Newly diagnosed

Hi all

Just been told that I have seronegative inflammatory arthritis and I've just started on the methotrexate and folic acid.

I was floored when they told me the treatment was chemotherapy cos I didn't know that in low doses it could be used for other stuff apart from cancer.

So its taking some getting used to and friends, family and colleagues don't really know what to do to help!

Anyway, thought I'd see how others are doing so hello!

48 Replies

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  • hlo welcome I am new to and have serinegative inflammatory arthritis too. I hope the medication works quickly for you gentle hugs

  • Methotroxate and folic avid are the standard treatment. You will have frequent blood tests to monitor your liver function and blood cells. I used to experience extreme tiredness when taking it. If you work its best to take it on a weekend when at least you can sleep. I was on it a long time and managed alright until this year on it and then had to stop. It's hard to come to terms with and it will dominate your life. Because it is a hidden condition people look at you and think there is nothing the matter. Only you know the aches and stiffness you suffer. If you work make your employer aware of it as you may be off at times with a flare up. This site is great for advice and support because we all are going through it. You may have to make changes to how you do things. Rest when you can. Wishing you the best and know we are all here for you .

  • Chemotherapy just means treating a problem with chemicals, and became associated with cancer because up until fairly recently the main option for cancer patients was surgery. So in many ways all medical drug treatments are chemotherapy. And the potential side effects of other drugs can sounds just as alarming as MTX. So try not to worry about it.

    Bit it is a big step to come to terms with having a chronic disease, so just take it a little bit at a time and make sure you look after yourself.

  • Get the info from the hospital and share that with friends and family so they will have a better understanding of your illness darling.xxxxx

  • Yes it is a shock to the system when you are told about Mtx, but the good news is it'a brilliant treatment for most people.

    I understand what you mean about friends & relatives.......at first they are all sympathy, then as you say they get confused because you don't walk around on sticks! Just let them read this site & they will see there are so many different conditions under the RA label- it's best to just accept that you are the same person ....you just take tablets every week!

    Really hope you get on well with Mtx, but if you don't there are plenty more pills in the sea!

    Get on with your life as well as you can like most of us here do.........it's a cruel blow to accept when you are first diagnosed, but we are lucky it's not years ago when treatment was not nearly as sophisticated as now.

    Good Luck

    AC

  • When I was first diagnosed with RA thirty years ago the only help was pain killers so we've certainly come along way with it thank goodness

  • NSAIDs have been around for over 30 years, but I agree that there are much more effective options now.

  • I'm only 17 years along, but I have just spent today having my second RTX infusion. Lots of lovely people to talk to on their 3rd & 4th infusions....all doing well, so feeling very positive this evening.

    Apparently now it's just waiting game to see if it works for me!

  • Hello sorry you have joined the club. There is a great info sheet on RA Guy which says what RA is on one page, perhaps you could download it and pay it to your friends and family so they have a better understanding of what is wrong.

  • Thank you all so much. It is taking a bit of getting used to. Fatigue is awful and ruddy inconvenient cos it's half term and hubby is away with work till the end of Nov, so booked a short trip to Bruges for offspring and me. The thought of it now fills me with dread!!

  • There's always lots of good advice on this forum and I've always found someone who has experience of the particular problem, query or feelings I'm experiencing. On my current dose of 17.5 mg Mtx I have no side effects at all - that is none that I can directly relate to the pills themselves- although I realise I may be 'lucky'. Tiredness can be a problem - and of course that is even more invisible than other RA symptoms- and rest and pacing yourself as much as possible is the only answer. I was only diagnosed back in Feb this year, after a very sudden onset of extreme joint pain. Lots of people ask how I am now (which is fairly symptom free luckily) but I always say 'Good at the moment thank you but I have still got the condition - and am on ?? pills a day'. I hope you enjoy your holiday - keeping moving as much as possible as well as rest is very important.

  • Have discussed having a steroid shot with your rheumy to help you over this first bit until the meds start working? For many of us it was a life saver!

