What might come next?

Hi all,

I'm wondering what might happen when I visit my rheumatologist in a few weeks. I'm into my first 3 months of 10mg mtx. My RA is still moving around my body. Back in December I had swollen, sore and stiff feet, neck, left shoulder,  wrists, thumbs and fingers. My muscles in my arms are so sore to touch-especially lower

. Apart from my feet feeling less swollen (but skin still sore) everything is the same but I now have sore knees and hips plus right shoulder 😕 I've had about 7 steroid injections and I'm on my 2nd lot of prednisolone.  I've tried Naproxen and Dicloflex.  I take omeprazole every day to line my stomach etc and cocodamol or paracetamol if needed. Might they up my dose  of mtx,  add something else? 

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  • Have you not seen a rheumatologist or rheumy nurse since you started MTX, Moomin? I am in week 5 of taking it, and just had my first check; I have another one in another 6 weeks... All in all, I have had 5 appointments since November, I think.

    I was started on Hydroxy in Nov, then MTX was added in Feb, then - since the Hydrox made psoriasis flare and the itchiness was driving me mad - it was removed last week so I am just on MTX plus my long-standing NSAID, which is Arcoxia/Etoricoxib. I don't take an oral steroid but I've had 2 depo injections. My diagnosis is PsA now rather than RA, so that can alter the choice of drugs, but probably hasn't much at this point, since we're both in the early stages of treatment. It's interesting that I've been given a bigger starting dose of MTX than you - 15mg. When I had my first 6 week review (last week) the rheumy nurse said she was tempted to increase the dose, but would give it a bit longer to make sure I was tolerating it well.

    It doesn't sound like your RA is controlled yet, so at your review, they will probably increase your dose of MTX, and maybe add something else. As you still have pain, I would ask (your GP or your rheumy team) about another NSAID and/or a higher dose.

    By the way, is it definitely the muscles in your lower arms that are hurting, or could it be the tendons? I had terrible pain in various places before treatment, and it turns out it was the tendon attachment points, or entheses. My forearms were among the most painful... Just a thought...

  • Morning, thanks for your reply Flow, you are lucky to have had so many direct consultations with your rheumatologist. What area do you live in- is it the UK? All I can do is to ring a clinical nurse or go to the docs. The doc seems reluctant to do anything new. I've had Naproxen 500mg twice a day at one time (little to no effect) and Dicloflex 50mg twice a day: this seemed a little better,  but not much, however I can't take it like that for more than 2 weeks! Hence back on the prednisolone.

  • Hi Moomin. Yes, I'm in the UK, and this is the NHS, in West Yorks. I haven't felt 'lucky' up til now, because I have fought hard to get diagnosed - it has taken 4 years and I have been discharged after seeing a rheumy at least twice before - but at least now they've decided I've got PsA and I'm on MTX, they're keeping a closer eye on me. I'm sorry you've been left feeling rather unsupported. 

    I would phone the nurse, if I were you, and describe your pain, and the fact that you have *new* pains. Ask for more/better NSAIDs. It really does seem odd to be given so many steroids when you could try another NSAID, and when are on such low doses of MTX. It's horrible to be in constant pain (at least mine feels like it's getting a bit better now)... It might be time for you to be a bit of an impatient patient!

  • Hi flow4,  I didn't mean to be demeaning, calling you "lucky."

    I think I've had RA creeping up for a long time too but have put it down to getting older😆- not one to go to the docs too often. I remember not being able to lift my arm from my shoulder for a week! Doc put that down to tendonitis.  

    I do feel I'm an impatient patient - always at the docs now!! Trouble is they're limited.  I went there a couple of weeks back and he diagnosed me with anxiety! He doesn't know me at all: I'm probably one of the most laid-back people he'll ever meet!

  • Oh Moomin, I'm sorry. You're in a terrible situation - where I was 6 months ago. My tactic was to do my research and make myself as well informed as possible, so I knew what my treatment options were and was 'armed' with info and questions. 

