Just had a call with rheumatology nurse who says all my pain is caused by mechanical issues and she asked if I have hypermobile joints. So I asked her why I was taking DMARDS for an inflammatory arthritis. She said something vague about "people take mtx for all sorts of reasons including mild inflammation" so I asked her if I should stop taking it and although she said no, and to not think about it as soon as I got off the phone it occurred to me how unbelievably stupid I have been, especially after hearing my GP say that all treatment is target driven.
I feel that the slightest inflammation on a scan means that a consultant is driven to get a patient on medication asap with little follow up. And that is the crux of it, I've had no real follow up after my diagnosis and I feel really silly for having been sucked in.
I'm in pain but I have decided to stop this silly drama of relentless ordering of pills (they only give me a couple of weeks at a time), remembering blood tests when not even rheumatology seem to think I warrant it and so far the combination of hydroxyc. and mtx has done nothing. The nurse even said that the reason it's not working is that the pain is not caused by inflammation.
So that's it - I've taken my last dose and refuse to be part of some half baked target driven experiment.
Don't usually get annoyed but really cross after that call.
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Brychni
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I'm glad you have made a decision , you can always get re referred again if you feel.worse. Good luck with it all, maybe ask about musculo skeletal or orthopaedic help instead?
I have been down that route already. I had a handful of sessions of physio which stopped abruptly as soon as I got the Inflammatory Arthritis diagnosis.
Well take your time , I suppose you could try a few weeks and see how you get on ? It is a big decision but I do feel you've been mulling it over for a while now? If you are worse then dont cut your bridges too soon x
Whoa.....take a minute and breath. I am so sorry that you have had this call that has made you feel cross and no doubt a little perplexed to say the least as to what on earth is going on. While I am sure lots of people have a reliable diagnosis and path of treatment and support throughout. Sadly to say there are times when you just wonder what on earth is going on, there is no clarity and it leads you to think who is making these diagnosis and based on what. I've no pearls of wisdom to offer but just wanted to say after thinking it over would it be an option to get another opinion? Or seek further clarity over exactly what this nurse was meaning and why would she ask you if your joints were hyper mobile as surely they should know this or someone should be looking into this if not? Sadly I do understand your frustration but don't throw the towel in until you have got clarity, maybe put it all in writing and ask them for a timely response. Take care and glad you have let it out xx
Wow. I’m finding it hard to get my head around that...as I’m sure you are. But it does sound familiar. I’ve been told many times over the years my knee issues are mechanical. But when I had a synovectomy the surgeon said it was definitely inflammatory.
I would speak to your GP and also ask to be called by your consultant, not the rheumatology nurse. You need some clarity on this ASAP.
Do you know if you are hypermobile? You can do a quick Beighton score test online as an indicator. I have hypermobile joints and they cause a lot of issues. I also have fibromyalgia, which honestly gives me more issues than the RA a lot of the time.
Like you, I got totally fed up of the “trial and error” approach to treatment. And hearing different things from different people. I was told by a rheumatology nurse that I absolutely did not have fibromyalgia, only for the diagnosis to be confirmed by a consultant 6 months later.
I also dropped out of the “system” - for a decade. But I’ve been in a very bad patch for 6 months and have had to seek medical help again.
I can only imagine how frustrated you are right now. But from someone who has quit the journey, try to see if you can get a few answers from your doctor and consultant before you finally leave.
Hi - both of my children have hyper mobility - my daughter much worse than my son and I am flexible, have flat feet so use the insoles etc, can put my palms down flat on the ground without bending my knees. BUT I haven't had a diagnosis of this and I can't say it interferes or hurts. I haven't seen a consultant since diagnosis.
Many people with connective tissue disease take Hydroxychlorquine and sometimes methotrexate too. But the really important thing that helps pain is physio and mobility. I wonder if that is what the nurse was alluding to?
Auto immune inflammatory disease, MCTD, UCTD all spring to mind. They all cause pain and inflammation, although it is not errosive inflammation like RA. But still extremely painful none the less.
You've got to so what's right for you and I believe that deep down we all know are bodies the best.
Sorry, I'm not being very clear because I'm in a really bad flare at the moment.
Good luck with things. It's a brave decision to make.
Oh the irony! Last week the nurse told me to lay off the exercise as it was obviously causing the pain. I am extremely active but certainly don't over do it. I run a few times a week and go out for an hour at least, each day with the dog and do my strengthening exercises which, after being chucked off the physiotherapy because I was diagnosed with Inflammatory Arthritis, I cobble together from youTube videos . I did what she told me and laid off for a week but elbows pain was off the scale during that time which was why I called back. She said that the way I was describing how the pain presented itself was not associated with inflammatory arthritis.
As you probably know there are certain exercises that are good for hypermobility pain and others that are best avoided. But until you have that diagnosis you really are flying solo. I used to be able to run and do all sorts of excersise but I can only manage walking now and that's only when I'm not flaring.
