thinking about it, all my misgivings about mtx and medication in general are rooted in the fact that I don't understand how my disease activity will be monitored bearing in mind that blood tests have shown 3 times no RF and I do not have typical symptoms. As a result I can't really report reliably on whether or not symptoms are improving - 'changing' would be more accurate but probably won't mean much to the rheumatology team.
I am aware that the ultrasound which, I have discovered is called power Doppler, can literally see the inflammation so a blood test is pointless but how will they know if inflammation is responding to medication? Will they keep Doppler scanning me? Has anyone else been scanned?
I suppose I want to know that I still have inflammation if I'm going to start on mtx.
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Brychni
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For me Brychni I know with out tests and it doesn’t show in blood . When it’s active the rheumatoid part causes tiredness, brain fog , over hot and sweating . I may or may not get swelling or pain but my body doesn’t work . I had to have a scan for something else and the first thing they said was do you have RA? I was not in Pain I was not stiff and no swelling but I had had fatigue for weeks and I was very slow moving my blood test showed no inflammation. They said oh you can tell it’s very active at the moment.
I was getting overwhelming tiredness for several months (very unusual for me) and I just couldn't make out why, I thought I had a virus and my eyes felt really heavy all the time and everything was such an big effort. At that time I didn't have any other symptoms.
So the blood tests are different, some are to see if you have RA in the blood , sero positive or sero negative suggests you have the illness, though these tests are not reliable as sero negative people can still be diagnosed with RA clinically by a doctor.
Then theres the CRP and ESR ...these show how inflamed you are at that moment in time and is a good way of seeing how your treatment is working.
Doppler ultrasound is good too to actually look for inflammation in joints however it is only helpful if your joints are inflamed that day!
I’m always the same Brychni. Initially, I wanted ‘proof’ as I did not want to accept a diagnosis of RA without definitive pointers. Now I have found a consultant whom I trust, along with a better understanding of the disease itself, I can recognise signs and symptoms within myself. As others have said, the initial bouts of ‘unexplainable’ fatigue, now joined by stiff sore swollen joints, really unusual (for me) low mood, brain fog and general malaise...all indicate a flare. I guess, at the bottom of all our uncertainties is learning to come to terms, to accept the fact that we do have RA...BUT then to take the bull by the horns and work with our medical teams, be as positive as possible, listen to your body (without getting hung up about every little twinge), keep up with all NRAS has to say and post/read on this oh so helpful forum....these RA friends are invaluable as very very few people know about RA, let alone understand it. Take care, try not to overthink matters and put stress behind you...none of us need it!
I have a diagnosis of seronegative RA, my bloods are normal except for a low neutrophil count.
But, I certainly know when I'm 'flaring' ( most of the time) and a bit improved ( less of the time).
I have had a scan on several occasions at rheumatology appointments, but inflammation is not always seen, although it usually is. MRI scans also showed inflammed joints.
RA can be quite formidable to diagnose and treat effectively, particularly seronegative RA, so of you have a switched on rheumatologist I would listen to them.
Thankfully, the rheumatologist I am with now listens to what I report rather than just bloods and scans.
Not everyone with inflammatory arthritis has raised crp or esr. At the height of a severe flare both are completely normal with me, which is one of the reasons it took me so long to get diagnosed. Seronegative doesn’t just mean negative anti-ccp or RF, for some of us it actually means there is nothing at all abnormal in our blood work even when we’ve got bits of us swollen 6 times the size they should be and can barely move. Literally the only way to know if my meds are working is from the degree of symptoms I’m experiencing.
An ultrasound was ultimately what got me referred and finally diagnosed. Last winter my fingers properly flared for the first time, and the doc did x-rays when it was just pain and stiffness, but as they and my bloods were clear said there wasn’t anything obvious. After about a month of worsening pain and my hip joining in, I developed a serious case of sausage fingers: but for that, the GP has actually told me she wouldn’t have sent me for a scan. Ultrasound of my fingers showed grade 2 synovitis in one, general inflammation in two others, but it also showed inflammation in my wrist that I had no symptoms of at all. When my hip, elbow and/or toes flare, there’s never been any visible swelling or redness even though they’ve all flared for upwards of 6 months at one time or another. My toes crippled me for almost 9 months the first time they went, had to routinely come down the stairs on my bum and everything, but there was nothing at all to see: the only bits of me that ever seem to show outward signs of inflammation when they flare are my knees, and now my hands.
