x
• in reply toBrychni
Don't be terrified of MTX. Unless you try it, you can't know whether you would get on all right with it. I started taking it aged 71 and I'll admit I was worried about it at first. However, it gave me no problems at all. I was declared to be in remission after 5 months and now, after taking it for 17 months, I only take 10 mg weekly.
I can't say how long this happy state of affairs will last. I certainly can't promise you that your experience would be the same, but it's the gold-standard treatment. You really should give it a chance to help you. If it absolutely does not suit you, you can be moved on to other drugs. You have very little to lose by trying it. Instead of concentrating on the horror stories, read about the people who have taken it for decades and remained well. I wish you well. x
Brychni• in reply to
you're right...😌
Brychni I think you need to really think whether you want to try mtx and possibly get your life back or carry on as you are and not take it and risk things getting worse without meds. If side effects are unbearable you can stop taking it and they will disappear. But at least you will have tried and can move on. Thousands of people take this med but you won’t hear from most of them as they are off living life. I’ve been on it for 20+ years and am so glad I took it despite being fearful. Wishing you luck whatever you decide but I would decide soon because it seems like this decision is taking over your life 😔🤗
yes you're right KittyJ. In the past few weeks I have met 2 people taking it, one recently started who said it's the best thing she has ever done, she had been putting it off. The other has been taking it fr nearly 15 years and it's been fine.
The one side effect I fear most is headaches. I just can't take the risk of adding to my migraines. Sulfas. was awful, I ended up with a constant low level headache and I started to be really depressed for the first time in my life (I don't get low, I just shout!). My migraines are accompanied by vomiting - lots of it. It's changed a bit over the years and it doesn't always happen these days but nausea is ever present and I have read that is a common symptom. when I get an attack I can't take anything in, not even water and when I first started sulfas. I was also taking hydroxyc. and couldn't take the tablets because I had an 8 dayer. I was convinced the sulfas. was perpetuating it and when my husband called the emergency GP, he agreed. He did however say it takes ages to get into the system and ages to get out so not to worry about missing some tablets. I missed about 7, I couldn't even bear to look at them.
Pains from RD so far have been up and down and inconsistent and although they have at times been debilitating they don't really stop me from doing anything. Migraines however have generally ruined my life. 3, 5 sometimes 8 days of being in bed and throwing up and feeling suicidal is hideous for me and for everyone else in the family. God knows what my children really think. I think they are so used to it now.
I have tried various preventives over the years, some have worked well up to a point, some were awful and caused more headaches and some had side effects that made the Raynaud's worse. Some are not suitable as I have low blood pressure. For a few years now I have relied solely on acute attack medication and as I can't take anything orally it has to be injection of Sumatriptan and occasionally nasal spray. The injections have stopped working effectively and in desperation I have used 5 on consecutive days as they kept wearing off.
Attacks typically are about every 3 weeks sometimes more sometimes less. Yesterday I had a video consultation with the Migraine Centre. It was very thorough and the doctor will write her recommendations to my GP but one of them - a progesterone coil and hrt patch is not going to happen. I'm 49, have a totally folded womb and frankly the very thought of it makes me want to run a mile. The other suggestions were amitryptiline - had that years ago, worked well until one day it didn't and that was that and a different type of nasal spray.
I already feel very low on mental, physical and emotional energy and wonder what will be left of me soon. I can't plan anything because of the migraines, can't go out to work because of the migraines.
I've decide to give it a go with mtx (and stop moaning about it) but I don't know who is going to pick up the pieces if I'm wiped out by it all. We don't have any family, no one to help out. My husband is already under huge pressure at work and we have no time together because of it. And of course money is tight. Which never helps. This diagnosis is the icing on the cake.
I understand your dilemma a bit more now brychni, the stress of all this must be adding to your migraines. I’m sorry that you haven’t found a solution to them. None of us are in your shoes so our encouragement and support to try it must add to the stress. I do think you should stop researching now, you will only find more horror stories. What does your husband think about it? Have you sat down with him and your children to discuss taking mtx? ( I don’t know how old your children are)
Hi Kitty - my children are coming up to 12 and 16. They're both very good children, not particularly challenging and are understanding when I'm out of it with my head. However, they don't have grandparents, aunts or uncles or even cousins. Now that lockdown has lifted and they're back at school, football training etc I am really worried that if illness strikes I won't be able to take them anywhere. Everything they are committed to is about an hour away. we have friends and lift sharing but it is limited because of where we live. Of the social circle we are the furthest away. My daughter's drama group has had to find a new venue because of covid which is now an hour and half away. I actually don't really mind all the travelling because I often take the dog for a long walk or do an Aldi shop and frankly without these commitments I would have no reason to leave the house.
