Why does RA suddenly turn aggressive?

Hi, I am new to this site! I was diagnosed 18 months ago, promptly stuck my head in the sand for a year although was a good patient & took my

Suphalazaline x 4 a day as prescribed. I have to admit being extremely blas'e about the whole RA thing, I could dance, swim, diy, walk miles, despite having osteo in knees, shoulders neck & hips, kept my weight down & started doing our travel bucket list, my thinking being " I am not full blown, can manage the pain from overdoing it, am active & I really don't want to know"! Fast forward 12 months & it's "wham" has turned ultra aggressive almost overnight! What a shock, my hands, feet shoulders in fact everywhere hurting, so bewildering & unexpected? However, before a big holiday down under, a super big shot of steroids given by my consultant helped to get me through. When we returned, I assumed jetlag was making me so ill, but 3 weeks in bed? So ill, I did t even realise what it was, a massive flare & now I have several joints in my hands & wrists destroyed, severe pain in shoulders & feet plus I cannot hold a knife & fork some days despite wearing splints . So debilitating, I cannot wash, bath, cook, do housework & feel my life is over! Have started on Methatrexate nearly 3 weeks ago, was terrified of taking it but felt I had no choice, side effects are minimal, slight queasiness but dreadful throats for which I had blood tests for which showed nothing to worry about. So fellow warriors, could anyone advise when the Methotrexate will have an effect & improve my day to day life? If it does t work what then? Also, does anyone know if the rheumatoid affects joints previously affected by OA? This galloping major of a horrid disease is taking over my life! Sorry for the rant, have just spent another two days in a horrible flare & cannot ratify the "me" person 12 months ago & me now! 💔💔💔

13 Replies

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  • Hi - sorry that you've had such a tough time; but glad you've found us lovely people 😁

    Keep in touch with your rheumatologist and tell them how you're feeling so they can keep your meds appropriate to your symptoms. We all have different meds and react differently to them. Hopefully, your meds will kick in in the next few weeks. You will get your life back - just be patient and kind to yourself x

  • Hi Juliachoo and welcome to the club you never wanted to join. I'm so sorry you are having such a rotten time and wish you better. We are not medically trained here and it would be wrong to give medical advice. Keep your rheumy up to date with your symptoms and, hopefully, the MTX will work its magic very soon. It could take some time for the right combo of meds to be found for you but, thank goodness, there are far more meds available now to keep the ravages of RA from doing any more damage. I'm currently on 25mg MTX, which helped a lot, and have started hydroxychloroquine. Hugs

    Jan

  • Looking back I realise that for several years before diagnosis I did have niggling joints that would come & go that I basically ignored. Then it suddenly took off and in the space of weeks I went from normal to bedbound. Very scary. To me it was a bit like an out of control car accelerating as it went downhill.

    However, there's a happy'ish ending to this tale. Although my RA did suddenly get very aggressive it is also quite obedient and has responded well to the drugs. So I'm back to nearly normal. It did just take a while.

  • The above sounds very similar to my story. Hang on in there Juliachoo!

  • Thank you, how long did it take to feel better? I have been told 6-12 weeks for the MTX to kick in! I seem to go 3 days then completely trash out for 2 days, as if it's following a pattern? The fatigue is awful on top of tremendous aches & pains, I keep having meltdowns, feel as if I can't go on & im living a half life too tired to enjoy. I keep trying to be positive, I really do, but just can't see an end to this awful life limiting situation. Xx

  • The first 9 weeks on MTX were horrible, but then things started to improve. In the end it wasn't enough and I had to add in hydroxy and Sulpha before the disease calmed down. But it did....

  • Hi Juliachoo

    I have been on mtx for 8 weeks and whilst have had minimum pain due to being on steroids I hadn't until mtx been able to get below 10mg of prednisolone without symptoms returning. I am now down to 5mg as of two days...having had two weeks on 7.5mg and no pain as yet so mtx must be doing something good. I am changing to injections this week as some side effects a bit intolerable on my stomach but so far my experience of mtx has been mainly positive. I Had a great fear of symptoms returning as literally over night I couldn't function not being able to brush my hair get up off a chair or dress unaided but thanks to mtx and steroids I am now back at work part time and physically feeling a little better every day. My moods and annoyance at having this disease can rollercoaster but I'm trying to keep a PMA..reading and posting here really helps.

    Good luck to you and I hope mtx kicks in soon.

    Sharon 🌸

  • Mtx can take up to 3 months to work so hang in there. X

  • For me it did nothing at all over the course of 6 months, even at 25 mg. I only saw relief once I added a biologic (Humira) so there was no love lost between me & mtx! I started weaning down my mtx until 13 mths later, I was taking only 2 pills (5 mg) and boy did I learn the hard way that mtx was actually doing something! So, it can take a LONG time.

  • This situation always reminds me of the saying 'it's always darkest before the dawn'. I was possibly as bad as I've ever been after I started MTX, to the point where I was admitted to hospital for 2 weeks after 16 weeks on it. Second day in hospital and i suddenly started feeling a lot better.

    As it turned out I couldn't tolerate the side-effects (of MTX), but that doesn't mean it will be the same for you, lots of us get on just fine with it.

    There is hope, and even if MTX isn't 'the one' there are still many other options.

    Try not to get too despondent, it won't always be this bad.

    🙏🏻

  • Looks like you have lots going on in your life. When RA is the constant companion unfortunately you need to accept this and understand that one main thing that aggravates it is stress. Perhaps too much stress is one of the reasons for your flare🤔Flying is also known to increase RA symptoms. How nice it would be to be able to ignore this unwelcome companion!

  • Methotrexate saved my life! I was like you. But I will say it took longer than 6 months for me to realize that it was helping. I'd say by 9 months I could acknowledge that I was much better. I am so greatful to this drug and there is not one day when I realize where I came from. I am now about to go on benepali because I would say mtx got me 75% there but hoping this biosimiliar will get me to 100%. Am I dreaming?!

  • Thank you so much everyone for your input. Tonight I take my 5th dose of MTX. Despite a few side effects, sore throat, mouth ulcers & lip sore which was sorted by increasing my folic acid to 6 days a week I do feel a bit more mobile than I did so am thinking more positive now thanks again peeps & good luck to you all!!💕

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