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You should also bear in mind, I had what I now know to be my first, generally much milder symptoms of arthritis 20 years ago. Lots of odd little niggles that would be there one minute and gone the next. My disease has been left untreated for two decades, despite being constantly back and forth for the last 10 years with increasingly severe flares, and the end result of that is that I have permanent joint damage and deformity as a result. Just because you’re not experiencing severe pain or outward swelling, that doesn’t mean it can’t be an RD. It does mean you potentially have the opportunity to avoid making a situation unnecessarily worse. The way I see it, the worst thing that could happen if you take the mtx is nothing changes. The worst thing that could happen not taking it is ending up in chronic pain and struggling to perform normal daily functions. I’m only 36, and I’ve got a body that creaks and aches like an 80 year old: I’ll never know for sure, but I’m reasonably confident that had they diagnosed me even 10 years ago, I would be physically in a much better place than I am now.
Hi Chalrie_G I didn't have any obvious pain in my hands or wrists either when they scanned me. I felt a bit silly being there, tbh. I too have had niggles all my life which have been ignored; by me as much as doctors.
Along with some nasty side effects the worst that could happen on mtx for me is headaches. I would have to put my head under a train. Just had a consultation for severe cluster headaches and migraines which I've had for 20years or so and the recommendation for meds are disappointing. There's nothing new, some I've already tried have horrendous side effects, and some make me feel like throwing up just thinking about them, like having a mirena coil: I don't think so. And then there's the acute medication, injections which I take now. They knock me out but don't always work.
So, if I agree to all the medication I'll be taking mtx , likely to make head worse. Preventives for my headaches that may or may not be effective but will almost certainly make me depressed (more depressed) make me put on weight (the drugs are also used for recovering anorexic to put on weight), cause extreme lethargy and tiredness and irritability.
Putting it all together I can't see the benefits. Given that my poor kids have no extended family and only me and my husband who works all hours, I wonder what kind of a mother i will be! Honestly, think I'd rather die.
This is meant in the nicest possible way, but it’s almost like you’re looking for reasons not to treat this. Nobody wants to need mtx, but the docs aren’t suggesting it for the lols, and whilst I know better than most that they don’t always get things right - I’ve been misdiagnosed several times over the years, including in some pretty serious and potentially life-threatening situations - I wonder if the main problem here is that you’re in denial. I absolutely get what you’re saying about worrying about side effects, but you’re not psychic. I have horrendous migraines, I have extremely painful cranial nerve damage as a result of intracranial surgery, and I have an underlying congenital brain defect that in combination mean I have at least one headache of some description 24/7 and have done since 2008. At my worst I can barely hold my own head up, and like you, there are no painkillers or treatments that help me at all, but I can tell you that my own experience of mtx has been that it’s not added to that burden. Weight gain is a massive issue for me as a result of a medically diagnosed slow metabolism, insulin resistance and a prior history of morbid obesity partly caused by almost losing the ability to walk at all before getting my first brain op. I lost 10 stone and I’ve been maintaining for the last 2 years, but having been really big twice in my life now, I am acutely aware of the fact that I’m sensitive to any med that can contribute to weight gain, and mtx has also caused me no issues there. Pred, on the other hand, which I think I’m right in saying you’ve been taking recently? That stuff is lethal even if you’re not normally prone to weight gain and I hate every second I’m on it. Even the parenting stuff I get: I’m a single dad to a 12 yo with complex medical and additional learning needs, I have no family or friends able to look after her to the point that if anything happened to me, social services are the only option, and I can tell you that the biggest issue with my ability to care for her is not my neuro issues, or my heart problem, or the severe abdo pain that randomly wakes me and sometimes last for days that they still can’t get to the root of, but the day to day pain and difficulty stemming from my overwhelmingly crap joints. Pain and difficulty that would have been entirely avoidable to some extent had I been fortunate enough to be in the situation you’re currently in where doctors have recognised from scans that you have an underlying problem in spite of negative bloods.