My husband is amazing but I can see him becoming overwhelmed.
• in reply toBrychni
I’d been told for 15 years I just had a bit of back ache. For the last 10, I was told there was nothing wrong with me at all, in spite of regularly horrendous lower back pain, multiple swollen, incredibly painful joints, and extreme fatigue that could last weeks or months at a time. A rheumatologist even sent me away saying he didn’t have a clue what was wrong with me, when what was wrong with me was actually his bread and butter. Sometimes the obvious and easiest answer is actually the right one: I had absolutely all the typical symptoms of inflammatory arthritis, the only thing I didn’t have was the positive bloodwork. The only thing that got me diagnosed after a literal decade of back and forth, despite being swollen to buggery and hurting like hell, was an ultrasound requested purely because it was my fingers that were swollen. The swelling there was obvious, but it also picked up inflammation in the wrist that I could neither see nor feel. Even though I was at the height of an excruciating flare in multiple joints, couldn’t even cut my own dinner or barely get out of a chair, my bloods were all entirely normal. My crp is consistently under 3, but that doesn’t change the fact that I quite blatantly have arthritis.
I’ve been on mtx since Jan, along with leflunomide since April, and since a dose increase in July, I would say I’m 80% sorted, but I get pains that come and go, sometimes even within the same day. I’ll have a run of a week of no real pain at all, then suddenly my bad hand will give me jip for anything between half an hour and 3 days before being fine again, or my big toe will, or my knee. Sometimes I’ll get half an hour’s jip at a time at random for 3 days depending on how my body decides it wants to entertain me. I still have fairly regular stiffness in my effected joints, including my hips on walking as you describe, and I still have quite a lot of sacroiliac pain from the arthritis an mri has confirmed I have there.
The point I’m trying to make is that being dismissed as OA originally doesn’t change the fact that you’ve since had evidence that opinion was wrong. The rheumatologist that initially came to the judgement has changed their opinion based on that clinical evidence. You’re taking treatment that should have improved things somewhat, which may be why you’re not currently in constant and/or intense pain. What you’ve described in your comments is very similar if not identical to my own experience of receiving treatment but not quite being under control yet, and denial ain’t just a river in Egypt. In any event, regardless of the underlying cause, the treatment for systemic scleroderma and inflammatory arthritis is the same, so whichever it is, the methotrexate will help.
Marionfromhappydays• in reply to
Sounds like you've been through the mill , glad you didn't give up and now you are 80% better.
Gives me hope for myself 😁
• in reply toMarionfromhappydays
There’s always hope of some description 😁 Prior to the last mtx increase I was convinced it wouldn’t do much of anything (because 15mg on its own had done nothing, nor the initial few weeks at 20mg, and I’d only really seen any improvement and been able to get off steroids when we added in the second DMARD at about 5 months post diagnosis), but it’s actually made a real difference. I would say I was probably 50% improved prior to going up to 25mg. Still hoping to get that final 20%, but I’m a lot happier now than I was even 2 months ago. You’ll get there, it just takes time 👍
AgedCrone• in reply to
You are a sensible chap Charlie G...it’s really good to hear that your cocktail of meds is at last proving that listening to your doc’s advice & taking the meds is proving these doctor folk actually do have the right answers sometimes!
I really hope you continue to progress ....it is great when you feel you are at last getting to a good place isn’t it?
Brychni• in reply to
I had that scan too and just like you had no inflammation in the wrists. I was completely stunned. And yes you're right - I was initially misdiagnosed with OA.
Thanks x
Couple of observations on my part I have both RA (diagnosis via blood test ) and OA (diagnosis via xray)
Steroid injections make you feel great but their efficacy wears off in the long run.
Did you have a blood test to diagnose RA? Maybe you're like me have both?
My diagnosis was in 2012 started treatment 2013, frankly I went through a grieving process of losing my very active full on life to reduced to being bed bound till treatment kicked in.