  • Welcome to the site. You will find lots of help and support on here. Hopefully the mtx will help with the pain and fatigue. It is a goid drug of it works for you but just remember to take yoyr Folic acid as it helps with the side effects. You just need to listen to your body and if it says sleep then have a lie in or an afternoon nap! As for the trip to Bruges just take it easy. X

  • Im really sorry you have had to find us, but glad that you now have. You will find great support and advice here from kind gentle people who understand you. Firstly you should be warned about asking silly questions, THERE ARE NO SILLY QUESTIONS, if it matters to you it matters to us and it maybe you find an aspect that affects you that hasnt been considered. Try to be patient with those around you that you care about and who care about you, they will also be going on a learning curve and may be worried and unsure about whats going on with you. What you mention about chemotherapy is an interesting point in how the word has a powerful effect on those who hear it, most refer to Methotrexate and hydrochloroquine etc as anything but chemotherapy because the shock effect of that phrase goes through people like cold steel. Even the bio therapies which are newer still and much less understood are rarely referred to as the dreaded chemo, all though that is exactly what they are. Words you use and how you use them are quite an interesting point, if you say to someone "ive got Arthritis and the quack has given me tablets" you will find it has a very very different effect to the words"i have contacted an incurrable Auto-immune disease and im starting Chemotherapy". Both are true but one will floor your relatives and friends the other will concern them mildly.

    Be gentle with yourself and consider looking at your diet to at least be sure it is not terribly unhealthy, and allow yourself some rest when you can. You will become an expert on your condition in time, so as well as listening to others listen to yourself, no one knows your body better than you do, try if possible to start "tuning in". I hope some of that helps. Regards Leon.

  • well said Leon - lovely contribution- works 4m too

  • Lovely reply Leon 😊

  • Leon doffs his cap and takes a deep bow

  • Hi I've been on this med for five years it's been a real help like you I too was surprised to know its a form of chemotherapy treatment but I was so bad at the time I didn't care what they gave me as long as it got me back on my feet and independant again I'm going through a very nasty RA flare up again just now not as severe as last time but incapacitating none the less I m thinking the stress of loseing my husband of fifty four years to luekemia in March has triggered this flare off but does not make it any the less painful I go to RA clinic on Thursday for either a new meds or one to work alongside my sulfasalazine to top it up so I'm independent again I have not suffered any side effects to my knowledge on this meds all this time I also have not picked up any extra illness going around due to my immune system being rock bottom on this meds so I only have praise for sulfasalazine (methotrexate ) I wish you all good luck on yours

  • sending u a gentle hug xx Jean

  • Thank you xx it's appreciated

  • Jean is Sulfasalazine the same as Methotrexate? As I had to come of MTX due to liver levels and was put on Sulfasalazine...thought they were different drugs.

  • Katie I rechecked my sulfasalazine meds it is methotrexate in brackets I take two each morning and two each night I also have monthly blood test for checking my liver etc up until May this year I've had no side effects or reacurrance just positive results but since May this year had lots of flare ups in hands shoulders knees and ankles but am hoping this Thursday is the day the RA clinic are going to try me on another med to go with sulfasalazine so I can get my life back on track ,good luck with your alternative meds

  • Hi well guess it must be a similar drug...since coming of MTX I'm on Hydrochloquine 1 twice a day and Sulphasalazine 2 twice daily....like you blood tests monthly...have been ok on both tabs, had a flare in May that needed a 6 week Prednisalone taper, but fingers crossed ( can't actually do that) ..I'm ok...also prescribed vit D (Calcichew).. Still quite new to all this, good luck with your Rheumy, I have an appt with the Rheumy nurse on Friday ....hope you get your life back on track soon xx

  • Kate (& Jeanslmn ), to clear up any confusion, whilst sulfasalazine & methotrexate are both DMARDs they're two completely different meds. Sulfasalazine is taken daily & methotrexate is only to be taken once a week (though I have heard in exceptional circumstances the weekly dose can be split & taken over two days) so it's important to differentiate the two. Hope this helps.

