Methotrexate and hydroxychloroquine treatment

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Hi, I have been on this treatment since my diagnosis 2 years ago and I am now on the highest dose of methotrexate  This treatment makes me feel terrible and doesn't take the joint pain away but on doctors orders I have kept taking it as my bloods must show that it is doing something. I had a steroid injection when I was first diagnosed  and it completely restored me to my normal self and I have since had another in July which again was fantastic and has lasted until now and all the pains are creeping back!

?Does anyone know if you can treated with low dose steroids  alone for RA as this so far is the only treatment that seems to have a significant beneficial effect for me?

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  • Posted

    Hi Marion

    I can empathise with everything you've written. Over the 4 years I've had this awful disease I've tried every med I've been offered ..with limited success and some serious 'side effects'. However, Steroids alone only 'Mask' the symptoms...the joint damage continues...as I've found to my cost. 

    I've found there's no 'easy option' in the treatment of RA...and everyone's experience is different. Does your Rheumatologist know exactly what side effects you are experiencing?  Sometimes it seems they get too concerned with the blood findings and choose to ignore the potential damage these drugs can do.

    What I can say is that as you progress through the available treatments the likelihood and nature of side effects increases.

    Maybe your Rheumatologist can offer advice on how to manage your current difficulties rather than starting over with different drugs which may cause you worse problems than you have now.

    I hope this helps. Having been on steroids x4 years I've just started a second 'Biologic' med. It carries significant risks...so please consider your current difficulties carefully b4  looking for alternatives.

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  • Posted

    Make sure these medicines dont affect your lever and kidneys atleast every 3 months. If ur doc agrees taper off the doses or divide them into two doses per day. I have taken prednsolon 5mg for joint pain relief one tab a day and later reduced it to half tab a day if needed. Also i am taling folic acid tab 5mg 4 days a week and calcium tabs. Try salmon fish 3 servings a week regular swimming walking and exercises. Good luck
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  • Posted

    I mean have a blood test every 3 months to check ur kidneys and lever
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  • Posted

    Hi Marion, I so empathise with you too.. its so awful at first until your drugs get sorted for you.  I am sure within the next maybe 10 years (oh I so hope) that we can have a simple test to determine which drugs work for which patients.... until then however it is merely trial and error!  I too had a dreadful time with mtx...I tried so very hard and was told just to increase the dose  Dose increases made me feel that it wasnt worth living like this.  That is not a good idea when your body is screaming at your to stop, you and only you know what your body will tolerate!   Please go back, haunt them and state that you cannot take this drug if it makes you feel so ill.  There are others, they want (certainly in NHS England) to give you the cheapest option which is mtx and hydrox also sulphasalazine.  You should also be aware that other countries done things very differently.  In spain I saw a consultant rheumo who gave me steroid injection and a low dose steroid which worked well for me   However there are somany side eteroiffects with corticosteroids long term that I weaned off them back in UK.  I now have a biological drug, one of 3 that I have tried that has worked for me.  I know what you are saying, steroid makes you feel "normal again" and I wanted to just stay with it.  However the injection lasts less and less I have found when you have it regularly... 3 weeks was my max in the end.  In the bad old days everyone seemed to be treated with steroids orally, and joint damage will occur as you can probably see for yourself in the clinics.  My advice is just keep on going back and asking if you can have a biological drug which is either self injected weekly or attend hospital for a monthly infusion.  Read as much as you can, knowledge is always good. You dont say where you live and I know in the USA there are financial issues regarding drugs.  But in fact there are in UK, a NICE objective is to have everyone on the cheapest versions which they state work, I have no of doubt they do for some.... after 6 months of struggling on these drugs they will consent to trying a biological drug.  However some health authorities then only give you 1 or 2 attempts.  I personally would move to an area that works well with the drug regime, a special rheumatology centre as we have to live with this disease and we do actually know best. Also please try acupuncture, craniosacral therapy, meditation, yoga, whatever makes you personally feel better.  Good luck and god bless. 

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  • Posted

    Ask your rheamy if you can take a low does predisolone 5 mg everyday my mum has for over 10 years with no ill costs alongside one dmard drug xx
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  • Posted

    Hello Marion23378,

    i am sorry to here of your pains, i too had RA really bad, if fact i was in a wheel chair , however i too was on this combination and i too was very ill . But due to other complications i had to come of them, The Hydro was making me ill, and i had to come off the Metho because i had to have heavy doses of antibiotics. But i am now back on the Metho and Rohactimeara which i self inject every week. And i have to say i do feel somewhat better, as i have been on steroids now for 2 years it is time to wean of them as long term use can course other problems as i am finding out.

    Stick with it for a while , and try to avoid the steroids they course a multitude of side effects. The steroid injections i received like you gave me instant relief but are only a quick fix and you are only allowed a couple of shots a year.  Talk to your Rhumie about biological injections if the Hydro and Metho's are making you ill.

    But one thing you have to remember , we are all different and medication works well with some but bad with others, and it will be awhile before you and your Rhumie find the right combination that will suit you.  

    Stick with it ,it is a long process but you will get there, just take your pain killers as often as prescribed , and try not to get to down that will make you feel worse (harder said than done i know), i am in my third year with this awful disease and mine came on so aggressive and quick so i am a bit of a mystery, but it can be managed but even i to have a long way to go. i hope i have helped you a little and feel free to chat about Ra any time. Stay well.   Andy. 

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  • Posted

    I think you need to find a doctor who treats the patient and not just the lab results. Something that is typical of something called polymyalgia rheumatica (PMR) is that patients are given a dose of steroids for something else - and all their pains go away. I'm not saying that is what you have - but it is possible to have both PMR and RA and methotrexate does not work for PMR on its own.

    Treesh mentions the side effects of pred. However, there is a recent study that shows that the side effects of the low doses used for PMR do not have as bad side effects as are claimed, typically 10mg or less. So using low dose pred for whatever it is you have, whether it is PMR or RA will not be a problem if you can manage on a low dose.

    If you go to to this thread

    https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

    and look about half way down you will see a link to an article about the paper: Polymyalgia Rheumatica and Steroid Side Effects: New Findings

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