Newly Diagnosed

Hi All

I too am newly diagnosed with RA (October 2014) though my symptoms started in May 2014 and have had a steroid injection in my left hand due to flexor synovitis in the ring finger 6 weeks ago. I was pain free in my left hand 3 days after the steroid injection. However, now the RA has flared up in my right hand, the base of the little finger and my thumb especially which is inflamed and excruciatingly painful throughout the day and night. The diagnosis has been scary. There is so much information on RA that it is difficult to sift out what is useful and what isn't. Also, with some 200 types of RA how does one work out what will or will not work for his/her own particular case. I have watched my mother suffer from this condition for 28 years but have been assured that treatments have improved considerable since that time! I have been started on 200mg hydroxychloroquine (HCQ) daily and have been taking this for a month now. I am torn as to what to do about treatment. Some literature states treat it early and aggressively and my consultant is happy for me to be started on methotrexate with HCQ although he has initially started me on HCQ on it's own. I am aware of some of the side effects of the methotrexate and don't really want to take it (my mother could not tolerate it) - each medication seems to take so long to take effect (3 to 6 months) and I may be taking the methotrexate unnecessarily (it's an unknown). My GP made an interesting comment when he said 'each Consultant has his/her own take on treatment plan' - this complicates things even further as if I was to see another consultant, would he or she suggest a different treatment plan. How would one know which treatment plan to follow especially if RA needs to be treated 'early and aggressively' - the window of opportunity for preventing too much damage is so short (6 months to one year)? I would also like to use topical pain relieving creams made of natural ingredients such as capsaicin, boswellia etc. Does anyone have any thoughts on medication, treatment and natural topicals. Thank you xx

13 Replies

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  • Hiya Mistydawn. Firstly, welcome. I'm sorry you've been diagnosed but you've found right place for support. You're not unusual questioning all, we've all been there. Maybe a good rootle through the NRAS website would answer many of yours nras.uk.org or Arthritis Reasearch UK arthritisresearchuk.org.

    I was diagnosed abroad & started my treatment on HCQ as my Consultant preferred the softer approach with the addition of a course of steroids, an NSAID & pain relief. It got me controlled but became less effective after a year so changed to double therapy with MTX which for some reason wasn't working so the HCQ was withdrawn. I've been taking MTX as my one DMARD for 5 years now & considered controlled with little further erosion. I started on tablets but in spite of an increase of folic acid I continued with nausea so I was changed to injections & folic acid each day except the day I inject & really don't have problems except a little more tired & less appetite the following day. Compared to how I was for 3 months enforced break, which brought home how well it keeps me controlled, I'm willing to put up with one iffy day a week. You're correct, MTX is considered the gold star treatment in the UK as it's considered patients who are treated aggressively with meds have a better prognosis but each Rheumy has their preferred way of treating & much depends on the severity, how early it's diagnosed & the type of disease being treated.

    As much as we're all different so is how we react to any drug & DMARDs etc are no different. Your Rheumy will be able to determine your best options through physical exams, imaging & blood & maybe urine tests so take it step by step & be guided by his/her advice. We are tested regularly on MTX with bloods taken each month for me (drug monitoring blood tests) so anything untoward with blood or liver is picked up quickly & if something's amiss it may be a reduction in dose is needed or a halt to treatment until the reason is found. I've had issues a couple of times in 5 years but still remain on it with good results.

    Anything you wish to use other than what is prescribed your Rheumy should be able to advise on as some can contraindicate, even natural plant based ones so best always to check. The same with any supplements or vitamins. I even asked if it's ok to take daily cod liver oil & was thanked for asking & she thought it a good idea as I also have OA. There's no point undoing the potential of meds & it's possible if you have pain your Rheumy will prescribe an NSAID or pain relief or even a general or specific joint injection or short course of steroids, whichever is preferred for you.

    I hope my experience helps & you receive lots of useful advice.

  • Thank you Nomoreheels. You make some very interesting points. So sorry for all who have RA but nice to know also we are not alone! xx

  • Don't ever think you're alone. We understand so you just pop on when nobody else does! :) if you feel you'd benefit from speaking to someone the NRAS helpline is always there too, if you're in the UK Freephone Helpline: 0800 298 7650

  • Hi Mistydawn,welcome to this site but sorry that you need to join.

