This is my story and I am wondering if anyone out there has had anything similar or advice on how I can carry on.
I became ill all guns blazing with definitive diagnosis of RA back in 2011/12 when I was 45. In fact I came to a full stop couldn’t even lift the duvet off my bed or grip my toothbrush. Most of my joints were swollen red angry, my body felt like it had been filled with hot concrete and I had a permanent headache. I could barely walk, got to 6 stone in weight and most of my hair fell out. I was off work for 9 months and then had to go back very part time which was meant to be temporary but became permanent.
Finally got to see a Rheumatologist privately to avoid many weeks wait on NHS. I was started on 15mg of MXT and given steroid injections immediately and after a gruelling 5 months I found I could at last bend my knees and write properly and life got better.
To cut a long story short I was fairly controlled on 20/25mg of MXT orally for 6 years. I still had pain and awful fatigue some of the time but life went on.
Then in March 2018 my liver started objecting to the MXT. I came off it and my RA symptoms came back quite quickly by beginning of May I had the hot concrete effect my knees were swollen and my hips and shoulders stiff and often on fire and my feet were rubbish. I went back to Rheumatologist and I was told to go straight back on MXT because last reaction was caused by a virus. I knew this was a tall story but did what I was told and After a few doses I started to feel better. Needless to say liver results were very bad after 5 weeks. I was then offered no further treatment as my body was not showing a high DAS score. I was asked to go for ultrasound on my hands and feet so they could assess the RA activity. HELP I had two very active holidays booked with my teenage boys and I really wanted to enjoy it with them and as I was so scared of getting ill quickly again I decided I would try MXT one week have blood tests the next see what the liver result would be and then take another MXT if I could when liver results showed it was ok etc etc. This went on until end of July and then my liver decided it would not handle it any more and even after a month the liver function tests were still bad. I had to stop MXT forever but I got through a fantastic holiday with my family.
Since then it’s been rubbish. Strangely no joints have swollen up but the pain oh the pain in my hips has been dreadful, my shoulders are so very painful and stiff. To top it off I have spontaneously torn a ligament in the bottom of my foot off the plantar plate. My feet nearly always hurt anyway but they are bad. I got the diagnosis of the torn (maybe ruptured) ligament from an orthopedic specialist privately as couldn’t wait for NHS . I am now wearing a toe alignment splint for 6 weeks. I went back to see Rheumatologist after having ultrasound scans on hands and feet on NHS. I was told my feet and hands were fine no strong signs of RA just minor inflammation, no mention of the agony of the torn ligament or pain in general in my feet. Hands the same no real inflammation even though I had taken my rings off several months earlier and I simply can’t get them back on over my joints. I did voice the fact my hips were appalling and I couldn’t sleep because of the pain there and in my shoulders and feet but it was decided apparently I was ‘in remission’ and I was offered nerve pain killers, I was not examined in any way. The Rheumatologist just looked at the scan results. DAS score and bloods too good/low for treatment apparently . All the Rheumatologist could suggest was that I take nerve painkillers. I stated I would rather treat the cause not the symptoms but it was ignored. I should add now that I had side effects to hydroxychloroquinine and allergic to sulfaslazine a few years back. So DMARDS were out of the question. It looks like I am slowly waiting for my body to get worse and worse and worse. Oh joy of joys, in the meantime the pain is causing insomnia and inability to cope with daily activities. Feel like screaming from the roof tops most preferably flying away! If only!
So here I am thinking what should I do? Life is damn awful. Change my diet completely no gluten no potatoes/nightshade family, no sugar no dairy OMG would this work?? I eat a normal balanced diet. Go privately to get another opinion from a Rheumatologist, pay for my treatment privately not sure how. It’s a mess. Thanks for reading my story. Anything similar happened to you?