Then I started to look at what I can do not what I can't do and found there is loads.
Hope you find what is happening with you and find how to live quality of life despite.
Can I just remind you of a post you wrote way back when:
“have noticed that there is no rhyme or reason to when the pain comes and it's everywhere: fingers, backs of hands, feet, toes, heel, elbows (particularly bad at the moment) collar bones (also makes me feel fluey) knees and I often wake up with heat in some joints and quite severe pain especially in the knees. HOWEVER one thing which is consistent in causing me weeks of pain is inactivity”
I could have written that when first diagnosed, and a classic feature of RA is that it is worst at rest, whereas OA is worst on activity. Just saying. 😉
Hi helix - and I am always surprised by how it is worse each time. It seems to be consistent in that it is inconsistent . However it is still fleeting.. , I am starting to get the foot pain really bad - in both although much worse on the right when I am walking now. It burns and then feels better when I come home. Same with the knees and what I think is my hips (groin on both sides) I find exercising especially walking really makes me ache but I do it; I know it's good for me.
I've also not had the fluey/ neck thing lately which also makes me wonder if it is more likely to be OA related. It aches and is stiff but hasn't been a problem for a while now.
There does seem to be a bit of a pattern in that I have mild to moderate aches in various joints most of the time, but they move about. then every so often I get something really nasty which gets me ringing rhuematology and then it passes. Then I feel stupid and then wonder if something like mtx is a good idea...
When I was having the steroid injection the other day, the excrutiating pain in my right foot mysteriously calmed down in the waiting room. I felt like such an idiot in the treatment room next to a man hooked up to what I assumed was an infusion (biologics?) who looked like he was in a lot of pain. I fair skipped out of there afterwards feeling like I had wasted everyone's time.
I think its important to remember we still get other stuff your foot may be a Mortons Neuroma and you can have RA and OA at the same time. One thing that struck me is that the RA I have (I'm positive for RA, pANCA and have other AI conditions) also moves about and used to come and go. Much worse in the morning and was a pause after sitting then standing before moving. Probably never noticed by anyone else I was aware of it. So I'd be pain free and no swelling for months then in agony for weeks and increasingly the periods of inactivity decreased until I had the pain and swelling all the time. But with aggressive treatment I went into remission for years. Steroids do have a big impact and dramatically reduce swelling etc but they do not prevent damage and in a way mask the disease activity. They also carry a risk of Osteoporosis and so are not a good treatment for the long term. So I'd suggest that talking to your doctor is best, and if you've had a blood test was it positive or negative ? but even then its not a foolproof diagnosis. My best advice would be that MTX is used all over the world for RA and is mostly well tolerated. I take AZA and inject Benapli and am pleased to say no pain or swelling now and I've had RA for years.
Hi medway-lady - all my bloods have been negative except for antiphospholipid antibodies which have been there 2 or 3 times. It was the ultrasound scan that apparently diagnosies without question as the can literally see the inflammation of the synovial fluid (or something!).
What period of time did you notice the gaps of inactivity close up? I see it in the same way, there seems to be 'activity' all over the place with occasional sever pain and then it all goes away. when I have written about worsening symptoms it is becasue I have noticed the gaps closing but I still don't feel as bad as others describe and mtx terrifies me.
I sympathise and think because I'm positive it might be more clear cut so as no doubt it has to be treated. I understand that Palindromic might be the term used to describe it coming and going. I'm sure that others know more about the different types of RA and in my case even though controlled when on the very odd occasion it breaks through it can be my right hand or left or one shoulder but it goes back into remission quite quickly. In an emergency I've had steriod injections and have a pack of Predisolone 5mcg in the cupboard which has been unopened for 6 months or so now. I'd say try not to worry to much about MTX , as the risk of side effects can be temporary. If it doesn't agree with you stopping it resolves any issues. And you have to fail on 2 meds before anything else is considered and MTX is one of them. If it helps it did nothing for me except hair loss and was stopped after about 8 weeks or so. I then had Lefludamide and it was brilliant. Yes side effects for a few weeks, the pain got much worse then one day I woke up alive and full of energy, all pain and swelling just gone. I only wish I could have it again but its a no as its used in Renal medicine. So it can't be given now, as may be needed later on and I can't afford the risk of getting so used to it it and then it stops working for me. So now I take Azathyoprine it works very well no side effects and inject Benepali as the RA got worse and AZA alone didn't fully control it. I think that in my case the pain up never got to constant all over as I was treated aggressively. I definitely don't have OA or Osteoporosis as have had scans etc by RA consultant.