No one can make you accept the doctors saying that you have clear signs of an inflammatory disease or force you to take the mtx. If you don’t want to then that’s entirely your right and your choice, but if that’s the case, why keep posting? I don’t mean that in a nasty way at all, purely out of curiosity. You must have some quiet, niggling suspicion, however small, that you do have a problem otherwise you would just dismiss the situation outright and carry on with your life. You wouldn’t be obsessing over the reasons why the medics must be wrong and the treatment is inappropriate. Not that many days ago you were questioning whether what you’ve actually got is systemic scleroderma, which kind or proves the above point, but as pointed out then, the treatment for that would also be mtx. Every single reply you receive here is in the same vein, and whilst it’s possible we’re all just as wrong as you think the doctors are, perhaps it’s worth considering what if we’re all right and you do nothing...
I get the sense that you’re quite medically minded, so this might be of interest to you:
It’s a paper regarding the role of ultrasound in diagnosing early inflammatory arthritis, but would be just as applicable to the process of diagnosing the early signs of any inflammatory autoimmune issue.
I say all of the above from a place of empathy and compassion, not any form of criticism, but would strongly suggest that you need to have some of the conversations you’ve raised on here with involved professionals. I suspect the only way you will get clarity or overcome any denial you may be experiencing is to put these things to people far more qualified than a peer support forum.
I would also emphasise everything you have so eloquently stressed...especially regarding the conversation to be had with healthcare professionals. Charlie...you sound like one amazing young man with more than a lifetimes worries on your shoulders...we can certainly all learn from your remarkable attitude and strengths. Thank you.
Hi - First of all, your situation sounds very difficult and you have my every sympathy. I constantly worry about what would happen to my children if anything happened to me or my husband.
Back to medical stuff: when I had the actual scan the woman only scanned my fingers, most of my hands and up to but not over my wrists. She declared that it all looked fine. That was it. Then I got a letter weeks later, it was a long time, more than a month telling me I had inflammation in my wrists. I'm suspicious because it all sounds a bit vague and I don't have the same symptoms of the majority of people in the forum.
I did not come up with scleroderma myself. My GP has mentioned it several times because of the worsening Raynaud's.
I'm 5 ft 1 and 3/4 inches - and weigh 8 stone sometimes a bit less. I took Pizotifen for a month, carried on with running etc hardly ate a thing and put on nearly a stone. It also made me very sluggish, I just had no energy and started to feel very low in mood. It was great for the cluster headaches and I did feel clear headed. However I had a similar experience with some kind of triptyline years ago and that too worked amazingly until one day it didn't and I had one of the worst attacks ever, while driving. I literally threw up over the steering wheel.
As for my feeling about having 'something' wrong with me, I do, otherwise I wouldn't have gone back and forth to the GP. However, I feel that it's more to do with bad joints. Possibly hypermobility (both my children have this). As for talking to medical staff the GPs are worse than useless and I say that as someone who has huge respect for the medical professionals I see but over the past few years I have seen another side. they can be rude, dismissive, full of self righteousness .
Rheumatology have been much better, but I had my diagnosis appointment at the beginning of lockdown and the only reason it was suggested I add sulfas. to the hydroxy. was because of a call to the nurse about a horrible 'attack' (the only way I can describe it) in my left shoulder one night.
So I have escalated to methotrexate mainly because every time I have a nasty episode I 'report' it to rheuamtology as has been suggested by GP and other members here, but I haven't been examined or had blood tests - -I haven't had any rheumatology type blood tests for well over a year nearly 2 - although it could be longer. Beginning to lose the thread! Basically it was my second rheumatology appointment at least a year and a half ago when consultant asked me again if I had miscarriages and any skin changes. She then said it was probably OA but said she would arrange MRI with no mention of the ultrasound., which was a surprise when the appointment for that came through.
As it happens I have never had the shoulder thing again, or the painful walking like on the shopping trip with my daughter or the night time foot pain! That did go on for a few days, which is unusual and it was very painful and for that I was given a steroid injection, although as I was sat in the waiting room I could feel the pain in my foot wearing off 🙄😂 so I have no idea if the following lifting of pain was due to the jab or just another passing pain episode.
I'm not taking Pred - not sure what that is.
My next appointment is a telephone appointment on 25th, with 'mixed clinicians' whatever that is!