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Oh my goodness you have really been through quite the experience. I was diagnosed with PMR in 2004 and ten years later I started having additional symptoms that led to a diagnosis of RA in 2014. I was in the hospital in early 2016 with GCA and had to take huge doses of prednisone to manage it I cannot take MTX because of severe reactions and I had been through all of the biologics when I made the decision to be on prednisone only which actually was enough to keep the RA away to the point my rheumatologist says it’s now in remission. I still have the morning stiffness and soreness from the PMR but it’s nothing like it was. Have you had any luck with prednisone at all? I do watch my sugar intake and I am gluten free but that’s just a result of my personal observations. I know I feel better without them. I’m down to 5mg of prednisone a day now. That and a thyroid medication are all I take.
I hope you are able to get some relief from your pain soon.
Thanks so much for getting back to me. You have certainly been through the mill and clearly very determined. I have often wondered about GCA as I have a lot of tenderness on my scalp which is fairly permanent, headaches/migraines every week (I take Triptans which work) plenty of intermittent jaw pain to the point that eating is an ordeal but my temporal arteries are not swollen I don’t think! But your story has highlighted again that I do have a few symptoms of this horrid condition and when I get to see the new Rheumatologist where ever he/she maybe I need to bring this up. I usually have a really good response to prednisolone when I take it, to be honest it has in the past made me realise how ‘normal ‘ people must feel!! All this support is so very helpful and arming me with a way forward. So pleased to hear you are on the up. Good luck and thanks again.
Please be very care and vigilant with the GCA symptoms. I know they can present differently but in my case it was the worst headache in my life, acute jaw pain, vision and speech problems. It was apparent something was terribly wrong but GCA isn’t always so dramatic. If at any time you feel you have GCA symptoms, please get it checked out immediately.
That is terrible treatment! Contact NRAS and ask for some advice. Totally not acceptable to leave you in agony like that. Sounds very much like they are fobbing you off.
My bloods are often OK, even when all my joints are swollen and hot. The other thing you could do (I did this) is send an email to rheumatologist (copy in GP) and politely say how things are for you, and how it is impacting on your life. State very clearly that you are not happy with the way things have been left. Just be polite and factual. Make bullet points if helpful. They cannot ignore a formal letter.
Thanks so much for getting back to me. I am quite overwhelmed that so people have kindly replied. It’s so good to read people’s responses and it’s helping me to forge a way forward. I contacted NRAS helpline before my last consultation and they in a roundabout way suggested I might have to be ill (ie the right DAS score and blood markers) to be offered alternative treatment due to the wretched NICE guidelines for prescribing anything other than DMARDS. My GP had said it might not be a bad plan to explain my predicament to Prof Peter Taylor as I was in his early onset clinic and can’t be seen by him anymore. The truth is this current Rheumatologist scored nil points in history taking which is as we know a key factor in clinical assessment. And no physical examination ! Nil points again! Unfortunately I used to be a nurse I am highly judgemental! Nitrobuuny so kindly replied and brought up PMR and GCA all of which could be relevant in my case.
Thanks for suggesting I write/email the Consultant/Team it is a good idea. But as I have so lost faith I think I will probably now get a referral somewhere else. Unfortunately my GP cannot recommend one, I am looking at Birmingham and Reading.
Thanks again, enjoy your day. I am meant to be joining a local wildlife group this morning clearing brambles but I am having to give it a miss.
Hi there, I think if the methotrexate is causing liver problems and you have tried other dmards without success then biologics would be a reasonable and logical solution. There are alot of people going down the same route as yourself re private Rheumatologists. It can be indeed quicker to be seen but frustrating if the treatment remains the same. It's very strange and complex how the body works but you have a diagnosis of RA, and your in pain. Have you been referred to a new NHS Rheumy? If not, then maybe wise to! Lovely to read you got a good holiday with family after what you had gone through. Sounds like you have a strong willpower but this disease takes its toll on the strongest of us. There are recent posts on food and RA. That's also complex. I had a tomato based pasta dish yesterday and feel fine this morning yet lots of people can't eat tomatoes. Yes, I could scream from the rooftops too sometimes! Wishing you the best of luck! Xx
Thanks so much for your reply. I have decided I do need to get referred to a new Rheumatology team, GP can’t recommend one so I am working on it. This it would seem is the way to go. I have never noticed any food reactions to my arthritis although I have taken out citrus and tomatoes for a period of time which didn’t make any difference. I may need however to look at this more closely. I can’t get Biologics as I don’t qualify on the NICE algorithm!! With my DAS and blood markers so that’s pretty rubbish.
