Can anyone shed a glimmer of hope or understanding my way please. So just had my 11th 20mg methotrexate jab and I’m getting worse not better. It seems after 9 shots I thought perhaps a tiny improvement but I seem to have so many places of discomfort. Initially in my left knee , now I feel it’s just everywhere. Spoke to rheumy team so they may try biologics and have managed to move my appointment forward by 3 weeks, so now mid Jan. I’m Seropositive and CcP positive. My knees swelled up last night after sitting at my Christmas party meal with friends. They reduced this morning back to normal. Now just done an hours walk, not too fast and took poles. An hour later the knees have swollen again by another cm or so. What the heck is happening to me? I just don’t get why I seem to have gone to pot?. Rheumy nurse said my RA flares come and go quickly, that’s what consultant has recorded but I wasn’t aware. I can’t live this miserable life! I’m 59, not 99.
I’m so sorry as I know a lot of you are in pain, but I feel there is just no hope. I know the early days are the hardest but when I read your posts all I feel is that is what I too will have.
🥹
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HappyD34
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I’m 71 and not in pain nor have I any swelling. I’ve just made 48 sausage rolls with home made puff pastry (yesterday), the Christmas cake I made a few weeks ago is waiting to be iced and my life is great. And so my message is your life isn’t over and did you nor get a steroid injection to tide you over until the MTX kicks in or have you transferred from pills ? It isn’t always a quick process and it is early days I had a swollen ankle but a steroid injection took it straight down a few years ago on a cruise. These things do happen even when well controlled. It’s a fact of life that RA isn’t the same for everyone but for the huge majority life does go back to normal more or less when it’s controlled. Please be patient and not disappointed but try to keep positive and I believe strongly that patients like you and me who are sero positive and in my case pANCA may well be easier to treat as it’s a clear and definite diagnosis. You might just be having a blip these past few days on the way to control. But if you have to have failed on 2 DMARDs before a biologics can be prescibed, so if it doesn’t work then your one step closer to a biologic on the treatment pathway.
Oh Medway lady, I could hug you , thank you so very much. I’ve been on hydroxy and think went into remission for 4 years and yes had steroid and fluid drained from my knee. You have given me hope and for that I thank yo7. I wish you a wonderful Christmas and happy new year xxx
lol xx I had my Azathyoprine increased yesterday by Consultant , it works well with Etanercept but as I have CKD it gets just a bit more complicated and I believe that some 99 year olds are fitter than a few 29 year olds. They must be doing something right to live to 99 so don’t stop being positive. Enjoy Christmas and keep on going forward, if it doesn’t work then something will. Fingers crossed. Xxx
I am 70yr next year and I have RA for 22 of those years and I still suffer with pain from it. My bloods doesn't show my RA . It's shows my anaemia, which us taking its time to come up to a normal level. My joints are telling me that RA is still rearing its ugly head. Gi e it time darling and one day you will wake up and realise the sun is shining. Hugs darling.xxx
flash flares hate them . Robotic walking after sitting because you’re so stiff. Sudden onset of stiffness for no apparent reason add swelling and fatigue leaves life unpredictable. Hated the fear that came with it because it affected my driving and walking any distance. The fear of not getting back home .
Does it get better? Yes but never really goes . I’m on drug 9 and starting to see a difference. Not my life pre diagnosis but better than it was .
Only thing I can just is when joints flare rest and really pace yourself maybe the hours walk took much ? Eventually you'll find drug that suits you , I've been through many but two weeks ago had first infusion and feel good🤞
Absolutely agree with everything medway lady has said. The thing with RA is to not do too much of anything. So don’t sit for too long, or walk/stand for too long. As you’ve found sitting for the length of a meal has made your knees swell (me too!) get up half way through for a stretch. On a walk (wish I could still do one of those) sit down when you can. Rest is an important part of coping with RA.
Hope you feel better soon, the mtx will kick in soon and one day you will wake up and realise you feel better than you have done for ages.
I would say the mtx isn’t working if you’re up to 11 weeks and no improvement. They’re going to have to try you on something else. Once they find the right drugs you will see an improvement and find life can be improved. I’ve had RA for 29 years and I work full time so there is always hope. You also need to be kind to yourself and maybe an hours walk in one go is too much. When I’m in full flare I wouldn’t be able to walk for 5 minutes let alone an hour. Try to rest up, but also move around so you don’t seize up. And do something to treat yourself, paint your nails, have a nice bath or anything else that makes you feel happy. I hope they sort you out soon.