RA is treatable very well nowadays and nothing too be frightened of, These days things are difficult and I've read on here about MTX being used in Chemo, my friend is a Chemo Pharmacist in one of the biggest hospitals in London I years ago talked to him he said a lot thought it ought to be renamed as its like a lot of meds. it has multiple uses but in RA its in less than several thousand times the amount that was used in Chemo and that wasn't often these days. I was just unlucky as some are hypersensitive to it and I was but t showed quickly however I wasn't sick it was just like being on fire inside and the Folic Acid was increased same thing and an emergency appointment and it was stopped. I hope that helps and try not to overthink things it doesn't help to stress over something which may never happen anyway and if it does its chin up and go forward as something will work.
you sound very positive considering all the different drugs you have had to try.
Honestly it's not that bad, RA is so individual that there is no one size fits all medication. Unfortunately unlike most infections or conditions its mostly trial and error and in my case over years not months. I might have been lucky as went private and he took a lot of time to explain things. I still see him on the NHS too and probably because he has time it's never seemed scary and here we have great GP's who always help. I once asked would I end up in a wheelchair and he laughed and said no just be patient and we'll work together to sort you out. And this has been over years so I suspect I've never been panicked and do trust the doctors and specialist nurses. One of whom I'd now regard as a friend as over the years we've got to know each other well. So stay positive and enjoy the rest of the day. xx
That’s a great encouraging message Medway lady ... thank you for that! I need to see a consultant who is interested in listening to me and giving regular follow ups to find the right drugs. I’m afraid the nhs is leaving it up to me to call and moan about things and that’s just not going to happen. It’s all very well lecturing people that they will regret not following the consultants advice , but we’re all different and sone need more reassurance than we are getting. Thanks again and I hope I can find a team I trust too x
For 2 years I was told that the pain I had in my shoulder blades and jaw was part of my arthritis. When I was taken into hospital by ambulance from work it was at last correctly diagnosed as unstable angina. 2 stents fitted. I think some consultants are so wrapped up in their own field that they don't even consider anything else.
Hi benjijen - do you mind describing the pain in your jaw and shoulder blades? x
Pain usually began in my jaw and then travelled into my back, it was lasting a while but can't remember how long at a time. Rheumy sent me for various tests and decided it was part of my RA. However, when I was at work and had an 'attack' I couldn't speak so ambulance was called and I went in for angiogram etc and they found the blockages, then had stents but they could only do 2 of the 3 blockages as one was too small to stent.
Diagnosis is often complex.
When mine first started it was either RA or Lupus, and even it was decided it was RA I was regularly tested for Lupus too.
I've had so many misdiagnosis over the years, it's a joke. In relation to RA, I've had three different opinions. So, now I have (obviously) inflammatory osteoarthritis not RA. Anyone can see this in all my joints. As I have many inflammatory diseases, it just goes with the territory. It's hard not to burst out laughing with some of the medical diagnosis. With everything, I get three opinions. Years ago I was told by a urologist that the shadow across my kidney and stomach area was probably a fault in the Xrays. It turned out to be chronic endometreosis and ovarian cancer!!! It took several different specialists over 6 years to get the issue resolved with a gaenocologist who understood the pain I was going through (not to mention the fainting spells) to get stuck into me at my request and remove everything (that's when the cancer was discovered).
In any case, getting a batting average of at least 2 of the same diagnosis is a fair bet. It is amazing what the medicos don't know. Keep reading reputable medical journals and ask lots of questions. The docs may not like it but it's your body, your health.
Oh God, that sounds horrendous. Makes me think twice about mtx.
My GP missed all the classic signs of RA, messed about for months. I was initially told I wasn't as unwell as I thought I was by the first rheumatologist I seen. I was told by a private consultant that my foot issues are due my bunion, I have no pain or mobility problems with the bunion, we get along just fine.