Thanks for your reply. I think this DAS scoring is very unfair. How on earth can one be judged on their joints in one day? It's not just the joints that RA can affect either. Money over patient care I think. My now NHS Rheumatologist is brilliant in comparison to my first one. Just goes to prove even professional Consultants sharing a specialised medicine can be so different in their opinions! All the very best to you. Keep us posted. We will all support you. Xx
That's so nightmarish! The NHS at its worst.... I am so hugely gateful that nothing as dreadful has happened to me, so no direct experience to offer.
However, even if only to help others rather than yourself I would do as Nettienet suggests and write to consultant, copied in to PALs as well as GP. As well as saying how it is, ask to be reassessed and considered for other drug treatment for the RA. Have you tried Leflunomide for example?
It seems you're also talking to GP about being referred elsewhere which is good. Even if further away having a rheum you get on with is worth the journey. I saw my latest one last week, an 10 hour round trip. Have you talked to GP about being prescribed prescription strength anti-inflammatories or steroids? If they help then a strong sign that your pain is inflammatory no matter what blood tests say (but stop well before any blood test to check inflammation). My bloods are always good now, and my reaction to steroids has often been the decider for changing to more effective treatment.
And if you do go to see a private one, do make sure they also do NHS work as otherwise they can't prescribe biologics - you can only get these on NHS. And if you need more scans and so on, these can cost a fortune privately so push GP/rheum.
Apart from that, huge amounts of sympathy for such a crap situation. I hope you find a route through this soon.
Thanks so much for your reply. Really appreciate all that information and advice there. I suspect Leflunomide might be a non starter as it can be harder on the liver than MXT.
Wow that’s a long trip to see a Rheumatologist but if they are interested in helping you then it’s worth every effort. Then that is my plan to find a team that will listen and be actually keen to help. I have a few options so I need to get on with it. I have lost faith in current team so I think I am wasting time bashing on their door, as it were.
If you live in an area where it is possible I'd definitely gry to get second opinion from another Consultant Rheumatologist.....either ask your Rheumy nurse,(altho she may feel loyal to present rheumy so tread carefully) or
go in to see your GP so that he/she can see how much pain you are in & ask for a recommendation.
I honestly think some Rheumatologists just coast through prescribing a,b & c,......then give up. Your GP should know a conscientious clinician who will help you.
Unfortunately feet aren't included in your DAS score when Biologics are being considered....so your present foot problem won't affect your score.
Maybe a new rheumatologist would assess you differently.
Re your hips...has anyone mentioned Bursitis? I have recently developed this & apparently a Depo (or similar) injection can help.....I haven't tried this yet....as I have recently had Steroid injections in myfeet so don't want more steroids than necessary..........your GP will be able to help with that.
Sadly for now you will just have to battle away.....as you have found RA really is a Cinderella disease.....but perseverance does eventually pay off .
Good Luck...there are some great rheumies around. I have been really fortunate & have only had two in 20 years...they listen, believe me & discuss not impose drugs.
Be nosey....ask around ....if anyone mentions RA ask who they see.I am not sensitive about people knowing I have RA....as we all know the general public don't make big thing of it as they don't understand it.
I've had chats about rheumatologists from the GP surgeries to on Park & Ride bus.
I really do hope you get some good help very soon.
