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Newly diagnosed RA - still struggling to take it in

Posted , 8 users are following.

marie2017
marie2017

Hi, I'm new to this forum and thought I'd tell you all a bit about myself, any advice/reassurance would be much appreciated!

I'm 37 yrs old and was diagnosed a couple of months ago. Had been feeling really run down, then practically every joint became sore and swollen and was struggling to even walk. I'm normally fit and well, enjoy jogging etc so this came as a massive shock. We have 2 kids although thankfully they are getting older and don't need lifted any more.

I started Hydroxychloroquine about a month ago, my Consultant (who seems great thankfully) didn't want to start me on Methotrexate right away as I was really run down, ended up with tonsillitis etc.

So I started that this week, not the best run up to Christmas I've ever had but I was in so much agony with my joints I know it's a necessary evil.

Feel quite apprehensive about how I'll tolerate it and worried about the nausea, hair loss etc. I felt quite light headed the day after my first dose and queasy, but ok apart from that. I'm a Nurse actually, so feeling nauseous at work is a bit awkward! I wondered if the nausea is usually only the next day or if you can just be unlucky and it lasts all week?

1 like, 16 replies

16 Replies

  • treezsh
    treezsh marie2017

    Posted

    Hi Marie, sorry to hear about the new diagnosis, it takes somegetting your head around doesnt it? as a physiotherapist used to being fit and welland caring for others,it was a hell of a blow to me too. I see youre a nurse, I really think its hard on us as we see the worst case scenarios!

    firstly you have a good Rheumatologist so grest news. Be aware that some people dont tolerate methotrexate at all, so dont fret if its not for you. I persevered against my gut feeling with 25mg and felt truly dreadful, suck, dizzy, st awful. I also tried sulphasalazine which wasnt any better and eventually was given a biologic drug which worked! I know some folk do ok with these drugs abd I have friend who jeot her symptoms at ay with hydroxy for yeaed, but please speak out if yoyr quality of life is suffering, thereare better drugs which may help you. Rooting for you here in uk, good luck!

    • marie2017
      marie2017 treezsh

      Posted

      Thanks treezsh, sorry to hear you've had a rough time finding the right drug for you. I hope you are still feeling better on it and that you have a great Christmas and New Year.

    • treezsh
      treezsh marie2017

      Posted

      You too Marie, have a very happy christmas and a painfree 2017.

      I am fine now thanks and like steelctygirl, celebrate life each day - or at least try to, but most of all I am grateful for all that I have.

  • steelctygirl
    steelctygirl marie2017

    Posted

    Good day, 69 year old female just diagnosed in April...surprise! Hit me like a ton of bricks. Hospitalized, put on Prednisone, Methotrexate & folic acid. Took 4 full months for meds to kick in. After 5 months pain was back & Plaquine was added. Feel pretty good most of the time...tying to wean from the Prednisone... Lots of brain fog. A good Rheumatologist is key. Just remember everyone reacts to medication differently & listen to your body. If you are tired, rest. This disease is crap but it can be managed. Hope all proceeds well with you. Have a great & pain free holiday!

    • marie2017
      marie2017 steelctygirl

      Posted

      Hi, sorry to hear that you went through all of that, it must have been awful. Good luck with weaning from the Prednisolone, all the best for Christmas and New Year.
    • steelctygirl
      steelctygirl marie2017

      Posted

      In fine Marie thanks for the kind words. I just celebrate everyday.
  • sonya78375
    sonya78375 marie2017

    Posted

    Hi Marie,

    sorry to hear this has happened to you.  It is such a shock and amazing isn't it!  I myself am fairly new, but mine started in February.  I was 39 and two older children myself, also a runner and a surfer, a teacher, and like you it got so bad I could barely walk.  Some days I couldn't drive the car, and I had to get special equipment to help me sit in the bathroom.  But, I am on methotrexate, prednisone, and plaquenil now.  I am back to running and surfing, no way am I as healthy as I was but we are so so lucky to have those meds!  People a few decades ago just went on downhill to disability I think, it's just incredible.  Anyway about the mtx nausea, I had this also, really unpleasant.  I have started injecting mtx and it has fixed the nausea issue so I recommend asking for that option.  I definitely have some difficult side effect issues I'm dealing with, but nothing can really compare to the level of disability without drugs.   Good luck and things WILL get better, they will keep at it with medications until they make it so. 

    • marie2017
      marie2017 sonya78375

      Posted

      Hi Sonya, thanks a lot for this, it's great to hear positive stories like yours and it makes me feel more hopeful. That's fantastic that you are managing to get out running again, it must not be easy.

      It's true that we are lucky to have the treatments available to us that the previous generation didn't. My Mum had to have surgery on both of her wrists before she was even 30. Thankfully she's still doing pretty well in her 60s with no more surgeries so far. I'll definitely ask about the injectable Methotrexate if I don't do well on the tablets, thanks again.