    Tendinitis is part of inflammatory arthritis, you know. Your tendon attachment points - they're called entheses - may also become inflamed when you're flaring. From your description, I think it's quite likely that a large part of your pain is due to enthesopathy, or widespread inflammation at various tendon attachment points. I have this too, and it hurts, and effective treatment with NSAIDs and DMARDs/biologics is essential. It's more associated with other forms of inflammatory arthritis than RA - like spondyloarthritis and PsA - but still definitely worth checking out. This website is very informative: enthesis.info 

    PS. And I know you didn't mean to be demeaning. I didn't think you were! :)

  • I think your Mtx will be increased and or another medication tried.  Do you have an RA nurse you can contact?  I would not, personally, rely on steroids as they only relieve the painful joints but don't have an effect on the progress of RA.  It is not good to be on them for too long.  Do push for better medication and contact the department if it doesn't seem to be working. Ask how long it takes to take effect so, if you are not better contact them again and again as necessary. xx

  • I think your right that it's not good to be on steroids too long. I've been on them for quite awhile but, every time I try to reduce them even by small amount I have more pain & have to increase them again, I have type 2 diabetes as well & I had lost 2 stone & was doing well with my diabetes but, on steroids I'm constantly hungry & not only stopped losing weight but, I have put a few pounds back on, catch 22!

  • Morning jane1976, I agree, to be on any steroids be it injections or oral is not good. The clinical nurse intimated I have osteoporosis from looking at my first x rays which haven't been assessed by the rheumatologist yet as I had them on leaving the hospital when I went to see her!! Btw- well done on your initial weight-loss. I must admit while on steroids etc I weigh myself everyday to keep things in check- I'm getting married in June!!

  • Morning magglen, yes I can ring the clinical nurse during the week,  leave a message, and they'll call me back. Hence her faxing the doc with details of what injections to give me 11th March (last ones) but she can't add to my mtx: either dosage or adding another drug....frustrated or what??? The rheumatologist told me to wait for up to  3 months for the mtx to take effect - 3 months is now and I have to wait until 19th April 😕

  • It sounds quite odd to be left on such a low dose of MTX and then be given steroids etc instead - and 7 injections in a few months?    10mg is a very low dose of MTX, it's basically the lowest effective dose unless there's a reason you can't take more.  So I'd think it's likely that the dose will be increased, and if that doesn't help then other drugs added in or you'll be swapped on to something else. 

    But as Magglen says, do ask what to expect and make sure you know how to get in contact if nothing changes. 

  • Morning helixhelix, thanks for your reply. I don't know why I'm on such a low dose. I'm seropositive CCP >340 and presented initially with extensive swelling and pain in many parts of my body. She said it can take up to 3 months to start to see any changes. ..it's changed,  yes, but it's moving around my body!  I've been back to docs loads, still off work (haven't returned since the start back end of December last year!) and rung the clinical nurse quite a bit too!

  • Well, hopefully your Rheumy will listen to you but you need to prepare because by the sound of it you've still a lot of disease activity going on but it is early days for you so it's not uncommon to need your meds tweaking at this time. I'd write a bullet point list of all your bits that still hurt & anything else of note. It's likely he'll look at all your meds, probably increase your MTX rather than add another DMARD so soon particularly as you're on a reasonably low dose. He may think about changing your NSAID, trying a different type rather than taking two, the diclofenac & naproxen. I've had mine changed 4 or 5 times in 8 years as some target inflammation in a different way. For 4 years I've been prescribed etoricoxib (Arcoxia) a COX-2 which works differently to the two you're prescribed now, it seems to work best of all the others I've tried. The reason I'm thinking this is because of the amount of steriod injections & courses of oral steroids that you've needed in a relatively short period of time since diagnosis, not ideal really & possibly a more effective NSAID could negate the need for them.