We're darned if we do and darned if we don't sometimes.
I guess if you come off the hydroxychlorquine and MTX and things get worse then you'll know if they are doing something, although you won't know which one was helping. Could you come off the drugs one at a time?
I know that things deteriorate for me very quickly if I come of my HCQ.
Hi Brychni, not sure if it helps but I suffer so badly in particular with my elbow too (aswell as my shoulder & hamstring) originally the consultant said I had an autoimmune disease & tendonitis and put me on etoricoxib and then hydroxychloroquine, I also had steroid injections in all the areas, the pain eased but came back worse than ever, had another steroid injection in my elbow in November where it was shown to be inflamed on both sides, at the next consultants appointment he examined me and said I also had psoriasis and that 100% had psoriatic arthritis, one of the areas this affects is the enthesis (not sure if I've spelt that right 🙄 ) inflammation of the tendons, he then added MTX into the mixture, pain still continued to get so bad with the addition of a burning sensation that he put me on gabapentin saying it was probably inflammation pressing on a nerve. I too keep thinking at times have they got the diagnosis right as I'm still in pain (not quite as bad but wonder if it's due more to the steroid injection rather than the meds) and my hamstring is worse than ever, I've been on MTX now for 14 weeks. From what I've read, which I have to keep doing to remind myself every now and then, this is quite normal, doesn't help me much or yourself but thought I'd mention it, I don't think any of us fit into a one size fits all box. Just hope that whatever you decide it makes you feel better xx
To be honest I feel the same at times but have continued to take methotrexate. I need 2 lots of blood tests every 3 months because rheumatology dept and GP don’t talk to each other therefore GP says if I don’t have a blood I can’t have methotrexate.
It’s like being piggy in the middle.
I have now stopped the methotrexate and eel so much better. Continue to take benepali.
So far I haven't had any bad effects and for that reason was happy to take it and have an increase but things are getting worse so the nurse is probably right in that it's not working because my issues are not inflammatory as per diagnosis which must have been wrong.
A couple of years ago the consultant I was under at the time mentioned they were not convinced I had RA. So I’m wondering too now. Apart from the MXT sides effects it doesn’t seem to do anything for me whereas benepali does.
I was told that the MSUS was the ulitmate diagnositc tool and couldn't be wrong, but I am beginning to wonder now. I had a long talk with GP this evening and he agreed with me. He also read out my original diagnosis saying my MSUS result was Grade 1 synovitis in both wrists. Of course I have been googling and have read that grade 1 can occur in people who do not have inflammatory disease which makes me think that this target driven approach is all about how easily my inflammation was treated with all these drugs. Although, in this instance it hasn't done a thing, probably because I don't have inflammatory arthritis.
What is the plan the nurse put forward to help with your pain ?
Does the methotrexate and hydroxy make you feel any better at all? I thought the plan from the Drs was to increase the MTX dose, did this ever happen ?
Have you been on steroids? I know you had an injection did this help at all?
Don't go thinking you are a fool, we all put our faith in Drs and it appears some are better than others.
You've said before you've had ultra sounds and they've found inflammation so they've proven you do have inflammation even if your bloods don't show it. It sounds like your diagnosis is flip floppin all over the place and you really need some clarification from your consultant.
Personally I would consult your consultant before giving up any medication (the nurse did say not to stop medication) you've been in alot of pain for quite a time now and it needs addressing. What are you going to gain by giving the medication up now ? Your pain isn't going to go by giving it up if anything it might get worse.
You are absolutely fed right up, its hard to put up with pain for so long you must feel as if you are very alone, you need a proper plan from your medical team and I would contact them again.
I agree. And from someone who did walk away from it all, I can tell you that at times it does get very lonely. I also ended up having to pay to be seen privately now and again (for knee aspirations) - which can be super expensive.
I 1000000% understand how you’re feeling. Disappointed. Fed up. Let down. Ridiculous. Hopeless.
But - trust me - it’s worth trying just one more time to get a little bit of clarity (and hopefully a proper care plan) before you go it alone.
Tell them exactly how you feel. Let them know that it’s not good enough and you’re suffering both physically and emotionally as a result.
If it would help to know more about my experiences off of all DMARDs and out of the “system”, I’m happy to share the highs and lows. Just ask x
Yes increased last week from 10 to 15. No plan, just another telephone appointment next month with the same nurse. I've honestly not seen any improvement with medication. In fact since diagnosis I would say that the disease, whatever it is, is just taking hold. I will just take Naproxen instead from now on.
In your position I would expect the consultant to confirm what the nurse has said before I took drastic action to stop my medication. Please contact the consultant and insist on an urgent appointment to have this clarified and confirmed in writing. Ask what is his/her diagnosis of your condition now and what does he/she recommend for pain management in your situation? If that is not forthcoming then ask your GP to request it.