    I'm on Hydroxy only, I take 400mg daily. I've been on them now for 2yrs. I to was very worried that I wasn't being given strong enough meds but they are working well for me. I see the consultant every six months now & have either X-rays taken or scans & always blood tests. I trust my consultant & guess that helps.

  • Thank you Caza. Yes, I think you are right, it is all about having that trust. xx

  • Hi there sorry uouve been diagnosed but this is a fab group with great support!

    I was diagnosed in April and put on hydra.... It took about four mints to really kick in and I'm now on 400 too. It's been great!! Rheumy does want me to start mtx tho but only if I feel I need to (he'd prefer I did!) but the pressure isn't on which is nice. I'm still yet to start it! I've been plodding along nicely but it's cos I had had a few flares. To me tho my flares were tolerBle and my bloods improved so I'm waiting till I really need too. Not sure if it's the right thing as I know damage can be done still but we are all different in what we want to do and my rheumy is supportive of my choice at the moment. Hope this helps x

  • Hi Elleonor, thank you. You actually describe how I feel, torn between taking drugs with associated side effects and try to manage the pain without I.e being able to tolerate the pain. However, like you not sure if I will be doing more damage...

  • Hi MistyDawn

    Hi and welcome.

    I've had RA for 21 years and was diagnosed when I was 26. I reckon I had it for about 5 years before that.

    I've always been on treatment even when pregnant. I've tried Capsaicin cream without success but as you will now be aware, with RA it's important to stop the inflammation happening not treat the symptoms so creams and complementary therapies only work along side disease modifying anti rheumatoid drugs ( Dmards). My rheumy is in the "treat early and hard" court but unfortunately I was under someone else for the first 2 years. He was not proactive so I got fed up and got a second opinion. When I first saw the new consultant he was discussed I had been left in such a state and admitted me to hospital there and then. It's very important to have a rheumy you believe in. I am so lucky to be cared for by an amazing team of doctors nurses occupational therapists and podiatrists. Have you had an education session and been referred to an Occupational Rherapist? They teach you about joint protection and will issue hand splints. Like others have suggested I can recommend joining NRAS.

    Best wishes

    KiKi

  • Hi Kikideelili, thank you. So sorry you were messed around for 2 years but thankfully you appear to be in good hands now. I am with you in terms of Stopping the inflammation but I think I had confused myself thinking that was what the capsaicin would do. I was going to try capsaicin instead of naproxen but you have made me realise the difference in function of. Oth.

  • I also meant to say, Kikideelili, no I have not been referred to support teams nor education session - things I will be asking about at my next consultion in 10 days time

  • Hi there,

    Just a couple of things to add to the good stuff others have already said. First off, sadly there's no way right now to find out what will work best for you apart from trial & error. There is research underway but it'll be several years before they'll be able to match your personal RA with the right drug for you. So you do have to try them out. But it's not completely random & dependant on your consultant's particular whims. In the UK most docs follow the NHS map of medicine recommendations

    nhs.uk/Conditions/Arthritis...

    Which should hopefully give you some confidence. And I've become an RA nerd, so have read quite a lot of research papers which do back up the treat early & aggressively approach. But a good consultant will adjust that to your specific needs, so it may well be the best approach for you to start just on Hydroxy and see, if methotrexate alarms you.

    But do have patience - you'll need it with this disease as everything takes a loooonnnggg time. And it's not a given that you'll get joint damage immediately if the RA isn't controlled straight off as quite a lot of people have a fairly non-erosive type, so you don't have to decide this second. The best thing to do from my experience is try to learn about this and then ask your consultant lots of questions. It is a very individual disease so what has proved great for me may not work for you. It took me about a year to get under control (I now take 3 DMARDS) and since then I've been fine, so have hope as well as patience.

  • Thank you all for your very supportive and informative responses.

  • That's nice of you...really no need though, you'll be doing the same yourself & passing your experiences on to us & other new members before long.

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