Keep doing things you like - friends and family time, but tweek those less important things like swimming instead of walking when knees are problematic, maybe wear light knee supports when walking on bad days (I swear by these epitact.co.uk/knee - the blue ones). I love my e-bike and it’s enabled me to keep cycling over the years… I’ve a small wheeled folding one and love bumming around like a kid on a BMX, I’ve even been known to stand on the peddles when bombing down hill (fully helmeted of course now I’m 62!).
Rest, rest and a little more sometimes is needed but even then I keep moving else the joints complain. If you work full time and can afford to drop to a 4 day week do so… the difference for me was amazing and the wages don’t drop too much because some of it was lost in taxes, NI, etc anyway.
OK this next idea carries a ‘she’s lost the plot’ warning!!! I’ve been rehabbing a hip and doing stretching etc and one of the exercises suggested was ‘retro walking’ (walking backwards) for short periods because it stretches the hip flexor. I started in our hallway and then in the pool and have progresses to following the lines of a football pitch in the local park and the side effect is I’m stronger in the knee and managing stairs a lot better - reading up on this says that’s because walking backwards uses leg muscles in a different way and strengthens those supporting the knee - so if your balance is reasonable you could add retro walking to your life but go steady with it.
And by the time you’ve stopped focusing on the above low and behold the right meds combination will have kicked in (well that’s the theory anyway).
Good luck and I hope you have a lovely Christmas time
Ali
Now I’m off to get some hot home made sausage rolls from somewhere 😋
Hi, I have sero positive erosive RA. I take 25 mg methotrexate plus a biologic, Benapali, I also need daily anti inflammatories. I am 70 yr now so have slowed down and also have osteoarthritis now through age and long term damage. I started with this disease in my thirties before many of these drugs were available.
Your consultant will find the right combination for your. Meanwhile be gentle with yourself, low impact excercise only, try swimming or cycling but build up gently. I regularly scuba dived when fitter but I had to cut out long walks due to knee and foot problems. Don’t push yourself to excercise if it leads to inflammation.
Do everything you can to support your body, eat healthily, get plenty of sleep and relaxation. Cut out or down on any bad habits and stress.
Some of my joints would flare very quickly even if I sat doing nothing but chatting with friends. It is scary but don’t despair the right drug combination will be found.
Looking back to thirty five years ago I can see some humour in the predicaments I found myself in with these sudden onset flare ups. My shoulders suddenly swelling were a big issue in those early days, I remember driving for 8 miles in second gear as I couldn’t lift my arm to change up or down whilst on holiday on a Scottish island. Another time alone in a city centre public toilet not being able to pull my knickers up thinking how do I get of this one. I was fine to go out and an hour later really struggling. However it’s all in the past now with my current combination of drugs. Don’t give up, keep on at your consultant, there will be a right combination for you.
I started on Hydroxychloroquin and Methotrexate; after going up to 20 mg Methotrexate injections but still having stiffness and swelling (mostly hands for me) they added Sulphasalzine and happily that did the trick. I've since been able to reduce the Methotrexate dose to 15 mg and still doing ok. It might be that you need something changed or added so keep your team updated and meantime, try to be kind to yourself.
We are all different. I'm 71 and have been diagnosed with RA for eight years. In that first year, it was 13 weeks before the MTX had a discernable effect. It crept up on me slowly and my poor hands, that looked like boxing gloves, gradually became a more normal shape and size and left no deformity. Aren't we lucky to have all these modern drugs?
I was diagnosed when 57 yo , was unable due to my circumstances to start MTX, went from being very active to bed ridden within 3 months. Started my treatment, was told by RA nurse first year is a bit of a roller coaster. So it's a suck and see what works for you.
In my case MTX did a good job, but I got flares due to medication interruptions of surgery, or anti biotics for infection etc. The flares were treated with intra muscular steroid injections or if my knee injection into that.
Having been on MTX 11 years it's now been decided to introduce me to a biologic, which I will start 23rd December.
I get pain at times minimally but I have OA too. We're hoping the biologic will prevent flares and the pain and swelling that comes with a flare.
This might not help you right now..but I was diagnosed at your age.I’m 83 now & apart from all the usual little oldie ailments as soon as I went on a Biologic things took a turn for the very much better.
By the way…by 11th jab…do you mean 11 weeks? If you do……I’m afraid you need to be much more patient…lt can take at least 6 months or longer for Mtx to work its magic!
So mind over matter…don’t put a time on it, but tell yourself better days are coming.
Now that is unfortunate…but as you know you are in the minority. Methotrexate is the Gold Standard DMard… ..it has helped thousands if not millions of people …so by the law of averages it will sadly have not helped every one.
But as I say…being optimistic is the only way to address a new treatment….so I hope whatever you try next is your Magic Pill!
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