Wow! That’s a horror story all right. Even though I’m from OZ, the NHS seems to be similar, so it would appear that you’re not going to be offered biologicals because “it seems” that your various “markers” are ok - I use the quotes deliberately, because obviously things are not ok.
I do have a female friend who had an out of the blue PMR onset at 65yo, just wondering if anyone had considered this diagnosis? Reading seems to indicate that it can co-habitate with RA for some people. Perhaps PMR is in the ascendancy at the moment?
There is one surefire way to diagnose inflammation deliberately, and that is to use something like Prednisone - perhaps yet another trip to the private Rheumy. Put you cards on the table? At the very least, life might become more liveable.
I also agree with giving the NRAS Help Line a go, you’ve got nothing to lose, and a lot to gain.
As to diet, in the absence of peer reviewed research, I wouldn’t be making my life any more miserable than it already is - got to have something to look forward to.
I really feel for you, here’s wishing that something positive happens soon, cheers Deb
Thanks so much for your reply really appreciate it
😊
Just to reassure you...and help you to push a bit.
I went through a pretty tough time with diagnosis. Failed on three dmards (they didn't work , and just gave me awful side effects). There was a good deal off faffing around with different docs saying different things. I insisted on IM steroids whilst they were faffing. Plus wrote letter to consultant. Actually copied in orthopaedic surgeon as well as GP. Good idea to add PALS.
Long, boring story cut short...I'm now on a biosimilar (benepali). Letter from consultant states swollen joints in feet, knees, small joints fingers etc. With an end note that says something along the lines of 'this lady clearly needs better treatment.'
It took a bit of a fight but I got there. Don't be pushed aside. I would also either ask GP to give you a steroid shot (if they do it at yours) or phone help line and ask . If nurse refuses ask to be called by your rheumatologist.
Sounds so sad and so very frustrating what you have been through. One thing I did wonder about however is that did you only go to rheumatologists? A thorough endocrinologic examination in your case seems to have been quite important. RA is not the only condition that can give the symptoms you have suffered.
I see that you are from the thyroid forum, and right enough thyroid function is what should be checked and stormpetrel could find important information on this forum.
Yes, as a thyroidie, and campaigning for better thyroid health, there is many links with low thyroid function, and low T3 levels in particular, with many diseases and conditions , not surprising when t3 is needed by every cell in the body for energy and health, it makes sense to me that, if failing, it likely has a knock on effect. I know my CFS and Fibro went in days when I stopped taking T4 for T3 only. It would seem that it was the T4, not being utilised in my system properly that was causing the problem. We are all different and all have different needs. All the options need checking out and ruling out or in.
I know Linda96 and know she has experience of many auto immune that might be worth getting checked out. As most of us now know, having one often means more, and narrowing down one from another can be a nightmare. Hopefully Linda96 can narrow things down a bit. I thought it was worth asking her.
Hi Stormpetrel. I am appalled at your treatment, or lack of it so far. It seems the NHS seems happy to leave you because you don't fit in the norm, but do any of us, we are all different. I was dx 33 years ago, possibly wrongly with Lupus, but the treatment was excellent for the time. Too much steroid, based on today's standards. I woke on one morning and thought I has MS as couldn't move, every joint inflamed. Even then I had to wait 3 months for an appointment to see a Rheumatologist, but after that I was lucky a very committed man who looked after me. I already had an AI disease, Hashimoto's. I have seronegative erosive RD. The breakthrough for me was Humira. So much good advice to you on here, so fingers crossed you will get the help you definately need. Take care. X
Hi there. We seem to have had quite similar onset at around the same time. I too am presently untreated having tried and similarly failed to tolerate MTX as well as 4 others.
Even though I’m not presently in as much pain as you describe - periodically I am so I know exactly how you feel. My diagnosis of RA changed to Sjögren’s when I relocated and now, despite high levels of systemic inflammation (PV and CRP), I’m told I won’t meet the criteria for biologics unless I have synovitis or kidney or brain involvement.