    Definitely mention the muscle aches you have, that can be caused by a few things.... a sign that you're somewhat anaemic or a few other things. When you have your drug monitoring bloods done have your FBC counts shown any improvement, particularly your Hb & MCV? I think you've gone through the B12 deficiency question, have you not noticed any change from how you were before? Or, I didn't have this problem but I have read that MTX can cause muscle pain, an early side effect which eases & eventually goes the longer you take so I'd ask if that's what he thinks you're experiencing. Something that might be worth checking are side effects of any other non RD meds you may take for other issues, statins for example can cause muscle pain.

    Has OA ever been mentioned? I'm wondering if you've a touch of that going on as well. Hopefully when he examines you he'll include your knees & hips particularly if they've only been causing problems since you were last seen.

    If you weren't given one at your first appointment ask if there's a Rheumy nurse helpline number or my dept offer me a Rheumy nurse appointment inbetween my Rheumy appointments. It's sent through the post around the 3 month mark though your dept may just leave it open as & when you need them. I can also just ring & ask to be seen if I feel it's necessary, though it's not walk in & often it's been pretty close to my appointment any way so they've just brought my existing appointment forward.

    I hope some of this helps Moomie, but if anything rings a bell & you want to question more I'll help you if I can. If not let us know how you get on. x

  • Morning nomoreheels, thanks for your comprehensive reply! 😆

    I agree,  steroids are not the answer-I think they're trying to limp me up to my next rheumatologist appointment, 19th April.  I didn't take Naproxen and Dicloflex together : one after the other. I looked back at my blood tests - I find them so confusing, but I do get them printed : best to be informed even if I don't understand them! My HB was 13.8 26/2/ and in December was 12.8. My mcv in Feb was 93.9 and Dec was 92.9.  Although my cholesterol is too high - I got it checked after reading it on here - the good cholesterol is high so I'm trying to change that through diet atm. However,  I eat a good diet already - getting that and b12 checked again in May. I do ring the clinical nurse but there's a limit as to what they can do. They haven't bought my appointment forward as my rheumatologist went on holiday and so all appointments got pushed forward! They definitely weren't prepared to see me before the 3 months were up.

    Sounds like all regions are different as to how they respond. 😕

  • Haven't they heard of early aggressive treatment?  No wonder I see so many patients with severe joint deformities.  Disgraceful.  Leaving patients with migratory joint inflammation is very poor.  

  • Good morning coniston11,  thanks for your reply. What is "aggressive treatment? "

    I don't know what I can do, different to what I'm currently doing?

  • You're doing the right thing, so keep pestering your rheumy department and keep notes of how you're feeling. And when you get to see a rheumy sit tight until you've had all your questions answered. 

    Early aggressive treatment means increasing doses quickly, and adding in new drugs quickly as needed so you don't hang around for months with nothing happening.  Hopefully things will change for you at your next appointment. 

  • It might be worth going through and digest what other posters suggested in their helpful posts.  I don't know how different patients receiving different treatments.   I get to hear similar stories from real life people (not on the forum).  May I say, Rheumatology generally sucks.  Sorry to be blunt.   

  • ...apart from seeing a rheumatologist - not sure what else to do? 

  • Hi Moomin8,

    Sorry you are in such an awful place at the moment. Whereabouts in the world are you? 

    Regards

    Beverley (NRAS Helpline)

  • Essex

  • Hi Moomin8,

    You can give the helpline a call to talk things through if you would like. You can call us on:

    0800 298 7650 Monday - Friday 9.30am - 4.30pm

    Beverley

  • Thanks ☺

  • Hi! I was in similar position as you 9 months ago, then they increased my dose to 20mg of MTX and have been fine since bar a bit of morning stiffness in my fingers. I called the nurse though and told her they needed to sort me out! They did so really quickly...

    Good luck! 😃

  • Thanks- I'm off to see the consultant this Tuesday. Although I've rung the clinical nurse quite a bit- they nor the doc will change my mtx dose. I've got severe rib pain too atm but can only take cocodamol 😕

  • Good luck on Tuesday. You may just have to really pester them - squeaky wheel syndrome! X 

  • Thanks MsEm ☺

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