Unlike Charlie, I have seropositive RA and am pretty much text book regarding increased inflammation... if I flare it shows in my CRP and ESR markers. My joints rarely swell, but they hurt plenty and some have badly eroded over the years. Hope you get some relief soon.
Me too Wishbone ....... sero-positive with textbook symmetrical joint involvement, swelling, pain deformity and lots of damage and lovely nodules to boot!😁 Then followed by lots of lovely ops to try and patch-up/replace various damaged joints, tendons, muscles etc! Still ....... onwards and upwards eh? I'm still here and can still get vertical so I'm bloomin grateful for that.
What I will add though is that had something like MTX been available back in 1983 when I was 14 and diagnosed, I was have snatched (or rather tugged very pathetically) it out of the doctor's hand and taken it there and then! Anything to avoid just a little of today's damage would have been worth it! RA can be very insidious and we can't always tell when damage is being caused and once it's occurred unfortunately there's no reversing it. I'm guessing you would probably agree with that Wishbone from your vast experience too!😉😄
Vast experience! I think not Kags! I'm just a novice, at least compared to you with 20 years more experience of RA than me. It shows too going by amount of ops you've had and the damage to your joints and stuff. Good on you keeping your spirits up.
Joint erosion, though happening, was very slow for the first 10 years when I was on mtx. It was then that problems developed controlling my RA and joint erosion speeded up. No ops though!...think my hands are probably in need of one or two, but I'm too tough to bother with stupid little ops so I just grit my teeth and bear it like real men do!
Haha - thanks Wishbone.😊 Regarding keeping the spirits up, we just do the best we can don't we - make the most of the good days and all that.
I'm sorry your erosion has speeded up over time - that's disappointing. I think you've definitely had your fair share of unpleasantness with the RA too - I'm certainly grateful I haven't had any of the lung type problems you've experienced that's for sure!
Well done for gritting the teeth, bearing the pain and avoiding those pesky and inconvenient ops!!😆😆 Spoken like a 'real' man!! 🤣🤣
You say you are sero-negative but do you also have normal inflammatory markers? Mine are always laughably low, but luckily my rheumy understands that normal for me is 1 or 2, and a flare is 6-8. Which most rheumies would dismiss totally! You can also test for plasma volumes PV which are another test for inflammation.
I’ve also found my rheumy does understand changing symptoms, and accept that if I say my knees feel fat then that is a signal of inflammation. After all they deal with people like us day in day out, so do get to recognise symptoms unlike GPs who don’t see inflammatory arthritis that often.
I also have a rheumy who has a small ultrasound in her office, and checks at least one or two joints at every appointment - but I don’t think that happens often in the UK.
I know nothing of 'markers'. the first time I went to rheumatology was a few years ago she did full blood tests - nothing abnormal apart from the antiphospholipid antibodies.
Same about a year and half later but this time she ordered MRI on my neck and the Doppler scan for hands. Blood results were the same including the antibodies but hand scan showed inflammation. I was told about the inflammation in my third visit to rheumatology in March of this year and did not have any more blood tests.
In fact when it was suggested that I start sulfas. I asked for more blood tests and was told 'No'. She said 'We have seen the inflammation on the scan.' And that was that.
The 3 blood tests I had for sulfas. were only for kidney and liver. I had another blood test a couple of weeks ago for methotrexate and as far as I know that was also only for liver and kidney. I'm pretty certain that somewhere in the midst of all these blood tests, I have casually inquired RF and inflammation indicators but have been told that they weren't included in the tests.
So, I think you can see why I am wobbling about mtx. Seems one hell of a leap.
It’s not one hell of a leap, though. Inflammation in hand joints picked up on ultrasound is indicative of an autoimmune inflammatory process. I haven’t had my joint panel repeated because in the middle of a flare it was negative, but they have the scan that clearly shows inflammation in my fingers and wrist. I’m being treated on the basis of that scan and the self-reported history, and the treatment is helping. If they picked up antiphospholipid antibodies, they had to have run a full joint and autoimmune panel including the inflammatory markers mentioned (esr and crp), which is what all rheums tend do as standard when they first get a new patient. The bloods help guide the diagnostic process, but they’re not the be all and end all, because any rheum worth their salt knows that negative bloods amounts to literally that: negative bloods. It’s not definitive for ruling out autoimmune conditions. I’m beginning to think most rheumatologists are the kind of people that do cryptic crosswords to relax.