I’ve already had degrees of all these but they are apparently dormant now although I still flare with pain but am now told it’s neuropathic or wear and tear (significant degenerative disc disease) and there’s nothing they can offer me for the time being. Furthermore I get tested for things that I’m fairly sure aren’t relevant to my disease but it seems to be a way of stalling me while they wait and see where things go. There is no back up plan for of things flare up - I’m never offered oral or IM steroids
I too haven’t found that dietary changes make any difference to my fatigue or pain or even to my GI system and I’ve tried being gluten free, taken B12 and D3 and take 125mcg Levothyroxine - tried this T3 but it gave me palpitations.
No suggestions apart from gentle walks in fresh air daily, physiotherapy and Pilates have all helped me to quite a degree. The fatigue is the absolute pits for me and numb finger tips and feet mean I seem to have frequent trips and one severe fall with rib fracture recently. The neurologist is trying to call this functional overlay or functional neurological disorder but I don’t accept this. Functional is a new word for hypochondria or conversion disorder so how come my inflammation levels are high again now then?!
I think it’s a kind of NHS no man’s land we are dumped in and my innate optimism flags a lot these days. But I have a great GP and still see the rheum - although I don’t know how much longer for if I’m not eligible for any more RA treatment.
You definitely aren’t alone there are loads of people like us on the Lupus UK HU - all in a similar boat. 🤷🏼♀️🤗
Try l carnitine 400 mg twice daily for fatigue and focus,is an natural amino-acid. That's how I manage to keep my brain together and get on well at uni. I am a nutritionist, is v safe to take it!
For me this is part of my therapy regime. For me it has in fact togethet with other stuff, controlled my inflammation. When you find a way to support your thyroids and through this a normal metabolism of hormones, supporting mitochondrial function it decreases inflammation. You need to see the whole picture.
after 13 yrs of MTX my liver said enough was enough and I was stopped on MTX.I stll take steroids daily but also have Rituximab by infusion at hospital annually.Yes I have been worse since stopping MTX and the pain has increased,but not so swollen and inflamed joints.Its a fine line to judge dailly mobility against a fit liver,and I guess hepatic diseases could kill you sooner than a swollen knee,MTX is a brilliant drug but as we know with RA,almost every treatment we receive has some kind of kick back
I’m so sorry to hear all that you have been through and unfortunately I have limited time here on the site but - my 17 year old daughter went through a very similar journey to you, it sounds like I’ve written your story!! We did allergy tests and she’s gluten and dairy intolerant so I do not give her dairy or gluten at home ( I know she cheats outside the home) I also do her a freshly squeezed veg/fruit juice about 5 times a week and pro biotics every day. She’s of mtx and no symptoms at all in 7 months. We are hoping we have it under control. Good luck with everything - my train is here! 😘
Try CBD oil 2500 mg and take daily 5000 mg turmeric with 20 percent piperine! Will do you wonders! Do not forget about milk thistle for your liver! Best of health!
Hi mottram after failing 3 dmards and another recent stay in hospital I’m at a total loss what to try next I have been considering looking into Cbd oils can you give me an idea where i can purchase them this strong as others I have seen are nowhere near this - thanks
you get it from brothers, put CBD oil and brothers in search and your find them, start off with green one 2 drops in morning working up to another one in evening
Hi there thanks for the info will definitely give it a go! Can I ask if you take it, if so do you still need to take meds? I’ve been suffering with RA for quite a few years the only relief I have seems to be from steroids all other meds made me ill rheumy says she won’t prescribe any more pred so need to try alternative
yes you still need the meds, it only helps with pain, I been on one med but didn't agree with me so going to try another although don't like to have to but you got to try to get rid of this blinking condition, and only meds have a chance to do that
but the CBD oil is all you need for pain relief, although it wears off but I have only started the green one, so will progress to the blue one
the more you have of it the longer you have it it helps more and more I have been told
Hi Shell! Best one is on Charlotte's Webb, quite expensive but good quality! Another good one is the black edition from CBD brothers. I've recently bought one in oral spray form from the vape shop, really good quality, made by Live well CBD! For beginners try high concentration to bring down inflammation and then go for maintenance dose. I live in UK, purchasing my CBD via internet or vape shops. Research the product before you buy it! 😘😘😘Best of health! Cheers up guys, we are still alive!