  • Thanks for that nomoreheels xx

  • Nomoreheels ,Thank you for explaining that I thought they were one and the same tablet xx

  • Hi. Glad you've found this site. I'm fairly new to all this too and still trying to get my head around it all. Everyone on this site is so supportive with loads of good advice and experience. So ask anything. Found myself Googling alot in the early stages which isn't always a good thing! My best advice would be to be honest with friends/family etc about how you are feeling and don't be afraid to ask for help if you need it whether it be help with housework or asking friends to take the kids for a couple of hours so you can have a rest. Friends of mine have said they like to feel like they've helped in this way. . The fatigue can be tough. Hope you manage to get some relief soon. x

  • I agree on the help issue I have at last realised that i do need help so I've now got a cleaning lady coming in two and quarter hours a week I've ordered an electric bed as trying to get out of bed in the middle night is nearly impossible due to pain and stiffness also a rise recliner chair because standing up after sitting is also difficult even with riser feet under casters I have been loath to give into the fact I could not manage myself but living alone means I have no option now ,with no family living less than one hundred miles away I so do not want to move house

  • i think others have already covered it but wish you the very best. if friends relatives colleagues want to help they need to understand that you are still you it's just you bl**dy hands / feet or whatever that won't co-operate but the pills shd subdue them a bit. on a practical level i'm revellingthis week in lever taps [that'll sort the wrists .. a bit] and hospital tailormade orthotics to support stupid ankles etc etc..best of luck and helloxx

  • Hello granAmie ,I think lever taps are a great idea will be my next priority mine at moment are so difficult to use along with everything you use your hands for best of luck to you too xx

  • thanks jean - and it was just the tops needed changed in whb, altho kitchen sink needed the whole kibosh replaced - mon tap i mean not thewhole sink lol x

  • Hello there fatankle!

    Sorry to hear of your diagnosis but there again this may well be the start of feeling so much better. The drugs do take a long while to 'kick in' but they can help considerably.

    I wonder what sort of state I'd be in if I'd been having chemotherapy at the level used for cancer for four & a half years? I don't know the answer but I doubt that even happens. Yet I have taken Methotrexate for psoriatic arthritis for that length of time. And I am fit as a flea. Apart from the PsA of course but going by the blood tests etc. as well as how I feel in myself I'd say that my background health is pretty damn good.

    Where drugs are concerned, quantity is very important indeed. Most people would regard one or two paracetamol as very mild medicine, yet in larger amounts it is deadly.

    I hope things go really well for you.

  • Snap...I'm seroneg too! Was diagnosed in March still flaring wrists & ankles. I'm on methotrexate started with 4 months pills had side effects si moved to injecting, still icky and hair loss but better than before.

    We'll get there! ((hugs)) M x

  • Hi! Not feeling icky as such just really pants! Only been on it two weeks but noticing the fatigue. Still in pain with an ankle the size of Wales. Hanging in there though! Lovely to meet you!!

  • Welcome here, there are plenty of people in the hu family to help you . NRAS also have a great , very informative website. Also I found their helpline particularly useful too!

  • Hi I am new to this site too and the thought of having RA is terrifying me. I am waiting to see the Rheumatologist at the hospital, so I am not on any medication yet. I feel so frightened for the future too, especially as I have no family. Looking through the posts on this website it is good to find so much support "out there"....

  • Hey! You're not far behind me in the whole diagnosis thing.. so we can do this together!

  • Yes we sure can...that would be good. I have had a good night's sleep and feel fine this morning, although feet and hands ache a bit, as well as elbows. Just arrived at work and getting stuck in so as to keep my mind occupied. Let me know how you are doing too. :-)

  • LD1954 hello I'm new to this site too but am finding the kindness of the others comments on here very enlightening because some are very informative on RA I know exactly how you must be feeling I felt the same five years ago on my first visit to RA clinic but to be honest I was in so much pain and discomfort I wouldn't have cared what they gave me as long as they made the pain go away and I got back on my feet again I'm feeling apprehensive about my visit to RA clinic this coming Wednesday as my original consultant has now retired he was extremely good at his job was in the top ten consultants of RA in uk in last two months I've seen two new ones neither made feel any confidence in them they were much younger more abrupt not a very nice attitude as my old one had ,they said I would be put on an extra med to help sulfasalazine but never mentioned exactly which or what one Wednesday it will be the special medication unit so a nurse not a doctor I hope she explain it fully to me first

  • Hi there, and thanks for your reply. Let me know how things go on Wednesday. Take care.