I'm almost 100% they've never checked for Inflammatory markers since my second appointment nearly 2 years ago. The only blood tests since then have been for liver and kidney for sulfasalazine. I asked for blood tests but was told No.
Listen to your rheumy team & stop overthinking everything .......you will soon know if your drugs are working....but don’t expect overnight miracles....but you have to start taking them to find out .. I’m sure you have been told ....Mtx can take 3/ 6 months to kick in.
Every rheumatologist orders different tests according to his experience of each patient....we are all different..
If you don’t listen to your doctors & accept what they prescribe ...they won’t know how you are progressing...it’s a two way street.....we have talk to each other....doctors do not know how you feel unless you tell them.
But that's the thing: I'm not in huge amounts of pain. It comes and goes and with the exception of 2 fingers occasionally swelling up, I'm not sure what I can report.
Well that's good, your illness maybe is in a quiet state and thars good news. So if you keep to the plan and it will stay that way longer xx also see the above answers xx
I'm serous negative that is no rheumatoid factor in my blood but I have severe RA !! But my blood inflammation( crp or esr) is often high that shows active , not quiet, disease xx hope this makes sense !!!
Believe me with uncontrolled R.A....you can feel no pain& dance the fandango...then not be able to get out of bed for a week....but until you take the drugs you have been prescribed...don’t expect many fandango days...your doctors are not prescribing Mtx to, pass the time...they are trying to help you on the road to a better life.
Fandango!!Me and my husband did Tango at our wedding - we were crap but it was good fun!
I've been for a run along the sea front this evening while my son was at football training. It was heaven. There were a few people around, a bit of a buzz. There is a really well maintained walk - run - cycle path with loops, hillocks etc. There was a beautiful sunset and the tide was out. I had no real pains while running, my lungs felt good and I had a clear head. As soon as I got back into the car my left knee started hurting as it had on the way down. It did this last week too. Why on earth does it hurt in a sitting position in a car but not on the sofa at home??
Surely running into the sea in the sunshine is something to aspire to? Mtx could help you get there.🏊🏼♂️🏊♀️🏊🏼♂️Swimming is a good non weight bearing exercise for people who do have RA.
Of course if you don’t try.....you will never know!
If I’m not hearing a cry for help between your written words, then please forgive me. If you are experiencing overwhelming issues (physical and/ or mental) you really must discuss them honestly with a health professional before things get out of hand....which absolutely no one wants. You must have realised that all the replies you have had since you first started posting have been encouraging and supportive of you...now it’s reached a point where you must do something positive, be proactive. It’s not easy, not at all but it can only bring you some relief by pointing you in the right direction...outwards and upwards. Please.
Hindsight is a wonderful thing. When I look back I realise that for at least one, and maybe more years prior to diagnosis I had fluctuating aches, swellings, grumbly bits that I basically ignored. The grumbles slowly got more grumbly while I nagged my GP to refer me. And then it exploded in the space of 6 weeks and I went from little niggles to immobile and in agony.
I think rheumatologists know and can spot this pattern, so don’t dismiss small symptoms but be pleased they are taking your seriously.
Hi, Brychni. I took MTX for a year and a half. I got so sick I decided to stop taking it. I then seemed to be in a remission for nine months until I had knee replacement and all hell broke loose in my body. It is now six months since my knee surgery and I have pain throughout my body. My rheumatologist said my bloodwork is fine and all the pain I’m feeling is now osteoarthritis. I’m addition, I have had peripheral neuropathy in both legs for years. My knee is worse since the surgery I wish I had never had. I walk with a limp and I doubt it will ever improve. I don’t think doctors always know what our pains are or what medication to prescribe for it. We have to give them the best feedback we can provide. And see what helps the most. Good luck. I hope you find what helps you best.
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I think not Kags! I'm just a novice, at least compared to you with 20 years more experience of RA than me. It shows too going by amount of ops you've had and the damage to your joints and stuff. 
Good on you keeping your spirits up.
How do you tell the difference between the pain from RA joint damage and the pain from RA being active/having a flare?
Steroid Jabs? 
Disappearing veins? And MTX allergic reaction question.
Restarting medication
Off mtx