Hi mottram thank you so much! I too live in the UK I did buy some from H&B the higher dose one but it had no effect. I was also interested in your posting about turmeric I too take that but not in the dose you recommend. Is that a specific brand or have you been advised to take that quantity? I have been quite unwell lately I have just come out of hospital for the 2nd time this year. I need to try and find something that alleviates the pain as so far nothing has worked only the steroids. Can I ask whether you still take medication? Thanks 😀
So sorry you have all this pain. Pain is such an awful thing. I have had painful feet for as long as I can remember. I am 20 years older than you. Although my RA pain seems ok with my methotrexate seems to be helping I’m on a very high dose. Five 2.5 mg twice (5 on Wednesday 5 on Thursday) a week. I worry about my liver as well. But my feet seem to be caused by peripheral neuropathy and they tell me that a neurological med would help but I’m holding off on more drugs right now. A neurologist could determine if your feet are suffering from neuropathy or not. Good luck to you with this quandary of meds we seemed forced to take to find relief.
What a nightmare scenario! Hot concrete is exactly it.
Very much in agreement with all the brilliant advice given so far, very important to get 2nd opinion/new rheumatologist as you really need someone onside.
PMR jumped out at me, and when that rears its ugly head I go straight for a good old steroid shot in the bum - that can do wonders in terms of quietening things down because when you're in constant pain you can lose your mind. Also, I can't tolerate oral steroids but the jabs work well, and it's safe to have 3-4 a year.
You mentioned the offer of drugs for nerve pain - I take one called Amitriptyline and swear by it, if nothing else it guarantees a good night's sleep (I take 2 at bedtime as they make me sleepy).
Once you have pain under control and are sleeping well (often the two go hand-in-hand) you'll find it much easier to cope and see more clearly, so you can work out a strategy of next steps.
CBD oil helps, without doubt. Also, have a look at something called LDN - it's often talked about on here and is a little more outside the box than the usual options of MTX/DMARDS/biologics.
One final thought is were you ever offered MTX injections? You may find you can tolerate them and they don't stress your liver so much.
Luckily we live in an age where there are many options for treatment, as opposed to the 'bad old days' and I'm sure once you have the pain and insomnia under control, things will fall into place more.
Unfortunately I had a similar experience as you but most of my awful time was due to my consultant being part time and never there. Anyone else I saw said that I needed to see my consultant next time (as you can imagine it never happened) methotrexate was awful for my liver too I did eventually get another Dmard or 3 but they didn’t help either.. eventually I had rituximab infusions which have shot my immune system to pieces never to recover. The good news is that although ive not had any treatment except the odd steroid injection I have a new fantastic consultant who has said it’s disgusting that at 54 I have not been offered any treatment in 5 years and he was looking into a JAK inhibitor so I’m signed up and awaiting a lifeline at long last. Don’t take no for an answer sit there with arms folded and don’t move unless you get an alternative treatment offered and sod inflammation markers being ok mine often are but I’m on my knees and in so much pain and have red hot joints regardless of blood results. Start being stubborn and you’ll get there it’s not in your mind and you need help I suppose they make you feel like you’re a fraud too. Good luck start shouting x
I was diagnosed with RA in 2006 and later Fibromyalgia. Since then I've been on Sulfasalazine, MTX orally, Hydroxychloroquine, MTX subcutaneously, steroid injections. At the beginning of the year I was so bad I could hardly move, I was put on 4 months of Prednisone, and started on 50mg Benepali. Everything started to ease then I had swelling in my gums and lips, and was told to stop the Benepali as the swelling was the start of an anaphylactic shock!