  • Yeah - They kind of forget to tell you that, but here is one thing to keep in mind. Cancer doses are 500 mg, where you are taking 15 or 20... So, yes, it is a chemo drug, but not as strong as you would get with cancer. As for the family, maybe suggest they carry some things for you, or help you clean house or with shopping or yard work. And for them to believe you when you tell them how bad you feel, how much you hurt or how tired you are, even when you look "fine" or even "great".. ;-)

  • Hi. I'm also newly diagnosed. Wasn't fond of going on the methotrexate as work colleagues hadn't been very ill on it but rheumatoid consultant explained it was important. They put me on combination treatment with hydroxychloroquinine and sulfasalazine but unfortunately I've reacted to those.

    I am on a build up dose of methotrexate. 10mg x 2 weeks. -5mg X 2 weeks then on to maintenance dose of 20mg. Been on it two weeks, not even on my maintenance dose and I've gone down with the flu. I used to pride myself on my great immune system because I never caught anything. My consultant said, exactly....that was my problem, it was so good it was killing me :(

  • I know it's a bit after the horse has bolted Gretchy but do ask at your GP surgery if you can be added to the list for the annual flu jab, generally they will do so under 'medical conditions'. I hope it doesn't hit you hard & you start to feel better soon.

  • Your post is like if I had written it myself 5 months ago. Now I can tell you Methotrexate is a gift from heaven. Continue with your treatment and close to your rheumatologist!

  • Hello ☺️ I'm also new here but was diagnosed with seronegative Inflammatory arthritis (most likely RA) and hyper mobility just yesterday. Reading through all the positive comments but can't help feel gutted 😔 My husband is trying to be supportive but (and I'm sure it's just me being sensitive) I can't help feeling he is being a bit dismissive.

    I start Sulfasalizine tomorrow and titrate the dose up over the next few weeks, I also have IBS and apparently this is gentler on the gut and i can get injectable methotrexate fortnightly does that sound right?

    I'm nervous about feeling icky over the next wee while and work (haven't told anyone at work yet, although they do know I was getting tests).

    was quite upset when I got home from my consultant and discussed it with the husband in the evening, my kids noticed (why do they never stay in bed?!) didn't really know what if anything to say to them, I wear wrist splints so they are use to mummy's limitations but they are perceptive!

    Sorry that was a longer "hello, me too' than I intended 💕

  • Hi Triple07

    It's so strange, I have the same thoughts about my hubby, too. Honestly, I think they're just uber worried and don't really know what to do. Mine's 6000 miles away till the end of Nov, and, unlike previous trips (we both have to travel with our jobs) this time I really wish he was here - but I also know that he'd be sod all use if he was😁

    I've had to go on tablets for indigestion caused by the MTX but I honestly haven't had the nausea. I am, however, totally wrecked! No energy at all. And there's nothing to be done for that. I'm told it wears off after a while.

    I was taking our daughter on a day trip to Belgium today, but sooo tired I had to cancel 😞

    Daughter's been brilliant though.

    Stay in touch and let me know how you get on.

    Hugs x

  • Aww Sorry you had to cancel your trip, I guess as parents it's not normal for us to put ourselves first but needs must.

    I probably just need a while to get my head round the diagnosis , I genuinely thought I was going to get told it was carpel tunnel and flat feet and bursitis etc but to be honest it all adds up and is pretty much a classic presentation, I guess I was just in denial a bit.

    Anyway I'm in to work on Friday and will tell my boss, fingers crossed she will be understanding...

    ...actually I'm not going to cross those fingers, that hurts 😂

  • Yes, I had it in my head that was carpal tunnel... didn't see this coming! It does take some getting used to. Change in diet and this fatigue, etc etc. Good luck with your boss.

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