I asked for an appointment with the consultant the last time I called rheumatology but the only appointment I have is next month, on the phone with the same nurse.I'm looking forward to getting all this s*** out of my system.
I second this. And keep a diary of symptoms if you do come off all the drugs. This can help you properly assess how it’s going - rather than just being happy to be free of the rollercoaster x
Pretty much everything I have complained about in terms of pain, on the forum is what I have told the nurse about. In the beginning it was all about increasing meds and she told me that pain presents itself in different ways. Now she seems to have changed her tune and yesterday said that everything (everything) I had described was not consistent with an inflammatory arthritis. So my question is what pain or damage am I taking the meds for? Especially as they are not working.there are 2 nurses; one is very forthright and can be dismissive and the other is very caring but completely over the top. I really hate to say it but I don't think either have much experience.
Could you get a second opinion from a private rheumie who could get you in sooner? I see Dr. Stephanie Barrett. You can even see her over video or a call. She’s saved me in the NHS system that I found slow, unresponsive, sometimes conflicting advice, and unable to access my consultant.
This is probably a stupid question but have you ever had your RF factor or Anti-CCP levels checked? Although not definitive, these might at least give a slightly clearer indication as to whether you might have RA/RD... or perhaps that was never the question?
I can well understand why you would feel (flipping!) annoyed if it seems you've been prescribed MTX "just for the sake of it" but not sure I would personally feel comfortable forming any such conclusions without taking advice from the rheumatologist who presumably made the initial diagnosis.
Of course, there may be other aspects to your situation of which I am not aware, so please forgive me if my comments are not relevant... and wishing you all the very best whatever you decide... x
yes cass, they are checked (I suppose) every 2 weeks when they do the blood tests for being on MTX. I have never had inflammatory markers. the only thing is Beta GP 2 (or something) it is antiphospholipid antibodies which is very common in people with lupus . She (consultant) asked a lot of questions about this initially. It's also known in to be present in scleroderma and other autoimmune conditions including RA and PsA. She and the nurses also said that negative bloods were irrelevant as they had seen inflammation on the ultrasound and in any case something like 40% of people with confirmed RA never have indications in their blood.So I believed everything they said and duly went on the medications which has done nothing all the while my albeit intermittent pain at times goes through the roof.
I was sat in the car drinking a Costa Coffee in the CoOp car park the other day and the pain in my thumb was so bad I could quite happily have cut it off. I did take a Naproxen but it didn't do much.
My concern about misdiagnosis, or more likely over zealous diagnosis is that GP read out my diagnosis from rheumatology which said Grade 1 synovitis in both wrists. Now, the nurse at the beginning told me this meant early detection of probably RA or PsA but if you google it, Grade 1 doesn't mean inflammatory arthritis at all, apparently healthy people have this too.
All of this has taken over my life and consumes an unhealthily large part of my mental energies; I'm just fed up with it. I've gone through all the emotions since March last year: surprise, disbelief, shock, being positive, trying to get on, managing, getting by, being proactive, struggling, feeling like crap, pain, fear mainly of medication and long term outcomes, doubt and now it's being hinted that they've got it all wrong.
after my second appointment at rheumatology over a year and a half ago, I skipped out happy in the knowledge that I didn't have anything sinister and I went back to the GP and demanded my physiotherapy and advice about self help for painful joints. Even back then pain was at times really bad but I was prepared to manage it with some help and the right pain killers but then I had that scan and it all changed. I feel so drained by it all. I look back at all that positivity I had before diagnosis and wonder where the hell it's all gone. I still do the exercises and eat the right stuff, take the supplements but honestly it's harder to give a toss. And then of course there's the migraines. I just want to put my head in a bush and die.
Sorry to hear that you're (understandably) frustrated and annoyed - good that you're discussing it with your GP. Personally I wouldn't be happy making any decisions without talking to a consultant. The rheumy nurses can be wonderful but they are not qualified to diagnose and I have come across a couple who were not particularly knowledgeable or "engaged"; one was very dismissive of my enquiry but when I pushed, grudgingly agreed to ask the consultant who then backed me up and changed my medication.
You could always seek a second opinion? It is a big decision and if your pain levels increase it may be difficult to get the attention you need, with such long waiting lists everywhere at the moment. I go to a hospital in a neighbouring county as I was so unhappy with my local hospital. Now so glad that I did.
Good for you - taking back control is empowering itself. I haven’t looked back since regularly exercising - lots of low impact cardio workouts, walking and stretching too. Went from pain everyday to pain free. It seemed counterintuitive to exercise when in pain but 6 week pain management therapy turned my life around.
Phone your hospital ask to speak to your rheumatologist’s secretary....you can ask for her email address, correspond this way, cc your GP too, try and stick with the medication until you get the definitive answers you so desperately need.
Hi Brychni, do please also remember that the NRAS Helpline team is there if you want to talk things through with them. Best wishes nras.org.uk/get-support/
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