So I stopped taking it. That was in June. I waited for an emergency appointment from my specialist which was the beginning of September - who was new but who had the same surname as my old Specialist, but he seemed to be saying it wasn't RA it was Fibromyalgia, and he wrote to my Dr for higher pain meds to change brain signals, and said he was discharging me. Now I am on 2700mg of Gabapentin, 600mg Tramadol, 50mg Amitriptyline, 1000mg Naproxen and up to 6000mg of Paracetamol a day. I don't know whether I'm coming or going and I very rarely go out. If I do go out, I have to take a few less tablets a day or so before to be fully aware, then the pain worsens and I suffer from withdrawal symptoms!
So I emailed the Specialist (or a family member emailed on my behalf) asking how I could be on Prednisone and 50mg Benepali in June and nothing after that - and be diagnosed with RA for 12 years and constantly on medication for all of those 12 years, and then be told at the drop of the hat it isn't RA it's Fibromyalgia? He didn't reply. So I emailed again saying I had all my diagnosis letters and medication results, this time I was told he was away, and would reply when he got back. He didn't reply, but I got an appointment for last week. When I saw him, he seemed to me to be back-tracking. He apologised for saying I didn't have RA - he said he hadn't seen me in the past so couldn't diagnose RA however he stuck to his diagnosis of Fibro, so didn't give me any RA meds however, this time he said he would keep me on their list in case I should need to go back?!
So I am at a loss for what to do now? I totally understand what you are going through.
OMG that’s even worse than my experience. Yeah I was sent as an emergency to hospital as I couldn’t move and had hurt my back (turned out it stemmed from hip inflammation) a junior doc that I saw gave me a fibromyalgia diagnosis at that time and now it’s on my records and no-one will remove it. I bet 90% of us with RA have that extra diagnosis gem too.
Yes similar. I'm still waiting to be diagnosed 2 years since first seeing rheumatology. Prescribed MTX injections but haven't taken yet as scared of drug so just manage my pain daily. Having a chillies and ankle scan next week as my feet are very bad. Not sure what the point is. Anyway hope they will soon decide what I have. My symptoms don't really fit into one illess and this is what is confusing them.
Let’s hope this scan forces some action for you. Having said that is is MRI or ultrasound. The latter is not great at any detail. I tore a ligament in my foot and it wasn’t picked up on ultrasound. If it is ultrasound I strongly suggest you tell the radiographer exactly where it hurts so they can spend sometime in that area. If you are not satisfied with the results you should ask them about MRI. It’s just not good enough leaving people in pain without investigating it properly. If you saw some consultant privately they would request an MRI if they couldn’t diagnose your pain. I know it’s easy for me to say but please don’t be scared of Methotrexate, honestly it was my life saver for 6 years. It really turned my life around from pain and disability. It doesn’t work for everyone but it might work for you. Protecting joints from damage is a priority and MXT is capable of doing this. Get someone to sit with you whilst you inject. I didn’t use the injections I had the tablets but often you don’t get the nausea with injections. All the very best
Thank you for putting my mind at rest. My scan an ultrasound is in 2 weeks time. I'm also seeing a foot surgeon (podiatrist ) the day after. Rheumy is wondering if pain is mechanical but I'm starting to think maybe she has been right about her initial diagnosis of Psa as I have now sstarted noticing stiff quite sore knees (1 at a time) and also stiff sore elbow joint and my a chillies are swollen as well as sore. The pain under my heel is so bad I cannot weight bear for long and am sitting on bed with feet raised and writing this. I'm so frustrated as not my scene to sit around. Also rheumy wouldn't give me another steroid shot and has left me in pain which is so bad on their part. Sorry to bore u but guess I'm a bit bored (ha ha)
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MTX and pulmonary fibrosis
chest infection and mtx 
Steroids, MTX & Weight 
Here we go again...mtx
Nothing works.