A private physio I saw, suggested I might have RA and wrote to my GP, who then moved things along. Many nursing and medical friends were convinced that I had RA too. The rheumatologist thankfully retired, I am now cared for by the biologics team, I am very happy with the care I now receive.
People get things wrong, the medical profession are no different in this respect.
I now take no medical opinion without thourough explanation and questioning by me. I submit written updates on my condition at each appointment. So everything is written down.
If you are unhappy with the diagnosis ask lots of questions, take nothing for granted. But also remember that steroids will subdue any inflammation and improve your sense of wellbeing.
I was diagnosed with RA about 5 years ago. After a week on steroids I felt miraculously better. I then started on methotrexate while coming off the steroids. I had 2 good years with little or no symptoms, so good I thought I had been misdiagnosed. I was 70 years old and thought nothing of a 8 mile country hike, or a energetic class at the gym. Surely someone with RA could not tackle high mountains as i was doing. I told my rheumatologist my doubts and was told the only way to find out was to gradually decrease the methotrexate from 15 mg weekly to zero. Over the next 9 months I slowly decreased the dose and thought i was home and dry when down to 2.5 mg per week. Then I had a flare up. There was no mistaking the symptoms. Hands a little swollen-could not wear my rings. Wrists the same-watch too tight. Knees and area above very puffy. Joints stiff and flexibility poor. And the tiredness- needling to sleep for a couple of hours in the afternoon as well as a good sleep at night. I was advised to return to the 15mg a week and was soon well again. My only flare ups now are occasional bouts of unnatural tiredness and a burning sensation down my thighs. Hope my experience is of interest.
Hi Patty37 - yes that's interesting. I had a steroid injection the other day and the pain in my right foot that had caused me to ask for it has gone, but it was waning as I waited for the jab in the waiting room! So I don't know if it just passed or what. Also it doesn't seem to have had any effect on my other aches - I'm not in really bad pain - but they are still there. Driving makes my wrists ache, pressing the clutch pedal made my knee burn with sharp, hot pain but went away after moving about.
I have had ping pong diagnoses, ranging from MCTD, to UCTD, possible lupus, and now RA. Seems to be a fluid process with a lot of overlap!
My God - what meds did they treat you with?
Right now, just on HCQ, which has been very helpful at keeping the symptoms at bay. Had a brief try on sulfasalazine, but that did not do much for me, and could not deal with the hyper feeling from even a low-dose steroid. My rheumy always bring s up giving methotrexate a try, but it's kind of a line int the sand for me. I'm fortunate in that my symptoms in terms of joint pain are comparatively minor at this point, but what I have failed to take into account is what is happening systemically from the RA. I am convinced that my recent heart arrhythmia issues are due to unchecked internal inflammation, and it may be wise to rethink the MTX issue.
I agree - I have also educated myself about the unseen consequences of RD and it has firghtened the life out of me, but at the same time I fear being incapacitated with medication. I tried sulfas. too and I think it must have done something for the RD because since I stopped, because it made me really headachy and low mood, aches and pains kicked off a bit more.
That phrase, "No one cares more about your own money than you" applies equally well to our own health. No matter how capable and trustworthy our medical team is, the ultimate responsibility for our health falls on us in the end.
Sometimes we have to take a circuitous route and crisscross previous roads taken before we recognize what works best for us. Or sometimes something works for a time, then not at all.
The disease is always morphing, and there are always trade-offs with treatment. Like you, I would love to avoid medication, where possible---it's just not always possible!
I have been treated for RA for 19 years now . Last year went to see my doctor because I was having trouble with flare ups which were getting me down and couldn’t get appointment to see specialist or someone from RA dept...
After seeing him he suggested that I could have palindromic arthritis. When I next saw the RA nurse and mentioned doctors suggestion she just said well we are treating you for RA... haven’t found out much about Palindromic arthritis but understand very similar but doesn’t necessarily cause as much joint damage but can develop into RA..
Anyone know anything about palindromic RA as time progresses ?
Hi Jules - no, but I think that inflammation is the underlying cause: have a look at this.:
A couple of thoughts on this query from my 5 yr experience with RA
- Rheumatologist do not treat the whole body in order to get to better health even with a correct diagnosis of RA.
A couple of things that have helped me stabilise: functional medicine dietary advice (AIP then paleo diet) and hormonal medication along with the usual things sleep & exercise.
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