  • pami82
    pami82 marie2017

    Posted

    I was diagnosed last year at this time. No

    t exactly the Christmas present I wanted. I was so worried about taking methotrexate, but I have been on it since February and have had no side effects at all other than slight hair loss. Unfortunately it really hasn't helped. I will be starting on. Biologic soon.

    • marie2017
      marie2017 pami82

      Posted

      Sorry to hear that it hasn't worked for you Pami. Good luck with the Biologic, hope you have a Happy Christmas and your joints aren't too bad.

  • lyn1951
    lyn1951 marie2017

    Posted

    I too have sero negative RA, or as in my case porasis arthiritis, very good rheumo, started me off on 5mg of MTX, am now on 35mg of MTX after 10 years, slowly built up my dosage over thsoe years, as she has been trying to get better control for me, always told me you have to build up your dosage rather than start you on high dose. I always take my medication on Friday night that give me 2 days of recovery time, remember to take your folic acid 24 hours later.  Also my rheumo suggested I take 6000mg of odourless fish oil 2 for breakfast, 2 for lunch and 2 for dinner, is the way I manage them, does help, I notice I am much stiffer and sore if I do not take them, have occasionally gone away to a friends place and missed taking them with us, ohhh do feel the difference. Rheumo also has me on Leflunomide, works wonders at 20mg, but for me had to be dropped to 10mg as 20mg dose caused me to have extreme blood pressure issues, about 2% of the population. disadvantage, loose bowels, so take about 9pm at night and when I get up in the morning whoooosh, but seem OK after that.

    Bilogicals out for me as had a TB test and came back postive, I think from TB prevetative I was given 40 years ago in NZ, rheumo very disappointed for me, other bilogicals out as have had a cancer some years ago now, but she told me not worth the risk. 

    • marie2017
      marie2017 lyn1951

      Posted

      Hi Lynne, thanks for your message. Your Rheumatologist sounds really good, that's a shame that you can't have the Biologics. Thanks for the tip about the fish oil I should try that.

      I'm hoping that I don't need Biologics as I think as a Nurse it would have big implications for my job which is another stress I don't need.

      It's interesting that you've been told to take the folic acid 24hrs after, I was told to take it 4 days later, I wonder if it's because I'm in the UK and the protocol is a bit different? Also the first line seems to be Hydroxychloroquine (they started me on that first) plus Methotrexate. Maybe it's a cost issue because for the NHS here.

  • karen68530
    karen68530 marie2017

    Posted

    So I just received my diagnosis today and still collecting thoughts. There is so much negative discussion and information about Methotrexate that I'm not sure I want to take it. I mean the side effects vs the RA. I am early stages so not a lot of pain, mostly hands, feet, and back. Any thoughts?

    • marie2017
      marie2017 karen68530

      Posted

      Hi Karen, I can totally sympathise with the worries about the Methotrexate. I think it frightened me so much though hardly being able to walk, use my hands etc it's given me the motivation to try it.

      I think the main thing is if the side effects get really bad speak to your Rheumatology team, you can try it by injection and my Doctor has said to me there are different drugs other than Methotrexate I could try.

      I'm just trying to keep in my mind that my main concern is that I don't get deformities etc and I can work, function etc when I'm older. Good luck!

    • Hessie123
      Hessie123 marie2017

      Posted

      Hi Marie

      I was diagnosed a month ago and like you, still trying to take it in. As someone who was always on the health bandwagon, never smoked, Seldom drink - why me I asked myself. I have only just accepted that fact is I have RA it and it won't go away. Time to manage as best I can. These forums are a blessing as reading stories (the uplifting ones) provide such inspiration and hope. I have had a flare in my right foot all throughout this Christmas break, my steroid injection has worn off and the methotrexate has not kicked in. Hope it does soon as back to work next week. Please do keep the faith and remain positive. If I am feeling low it does not help me nor my family. They will stress and worry no end! This diagnosis has impacted my daughter, she worries no end. I therefore have too remain positive as much as possible. I track my days with the RA app (download from the AppStore). When I am feeling disconfort, which I like to refer to as 'ting tangs' days. I try to relax into whatever I am feeling. I stretch, take a bath or shower. Cuddle my beautiful cats. Occupy your mind and try not to focus too much on what your body is doing! Be strong, as said we are fortunate to have the meds. I know it's early days for me but faith not just for myself but for my family will carry me through. Count everyday as a blessing. :-)

    • marie2017
      marie2017 Hessie123

      Posted

      Hi Hessie, sorry to hear you have been having a rough time with your foot, hope things start to improve for you soon. You seem to have a great attitude, as a Nurse I've seen how important that can be in driving people on and I really hope that I can be the same. I find it really useful reading the positive stories too and it gives me hope that things hopefully won't always be so bad.

      Thanks for the tips, esp about the app which I had never heard of! Will definitely check that out. All the best for the New Year when it comes

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